Sally's Life

Dear Mr Direct Payments Financial Assessment Authority (Copy to Social Worker)

2012-01-22T15:53:00.005Z

Supportive Lion, Wilton Parish Church, Wiltshire

Dear Mr Financial Assessment Authority (Copy to Social Worker for info)

RE: FINANCIAL REASSESSMENT FOR DIRECT PAYMENTS

Thank you for appreciating the medical necessity of postponing my appointment with a member of your team to 2 February 2012 despite the requirement for this Financial Reassessment to be completed within fourteen working days of 2 June 2011.

I am confident my SocialWorker has made you aware of my circumstances, not least the delays to completion of disabled facilities and adaptations to my home. However I was distressed at your threat to withdraw the Direct Payment service I receive if I do not comply with your requirements:

" ... I have now discussed the case with your Social worker, her Team Manager and the Locality Manager for North Disabilityshire and they are all in agreement that if the Financial Assessment is not completed by the date of the proposed visit ... we will give you notice that your Direct Payment will be withdrawn ... "

It is not in my nature to be a person who avoids their oblligations, commitments or responsibilities. It is distressing to be addressed as such a person and, sternly, told of the persons who are lined up to reinforce that view of my nature.

It is the nature of my progressive disease, ill health and resulting disabilities, to interrupt, slow down and make difficult, my day to day living. Your department may as well address that sterness to those impairments and disabilities, though I doubt they will retreat, no matter how stern your wording may be.

It has always been my intention to fulfil my legal obligations first, so far as my cognitive dysfunction will allow, before I have any fun, time with friends, social inclusion, but I am ruled, indeed regulated, by the needs of my ill health and resulting disabilities, which I have no choice but to submit to.

I do not need stern letters to be persuaded of my obligations. Threatening to withdraw services and thereby making my specialised staff redundant is not helpful in my documented medical conditions.

I expect there is legislation that allows services to be withdrawn if a service user refuses to comply with the requirements of your department, but I do not expect it applies where a service user is unable, dis-abled through ill health and resulting circumstances beyond their control, to comply.

Yours truly

Sally Leo

Head of Disability Options to Say No,

North Disability Shire.

The Sky is Falling In (DLA and Benefits reform)

2012-01-09T11:06:00.006Z

IF the sky were falling in that catastrophe would affect 100% of the population, including lazy and/or mendacious MPs, government ministers, bankers and other ankers, together with those readers of the daily 'popular' 'newspapers' (sic) who read inaccurate alarmist stories (yes, stories not facts) and think that those of us dependent on benefits are somehow taking advantage of the system, to their detriment. As if we had the spare energy to defeat the mighty machine of DWP/HMRC and all its tentacles.

So, the sky is not falling in and we, the sick and impaired, are on our own.

Some capable sick and impaired people are DOING A LOT ABOUT IT, so sincere thanks from this old(ish) bird who can't do much at present, except report it here. Tweeting is beyond my capacity. (Pun intended.) Please click on the link below, follow their links, and do what you can to STOP THE SKY FALLING IN !

http://www.thebroken of britain.blogspot.com

While I sleep

2012-01-06T18:43:00.003Z

While I sleep

The Badger recreates her world in mine.

Prevented by barriers placed on her pathways,

She makes new problems of maintenance for me.

Thwarted only by pliable plastics

Her paws shift wood and brick and flint,

Shoulders prise open fences;

Thin green screening mesh

And bin liners of leaf mould are ignored.

She grunts in my sleep while, undisturbed,

I dream of hares and tortoises.

Christmas Day - Lunchtime

2011-12-25T18:40:00.007Z

Hare in Winter ~ Deirdre Mackay

www.beamers-designs.co.uk

Christmas Day ~ Lunchtime

The Rook said: Its very quiet today

as the Partridge rurred its way

over the hedge, leisurely.

Pheasants, left over from the shoot,

took time to survey their surroundings

and the Swan swept on.

I think, said another Rook,

this is the day they all stay away.

Its quiet in the wood, the Badger's out,

the Fox is unharried

and the Hares are square dancing.

(Its the day the Mother remembered the Christ Child

as she cooked lunch

and they all stayed away.)

I know, said the Rook, today is the day

they all remember the Light that we acknowledge every day.

Today, then, we can say

Goodwill to all the race of Man.

Silk Road Hares - Jan Wheeler

www.beamers-designs.co.uk

Elderflower Cordial tweeked and without thunderbugs !

2011-06-04T21:14:00.004+01:00

This is my second batch of elderflower cordial and my second blog about the process. My first blog - Cordial It Is Not last week (scroll down, or link on right), was lack of citric acid, and Charles kindly commented on his own experience of being taken for a mad bomber. Anyway, the citric acid arrived via the postman and off I trundled on the Tramper (link on list on right) and gathered forty heads of elderflowers. Brought them home in a large plastic bag which I deposited, opened, in the kitchen and made a cup of tea and sat outside under the oak tree gazing over my borrowed landscape of fields down to the river, listening to the peacocks, house martins and lambs, none of which were mine, so borrowed soundscape too. Bliss.

This blog post is also my instructions to myself on how to manage the whole process, a Tired Person's recipe and instruction, for next summer, when Lupus cogdysfunk'd I will probably have forgotten what a success this was, and just how much sugar solution I got on the door handles, keyboard, floor and clothes.

So back to work .... back to a kitchen window black with thunderbugs .... eeek .... (sorted) ... now to deal with the flower heads. And I rinsed them, which dealt with most of the thunderbugs, and dealt with most of the flavour also, as the rinsing water was a stunning bright green with floating thunderbugs, so I threw it away ! Mistake. Anyway, twenty four hours later the steeped flowerheads were drained through muslin which caught all the leftover thunderbugs as well as the flowerhead mash. Although the resulting cordial was lovely, it tasted of lemons as much as of elderflowers.

So the answer to thunderbugs is ...

Firstly RINSE the flowerheads carefully, individually, time-consumingly, in a litre of filtered water in a clean glass bowl, dunk and vigorously swish around and drain in a colander placed over another bowl to catch the precious drips. The water will gradually turn bright green - this is from the pollen in the flowers. This is the flavour source. It is Precious.

Secondly STRAIN the bright green liquid through a 90cm square of muslin folded into quarters, that is four thicknesses, held in a seive, into a clean glass bowl. All the thunderbugs will be held back from the liquid in the muslin. Keep this liquid. Rinse off the muslin and bid goodbye to the bugs as they swirl down the plug hole. Launder the muslin without detergent and air dry indoors.

Thirdly ADD this litre of precious liquid to the cooled sugar water to make up the total liquid required by your recipe. It will have turned from bright green to muddy yellowy green with a sediment, as in the bowl in the picture above, so stir the sediment before pouring the liquid.

Fourthly FREEZE the resulting cordial, using plastic water or juice bottles and plastic ice cube making bags for individual portions (2 cubes to a glass of water). Freezing solves all the possible problems of moulds and explosions. It may cause problems of chemical transfer from the plastic into the liquid, but I am trusting to the food grade of the plastics I use.

This was a successful answer to the thunderbug problem for me ... only 1, yes 1, thunderbug escaped into the liquid, and was easily fished out.

This is my tweeked recipe for 40 elderflower heads to make 3 litres of cordial. I don't like to use so much sugar and maybe next summer I will experiment with less, but until then:

2 of 90cm x 90cm muslin squares

2 large glass bowls, a very large pan with lid, large seive, colander, large wooden spoon,

40 elderflower heads, size of your hand, or equivalent in smaller heads

3 litres filtered water

2 of 500 gram packs of fairtrade white sugar

200 grams of unrefined golden sugar

88 grams Citric Acid powder (order online unless you want to be treated as a potential threat)

2 large oranges

5 lemons unwaxed

First Day:

Bring 2.5 litres water to boil in large pan. Remove from heat, add sugars, stir to dissolve with wooden spoon. Cover pan with clean cloth, leave to cool. Collect elderflowers. Rinse and strain as above. When the sugar water is cold, stir in citric acid to dissolve. Add the pollen water and sediment. Wash the fruit and thickly pare the lemons, add to sugar water, then top and tail, discard these ends and then finely slice the fruits and pop into the sugar water. Top and tail the oranges, thinly slice and add to sugar water. Stir. Add the elderflower heads a few at a time and stir round. The pan should be full. Bring up a few fruit slices to sit on top of the elderflower heads to keep them in the liquid. Cover the pan and set aside somewhere cool for 24 hours, stirring occasionally and carefully to minimise splashes of sticky sugar water.

Next Day:

Put the clean muslin unfolded in sieve over a large glass bowl, the muslin to overlap the bowl.

Carefully tip the large pan of elderflower heads and fruit in the sugar water over the muslin in the sieve. Gather up the corners of the muslin to form a bag in the sieve, lift sieve clear off the cordial in the bowl, and let all the liquid drip through the muslin, squeezing the last drips.

This is your cordial. This liquid feels like water when splashed, but it is very sticky and gets everywhere. Cover the liquid while you deal with the elderflower head mash; into a plastic bag, tied to keep out wasps, binned. Rinse the muslin to remove anything left, then launder as above.

Then jug the cordial into your preferred storage, plastic bottles (not more than two-thirds full) or ice cube bags, and freeze immediately, saving some to drink immediately. Defrost bottles overnight in the fridge, keep refrigerated and drink within twenty four hours ... this should prevent any moulds forming and prevent anyone blaming me if they ingest toxins. If frozen in ice cube bags, just pop two frozen cubes of cordial into a glass and fill with cold water still or sparkling, or white wine if your medication allows alcohol.

Enjoy. Preferably outside in a warm breeze. In the tree shade if you too have Lupus.

Retirement

2011-05-31T22:15:00.014+01:00

This time last year this elderly lady came to stay with me for her retirement. Although she had known me for the whole of her adult life, it had been as one of a crowd ... she knew my scent and my voice, so when I collected her one early morning in late May, she was trusting, but very unsure of where I was taking her. Being bathed on arrival didn't help. But her first breakfast was her favourite raw meat and biscuit and so began the trust in this stage of life, gradually finding her place was as top dog in a household of none, and a companion in me who understood her needs and who spoke a language familiar to her.

Confidence grew indoors and out. Initially she believed I was emptying this little space to provide a dark shelter for her, but my priority was sorting out the stationery cupboard, which she turned into a game, the first return of her sense of humour.

The grass is greener over the other side of the hedge, and the scents stronger, and this day she discovered that front paws on the low wall gave her a little height advantage. One evening, out for the last piddle, she began the tone of bark that was calling my attention to something, but I only had vision, not her scenting nose, so I could make nothing of it. The following morning's walk along the far bottom of that field brought us both into the scent line of a fox, and I'm sure that, at that point, she looked round and up at me, saying: Told You !

This bush flowered for the first time yesterday which, at the end of May, is a whole month earlier in the summer than when I took the photo at the end of June last year. Then the fresh dusty concrete wheelchair accessible path held little scent, but owl droppings under the oak tree were always worth a sniff.

High summer passed quickly in a succession of her first discovering and then eating wild strawberries, gooseberries, redcurrants and finally apples. The berries being carefully and daintily picked off the bushes within reach of her teeth, the high apples waiting for them to drop. First the green hard ones, just testing really to see if they were ready to eat as they fell, then testing her patience until they got bigger and tastier, finally the excitement of finding a new fall each morning and getting to them before I did. Daily walks became, for her, slow progressions, as I stopped the Tramper at each location of blackberries along the hedgerows, her views across the fields stopped by the by-now high maize crop, her quiet waiting rewarded with a handful of the gathered fruits.

She discovered beer, in glass jars, left on the ground by the Morris Dancers one evening when we returned home from a long cool late walk, and found them in the pub car park. She was used to men standing around drinking and talking, but when they started jingling and jumping and flinging handkerchiefs around, she climbed up and hid on the Tramper footbed, safe between my knees to peer round the Tramper's front to see what all the noise was about.

Over the summer she got fatter, lost her trim waist, enjoyed toast crusts after my breakfast, vegetable leftovers from my supper and further supplemented her diet of meat, biscuit and berries with crumbs of anything dropped during food prep in the kitchen.

With the autumn came longer exercise, walking up behind her friends but never letting me out of her sight, secured by the extending lead to me, and secure in the knowledge that she would be going home with me to her comfortable retirement home.

An early fall of winter snow brought treasure to the surface - those forgotten apples that were covered by autumn leaf fall with their scent lost amongst all the other rotting vegetation. Now they were resurrected when the snow killed all distracting scents excepting those of the soft ruddy brown of well matured squishy apples - another feast.

Winter weather did not bother her and she shook off all attempts to put a waxed dog jacket on her back, even one memorable day when the temperature stayed at minus ten degrees centigrade all morning. That day I only managed to exercise her for twenty minutes on the Tramper down frozen lanes before I was seriously concerned at my fingers' chances of remaining attached to my palms. The gloves off just for a second to hand the camera to a passing villager who couldn't believe his eyes, never having seen a Tramper before.

During her retirement with me came something I hadn't expected, even though I'd had dogs before - the hound dialogue; over the months we passed from my use of words she was used to obeying (LEAVE IT !), onto her first days of learning: Go To Sleep; Toast !, and other such important information, through to one day I was thinking of calling her and she came back through the door and looked at me: asking, replying, as she did when I called her in the tone that was calling for fun, or an apple. What Mum ?

She died in January, at a very good age. Trusting still.

Cordial it is not - Elder is my favourite tipple

2011-05-24T17:38:00.018+01:00

www.gastronomydomine.com

PRE-SCRIPT ~ There have been visitors to this blog page using the search term: thunder bugs in my elderflower cordial. Me Too !! So, after experimenting today (a week after the post below) I have the answer. So, please read this post, then go to the new post on my blog page for an update at www.lifeintheshire.blogspot.com Its easy to deal with thunderbugs in your precious elderflower cordial !

The elder is in flower, basking in the sun, the lemons and oranges are waiting, the Tramper is ready to go and .... Boots the Chemist are not being cordial towards their customers - down here in deepest Dorset they have taken over all the local independent chemist shops.

This really is the last straw ~ Boots reacting locally to considerations global, such as bombs and illegal drugs. Boots have taken away one of the many benefits of living rurally, that of independent shops. There used to be three chemists in the local town; all three have been taken over by Boots, who closed one. None of the Boots stores in any of the local towns I have tried have any stocks of a necessary ingredient to enjoying summer in the countryside.

Independent shops have local independent knowledge and are independent of the views and stock ordering protocols of large conglomerates. Local independent chemists know that as soon as the elder is in flower, locals will want to buy CITRIC ACID ... not for bombs (well, maybe bathbombs !) or for cutting in with heroin or cocaine, but for making non-alcoholic summer in a bottle.

Would I have been suspected of such nefarious activity, wheeling in with my smart sun hat and latest bit of jewellery ? (what a fab excuse to indulge in sparkly stuff ... Medic Alert !) A local independent chemist would have been able to judge my reason and sold me for the princely sum of £1.19 a little pot of this essential ingredient of Elderflower Cordial.

Buggeh Boots. Online it is. LINK

Just don't let it rain and ruin the elder flowers until I have harvested my 30 heads of creamy sumptiousness. We need the rain, oh how we need it and my water butt is drained dry so the beans and courgettes are having to put up with tap water, as are the birds in the bird bath, but rain will ruin the flowers, so please not rain just yet. Until the postman has delivered the means to the end result and I am sipping the heavenly cordial. So, actually, thinking again, not let it rain during the day, only overnight, as sipping inside out of the rain is not quite the same as sipping outside in the dappled shade amongst the flowers and birdsong.

For a recipe click on this LINK or go to www.bbc.co.uk/food/recipes/elderflowercordial_6465

Abused, Again, and too late for BADD

2011-05-05T22:36:00.007+01:00

Two streams of thought from diverse sources have informed today's experience of abuse.

Firstly, the esteemed Charles Dawson, recalling his original blog, commented on the Goldfish's BADD 2011 post: " ... the abuse ... was nothing to do with you. The need to abuse is projected out of the personality of the abuser, onto the nearest available victim. You just happened to be there, in the line of fire."

Secondly, comments on tv programme from Lottery winners: that their good fortune attracts hatred, in all its diverse forms; threats, violence, robbery, vandalism, from neighbours and others in the lottery winners' communities.

No, I haven't won the lottery, well not literally although metaphorically, sat in my garden enjoying the view, I feel as though I have - I am exceedingly fortunate - not lucky because my good fortune has been hard won and earned, but relieved and at peace that finally, some eight years after first requesting wheelchair access into my home, I have achieved it. Thanks in no small part to the hard work by my social worker in finding a shared ownership housing and support organisation that could help me achieve it.

My lovely new wheelchair accessible home was hard won, and support from fellow bloggers through 2006/7/8/9 was an important part of my ability to cope and continue, eventually assisted by a Local Government Ombudsman investigation, to Fight the Good Fight, when no-one should have to fight against disabilist policies by budget fixated negative so and so's.

Anyway, today I discovered I have a jealous neighbour. Last summer I politely asked my neighbour to cut back their boundary leylandii hedge which is doing what leylandii hedges do. Eight feet high and venturing over a metre deep into my vegetable plot. The neighbour agreed, but didn't. Last week I asked the shared owner/housing and support organisation to act on my behalf and ask the neighbour to cut back their boundary hedge. Yesterday they sent me a copy of their letterheaded letter sent to my neighbour. Today, I learn, my neighbour rang the housing and support organisation that provides the lease for my shared ownership wheelchair accessible home and spouted confabulations and outright lies (and I say that in full confidence without the need to add 'allegedly' anywhere in that sentence). First abuse.

Second Abuse: I returned home late this afternoon, after the second of three medical appointments this week, to find a scary email from the housing officer at the housing and support organisation, listing as if fact, all the lies (and confabulations *) spouted by my neighbour today and warning me that such behaviour on my part is in breach of my shared-ownership lease.

Charles was spot on about the First Abuse: projected out from my neighbour's personality. The Second Abuse was the worst. I felt my home was threatened. My foundation. My Anchor. My Safe Haven. Because firstly the housing officer had given my neighbour the opportunity to abuse me then, secondly, passed the abuse on and built on it.

I have referred the housing officer's actions to the Director of the housing and support organisation, and called my social worker for advice. And taken prescribed drugs to stop the fear. And PTSD.

Tomorrow is another day and after the third and final medical appointment of this week, if the weather is as good as today, I will again take my mobility vehicle and camera down the meadow to the mighty river (pic above) and say to myself: This too will pass. Hopefully.

On a lighter note, which comparatively it is ... when I left home for the medical appointment, I left my OT in charge of a gaggle of men installing an automatic system on my wheelchair access door ... auto open/close/lock/unlock. This is the third day they have been invading my peace and sanity, hacking at my new front door and pristine walls and scuff-free threshold to fit it, but my OT was confident all would be well. As I turned onto the drive I said to my PA: two plips and I am in .... first plip (remote control) to open the vehicle rear tailgate to let me out in the wheelchair; second plip (remote control) to open the new automatic front door to let me into the house. Ha !

Another thing to sort out tomorrow and the wheelchair stayed in the vehicle. It is indeed fortunate that first; as I now have two front doors I could use the other one and second, that I can walk into the house !!!

I think its that which really gets to my neighbour.

(Mimi Cummins's blog for BADD and following comments consider the use of assistive technology and what I refer to as 'walking-wheelies')

(* Collins Dictionary - Confabulation: Psychiatry. to replace the gaps left by a disorder of memory with imaginary remembered experiences, consistently believed to be true. )

Disablism - BADD says it all

2011-05-01T14:16:00.005+01:00

Lots of thoughts, but not a lot of brain this month /this time round ... but others have, so join me in spending the day visiting.

For the brain tired, to ease your navigation, click on this coloured LINK

For previous BADD years' posts, click on the link word BADD below.

Thank you for visiting.

In the Blues

2011-04-23T21:06:00.009+01:00

Usually, the blues get to me from time to time - many reasons, all familiar, common even. Each one particular to me, and probably you too. They are different to the panics, when I fear it will all come tumbling down, because it hasn't now for quite some time and, so far as I can tell, it won't, because of all the its I know, none of them are precarious. Music and poetry are useful carriers, and I have in the past let Schubert's songs to carry me along. He knew his panics too, and knew they were coming to pass. Poetry carries deep feelings for other bloggers and sometimes, jolts in time, they resonate with ours. Thank you RM.

Easter has been tricky, a reminder of the darkness before the light ... though it now feels more mature to celebrate the light as our forebears did ... leaving behind the darker side of Christian beliefs, in company with those who believe its just short of a couple of millennia since the life of Christ was grafted onto older beliefs. Celebrated in my post Happy Eostre which I would now love to relive, so here to click on is the LINK. The comments to that from blogging friends are a joy.

This Easter I seem to have bypassed the sorrow and emptiness and leapt straight into a resurrecting spring. The weather, this glorious unprecedented warmth and light and joyfulness, carries me along. With the Tramper. Into these blues ... and out of the other sort.

(Old Blogger used to let me insert pictures wherever in my text I wanted to ... not now ! Does anyone know a way round current Blogger slapping them at the top, and not letting me click and drag to where I want them to be ?)

Testing out the Tramper's capabilities in prep for a planned eight mile walk with friends on another of these repeating bank holidays. The Tramper's manufacturers (click on this LINK) say thirty miles on flat tarmac, and I have whipped in for three hours over dry plough and through bosky glades, so there is some confidence to setting out today, alone, at the Tramper's Class 2 limit of 4 miles per hour - which I reckon is a good comparison to fit friends' walking pace. So today, for three and a half hours I circled high droves and blue woods, flicked the switch to 8mph for a quick dash past the smelly farmyard, then slowed and kept out of the sun along long rides through thinned plantations. Oh, bliss it was. Then I found myself at the end of a long walk I used to do with Airedale Sally, thrilled to be there again after fifteen years, forgetting the gate, the forbidding gate with a view of my WAV - it took me another half an hour to get back onto the bridleway that returned me, gateless, safely to my starting point.

Safety is good.

SCDS - Superior Semi-Circular Canal Dehiscence Syndrome

2011-02-25T17:58:00.004Z

Natural sounds are not a problem, so the ripples of the river over a long forgotten ford, patterns of sound and light, are pleasant.

Man made sounds are a huge problem ... plastic bags rustling, air-con, traffic, crowds, amplified sound - but not acoustic instruments, so the orchestra causes no pain in the auditorium, until the cymbals clash.

Yes, its real. Its not me, its not emotional, stress-related, neurotic, histrionic or hypochondrial.

Its a named and recognised (since 1998) medical condition.

Its located in the inner ear, the superior semi circular canal - and I think I am right in saying that 'dehiscence' means thinning or holes in the bone, that surround the organ/s of the inner ear. Due to that dehiscence, sound travels inter-cranially - direct into the brain cavity, not via the proper channels - is it any wonder I get brain tired ! My poor brain ! And SCDS incorporates 'Autophony' and Tullio's Phenomenon.

What are REAL and ACKNOWLEDGED now are the sound-related problems that I have had since the early 1990s - that stopped me circle dancing, swimming in indoor pools (so not much swimming at all in the UK where its to to to c - c - cold to swim in outside pools most of year and in the sea rarely) ... and eventually singing in choirs. All noise related inhibitors to my favourite leisure pursuits, but I could still work full time, in a quiet environment. But then I got .... (or rather, I had a flare of what I was born with, but no one knew it .... ) LUPUS.

Its the Lupus - SLE - Systemic Lupus Erythematosus - that brought me the electric wheels, which was a great help with the SCDS / Meniere's Syndrome /Tullio's Phenomenon - related dizzyness.

My Goodness Me - what a list of ailments. But, actually, life is pretty good.

I have a lovely accessible home in a lovely part of the world and good friends, and just enough support from social services to make the necessary bits of life (not forgetting housework) work.

There are links on the list on the right of this page to support and information. If you too have any of these medical issues, and the links don't answer your questions, leave a comment below and I may be able to suggest further sources of information.

Sally's Syndrome exists !

2011-02-06T13:57:00.011Z

No, not a weird sea creature, but the canals and labyrinths of the inner ear, showing Sally's Syndrome, except I will never get to call it that, as it has been named already, but only as recently as 1998, first described by Dr Lloyd B Minor of John Hopkins University, Baltimore, USA.

Found by me after an incubation period of only one month, since my writing on 6 January 'In the Days Before We Knew ...', (click on post title on right hand side) when I bemoaned the fact that many crips have their own peculiar impairments and symptoms, unknown to the medics or anyone else. Writing that blog page must have set in motion some percolation of information through the universe, such that I have found a clinical description of one of my weirdest symptoms, which will profoundly alter the care I get from the medical profession, and support my care and occupational therapy assessments by social services.

Fanfare of trumpets, whoops of joy, general throwing of hats into the air ...

Superior Canal Dehiscence Syndrome with Autophony and Tullio's Phenomenon.

Thanks to The Meniere's Society's publication SPIN

Edition No. 70 Winter 2009 page 5 ~ Systemic Lupus as a known cause of Meniere's Syndrome

Edition No. 72 Summer 2010 page 14 ~ Tullio's Phenomenon

and also

Wikipedia page on Superior Canal Dehiscence Syndrome modified 8 January 2011

and also the Diagram of Superior Canal Dehiscence with Tullio, or alternatively, with Autophony, (I think I have both !) which with Adobe Flash Player turns into lovely coloured moving pictures, courtesy of Google Images at Delaware Biotechnology Institute, Michael Teizido MD. http://www.dbi.udel.edu/MichaelTeizidoMD/SCDS/html.

(No, again, I cannot get that link to work.)

It has taken me four days to bring together all the various sources of information, dating from the Osteopath's description in 1993, through ENT, Rheumatology and Osteopathy investigations and consultations, and collate them into a coherent description of my symptom history.

None of this would have been possible, but for the three monthly treatment with 120mg of DepoMedrone pinged into my butt from a huge needle a week ago by the Rheumatologist. Within seven to ten days, it clears my brain fog, returns suppleness to my hands, and gives me the physical capacity to sift through documents, the cognitive capacity to read them, then the energy to sit upright at my desk and type it all up.

So I have written to my General Practitioner (GP), my Rheumatologist, my Doctor of Osteopathy, my social worker and my Occuptional Therapist, with eleven pages of supporting documentation, and closed with these remarks:

It is important and necessary to my well being that these symptoms are diagnosed and named. This is in order that I have the various diagnoses in writing for evidence for the many times I have to prove my disabilities for state benefit and grant purposes and investigations, to social services (DCC Adult and Community Services) and various other agencies and charities. State benefits and grants provide for my home, my wheelchairs and my wheelchair accessible vehicle. Social services support is essential for my day to day living.

I think my GP will be the lead in progressing this, and when I see her next week I will ask for a referral to an Otolaryngologist.

Progress !

TIME TO TAKE TIME TO TAKE ACTION

2011-01-19T14:26:00.004Z

Please click on this link The Broken of Britain

and add your voice to the outrage at this Government's determination to

remove essential financial support to people with impairments.

The Government think taking money from the dis-abled is the easy option

to address the deficit in the country's budget,

because they believe we don't have a sufficiently loud voice to stop them.

Then please go this PETITION calling for the Government to keep

Disability Living Allowance mobility component

for people living in residential care homes.

Thank You

You are invited to leave a comment that

you have been able to add your voice

to these essential campaigns and petitions

THE ECONOMICS OF BEING ALLOWED TO LIVE - Disability Living Allowance

2011-01-14T10:41:00.010Z

Kaliya Franklin in the Guardian writes to draw attention to the proposed cut to the Mobility Component of Disability Living Allowance for people living in care homes.

So, what if you are not disabled, you don't know anyone disabled, you will never be disabled, disability does not cross you path, your day, your life. The cuts are beginning to hit you so you think they should be fairly distributed to all, including the disabled; you think cuts to disability living allowance is only fair.

You are not alone. The Prime Minister thinks like you.

Yesterday in Parliament during PMQ - Prime Minister's Question Time - when he is questioned by other Parliamentarians - your MP and mine - on policy decisions or other things that go wrong - he made the telling comment on WHY the mobility component of Disability Living Allowance is going to be stopped YES STOPPED, REMOVED, DISALLOWED, to people living in care homes. He said (not verbatim) that as people in hospital don't get the mobility component of Disabled LIVING Allowance, it is right that people in care homes will be brought into line with that, and NO LONGER get the mobility component of Disability LIVING Allowance.

Beyond belief. That it has come to this.

It is such a huge infringement on human rights, that I can only think that all others who have NOT protested (be they MPs, or everyday workers, mums, brothers, friends, colleagues) must surely think, like the Prime Minister and all the civil servants who prepared his policy and his PMQ answers, that people in care homes are being looked after so why do they need the money.

Well, obviously it is not obvious to them, but it is to me, as I am disabled and my understanding is:

That people in hospital are patients, and are there because they are ill and, hopefully, being treated for that illness. Over simplification, not covering all circumstances, I know.

That people in care homes are there because they need daily care, beyond what can be provided safely or economically, in their own home. They do have a life beyond the care home. They are not inpatients, they are residents. In order to live that life, they need the mobility component of DLA - in order to get out and live their life as they wish to live it, within the restrictions inherent in their impairment, but NOT restricted, not dis-abled from social inclusion by lack of money to pay for the means of getting out ... the accessible taxi, the wheelchair accessible vehicle, whatever they need and need to pay for - with the mobility component of their DLA.

I have a tiny glimmer of hope - THE LAW - HUMAN RIGHTS - the legal right, the right in law, to a socially inclusive life.

Hopefully the legal eagles will swoop down on this. Other MPs will speak out. IMPORTANTLY - YOU will read this and do something to support the right of people in care homes to have a life outside of that circumstance of their daily living. You will click on this LINK and respond.

If this prejudiced ignorant change in policy is over-turned then the right to go for a 'walk' on the beach, in the rain, will still be possible - thanks to the mobility component of Disability Living Allowance !

POSTSCRIPT:

Brian Rix, President of Mencap, House of Lords, writes in Saturday 15 January Guardian letters:

" I was shocked when it was announced that the disability living allowance mobility component is to be removed from those in residential care. ...

... My co-chair of the all-party parliamentary group on learning disability, Tom Clarke MP, led the "impassioned debate in Westminster Hall before Christmas [in which] MPs from all parties spoke of constituents who were terrified of being robbed of their freedom".

Despite the overwhelming evidence of the general disquiet at this malign proposal, the prime minister - during this week's prime minister's questions - appeared totally ignorant of the true situation. Answering Tom Greatrex MP, he said: "Disability allowance is an important issue and our intention is very clear; there should be a similar approach for people who are in hospital and for people who are in residential care homes. This is what we intend to do, and I will make sure it happens."

But do they not recognise [writes Brian Rix] that when you are in hospital you are ill and extremely unlikely to be allowed out to go shopping, for example ? ... Even those with profound and multiple disabilities want to have their freedom, but they are not ill they are disabled. The government may argue that their health needs are a problem, but they are not confined to their beds in an NHS hospital. They are free souls who wish to live their lives like others. To those who claim "we are all in this together", I would suggest this is being economical with the actualite."

In the days before we knew ...

2011-01-06T20:53:00.008Z

Do you wash your eyebrows ? Or your eyelashes ?

Thanks to medical equipment magic, we now have the technology to increase the power of microscopes so that they, we, see the little creatures that live on the hairs of our eyebrows and eyelashes, eating up all the dead bits of skin cells and such (and poo-ing out the parts they can't digest ?)! I don't know if we yet have the technological power to see the little creatures that live on the little creatures that live on our eyelashes, eating up all the bigger little creatures' bits of scurf, dead skin cells etc.

They don't wash off ! The microscopes can see the little hooks they have on their legs, clinging to our eyelashes. Enough. Don't give it another thought.

Isn't technology wonderful. Recently NASA have been working with a UK Uni (Bristol I think) and have discovered, (probably to do with space walking or some other such that I am sure wheelchair users would enjoy), that the inner ear doesn't only let us know where we are in space (up, down, leaning sideways, etc) but also that the inner ear controls the blood flow to the brain. "That's it !" I shouted, to myself: "That's my brain-shut-down thingy."

That was my eureka moment. And my GP's, who was equally jaw-droppingly impressed when I made the link with my weird medical condition that doesn't yet have a name, but will someday.

Background: my Lupus-related health problems are typical for this multi-system disease ... including pain and weakness and inflammation in soft tissues, and joint pains, and profound fatigue, and, and, and, .... and cognitive dysfunction ... and ..., well the weekly low-dose chemotherapy (Methotrexate) that I have been taking for the last thirteen years doesn't help much on two days a week when the side effects take over, but it helps the other five days a week, so I accept it. And fortunately I have a condition that systemic steroid injections really do help. So I carry on.

Until someone turns on a vacuum cleaner/drill/air-con/mobile phone trill within a few feet of me, ... and ... I look as if I am having a stroke. Facial muscles droop, speech disappears, slump in the wheelchair, peripheral vision gone, hands spasm into a claw .... oh yes, its quite dramatic, so I do try to avoid being in such situations and stopping the source of the environmental trigger to this reaction, and getting away from the source really really quickly (electric wheels essential) in order to recover. And the best way to recover, for me, is to quickly gulp down in strong mouthfulls, cold water, to release the block to the blood flow to the brain. Someone has to hold the drink for me. Then within a few minutes blood flow returns to the brain, face comes back, eyes come back, speech returns, hands and slumped body back on line and ready for action. Yup, I'm fine thank you. Onwards.

For years, I have been the one to label this odd reaction to noise and vibration - when, I have been told, I appear to be having stroke - as medical not psychological, not neurotic but medical, not attention-seeking but medical, mechanical-medical as opposed to psychosomatic. Real. Brain overloaded, getting wrong signals from the inner ear, can't cope ... shut down.

Over the years of following other bloggers I have found that many many people with impairments have struggled to get support; practical, financial, medical, because their impairment has not be named, cannot be classified, does not fit a label already existing in the medical dictionary. Therefore it cannot exist. And the person carrying the burden of the very real impairment, symptoms, pain, agony, distress, dysfunction, has to find their own way to survive.

Sometimes we are fortunate to find a medic who goes against this tide of negativity, and supports the patient, even though they do not have a label that can be written into the appropriate box in the forms.

My GP is one such star. She suggested I wrote to the BMJ British Medical Journal, 'Patients' Perspective' to describe my experience, and suggest the connection between Lupus, Meniere's and men in space/NASA's research. I will, when I have the energy and brain power to put it together much much better than I am doing here today.

My Doctor of Osteopathy also gets a gold star, even though he was the second one to trigger this reaction in me, because he worked out that it must be related to blood flow to the brain, and recommended strong swallowing to release the blood flow back to the brain. It works.

The first one to trigger this reaction to me, was the medic who tested me for Meniere's Disease. Squirting water into the ear under pressure. I had my weird reaction a few minutes later, on my own in the waiting room, and was ignored by the embarrassed staff, who left me to it for the half an hour it took me to recover. I was very distressed. In the middle of it I could not speak, see beyond a few inches, or move, but I was aware and could hear everything, so knew I could not be dead, yet.

Later at the hospital consultation with the test results, I was told that as I didn't have the reaction that would have proved M's Disease the ENT chap said there was nothing wrong with me and my reaction afterwards was none of their concern and not related. Wrong. I have subsequently decided, and my GP agrees, that I don't have M's Disease, but I do have Meniere's Syndrome, further complicated by Lupus. That the tinnitus I have had since my teens shows something not working properly in the inner ear, and in recent years is further complicated by the Systemic Lupus. So I have dizziness, tinnitus, noise recruitment, and hyperaccussis. I don't have deafness or the 'drop-attacks' that impinge on the lives of people with Meniere's Disease. And I do feel some responsibility for the tinnitus ... rock band 'Yes' loudly in Sheffield City Hall when I was about 17 and 3/4 years old ... forty years ago !!!

All this meandering comes back to the things the medics don't yet know, like the knowledge we have now, but didn't have before microscopes, about the creatures living on our eyelashes. Someday they will have a name for our weird and wonderful conditions that only we have, peculiar to our selves. Our various conditions will eventually, following research and more progress in medical diagnostic equipment, have a name they can pin on us. Then they will be much happier to take us seriously, and find a way of helping us.

Some day technology will catch up with our differing unique individual peculiar impairments and our realities will become real in the medical dictionaries and there will be a relevant box to tick on the numerous forms to be filled. Then mine too will get written-up and recognised and when it does I would like it to be formally named as Sally's Syndome.

In the meantime, Onwards !

From That to This - Landlords - Good and Evil

2010-12-31T20:44:00.006Z

In the local and national news, the search for the strangler of a young woman in Bristol and whether the police will Charge her landlord, currently being held for questioning. Startling, the victim's flat is a replica of my Bump's while she was in that locality, as a post-grad. Not the same flat, just the same speculative builder's architect around the turn of the century developing that part of hilly Bristol. Gave me a jolt all the same.

When the young woman was first reported missing and her parents believed her abducted I said, to myself, The Landlord Did It !

POSTSCRIPT: 22 April 2011 ~ the victim's landlord, who was not charged and is reported to have had no involvement in the case has, I understand, today begun a legal process to sue the newspapers who speculated on his involvement in the murder. I am happy to record this on my blogpage.

My first experience of a Landlord was when I left home at just eighteen to work in London, in the early 70s. I found a bedsit in Putney in a house of 5 bedsits let only to single females, and the landlord lived on the ground floor. And did odd things - placed mirrors in odd places, such as opposite when one sat on the loo. Little things that were dismissed as dodgy, discussed amongst us single female tenants, nothing done about it. You didn't, then. Just like you didn't do anything when touched-up on the Underground, but accepted it, as part of life as female, then. Then the Landlord converted a disused back room adjacent to the garden door, into a laundry-cum-shower room. Again, mirrors in odd places - so full view of oneself in the shower. We females at the time felt he had gone too far this time .... the automatic washing machine was the enticement to use the other new facilities he had provided ... so we felt uncomfortable, and although we didn't talk about it specifically, I do not think I was the only one unsure of what spy-holes or two way mirrors he could have installed, and so he was cross we didn't use the newly provided shower and automatic washing machine, preferring the safety of the dark walk to the local launderette.

Decades later, looking for a flat to rent for my Bump in Bristol, I recalled my London landlord experience when Bump and I were interviewed by all sorts of dodgy seeming Landlords, usually dodgy in financial terms, or just plain dirty and dangerous - the rooms available for rental I mean. So we found a female landlady, not resident, with a flat with its own separate outside staircase and front door. Fairly safe. And she was. It worked well, and the architecture was lovely inside and out, just like that flat being shown on the tv news this evening. But my Bump could just as easily have found herself as his tenant. And the tv news are linking with an unsolved murder by strangulation of a young woman in the same area thirty years ago.

From That to This - from a Landlord experienced as Evil (allegedly) to the Good Landlord I have now in a shared ownership scheme for people with disabilities - and safe, despite the current cobbled-together government's dismantling of financial support for the impaired and dis-abled. Safe for existing scheme members that is. The shared-ownership scheme is no longer available to new applicants due to government cuts in mortgage support. That is evil in the wrong it does to the prospects for other impaired and dis-abled-by-society people.

The oak tree in the snow pictured above is on my garden boundary hedge of blackthorn, sloe and bramble. It has been there about 200 years and the hedge is an old boundary, separating occasionally flooded grazing from apple orchards. Just bungalows now, but the oak is a safe home to a thousand insects and many birds. If I can't afford to have the hedge cut this spring, and instead let it flower then fruit, I could be drinking sloe gin next Christmas !

This Christmas I was thinking of those parents in Bristol whose Christmasses will never be celebratory ever again.

CAROLS and FAIRY CAKES

2010-12-20T17:10:00.004Z

Yesterday is probably going to be the only way and day I celebrate the feast of Christmas this year, unless we have another miracle .... a thaw !

So, to be able to sit in the Choir, singing for the parish church Carol Service, surrounded by Victorian wall mosaic in pink and gold, candle light and children's voices, was a blessing I was very aware of.

Waitrose couldn't deliver Christmas (as in that episode in "The Good Life"), and tomorrow's girly Christmas lunch impossibly impassable. Bump away with her Beloved on the 25th, and my nearest family claimable for Christmas are a day away in Yorkshire.

We have ten inches of wonderful whiteness and that's a lot for the middle bit of the south west (and I remember '63 in Derbyshire when I was only ten and the white stuff was higher than my wellies), so the countryside has ground to a halt. Also, since moving I have been declassified to a 'C' road, rather than the snow-ploughed and gritted Emergency Services route between major routes, that I was before.

Which is a blessing in disguise, as my Tramper was the only vehicle on the white road today, so I could photograph the white hill.

The Fairy Cake ? I left the Carol Service before sociable Tea and Cakes, courtesy of the presiding Priest, but was offered a plate of fairy cakes as I passed through the door to the snow ... which was wonderful, because as any concert-in-a-church-goer will know ... often there is a plate to Collect Money from you as you leave ... and being very-low-income-because-dis, it grates. So, I was blessed to be able to collect a fairy cake on my way out and, managing the hat, scarf, gloves, stick, handbag, the only place to put it was balanced on top of the handbag, and off I trotted. (Yes, trotted, as thanks to loads of drugs and better health, I can walk short distances, hence being able to sit in the Choir. Even when everyone else stood.)

So, balancing my Fairy Cake, I walked down the church path ...

... thinking about it later, did I brush off a possible introduction? I am so used to being guarded and shrugging-off flirtatious comments from men using the excuse of my visible disability to patronise (which annoys their wives, further isolating me from social interaction) that I had a quick response back ... but the well-balanced fairy cake could have been placed there by the Christmas Wishes Fairy to grant him an opportunity to talk to that reasonably attractive (yes, give me time and a plan and I can manage that) single 50-something lady who is also that mad-bat that trundles through the village byways on a scooter, dragged along by a beagle.

Did I ?

Sally sallies forth

2010-11-21T17:30:00.003Z

Where to begin ? .... at the End ! The Beginning is in all my previous posts.

Here I am, settled almost, in my lovely new home. This the dawn view from the garden.

Blessed.

As I sit here, chewing on Pontefract Cakes, the beagle is snoring and all is well.

Blogging Against Disablism Day 1st May 2009

2009-05-01T09:03:00.002+01:00

Today is

BLOGGING AGAINST DISABLISM DAY

1st MAY 2009

COURTESY OF THE WONDERFUL 'GOLDFISH'

http://www.blobolobolob.blogspot.com/2009/05/blogging-against-disablism-day-2009.html

The Things That I Can Think of That I Know

2009-03-24T21:08:00.007Z

That the Local Government Ombudsman brokered a Local Settlement ... which Dorset County Council have yet to fulfil.

That it was agreed that I should have a Facilitator/Advocate to assist me to achieve disabled facilities and adaptations. Sorted. Beginning to work well.

That the Police Community Support Team are effective and do support single disabled females who are threatened (allegedly) by their neighbours (because I achieved a Tree Protection Order on their tree in their field) and who are frightened by their neighbours (allegedly) taunting them (me) with an air rifle, pointed at me sat in my wheelchair in my garden. In this idylic (allegedly)quiet little Dorset village.

That a couple of police in full body armour and armed with handcuffs and truncheons, knocking on the neighbour's door unannounced, and telling them in no uncertain terms, that threats and intimidation to anyone, including single disabled females, is likely to lead to police action -is effective. No matter their protests that they did not do anything.

That I then thought "to hell with this, I don't have to put up with it" ... and put my house up for sale.

That I then secretly thought: Thanks to those neighbours from hell, I have police evidence and social services support for a necessary house move. Secret no more now is it !

That I could not afford from my sale to buy a bungalow more suited to disabled facilities and adaptations, in a safe quiet community, closer to friends and family.

That the Housing Corporation extended the scheme for Open Market Homebuy shared ownership to physically disabled people through specialist housing assocations, and that those of us too ill to work and dependent on means tested benefits, get the rent and service charge to the housing association, paid through benefit entitlement.

That that is how it ought to be in a civilised society.

That social services staff have a job to do in assessing the needs of peoples' disabilities, and they fill their days doing that. And their weeks. And their months. And their years. That is what they are employed to do. That it takes weeks, months, years, to achieve assessments, and to achieve the disabled facilities and adaptations the service user is needing, does not seem to be relevant to their career.

That I have been waiting since 26 September 2008 for my (new, senior, Team Leading) Occupational Therapist to discuss with me the draft assessment she produced and I sent back with necessary amendments.

That I have sold my home of eighteen years, subject to contract. That I don't mind now, really.

That I have bought the bungalow of my dreams, subject to contract. (oh god, the wall paper; oh god, the carpets; oh god, the kitchen, oh for fx sake a lavender bathroom, oh nevermind...)

That the District Council Environmental Services department are very good at their jobs, and have (there goes my Lupus brain again, loosing words, cogdysfunk'd again).... referenced ? No., sentenced ? No., ..... sent....referred... Yes that's it .... Referred me to the project managers, who will carry out the technical survey of my dream bungalow, next week, towards work on disabled facilities and adaptations. Yes, next week. Because they are more efficient than social services.

That I can bypass (allegedly) the County Hall Major Adaptations Panel (who ((allegedly)) messed it all up in the first place which resulted in my decision to request the Local Government Ombudsman investigate the delays) (too many paranthesis/ees)...) because under the rules for shared ownership housing I can have a specialist mortgage (interest paid through Income Support) to pay for the stuff necessary to my disabilities that the District Council's Disabled Facilities Grant (up to £25,000) cannot fund, so stuff the Major Adaptations Panel and their illegal (allegedly) decision not to fund necessary adaptations.

That under new DFG (keep up) legislation, wheelchair access now has to be provided not just indoors (and into the indoors) but in the garden as well.... and not just wheelchair access to the garden, but to the appurtenances of the garden.

That an appurtenance is not just the rotary laundry dryer, or the shed, or the wastebins or water butt ... but also an appurtenance is the enjoyment of the garden, access to the apple tree ... the veg plot .... yeah, right, I will believe that when it happens.

That this fabulous user-friendly, diversity-supporting, housing association, let their shared ownership tenants keep a pet, or a live-in lover ! Sorry ... that tenants can choose who they live with ... a dog, a chicken or a sex-slave. Soorry, this is getting worse !!!. Get a grip.

That life does get better. Slowly.

That my Bump (keep up - she's now 30!) is happy.

That it is ten years since my health, and my life, began to get worse.

That it is eight years since I first asked social services for wheelchair access into my home.

That it might just happen.

Allegedly.

That I miss blogging, but can't do it as I once did.

Until I get disabled facilities and adaptations.

Disablism Killed the Muse !

2008-05-01T11:26:00.002+01:00

The Goldfish's Blogging Against Disablism Day 2008

has arrived.

CLICK HERE

TO GO STRAIGHT TO GOLDFISH'S page for links to

104 POSTS so far and counting ....

I began blogging way back when, when I needed an outlet for the creative thoughts that were swarming around in my head. That is how I began, tentatively, to give voice to the Muse. Then unexpectedly it changed; Charles Dawson, Blogging Mone, Spotted Elle and Goldfish arrived: WOW I didn't expect that - a response, and over the months others visited and are famously blogging along here and at the BBC's OUCH. It became, happily and entertainingly a crip-blogging world. More recent blogging friends comment and keep in touch and are linked over to the right. (If I stop to put in links, as I should and could but can't get my cogdysfunk'd head round just now, I would loose this thread of thought.)

So my blog became, unexpectedly, a daily source of support from other crip bloggers. I heartily recommend it. Without blogging friends I would have reached deeper despair long before I was able to see that the only way to get the help I needed to fight this dis-ablist society, to get disabled (sic) facilities and adaptations to my home, requested of the powers that be in 2003, agreed with them in 2005, not yet begun; was to contact the Local Government Ombudsman and let that investigation sort out Social Services.

I do not need to recap the handicapping capped budgets at County Hall here today. But I do need to record that without the support of blogging and blogging friends and contacts from all parts of the blogging world, I would not have felt it was right to fight the Good Fight.

I am not alone in fighting the Good Fight - the Seahorse (linked in the panel on the right) is treading a different route to a similar goal - and you may be too, or may be thinking it might come to that, or even you may be thinking that you are not entitled to help. How would you know ? If you do know and you are fighting, then blog it, or get in touch here by a comment, so that it can be recorded that there are others who are struggling, who have to use their limited energies in fighting the Good Fight.

All this fighting, researching, letter writing, having meetings; all take energy, that people with disabilities, chronic ill-health, impairments sensory or physical, or learning or mental health issues - just don't have to spare from the needs of their daily living. So something has to give. I have not given up blogging, but I cannot do it daily, weekly or even monthly sometimes. Until I get the facilities and adaptations in my home so that I am no longer dis-abled by the built environment and lack of equipment.

So, my argument is here, that dis-ablism killed my Muse ~ that soul-residing complement to my outer persona, that feminine aspect of the psyche that needs expression, for me, in writing creatively. I don't have the spare energy anymore. The pain from the laptop on the lap (no wheelchair accessible desk) comes quicker, stays longer, stays stronger. And all my writing energy and creativity is being used in keeping the Local Government Ombudsman's investigation at the forefront of my fight for my rights. And the rights of other service users of this County's social services department.

EDUCATION ~ EDUCATION ~ EDUCATION

How do you, as a person with an impairment, know what help is available to you, what society says you are entitled to in terms of help, equipment, services, an income, a life ?

If you are not living the life you know you could live, not getting the assistance (in all its forms) that you feel you should be getting, how do you feel ?

Negated ? Selfish ? Frustrated ? Fearful ? Depressed ? Embarrassed ? Resigned ? Forlorn ? Don't see the point in fighting, don't have the energy, the brain space to fight, can't fight for it, too ill, too impaired. Just exist, keep on keeping on, unable to resist the slow slide into worse the next day than it was the day before.

Where do you get the information ? who is going to educate, advocate, support, assist you - to reach that reachable goal - independence - so you are no longer dis-abled by society.

Through the snail-mail each month I receive Disability Now magazine, originating from the Scope organisation - "about cerebral palsy - for disabled people achieving equality." In this month's issue, is a printed insert, a quiz in which Scope invite readers - all readers not just the people they represent - to Take our Quiz to find out - "Are you in control of your life?". As I most definitely am NOT I thought YOU might NOT be either, so - if you want to complete the quiz online, go to http://www.scope.org.uk/disablism/audit where your input will enable their campaign. The statistics they gather from people who take the quiz they will use to: " tell politicians and policy makers what it is really like to be a disabled (sic ) (sic !) person."

Disablism is rife in the lack of education for dis-abled people about their rights, specific to their own central government's legislation and controlled by their own social health and care providers through local government. Repeat the mantra: It is not your impairment that disables you, but a dis-ablist society that does not take account of your impairment and provide you with the equipment or built environment to enable you to overcome the limits of your individual impairment. In other words - its not you its them !

How often do we think to ourselves - I can't do that / have that / be that - because I am disabled. How often can we rise above those negative thoughts to thinking - I am quite capable of doing that / having that / being that - if only I had the financial means / equipment / opportunity. Education is all. Those with the power may not have told you you can - do that / have that / be that - because it would spend their precious budget they assume they have control over. Education is often not provided to service users (us) by the social health and care providers (them) because they would loose control if we knew what they should be doing to assist us live the lives we should be living. Which leads me to my next rant ...

ADVOCACY ~ ADVOCACY ~ ADVOCACY

By this I mean proper professional trained independent funded Advocacy - not volunteers, not necessarily people who themselves have impairments - Advocacy that has the clout (think big wet cloth not fighting fists!) and that can force County Hall budget deciders and social services departments, to automatically provide to dis-abled people what central government has legislated should be provided so that people are no longer dis-abled in their impaired lives.

Disability Law Services, with advice, support and advocacy services, are available in some areas of the UK. Usually in cities, where there is a geographically concentrated client base, that makes the funding and setting up of such a service, with lawyers, advisers, advocates, with accessible buildings for their offices, awareness-raising publicity and advertising, all economically viable.

I dream of a Disability Law Service in all areas, that can deal robustly with legal issues, interpret legislation, and support, educate and advise dis-abled people and advocate for them. A service that has independence, that employs the independent trained professional people, that has the powers to ensure that providers of social care services comply with the law, with central government's guidance and legislation, on providing for the needs of dis-abled people, for their health, well being and social inclusion. Powerful stuff.

When I have the energy, when I have the disabled facilities and adaptations, when I have the time, when I am no longer fighting my own personal Good Fight, then the next fight, will be ensuring that Advocacy is available.

Did they think I would quietly go away happy once the Local Government Ombudsman has completed his investigation. They really don't have a clue. Unless they read it here first !

The Muse is not dead, merely resting, biding her time, and donating her services to the Good Fight.

Tiptoeing In ... and out again ....

2008-04-19T18:17:00.007+01:00

Quietly I come to say thanks for emails and, no, the Local Government Ombudsman
has not yet completed his investigation on my behalf, but is getting there. And, yes, I am a little paranoid about who from County Hall may be visiting here. And because I continue without disabled facilities and adaptations to my home, the laptop on lap is tiring and painful, but the latest gigantic steriod in my butt has made a big difference to stamina and cognitive functioning, so may as well use a bit of it here.

A new pic on my side panel ... does not represent me as I appear now, zooming along on my wheels, but taken many moons ago, (the specs say it all) with my Airedale.

1st May is Blogging Against Disablism Day 2008, so click on the title link in the post below, and join in.
See you there .... bye for now.

Goldfish has begun the BADD 08

2008-04-18T19:44:00.000+01:00

For the third year, Blogging Against Disablism Day will be on 1st May 2008.

Created, nurtured and hosted by Goldfish.

Click the link title above.

See you there !

Another Light Bulb Moment

2008-01-04T22:44:00.000Z

Update 4 January 2008:
More problems with CFLs - energy saving compact fluorescent lights - are being reported.
See today's BBC news by clicking this LINK for more up to date information
and for information on 'Spectrum' the UK Alliance for (people with) Light Sensitivity, click on this LINK.

The following was originally posted in March 2007.

This is for the attention of people with light sensitive medical conditions, Lupus, M.E., migraine with or without auras, people who are old, people who don't feel well and don't know why.

Enter the CFL:

CFLs, low energy light bulbs, are a DANGER to the HEALTH of people with light sensitive medical conditions. Particularly LUPUS !

I hated these low energy light bulbs before I knew this. I hated them because they give off a horrible yellow glow, casting all into a gloom that is just enough to see with but never enough to be in. All sorts of organisations keep finding an excuse to send me free ones, to encourage me to be green.

These bulbs are marketed as saving £10 a year in energy. They last three times longer but cost three times as much to buy. I am insulated and efficient in all areas but light bulbs and I recycle everything that I can. I don't need to save light bulb energy, I need to be able to see what I am doing without risking a Lupus flare or Lupus face disfigurement. 'Lupus' is latin for wolf, and the Lupus disfigurement was described originally by the medics as in the shape of a wolf's mask.

http://www.nucleusinc.com/

I prefer the description 'butterfly' rash now used by Lupus UK. The malar rash is rare nowadays thanks to modern drug treatments. I don't have this aspect of Lupus, and that's the way I hope to remain.

In Lupus, and other light sensitive conditions, old fashioned incandescent light bulbs are safe. CFLs and Fluorescent light bulbs emit UV light, which is not safe for people with these medical conditions. (By the way, neither are infra red heaters which don't warm the space but heat a surface when the infra red rays hit the skin - making you feel warmer. In the depths of winter at Pantomime season, I have a burnt face if I forget to apply sunscreen before going to the village hall event, which has ceiling mounted infrared heaters.)

When the recent push to replace ALL, YES ALL, incandescent light bulbs with CFLs was announced by the government department that needed a sexy scheme to rescue them from the doldrums, I felt, again, part of the ignored minority. My friend whose severe migraines are triggered by CFLs (amongst other triggers) rang in a bit of a panic. Don't worry I said, the Lupus organisation will be onto it. Here they are: this from the latest Lupus UK newsletter, quoted in full:

SPECTRUM Campgain on Light Bulbs:
Four charities working for people with light sensitivity conditions have formed the umbrella group SPECTRUM to co-ordinate approaches to Government on low energy light bulbs. SPECTRUM brings together LUPUS UK, the XP Support Group, Electrosensitivity UK and the Skin Care Campaign. Many health conditions, including Systemic Lupus Erythematosus, can result in severe reactions to low energy bulbs (CFLs) because these bulbs are fluorescent rather than incandescent. SPECTRUM has written to David Miliband, Secretary of State for the Environment, to express deep concern about potential moves by the Government and European Union to force universal use of CFLs. (These were trailed in the Government's Energy Review published in July 2006.) DEFRA (Dept for the Environment Food and Rural Affairs) have responded to SPECTRUM's joint letter and we (we/the representatives) are due to have a telephone conference with DEFRA officials shortly. If you are concerned about this important issues, you may wish to write to your MP, MEP or to David Miliband. PLEASE NOTE : DEFRA have enquired what numbers are involved in the groups represented by SPECTRUM.

We will be writing to DEFRA

and our MP and add our names to the list of people whose lives will be severly affected, medically and socially, if CFLs are pushed harder and incandescent light bulbs consigned to history.

If you are affected, please contact the Lupus organisation above or your Member of Parliament, so that DEFRA can be given accurate statistics of people affected by CFLs, who cannot be ignored in the rush to be seen to be protecting the planet.

EDIT: Sign the Petition direct.

Update 4 January 2008 - The Petition to Parliament has now closed. If you are affected, please use the link above to contact your Member of Parliament and ask for her/his support for the campaign against CFLs. Thank you for your interest.

Revolution: nearly, soon, truly, yes; I think so.

2007-12-27T17:21:00.000Z

http://eleganthack.com/

Being selfish today, in that I have spent precious capability to withstand laptop on lap and attendant pain- and fatigue- inducing activity, on reading a blogging poet FSJL. Often when reading FSJL on his Stanmore Hill blog page, I have found, pulled out from my unconscious, something felt but un-described until found in his poetry. A remarkable poet; daily his thoughts pour into perfectly formed poems.

In these short winter days when grey clouds add to the gloom as early as 3 pm, and the Christmas tree is blocking my access to the filing cabinet, printer and the 'to do' tray, I can prolong the holiday and continue to feed the senses. Food, drink, friends, old films; all are now a surfeit. So this today is Alone Time; now my Bump is back in her own neck of the woods, and I turn to music and poetry and prose. However, my brain nudged me to say that the next thing ought to be making sense of the events of the last few months. I have been, am still, afraid of the situation with Dorset County Council social services department. That fear used up my brain capacity, used up physical energy, depleted me.

Over the holiday when I have put aside everything labelled 'work', unbeknown to me, my brain has been working away at understanding my situation; working away much as the hard drive on the laptop does after an upgrade. Leave it with nothing to do for a while, and it sorts stuff, unbeknown, unbidden; just does it. When I next turn it on; the laptop and the brain, its slightly different, and working better. So, when I chose to feed the senses by reading some poetry, in a roundabout way, my reading of FSJL has made sense of my scary connection with Dorset County Council's social services department and my request to the Local Government Ombudsman to investigate what I believe is their maladministration of my need for equipment and adaptations for my physical and cognitive impairments.

Click LINK to Local Government Ombudsman.

In the bigger picture, beyond my own situation, I think I am connected to a revolution, of sorts, which I did not begin but am a part of, and thus may be picking up (through my scapegoat complex) negativity from those at Dorset County Council being jostled by the changes. FSJL, I read from his CV has a personal connection to a political revolution in the Caribbean. Reading his http://malvernmountain.blogspot.com/ blogpage 'Machievellian Moments ...' (June 8, 2007) led me to thinking:

There are parallels and instruction, here, on the British labour government's (itself founded, if not now a little floundering, on socialism) ideal and aim of self-governing and care-providing for 'disabled' people with FSJL's papers on the fight for independence by people previously governed colonially. Here and now in Dorset, the local tier of government in its social services department staff, are being forced to withdraw, through decreased central government funding, from their hands-on control of 'disabled' peoples' quality of life. Social Services department staff are being forced, by decreasing central government funding, and directives from central government, to hand 'their' budgets over to disabled people, to service users, in order that those (us) service users themselves may buy the services needed to live our own daily lives and enable our own social inclusion. (one of my clunkier sentences).

This revolution is very subtle and many service users may not yet have been touched by it, or not recognise it for what it is. Older, time served, service users are more likely to notice the revolution than younger or recent service users who may see it, correctly, in the light of what they would expect in this day and age.

(NB: if you do not think of yourself as a Service User; think again. Is it because you don't think you qualify for services; or social services department have told you you don't qualify for services? Think again, and get advocacy to challenge it. If you are not managing your day to day life (year to year ?!) or are isolated or excluded, or unhappy with the circumstances of your dis-abled life in any way, you are entitled to funding to get the equipment, services, and aids to social inclusion that you do need, Yes You Do. There is more to service provision that unpaid family and friends !)

Hints of the coming revolution are to be found in the Assessment of Need carried out by social services. Yes, 'carried out' by social services. Still the direction from central government seems to be worded to suggest that local government social services departments still have the power. But be encouraged: social services departments have to consult and discuss with the service user as an equal stakeholder on this Assessment. Stake your claim to this all you Holders of Stakes out there. The Assessment of Need is now NOT determined by social services staff, but as a temporary stage in this revolution, the subject, sorry, the service user has an equal say in the determination of the need. Finally, service users of social services will themselves wholly and independently with advocacy as needed, state their own assessment of their own needs. We will, in this revolution, I hope have as much clout and power in our voices and votes, as others in our communities have in the local politics of education provision, roads and highways, waste collection, police and ambulance and other essential services.

Stay with me here please; I am not a scholar and what threads and similarities are seen here by me, between FSJL's political analysis and my experience of changes in Dorset County Council's social services department, and social care throughout the country; may not be apparent in this blogged comparison.

But I am attempting to explain that I am encouraged that what seems a potential for entire revolution in social care provision, has its parallels in other fights for independence and self-governance in other spheres.

One of FSJL's points is that colonial rule led to education which enabled the populace to gain knowledge to understand their situation and fight, in words and action, to end the colonial governing of their lives and therefore to determine their own future and way of life. (Deep apologies to FSJL if this explanation detracts from his sophisticated writing on his subject.)

What we 'dis-abled' people lack is knowledge; of our rights, of legislation that provides for our rights. How often have established bloggers in the world of crip bloggers, come across a new crip blogger who is starting out on the same road that we have travelled (perhaps in a different time zone) and that new crip blogger is struggling with the same issues, blocks to services, outmoded and disgraceful attitudes from service providers. We welcome them, encourage and hold them in our hearts and minds; we tell them of our experiences, ways we found to get the essential services we needed; what words to write on the mountains of forms applying for basic funds and equipment.

All people ... who become dis-abled from social inclusion by whatever eventuality and currently find themselves dependent on a system left over from a paternalistic, charity-minded, workhouse ethic orientated, bureaucracy ... need education. This system may be changing.

But directives from UK central government to local government social services departments is not enough. Education of services users is needed. Crip Education. So that we know what they should be doing. So that we know when they are doing it wrong. So that we know how to deal with them when they get it wrong wrong wrong, without making ourselves ill, physically or psychologically, in the process. Knowledge is power.

But not every person who is or becomes dis-abled has the capacity; of time, health, energy, or confidence, to gain and use such knowledge. Then there is a place for a caring society to support them. Which is not the same as looking after them paternalisitically with charity and 'we know best' service provision.

So, quietly, without newspaper headlines, and even without very much discernible difference yet in our quality of life, there is change. The Revolution has begun.

Blogging is an essential cog in the wheel of this Revolution. Has it begun yet in the social services department of your area's tier of local government ? You are a stakeholder in this revolution.

~~~

Update: Just before the Christmas holiday, the Local Government Ombudsman Investigator emailed me with an apology for the lengthy time it is taking for him to investigate my claim of maladministration by Dorset County Council social services department. I am content that his comments show my claim is being investigated thoroughly and that the LGO investigation is doing what I could not do alone.

~~~

POSTSCRIPT: DCC has visited my blog - see 'Comments' below.

Christmas Greetings

2007-12-24T21:35:00.000Z

For a Picture is worth a Thousand Words

Adoration Gentile Da Fabriano (1370-c1427)

(?)

Peace - Vladimir Rumyantsev

Snoopy - Peanuts - Charles Schultz

Northern Lights

Happy Christmas, my deers.

'Tis the Season ...

2007-12-12T22:00:00.000Z

'Tis the Season to ...

Be Jolly

Be Apologetic

Be determined that the dark days of November are gone

And ...

Thank Blogging Friends for the comments, visits and emails ... during the Dark Days.

Which many other cripped and not-so-cripped Bloggers also are plodding through.

I cannot come here often, or visit you; nothing dire, just all too much.

But in this Season I gather you all in my thoughts, where you reside with my fond esteem and Best Wishes for love, comfort and joy.

Let's hear it for .... Wallace and Gromit !

2007-11-12T13:56:00.001Z

Wallace and Gromit's creators Aardman Animations have created an awareness campaign for the campaigning charity Leonard Cheshire, to be released in a couple of days. As with many of Aardman's wonderful short films 'Creature Comforts', real people have been interviewed and the characters and action based on real-life experiences. Although I personally would have been a tad dis-comforted to be characterised as a one legged tortoise, or a stick insect (ha !) waving a crutch, I hope the appeal of Aardman's reputation will help educate the dis-abling masses one meets every day in this disablist world.

Click on this 'Creature Discomforts' for a preview.

A stitch in time ...

2007-11-10T11:07:00.000Z

Did anyone else spend quiet times in primary school working their way around a square of holed fabric doing cross stitch ? I remember it being soothing; safe from that scary playground, vast and on a slope - I had balance and spatial problems even then I think, that are now known to be Meniere's. I learned recently that cross stitch was introduced into the curriculum at that time following research that showed it helped to order the brain, setting down patterns that aided education. I loved the colours and patterns then; now I cannot hold a needle for long enough to return to embroidery or collage that I used to enjoy. The picture is a small embroidery panel that my Bump did over many weeks when she was too ill from ME to get out of bed for a long time. It answered the dual needs of occupation for her and her Christmas present to me. It is number one on my list of what to rescue in case of fire or flood.

Elizabeth kindly emailed me with good wishes in case there was a negative reason I have not posted (or even visited - sorry) for a while. Thanks for hauling me back here Elizabeth. I have just had stuff to sort in my brain and on my laptop which has taken available energy.

A friend, an ancient wise old lady, died and I didn't know in time for the funeral, and I hadn't seen her because I have been out of circulation for a while and had not visited her for over a year, and my last letter to her was full of my problems why I was unable to visit, and now I feel loss and regret that I didn't. She had a profound place in the lives of many people and was instrumental in my ability to continue and cope. She was a Jungian, founded Jungian study and training in this bit of the world and influenced many people and organisations. Her funeral reflected the deep respect she was held in, and was held in the Quire at Salisbury Cathedral. I shall go there next week and light a candle for my regret and her memory.

Last week I visited my GP, just to touch base; she is another wise lady but young and enthusiastic and not afraid to speak her mind, to me or the NHS Primary Care Trust. Even so, she managed to stun me with her reaction to a letter from the Team Leader at social services that I had forwarded to her. TL had initially written that I could not have a social services money into my Direct Payments budget to employ my PA for assistance at hospital visits, I would have to get the money from each hospital I visited (four, for various reasons) and my GP would have to organise it. Since that first letter and my response of 'don't be silly, that's just bizarre and you haven't considered ... (or words to that effect !), the exchange of correspondence between me and the TL has degenerated. My GP's response was that the TM was getting personal; nasty and bitchy, (more subtly put than that, but you get the idea) and my GP was feeding that back to me in case I needed that support and input from another that social services were getting nasty and personal. Wow!

So I went home and thought about it, and thought about the two letters from others at social services that are waiting for a resply from me. Me hesitant, because the only reply I can give would be to tell them they are wrong, incompetent and not working to the duty of care they have towards me. And it all clicked into place; why I cannot find the brain energy or confidence to do this: I am ill. I am disabled. I do not have the disabled facilities and adaptations in my home requested by me and acknowledged as necessary by social services in April 2003, to enable me to cope with day to day living. I am not coping (now the latest and last systemic steroid is wearing off) . I do not have wheelchair access to disability related equipment for communication assessed by social services as necessary in March 2005, so communicating; writing on the computer, accessing files and records, notes and aids to my cognitive dysfunction, is all difficult, painful and tiring.

After I had thunked a while, it all came tumbling out of that locked-away part in my brain that wasn't being listened to; by me or by social services, that I cannot keep doing this. So I wrote to Mrs Bitch TL at social services and said: I cannot do this anymore. I cannot reply to letters. I cannot have meetings. I do not feel safe in my cognitive and physical disabilities to deal with this anymore.

Then I copied that to the Local Government Ombudsman Investigator, who has been investigating since April, and wrote that I hoped his investigations and the Ombudsman's findings, would aid me in this complex situation, in due course, when Dorset County Council have answered him, when he has answered them, when he has told me, when I have considered, when I have replied, when he has decided and told DCC and me his decision and DCC, I trust, have been found to be responsible for maladministration and injustice to me arising from that maladministration, eventually, finally, in due course. Whenever.

All that, and this; this laptop on my lap causing me pain and fatigue, because there is no space in my room for a desk or a wheelchair, is why, Dear Friends, I haven't been blogging recently. And knowledge that I need to do more out there, in the outside world with real friends, before anymore disappear. That is not to say I will be disappearing from here. Blogging friends and contacts are just as important, and real, as out there friends.

Halloween and that guy, Guy Fawkes

2007-10-31T18:48:00.000Z

amadai.com/images

I thought that we didn't used to do Halloween, in England, but as explained here: Info About English Culture, in many places we did.

When I was young, the 31st October was something the church referred to as All Hallows Eve and Halloween, as celebrated now, had yet to be imported from America; exposure to American culture then being largely confined to comics and televised Tom & Jerry cartoons.

In England, childrens' attention was focused on the 5th of November and the short evenings, after school before it got dark, leading up to Bonfire Night, were spent collecting for and building the bonfire.

'Guy Fawkes Night Hambledon' - watercolour by Richard Mitchell

milkywaygallery.com

Many customs surrounding relatively recent events in history recall older customs founded on ancient religions and ceremonies, and perhaps bonfires and lit effigies or guys, were merely assimilated into the commemoration of the 1605 attempt on the Stuart King's life and Parliament.

For us, the evening of the 31st October was Mischievous Night, when children old enough to play out of doors in the safety of the village streets during the darkening autumn evenings, made a Guy out of old clothes stuffed with newspapers, and hawked him round the houses, reciting "Remember, remember, the Fifth of November" and asking for a "penny for the Guy". If we were rewarded with a few coppers (pre-decimal pennies), they were collected to buy fireworks, or the special Bonfire Toffee only available in the corner shop at this time of year.

If we were unrewarded, we thought it reasonable to do a little mischief, which was innocent and merely annoying; lifting gates off their hinges and swopping them around with neighbouring gates - this only possible then when small gates led to front garden paths, in the days before every house had a car parked out front. Or we took their empty milk bottles left out on the door step for the next early morning delivery, to use for launching the rockets the big boys lit on Bonfire Night. Or just banged on the door and ran away, as you do.

Today, through the letterbox, the parish magazine reminding parishioners that: "On 5th November we call to mind the happy deliverance of King James I and the Three Estates of England from the intended Massacre by the Gunpowder". So that's all right then.

britannica.com

The Stuart King called for a sermon to be preached on the first anniversary of the 1605 attempt at treason, and the Church of England does it still, but for us heathens we have this rhyme, today culled from the website of the Yorkshire Firework Company

Remember, Remember, the Fifth of November

Gunpowder, Treason and Plot

I see no reason why Gunpowder Treason

Should ever be forgot.

Guy Fawkes, Guy Fawkes, t'was his intent,

To blow up King and Parliament,

Three score barrels of powder below

Poor old England to overthrow

By God's Providence he was catch'd

With a dark lantern and burning match

Holler boys, holler; make the bells ring,

Holler boys, holler: God Save the King.

Q: When is a Dearth not a Dearth ?

2007-10-21T19:37:00.000+01:00

A: When it is a chronic, not an acute, insufficiency.

Of Men, that is. The male of the species. The necessary opposite of female. Chronic, not acute. As in: always, not just recently. The essential opposite of the female; in daily life and in the psyche. So, the insufficiency has had to be filled by alternative masculine input. Masculine input that I could relate to, however impersonal was their way of relating to life; through music, words, the visual arts.

Rainer Maria Rilke, Poet

I discovered T. E. Lawrence ( Click for T E Lawrence Society ) long before I came to Dorset, where he hid. His friends the composers Ralph Vaughan Williams and Gustav Holst, used to visit his Dorset cottage deep in the woods and would sit of an evening, listening to recorded music, as I am doing now. He is buried at Moreton in Dorset and someone, anonymously, leaves a posy of flowers on his grave for his May birthday. His effigy in his Arab robes lies quietly, stately, in Wareham church.

T. E. Lawrence (Augustus John - Tate Gallery)

My neighbour died last week. He was a male constant in my daily life, hammering away in his shed, muttering to his dog, grunting to his wife. Talking, like some men do down here*, in incomplete sentences; beginning in the middle, leaving the ending unsaid. Expecting the hearer to know dutifully what was his bidding; answering everything with "eh ?" so it had to be repeated, to give him time to formulate a reply to his/the cleverer quicker female.

(*Down here being Dorset; 'up North' they (men) have their own local variations.)

Nonetheless, he was benign. Until the frontal brain tumour, un-benign, began to take effect on his sense of right and wrong. He it was who banged on my front door one dark and quiet night at 11.10 pm, when I blogged it ( Click for Don't Panic Sally ! ) because I was frightened, because I didn't know who or why, when I dismissed the possibility of it being a neighbour and called the police. Sat in the dark blogging and waiting for my pounding heart to be slowed by beta-blockers and common sense. Was re-shaken remembering the neighbouring farmer who, I found out on holiday on Crete, was serially violent; remembered the childhood fear from father.

Why me? Why bang on my door? Because I am a woman living alone, so therefore without a man to keep her in check. So seen, by some, to be an affront to all that is right and proper in the order of things in this rural idyll. (I was rocking with some 70s rock on the telly.) Coming south to live in Dorset twenty years ago was like stepping back in time by thirty years (1985 - 30 = 1955) - and no, not to Thomas Hardy's storytime either. ( Click for Thomas Hardy Society ) I was never milk-maid material, but recognised that the place where he placed his stories, here in the Blackmore Vale, was where I found myself.

Thomas Hardy and friend at his home Max Gate, Dorchester

(personal.centenary.edu)

Another neighbouring man didn't have to look far when his wife died some years ago; there I was across the road, visible from his window, single. Obvious choice really, for him. Every time I came out of my door, it was to see him. Every time I did some work in my front garden, it was to see him. Every time I went to a village event, it was to see him. It took some carefully planned avoidance and seriously bad rudeness from me direct to his face to get through to him that, No Actually, the last thing I wanted in my life was the boring, selfish, patronising husband that my dear friend over the road had to put up with, before she died.

I am a child of the 50s, now in my fifties in the 21st century. When I was a child men were men and worked in the coal mine. It took me until about my fourth birthday to stop being afraid of growing up, because I didn't want to go down the mine, to realise that I was a different being and would grow up into being a wo/man not a man. My brain has always been too washed with testosterone, or something, that made me think too much and argue and fight, with words, and generally not fit in, thankfully, which is what got me out and away to London when all my northern friends were becoming couples and settling down, instead of thinking and reading and following, even finding, careers.

The female hormones eventually did get a look in, possibly aided by the new-fangled Pill that became readily available, if you answered the doc's questions in the right way and made up a 'hearts and flowers' story about a proper boyfriend with a proper job saving up for a proper marriage ceremony; all hearts and flowers.

So a few glorious years living in London, working with and socialising with clever, intelligent, capable men and women. Discovered sexual attraction and uncovered a desire for home-making (which I still enjoy) and baby-making (now thankfully too too old). I settled into being the sort that fitted in and had a good life and a nice wedding and produced a wonderful offspring. Then the Pill had to go because it was making me spotty and neurotic, so hubby had the snip and suddenly my hormonal balance tipped ever so slightly back to being me again, with a thinking demanding questioning brain in gear and at full tilt I wanted to go places, meet people, be someone, do things, and he didn't want me to. This picture then split

Life as a single working mother was hard financially and culturally, but time passed and I had more Me time and a few lovely encounters and one very restorative relationship but he died. Inbetweentimes I retrained, had a bad fall, and ended up with two good men in my life, both of whom I had to pay money for; the osteopath and my Jungian training analyst.

Carl Gustav Jung

And for quite some time they were the two men I most appreciated in my life. Over many years the osteopath unravelled all the old injuries and took on the imbalance and generally dizzyness in my physical body and the analyst did the same over seven years with me and my psyche. They both were in stable relationships and that was a good foundation for the professional understanding that enabled the friendship between us.

But that was when I first noticed the Dearth.

It is not deliberate on my part, I am open to new friendships and potential for relationship, but I guess the answer to 'Why the Dearth?' lies somewhere in all the above, and the fact found in another neighbour's new relationship: when he came out of mourning for a feisty rotund wife, he found himself a thin quiet blond who has the appearance of being half his age. Men !

The Dearth in my life continues. Until that imbalance rights itself, here is another favourite Dorset man, a man of letters and many languages, sometimes called the Dorset Dialect poet. ( Click for William Barnes Society ) I salute him for his love of all things Dorset every time I see him.

William Barnes - Poet - watching the people go by on Dorchester High Street

(Edwin Roscoe Mullins)

Growing Up

2007-10-13T22:04:00.000+01:00

A bit of a jumble this post; after recovering from the physical and emotional load of 'There and Back Again' I have been waiting until my thoughts sorted themselves into various blog topics, but more kept piling in, so this is a bit of an off-load. And I am trying to do this at 8pm while watching the England Rugby team crucifying the national anthem. Well, bless them, its going to be a tough one, so up and at 'em boys. Who described it as "a game for ruffians, played by gentlemen" ?

First, the pic of Sally above, after who I have named myself. She was such a sweetheart, a companion for twelve difficult years, but she has been gone for just as long. My current profile picture of four year old me, sat down in a frilly frock, felt appropriate when I added it last year but no longer feels representational of where I am. I am maturing, and the fringe is growing out (from the skull surgery) and the current steroids mean I am standing and even walking a bit more. This picture will (hopefully if I get the url right) replace the younger me on my profile, but I am so much older than that picture there is little chance I will be recognised from it, even in this rural village called Dorset. And the spectacles have changed dramatically, needless to say !

Now, the big news is the weight is dropping off me, thanks to Neris and India. Those in the know will know who I am referring to. So I feel no embarrassment posting the pic of me taken more than a decade ago because although no diet on the planet can role back the ... (What a start Josh Lewsey - a THUNDEROUS try ! Yeah !! Come on Johnny .... .... oh well, five points in 2:44 minutes - nice one.) ... can role back the years, I feel tremendous confidence. Thanks Neris and India. That is all I will post on the subject for yonks, so don't ask.

Maturity. The visit up north (last visited in 1998 for my father's funeral - you may not remember, that was his last typical act, the funeral ending on the day and at the time of the eclipse) ... (I like brackets, so did Virginia Woolf, who didn't use brackets, but this stream of consciousness is a result of reading her's) ... to my mother, who I have not seen for six years or so, and who I didn't speak to for eighteen months, after her last massive betrayal of me.

(8:29 minutes and England are leading 5-3 against France)

Mother was on her best behaviour. There were a number of contributing factors: She is now in her mid-80s and a little frail. I was not staying with her (Oh I LOVE CentreParcs) so she had no opportunity to have control over me, in those small devastating ways of hers. Also, in order to make the trip (250 miles) and be safe away from home and home helps, my PA did the driving and stayed with me for the week, so she accompanied me most of the time I spent with my mother. So mother was on her best behaviour, with only a few small slips.

(Prince Harry looking a bit nervous in the stands watching the line out ... its ok Hal, still 5:3 to England.)

So, I was able to a 'good-enough' daughter to my mother. We have been friendlier to each other during the last year or so on the phone, and during the visit I felt genuine affection for her, which is the appropriate place to be in when one's mother may be slowly coming to the end of her days. That she feels less of the need to put up barriers and fight, (with everyone, not only me) and is able to expand into herself since my father's death, was at least a 50% contributing factor. She opened up about family history, where in the past she has kept it to herself as if it had a value she was not prepared to give away.

(bugger, 17:53, Eng 5 Fra 6)

On the last night of our stay, I had what Jung would call a 'big dream'; a dream that showed there had been a massive shift in the unconscious psyche, making unconscious contents conscious. That is what psychodynamic psychotherapy teaches - the psyche's own dynamic at work. The big dream is too symbolic to make any sense as a reported dream story here, but it was about pulling in more positive anima into my consciousness, allowing the feminine to be integrated; not needing to be quite so animus driven to protect myself against the negative feminine, when that anima is coloured by a female's first experience, her mother. Who most definitely was not a 'good enough' mother. So, I am maturing - (about bloody time I hear the Freudian super-ego commenting).

So, after the swop of pics this replacement profile pic will reflect the optimism I feel. The current optimism is not, I am pretty confident, only a result of the steroids. A side effect of big steroid doses is more firing of the brain synapses, so I have to prepare myself for the crash that comes as the steroids leave my system some ten weeks or so afterwards. 120 mg in my butt lasts a long time.

( ... "Johny Wilkinson needs to be at his immaculate best at the moment" - so come on, stop missing the goal !!)

So, steroids and no WAV for a week (oh dear, more later) meant all that energy was used in clearing the garden ... well, steroids and some new light-weight high tech ratchet loppers - instead of tidying up the overgrown shrubs around the front door and windows, I just cut them off where I could reach from the wheelchair. Dramatic size reduction in the garden too !!! Very therapeutic. No vehicle to take the chopped off branches away, so I used them to stuff in the front hedge. Got you, you little b.....d cats, who sit in the hedge, waiting for the birds to settle into swiping distance. I saw the two neighbouring cats actually walk round from the road-side front of the hedge, up my drive and along the garden side of my hedge, to have a look at why they could no longer take that short cut into my garden, or find the gaps they used to sit in wait from. Truly, I do like cats. I had one years ago, a huge ginger stripped old lady who came to live with me, unbidden, and keep me company when I was pregnant. Twenty eight years ago! I like cats I know, who have chosen to make friends with me. I hate the cats who diminish song birds in my garden.

( ... its still 5:6 and approaching half time ...)

Whether its the steroids (which undoubtedly do lift the mood) or part of the maturing process that allows me to relax about the Dragons at Dorset County Council, I don't know but, despite the six months that have passed since I asked the Local Government Ombudsman to investigate DCC Social Service's five year delay in providing wheelchair accessible adaptations to my home, I am not worried, anxious or concerned about that process. It is out of my hands now. The Ombudsman will decide. And eventually let me know what he has decided. I'm waiting on the Ombudsman finding maladministration and injustice arising from that maladministration. Fingers crossed.

What I have learned from the Ombudsman process, is that those in authority at the local authority are not necessarily more competent, intelligent, informed or capable, than I am. They may be incompetent, uneducated, ignorant, incapable, yet still have jobs that determine the quality of life of disabled people. Now, that IS maturity. Maturing from expecting the 'grown ups' to sort it out. Maturing from expecting the service providers to look after me, as a child expects the parents to put its needs first, before their own. Learning from this long five year process of delays, that I have to put my needs first, not be afraid of demanding what I need. Not being understanding of why they have not supported me, advocated for me, ensured my eligible assessed needs are met in a timely way, despite their bosses demands that The Budget is the most important factor.

Last week I had a meeting with my DCC Social Worker, (who is capable, intelligent and qualified) and a Finance dept. lady from DCC Exchequer Services for a Fairer Charging Assessment. Fairer to who ! is the obvious response. To determine if I am liable to pay a charge to DCC for the home care (home helps) and day care (personal assistants for a socially inclusive life) services I receive. Bear in mind I am dependent on means tested benefits and currently nursing a little overdraft at the bank.

(48:13 minutes - Eng 8 France 9, missed it, how did they do that?)

It was a positive meeting, in that it was fair and followed government guidelines and gave me the opportunity to let off steam about a few things: when the Finance lady explained that if I had any queries about my benefits, she could look into it for me, I was gob-smacked. Does that mean instead of interminable waits on the end of the phone, or gobbledegook replies from the Department for Work and Pensions (the old D of Social Security) to my letters, I can just email you ? Yes. And you can access 'the system' and sort it out ? Yes, we have a partnership agreement to provide this service. Since when, I asked ? Since two years ago. .... Erm, why didn't I know about this. How are service users told about this service from DCC. That is such a helpful service. How have you publicised it to service users ? Er, we haven't. We can't. We have over 2,000 service users and if they all contacted us we would spend all our time answering emails.

Now, just wait a minute here. (said I) Are you saying that DCC have entered into a formal partnership agreement with the DWP and get central government funding to provide this partnership service to service users, but you are not telling service users ? (I didn't wait for her reply; she did look very uncomfortable.) You have to tell your bosses that they need to give your department the resources to provide this service to all DCC social services service users and tell the service users about it so they can ask for it. Your bosses are getting the money from central government for this partnership with DWP but you they are not providing the service ? ! ? ! Am I the only one to think of this ? Why do I have to be the one to point these things out. You have to look after me, what is going to happen to me in 5, 10, 15 years time when I am too tired or too ill to recognise these failings or do anything about them, like I am telling you now. What is going to happen to me when I cannot do it anymore if you are not going to look after the interests of me and other service users. Non-committal silence, significant respectful understanding looks exchanged between the three of us, but nothing said.

(... there's more ....)

At the end of an exhausting but fairly positive two hours .... "I just need you to sign this form Ms Sally ..." Three statements on the form I was asked to sign. Tick one, tick two, hang on a minutes, I am not signing that last one. It says: I undertake to pay DCC any Charge I may be assessed as eligible to pay (or words to that effect). I am not signing that; how can I sign that statement until I know what the result of the assessment is. And another thing ... If I am assessed as having to pay a charge I will appeal the decision. Hasn't any one else spotted this flaw in the form. You cannot ask anyone to sign that statement. Anyone has the right to appeal a Fairer Charging decision, so it is wrong to ask them to state that they will pay the charge before they know what the charge is. I am telling you now, because your bosses who designed and worded this form obviously don't understand service users' rights, that this is wrong and you are wrong to ask service users to sign the statements, without telling them they have the right to appeal any Fairer Charging decision. I am tired of being the one that points out the wrong things that DCC social services keep doing. I need looking after. I need you professional DCC social service employees to look after your service users. Now I am very tired, emotionally exhausted and I am going to cry. And I did. !!!

And that was a very mature thing to do in the circumstances. I did not let them off from their responsibility to this service user, their duty of care. Whether it will have any effect, create any ripples up the hierarchy, I don't know, but they know that I know that they know that the Local Government Ombudsman is creating a bit of a stir at County Hall.

(70:55 minutes, still Eng 8 Fra 9 - Andy Gomarsall, scrum half, needing a bit of attention, and he gets it ... and is looked after and has his needs met, and there is a parallel in there somewhere.)

( 73:59 Penalty - " dangerous tackle - takes it high - not malicious, come on Johny .. .. .. ..
deep breaths" (says the commentator) " England go in front ! And its Doctor Wilkinson !!!"
Only 5 minutes to go.)

77:40 minutes, Wilkinson ..... Oh yes, " no anaesthetic now for the French" .... Eng 14 Fra 9 ... Commentator gleefully - "they're nearly there!"

Prince Harry must be bursting up there - away from the cameras.

(... but not from the newshounds - msn uk news)

Proud England, not without a fight, despondent French ... swelling song ... " Swing Low Sweet Chariot, coming for to carry me home".

There is encouragement in that.

There and Back Again

2007-09-15T17:31:00.000+01:00

Off to The Dukeries, place of my birth, to visit my mother, and where there will be no dragons to tame, only the Lion and the Unicorn mazes to walk.

Unicorn and Lion Pavement Mazes by Adrian Fisher at Worksop, Nottinghamshire

http://www.mazemaker.com/

I was born in a small village that was a quiet farming community, close to the forests of Sherwood where Robin Hood resided. Shireoaks village, pronounced locally Shyerokes, and so written on earlier maps, was graced by Shireoaks Hall circa 1600, with a fine early water cascade feature, discernible on the old map below. The village lies on the boundary of three counties; Derbyshire, Yorkshire and Nottinghamshire and an ancient large oak - the Shire Oak - is indicated on this map of around 1790.

Although a farming community, it was not a back-water, for the Chesterfield Canal ran alongside the railway, but the relatively peaceful countryside was rudely awakened by the sinking of the shaft to mine the rich coal seam around 1843 which remained working until the late 1960s.

During the 1960s my father played in the Whitwell Band, at that time sponsored by the Colliery owners, and as the Whitwell Miners Welfare Band, won the Championship competition held at the Albert Hall in London. My father was the trombone soloist and reputably his nervously knocking knees kept time with the beat of the conductor's baton. All the surrounding towns and villages in the adjoining counties of Derbyshire and Yorkshire had brass bands (composed solely of brass wind instruments) and at Whitsuntide the tradition was for many bands (up to 80 one year) to travel around the villages in the Peak District and play at each village - and down a pint or two.

Shireoaks Band circa 1912

I will be back in Dorset, my heart's home, in a week or so.

Call to Arms

2007-09-09T11:22:00.000+01:00

http://www.ngw.nl/

Who's Afear'd ~ not Me !

This is the coat of arms of Dorset County Council, granted to them in 1950 by the College of Arms. They got the motto from the Society of Dorset Men (not exclusive to men), to whom it was suggested by Thomas Hardy in 1905.

I am not afraid of the Dragons at the County Council. Maybe its the ongoing investigation by the Local Government Ombudsman that currently enables me to feel this; maybe it is a growing confidence that they (the corporate body) are, in my experience, blinkered public servants who are incapable of seeing beyond the edge of their (corporate) desks into the Kafka-esque abyss they are creating for the users of social services.

Certainly I know that the latest systemic steroid injection fires my brain up, clears the cognitive brain fog, boosts up the stamina and even cools down the heavy molten lead carried around my whole body, just under the surface, by the systemic erythematosus that is the inflammation of Lupus. (Be warned, a systemic steroid injection doesn't suit everybody and does not help every condition of fatigue and brain fog; certainly not CFS/ME in people I know of.)

I feel like sending a rocket up the County Council's (corporate) arse. My paternal great grandfather could have been of practical help in this, for as lifeboat coxswain, he may have had a few to spare after this ...

The nitty-gritty of the new situation I now find myself battling with Social Services, is dull to all except those directly affected, but I put it here in case there are, out there in the blogosphere, any other service users of Direct Payments.

So this is a Call to Arms to other disabled people who are users of their Local Authorities' social services department's Direct Payments scheme. Disabled people who employ their own staff for the home care and day care they are assessed by social services as needing for their health, safety and wellbeing (to use the correct wording), including assistance to attend medical appointments or in other health care settings .

We should get together, virtually, and compare experiences of problems, and their resolutions (not revolutions, yet !), and perhaps have a rocket practice so that, all over the country, local authorities get the proverbial rocket up their (corporate) arses.

http://www.jubileefireworks.co.uk/

The County Council are short of money for their social services budget. To (allegedly) disguise just how enormous are the budget cuts for social services, they have (allegedly) combined budgets from social services departments, libraries, adult education, community safety (sic) and health improvement (very sick), and re-named the whole damned conglomeration ' Adult Services', which now has a whacking great budget, made up of all those previously separate budgets, each having its individual budget cuts thereby disguised.

Then they (the corporate they) (allegedly) decided to grab as much of the National Health Service budget as they could get their hands on, thanks to central government encouragement to the NHS Primary Care Trusts and Local Authorities with Social Care Responsibilities to work together to deliver services.

Remember that central government has poured lots of money into health care (as it affects voters of all ages and incomes) and not very much into social care, as the not-yet-disabled voters don't think it will happen to them, so its not a vote-loosing strategy. Cynical, moi ?

So, what is new, is that now my social worker informs me that, without notice, without my consent, without consultation, without any thought to the affect of their policy change on service users, AND without adhering to Fair Access to Care criteria, Dorset social services policy is now that the service user; I, will have to get the money to pay my PA to assist me at hospital appointments, not from Dorset County Council Adult Services with whom I have entered into a contract for Direct Payments to purchase the care I need; but from the hospital I go to.

Bizarre. Not on. No way. Have they not heard of the law of contract ?!

Obviously not, so I have told them. That the County Council cannot change the terms of my contract with them without my consent, without notice, without consultation with service users, without thought that the contracts of employment that I have entered into with my employees, is founded on the Contract for Direct Payments with Dorset County Council, which guarantees the regular amounts into my DP bank account from which their salaries are paid. So that I am not liable for the money to pay my employees from my benefit income - nor from my occupational pension from Dorset County Council !

And all sorts of other contractual reasons why not, which took four typed pages to explain it to them. All the reasons the council lawyers, service managers, team leaders, social workers and jobs-worths do not appear to have considered. Telling them what they should consider. Telling them how to do their job of supporting me as a service user, to met their duty of care for my health, safety and well being.

Posted yesterdday. I feel as though I have done their job for them. Without pay.

I could be wrong. How am I to know for sure, without professional legal advice on the law of contract and employment law ? Access to which professional advice on Direct Payments should be provided to service users by the County Council. Well, I don't consider the one-man DP advisory service that I refused to use any more over three years ago, meets that remit. I refuse to have that smelly (allegedly), (in my experience), bully (in my experience), (allegedly) in my house. Yeah, that's another axe to grind another day.

All I can do is shout loudly over four typed pages how this change in Direct Payments policy will impact negatively on this service user. And refuse to accept it.

They can earn their salary now and sort it out. This has been churning away in my mind and guts for almost two weeks now, and my laptop has taken a helluva battering. Now my laptop and I need some space and peace and quiet.

Always the Jungian, this image returns to me time after time. The dragon I hold on the chain is being defeated by my positive animus; my knight in shining armour, representative of a woman's ability to deal with the world. The lady in this painting is not Afear'd.

Paulo Uccelo ~ St George and the Dragon c 1456

Even so, I need to calm down my indignant racing heart so I don't need to take any more beta-blockers to deal with the physical effects. This would be a good way to calm down ...

Odilon Redon - The Mystic Boat

COMMENTS ARE WELCOME ON MY BLOG - please click on 'comments' below to read what others have said, and leave your own comments. I have elected to moderate comments, so your comment will not appear immediately. That is how I delete the comments that are offers from companies all over the globe to recruit PAs for me.

Problem Page

2007-09-05T13:37:00.001+01:00

Postscript 7 September ~ This week's SHINY GOLD STAR is awarded to ELIZABETH for knowing how to sort out my plunged right hand column - oh the bravey of some, who unafraid boldly go into the raging torrent that is the template. See her comment to this post.

I didn't move my profile, links, favourite blogs, blog title lists and archives to the very depths of this page.
Blogger Did.
I have not changed my template or settings.
So Blogger must have.
Scroll down to the very deepest depths and there it all is.
Bad Blogger.

Sorry Blogger - all now restored, thanks to Elizabeth McClung, linked over on right column.

When is a Taliban Not a Taliban ?!

2007-09-03T20:12:00.000+01:00

WHEN IT IS .... " the disability taliban ..."

Its Monday, a brain-befuddled drug down day. Not a day to go putting my nose out the door, over the parapet, into other peoples' business, or even to deal with my own affairs.

So, you would think a quiet meander through the emails would be safe. Photos from a friend; 'how are you' from others; some comments via blogger that I haven't so far been able to respond to, and the weekly update on local government matters from http://www.info4local.gov.uk/ (which is where I get all my inside information) with a link to the Disability Rights Commission.

Gasped in astonishment when those words ~ "the disability taliban" ~ hit me in the eye. On the DRC's very own website.

(POSTSCRIPT: I can't give you the link to the relevant page on their web site for you to click on, as it is so long it messes up the template, so go to 3 w's and a dot followed by drc-gb.org/library/research followed by a forward slash, then: journal_articles/journal_articles_august_2007.aspx)

Now I know that strictly translated the term 'taliban' means 'students of Islam', but the connotations gleaned from media coverage are a different story. And I know that the writer of the article in 'Modern Railways' who used such an inflammatory description (of those people with physical impairments who are impatient at having to wait until 2020 to get their wheelchair on a train), is probably an ignorant sexist racist misogynist disablist (allegedly) nerd, but even so, the DRC should know better.

So, I rang them. To check that what I had seen really did exist on their web site. That I wasn't over-reacting. That it was not the thing to do, really, was it, to put up that quote on their own website. Inflammatory, offensive, discriminatory, disablist.

Yup, it was a surprise to the lady on their helpline. Could I make a formal comment via their website complaints form please, so that they can investigate it.

Oh, all right then, here goes:

The DRC website page 'Journal Articles August 2007'. Under the DRC's heading 'Transport' the DRC web page refers to an article published by 'Modern Railways' august 2007 pp20-24 entitled 'New Train Tsunami Looms' and quotes on line four "... the disability taliban...".

I am offended by the connotation of taliban with the disability movement.

I 'googled' the term 'taliban' and was offered: " ... a fundamentalist militia" from wordnet.princeton, and"... made up of ardent obscurantists" (opposers of reform and enlightenment) from a Guardian newspaper article.

These descriptions largely support my, and I suspect other peoples', understanding of the term 'taliban' from media coverage. I am disabled and I try to counter disablism wherever I find it. I have two questions:

1. Do the DRC react to publications that use offensive language in describing the disability community. If this term had been used in any other media; such as during a televised discussion or news report, would it have been deemed offensive and discriminatory ?

2. Did the DRC not consider that it would be offensive to put that quotation from another source on their own website, thereby repeating and compounding the offence and seeming to leave it unchallenged as an acceptable usage of the term as a description of a particular interest group of people with impairments.

The use of the term 'taliban' as an adjective should be actively challenged by the DRC, not repeated on its own website.

Submit ? Click !

I then drew the covers back over my head and tried to go back to sleep.

I like a picture to lighten the gloom of this page, so to illustrate this I trawled the web for relevant pictures, but all that Google came up with was this:

dk4dcy.net

I mean no offence to Islam, or students of Islam. Just sexist misogynists.

Everything in the Garden

2007-08-25T21:10:00.000+01:00

Metaphorically ~ Everything in the Garden is not yet lovely; but I am optimistic. The Local Government Ombudsman's Investigator has written that he has received "initial comments" from Dorset County Council social services and will keep me informed. Well, I am quite happy to let it ride for the time being. It is good not to have to do anything just now, about social services' delays to disabled facilities and adaptations. I haven't fallen recently, just a few minor stumbles, its warm indoors and out, so pain and stiffness is slightly less. I have not had to engage in written correspondence with anyone official for a few weeks, so I am content. I am calm, relaxed even, which is a pleasurable place to be.

Literally, now everything in the garden is lovely and it is warm and sunny, 25 degrees C and clear blue skies. The leaves pictured above were picked in the grounds of Kingston Lacy last week, and not photographed but the live leaves arranged and placed on the scanner and sent straight to my laptop. Literally life size on your screen. I don't yet have a digital camera, so this is my current favourite option.

I have been reading Medieval Gardens by Anne Jennings*; lots of pictures from medieval illustrations, and quotations. Bartholomew de Granville wrote in the 13th century:

For trees move not wilfully from place to place as beasts do;
neither change appetite and liking, nor feel sorrow ...

He was describing the difference between plants and animals ! The view below of Kingston Lacy house is very familiar and I have done many pencil sketches of the magnificent cedar with the white circular seat around its base and the house in the background (the tricky architectural detail variously hidden by branches). Last week it looked different - had it moved ? The tree with the seat around was different. Took me a while to realise; they had moved the white circular seat to be around another tree close by, so the original cedar must be getting wider as well as taller.

Kingston Lacy, Dorset - National Trust

I know how it feels (width not height). Its summer - I eat lots of fruit and healthy raw vegetable salads, but sitting outside in the shade with a pot of Early Grey, has to be accompanied by cake ! I am good: clotted cream on my scones only once this summer.

My garden is very green and lush, as it has been raining since May and only stopped last week. Paul who cuts my grass (and who is a straw bale building consultant) struggled to make it wheelchair friendly last week, but it looks more chopped than mown. No matter. Usually at this time towards the end of summer it is sparse and more brown than green; but together with the cut hay meadow beyond, is unseasonally but pleasurably green. Hugh of Fouilloy (c 1132-1152) wrote:

The green turf which is in the middle of the material cloister refreshes encloistered eyes and their (the monks) desire to study returns.

It is truly the nature of the colour green that it nourishes the eye and preserves the vision.

Paul, who has been keeping my garden under some control for almost fifteen years, is a very interesting man, and often has fascinating nuggets to share. This week he reported seeing two ravens on his land , which is on the slope of one of the great Dorset hills, and commented that a few years ago a raven was captured from that hill and taken to the Tower of London. There to have its wings clipped (as all the Tower ravens have) so that it might extend the breeding stock of Tower ravens. Imagine how the raven must have felt - one minute minding its own business, sailing along in the thermals admiring its birds-eye view of the Dorset landscape, then netted; wings clipped, incarcerated in the Tower for no good reason (such as treason or other fellony) and expected to perform.

http://www.toweroflondontour.com/beauchmp.html

This wet summer is not kind to those who rely on the the seasons to perform in the expected way. Paul's plan to import mature olive trees in response to recent hotter dryer summers, has not got off the ground this year. Maybe next year. We all hope. A friend, who is almost self sufficient in vegetables, has lost her crop of Pink Fir Apple potatoes to blight, even though she grows them in raised beds and many others have reported their problems with courgettes and tomatoes. My Bump's Plum trees are laden though and the blackberries in the overgrown bit of my garden look promising, but others' runner beans are either heavy cropping or slow to get going and flower due to the cold and wet. I am glad that this year I did not sow and have planted (by Paul) my usual row of runner beans - I would not have been able to get the wheelchair onto the soggy garden to tie in the young growths. I decided in March not to sow runner beans this year (which is the only vegetable growing I can manage these days) as I truly thought that, after five year's delay, surely this spring building work would begin for adaptations. In April it became obvious that the delays were continuing, hence my request to the LGO to investigate Dorset County Council' social services department delays.

All Enjoyers of gardens in soggy England hope that autumn is postponed by a late summer of gentle September days. But already there is a change; this morning I was awake unusually early, and at a 6.30 am a thick white mist, lit from above by the already risen sun, shrouded the garden beyond a few metres. As the sun burnt it off, the first of the autumn coloured dry leaves fell from the twin trunked ash tree just the other side of my garden boundary, a tree that appears on Ordnance Survey maps from over a hundred years ago.

It is too soon yet to be thinking of autumn. I am just beginning to enjoy the summer.

(* Medieval Gardens - Anne Jennings - Published by English Heritage ISBN 1-80574-903-5)

Daily witterings

2007-08-15T22:46:00.001+01:00

'Blackmore Vale' - Jake Winkle

http://www.jakewinkle.co.uk/

A lovely meander around the back roads of north west Dorset, not to the Gillingham and Shafetesbury Show, as the mud would have defied the wheels. Shame that. Through the lovely Blackmore Vale. Narrow slow roads, wide verges, wide thick hedges enclosing varied shaped varied greened fields, oaks and silver poplars, stone houses, deep streams (as deep as January, but its August, so what will the streamside roads be like after the winter rains !).

On to a nearby town to follow up my Bump's recommendation for a new pillow.

There is a whole subset of vaguely cripped not-strictly crips, who stress about their pillows; a different subset to those crips who do similar about their beds or sheets (yes, Charles that's you).

One of the many aspects of Meniere's Syndrome hyper-accussis is the noise that pillows make. Well, I have at last found a solution. Its that NASA-inspired stuff Tempur and not only does it not make a noise in my ears as I fidget to get comfortable, and dissuades me from fidgeting, it even silences the full volume pulsing roaring whooshing sound that comes, unbidden unwelcome, once or twice a month and stays around for a few days rendering me incapable of sitting still and listening to it, or getting to sleep at a reasonable time.

Now I want the matching mattress too. And, bless me, I thought it was just the lack of love that made me sleepless.

Some new information, well new to me, detailed here for the record for other travellers on this noisy tinnitus deafened route, trawling the blogosphere for information on Meniere's.

I have recently found the evidence* for my belief that Meniere's, which I have had for decades, is all the fault of my Lupus, which was diagnosed almost one decade ago, but I now understand has been around for most of my life. Its called Auto Immune Sensoreonuro (nah, not going to work is it, the spelling, I'm just going to have to get up and find the printed article).

*Autoimmune Hearing Loss. Author: Elaine Moore. Published March 30, 2007. (Found where ? Sorry, lost the source.)

The article was found via my blog site meter; if I follow a query that led to my site, often I find interesting related stuff to what I have been blogging on about.

In this case, the article discusses Auto-immune sensorineural hearing loss and is not focused on SLE, indeed it only crops up as: "... other causes of auto-immune sensorineural hearing loss such as ... Systemic Lupus ... should be rule out before a diagnosis of auto-immune sensorineural hearing loss is made." Complex because I don't have any hearing loss, and this 'almost as an aside' reference to Systemic Lupus in the picture, is the closest yet I have come to finding proof for my belief in the connection between the two conditions. Because I have not got an official ENT signed diagnosis. The Meniere's Society have been my only source of information.

I gave up on the ENT (ear, nose, throat) consultant years ago, when he began to go down the same route as my then (male) GP: Female, no obvious cause, therefore neurotic. Thankfully my female GP has always supported my belief and been happy to discuss Medscape articles with me, once she realised that I do not visit the wilder shores of internet medical diagnosises (sees ?) and cures.

The meandering route today through the Vale in my new vehicle, was to train my posture in the new driving position, to encourage my joints and muscles to adjust to a new seat and steering wheel configuration. My WAV is beautiful, and I don't wish to be heard complaining , so I will whisper this:
the seat is very uncomfortable and unsupportive but I am sure, given a month or three, I will get used to it and stop whittering on about it to anyone who happens by to admire the new wheelchair accessible vehicle. It does not help that everyone who sits in it enthuses on the wonderful seats -well, all I can say is: VERY short torso and VERY L O N G L E G S may equal average height but it don't fit the average seat.

This has been a Good Day

2007-08-10T22:04:00.000+01:00

To be truly representative of today as a very Good Day, the birthday candle should be sat on top of this (which arrived yesterday):

And, be accompanied by one or three of these, which it was (chilled Chablis mmm zing mmm):

added together with my daughter's company, her wonderful blueberry birthday cake, some thoughtful presents and a few hare birthday cards:

Made a lovely happy stress free day. I am 54, a trifle tipsy, and content.

Wave at my WAV - as it disappears - then wave off the PM.

2007-08-03T23:28:00.000+01:00

Because the silly little nincompoops (which sillyness saves me swearing) didn't do it right did they. Nitwits.

The vehicle converting company got everything right except the hooks to hold the rear wheelchair restraint straps out of the way when the wheelchair is exiting the vehicle. Which is what they had measured for last October, oh, and January too. I don't suppose anyone is interested in this little technicality but I am putting it here to vent frustration. (I look forward to the day when there is nothing left to whinge about, yes I do, and I'm sure I will still find something to blog about.)

The rest of the VW Caddy conversion is rather beautiful though. CD player, aircon, cool remote opening tailgate (sounds like it belongs in a 'machines are taking over the world' horror movie), beautiful colour, clever things to slot the front inertia reel wheelchair restraint straps into when they are detached from the wheelchair frame, so I can leave the vehicle. Shiny karabinas (spelling, any mountaineers out there know the spelling ?) for the rear restraint straps to hook onto the rear of the frame (for which they forgot the hooks), and lots of little VeeDub touches and great wing mirrors. Its a dream to drive but quite big, like a proper van, so I sailed stately down the middle of the country lane for a test drive, with a grin from ear to ear, and confirmed that it is very quiet to be in, no booming internal sounds which can be a problem with an open van, with no jingly clunking noises anywhere from the conversion or wheelchair related accessories.

But its not mine yet. They took it back to the factory, as I refused to sign for it until all was in place and fixed according to the specification agreed with Motability. Hopefully it will be re-delivered in time for my birthday and definitely for the G & S country show the week after, which I am so looking forward to, provided the car parking and show fields have dried out from the lakes they became in the deluges of the last few weeks.

And now there is a a case of foot and mouth not that far away on this little island called England. The last outbreak had a huge negative effect on country life, so fingers crossed that the government and its DEFRA has it contained better and quicker this time.

It is a good sign that plans to contain an outbreak have begun; the Prime Minister has cut short his holiday after only one day and returned to COBRA. (Combined Operations Briefing Room A - aren't you impressed I know that? No ? Oh you know it too.) I don't think it was just a dastardly plan to get him out of Dorset - we don't want too much attention down here, Dorset might get too well known, and crowded.

And ... relax ! Tea ?

2007-08-02T22:16:00.000+01:00

Thank you for your good wishes and support.

It is all fine. Its scar tissue. OK, lots of scar tissue in a big lump that was not there, discernibly, a month ago, so I have another bump in a different place, not hidden by the nascent fringe, much smaller than the original big osteoma, and this new bump may not go away. Or it may, or get bigger, or smaller, or stay. So, its a good thing I am not vain. Ish.

Very efficient service at Wessex Neuro. Quiet clean calm. Sign me in, shift things around so there is room for the wheelchair, inject the contrast medium (left arm vein) pop me on the narrow metal body-shaped thingy, truss me up so I can't move, CT scan (2 quiet minutes), un-truss, restore power (= restore me to the powerchair!) take some bloods (right arm vein) and have a cup of tea.

Tea. The ritual of tea. The reassurance of tea. If I am drinking tea it must be alright. If I am drinking tea they are assuming, or have decided even before the scan results are through, that there is nothing drastic to do today.

I am sorry if I was alarmist. It is what I felt.

There is just a little tinge of 'what-if' in case the bloods show anything underlying - any minor inflammation. I go back to Neuro in a fortnight to be re-assured again.

I have to react 'worst-case scenario', in case it is a 'worst-case scenario', because there is no-one else to organise things for me, to look after me, or mine. Just me. So sort it out as soon as possible. Or have it sorted out as soon as possible.

Sorted.

I am reminded of Charles Dawson's reassurance last November when I was struggling with the 30-or-so glinting staples across my head: "Remember what the Guide says: DON'T PANIC"

Thank you again blogging Friends for your comments.

What A Pain - but don't PANIC just yet Sally

2007-07-31T12:04:00.000+01:00

Well it is almost nine months since my skull surgery to remove the two benign frontal osteomas, and the scar has recovered very nicely from the 39 (?) staples holding the skin together while it healed. Even my silly little fringe (a mixture of silver, light brown and white - without any help from the hairdresser's chemicals) is looking almost respectable, as if I might have, in a mad moment, decided a fringe was a good idea.

So WTF is growing on my skull now ?????? A small lump, that was not there three weeks ago, that is bigger today than it was a week ago, as long as the top joint of my middle finger and as wide. And my head is a bit painful and tense, but that could be tense as in worrying about it.

Lovely GP doctor this morning: what do you think it is Sally ?
Sally: I don't KNOW ! but I am very shaky about it. What do you think it is ?
GP: I don't know. I'll ring Southampton (Wessex Neurology Centre).
Southampton Neurology: Yes I remember Ms Sally, can she come in on Thursday and we will have a look.

Oh Yes Please, the Sooner The Better. Not panicking just yet.

(whispers to self: oh shit !)

OM ... OM ... OM ...

2007-07-28T17:57:00.001+01:00

meditatinginwalesdotnet

Weak title, I know, to introduce the Local Government OMbudsman, but you know how it is when you have been praying, keeping your fingers and toes crossed, wishing, saying little spells, even meditating (OM OM OM) and touching your favourite bit of lucky wood, and then it comes right, it happens and you think, crikey, which little superstition actually worked this time !

None of them. Just the Universe turning and the System working. And just a little smidge, a light sprinkling of fairy dust.

ancientworldsdotnet

Way way back in April I finally plucked up courage to ask the LGO to investigate Dorset social services delay in providing wheelchair access into and around my home, first discussed with my social services Occupational Therapist in 2002 and formally requested in 2003.

An LGO Investigator came to see me in June and yesterday he emailed me to confirm that:

" ... On behalf of the Local Government Ombudsman, I am investigating your complaint.

That, since March 2003, the Council has delayed adaptations to your home. ... ... ... As a result, ... ... ... . You have also suffered stress (exacerbating your health problems), financial loss, a limited social life and have fallen in your home."

(I have thought long and hard on whether to blog it here, as I don't think I am entirely anonymous anymore, and even though the Ombudsman's findings when published, will be in the public domain for anyone to read, the Complainant is not identified. However, blogging is an essential part of my support system, and I need to put it out here. It is what is happening to me.)

The Investigator goes on to summarise my complaint, which is lengthy, and not noted here because DCC have yet to answer my complaint, and until the Ombudsman makes his decision on their response, they are innocent until proven guilty, except this is not a process in a court of law so there is no criminal or civil case being investigated. Just an 'Ombudsmanial' process. I don't know what the proper word for it is either.

What decided me to contact the Local Government Ombudsman is that the LGO can DIRECT a local authority how to put right their systems so that they are acting correctly in their procedures, systems and in arriving at their decisions. So not only can the LGO tell a local authority what to do to put right an individual's complaint, and order compensation to be paid to the complainant if appropriate, but also the fact of a complaint being made through the LGO ensures that the local authority has to change its bad practices, which will benefit other service users.

In the bigger picture, I am hoping that the Director of Dorset social services is able to use the LGO's directions (whatever they may be) to ensure the social services directorate has its necessary share of the County budget (from central government) to fulfil its statutory duties under the 'Fair Access to Care' criteria and the central government guidance on 'Providing Housing Adaptations for Disabled People' .

So, having got to this stage in the process, I am bursting to celebrate, but its early days yet.

And finally the Company converting the VW Caddy into my Wheelchair Accessible Vehicle have restored my faith in them, sorted out the adaptations specification with Motability, which I have confirmed I am happy with, and they have given me a delivery date for next week, and I even know the registration number so I know it really really now exists and is mine, all mine. I will soon be able to wave from my WAV !

brotherwooddotcodotuk

And, no, I don't need them to provide a man to push me - this is one of those occasions when all that is needed are batteries ! And a powerchair with a small turning circle to fit in my small cottage, part-funded by the N.H.S., topped up with donations begged from charities, for delivery when the adaptations for wheelchair access are, finally, in place. Five years on, and counting.

Pride Quantum 600 - geraldsimondsdotcodotuk

Any questions on LGO, grants for adaptations, or equipment, please comment, or email me in confidence.

8 Random Facts - a Double Whammied Meme

2007-07-21T12:22:00.000+01:00

Thanks to Goldfish and Cusp for tagging me to talk all about myself, again. Last time it was only 5 Random Things about me .. I have no problem finding another 8 .. but following the rules is a bit tricky. Memes, I think, are about expanding the blogging universe but, as I said to Cusp only the other day, sometimes I only have enough rocket fuel to keep going round in circles. And very nice circles they are too ... anyway enough chat, here are THE RULES OF THE MEME:

1 Let others know who tagged you ~ Tick
2 Players start with 8 Random Facts about themselves ~ Tick
3 Those who are tagged should post these rules and their 8 Random Facts ~ see below
4 Players should tag 8 other people and notify them they have been tagged ~ see below

Years ago during psychodynamic training, I went through a brief period when I was precognitive about things that would happen to me, once I had de-coded the dreams' specifics.
Jung was essential to get me through it.
I was never actually spooked by it, but was relieved to be back in a more random ordinary scheme of things when it came to an end.

Carl Gustav Jung

Through marriage (dissolved) there is an ancestor who was an early coloniser in North America.
The colony was not a success at the time, the settlers faring little better than the silk worms, and little remains today other than a small memorial there and a bigger one in his home town. However, the gentleman in question was generally thought of as the best of an arguably bad bunch and he did not knowingly oversell the scheme to potential Swiss and English settlers.

My paternal great grandfather was Coxswain of the Hartlepool lifeboat and was awarded the Silver Medal for bravery following a rescue in 1907.

This picture of the Hartlepool Lifeboat crew 1924 is from http://www.hartlepool-lifeboat.org.uk/

I mentioned this Devil's Toe Nail in a previous blog.
Goldfish's Whitby Jet inspired this:
I have a collection of stones found over the last fifty three years: a sling shot (used against Vespasian's invasion AD.53) and geodes (which are the same thing) and what I like to think is a stone age scraper (to turn animal skins into rugs and things) small and black, with one sharp flint like edge and its shape worn smooth with indents that fit the index finger and opposable thumb perfectly; a green stone banded with white marble from Rethymnon beach to keep a piece of Crete with me, and a small piece of natural green glass from a meteorite strike which caused fusion with natural silica. Space Glass !

I really really NEED to have open space around me, ever since I can remember. The times I have felt most restricted were when living in urban surroundings. Even when a child living in a small terrace house I could go up into the attic and climb up to look through the small window over surrounding roofs to fields beyond. When my family moved to a street on the summit of a hill there was nothing beyond, just a vast worked-out sand quarry that was devoid of machinery, the home of hundreds of sand martins and open to all, but seemed to belong to me a school friend Dennis and his Jack Russell terrier Tess. This lovely painting can be found at http://www.colemangallery.com/

I once dined with a Lord Mayor of London (along with a hundred or so other diners), in a beautiful ballroom with a string chamber orchestra in the gallery, surrounded by the Lely portraits of King Charles and the Royal Family.

I was far more impressed by the paintings than by His Worship.

I think I may have been a monk (not a nun) in a scriptorium in a former life. Soon after a performance of Murder in the Cathedral (in which I had sung tenor in the monks' quire, chanting Latin in the vestry of the church where it was staged), I visited Winchester Cathedral and, finding myself in the scriptorium, verified this for myself. Or dreamed it.

The Pilgrims' Steps, Winchester Cathedral.
http://www.winchester-cathedral.org.uk/

I like wood. My book shelves, bed, internal doors, coffee table, book stand, occasional (reclaimed) chairs, are all natural, solid not laminate, unadorned un-painted real waxed wood.

In my sitting room is a large chunk of curlicued oak, which in my fancy assumes the form of a winged sea dragon rising up amongst crashing waves, but in reality was reclaimed from an ancient oak tree being felled in the grounds of Bradgate Park Leicestershire
http://www.le.ac.uk/

Bradgate Hall is now a ruin in Bradgate Park. It was the childhood home of Lady Jane Grey (1537-1554).

She was the daughter of the Marquess of Dorset, who through the machinations of others, at just 16 was Queen for nine days, before being beheaded.

From the website http://www.treesforlife.org.uk/ :
In Leicestershire the Topless Oaks in Bradgate Park were said to have been pollarded as a sign of mourning following the beheading in 1554 of Lady Jane Grey.

TIME TO TAG

This is entirely optional, and open to evolving, so if you have not already been tagged on this lovely Meme, and have visited, lurked, or commented on my blog, I would be delighted if you would tag yourself for this Meme, and comment below that you are doing so, so we can visit you and read 8 Random Facts about You.

POSTSCRIPT: EVOLVED MEME ~
A TIRED PERSON'S RECEIPT FOR BEEF RAGU

Wonderously over at Andrea's blog http://qw88nb88.wordpress.com/2007/07/17/meme-mut8nt-r4/ the original Meme of 8 Random Facts evolved into recipes so I am following this second route of the Meme.

Preparation of this receipt may take all day, or a much shorter time if you don't need the rests and lie downs. All quantities may be doubled without increasing the cooking time. You will need a large lidded saute pan, or a lidded stock pot if you are doubling the quantities and your family/friends/freezer can accommodate it. Minor details familiar to regular cooks are included for the times when physical fatigue results in brain fatigue.

SHOPPING: One or two days beforehand. For 6 portions.
1. 500 grams lean minced beef
2. 1 onion
3. 3 large carrots
4. 3 large sticks of celery
5. 3 cloves of garlic, or 2 cloves if it is fresh garlic dug by someone else
6. 200 ml (7 fl oz) beef stock in a tub prepared by someone else
7. 200 grams closed cup mushrooms
8. 1 large aubergine (eggplant)
9. 400 gram tin of plum tomatoes in own juice
10. tube of tomato puree
11. 3 bay leaves dried, or fresh from your own tree (envy)
12. 2 tablespoons dried mixed herbs, such as sage, thyme, parsley, rosemary.
13. 1 tablespoon Lea & Perrins Worcestershire (wuster) sauce, a brewed condiment including tamarind and anchovies, which you cannot distinguish in the wuster browness, but is very interesting to read when you need to sit down and have a rest.

ONE THE DAY:
Choose a day when you can spend all day doing it, in between rests. Suitable times when you can safely leave the preparation in order to rest are indicated. Otherwise preparation time is about twenty minutes and cooking time two hours. For double quantities, cooling time (for the pot) half an hour off the heat, rest, and ten minutes to ladle into freezable containers, where they can stay cooling while you rest, before storing them.

IMPLEMENTS:
1. The pot as above, and the usual things, such as: chopping board, colander, knives, measuring spoons, wooden stirring spoon, ladle, plates, cling film, bowls, recycling bucket for the vegetable waste.
2. Also, if you need it, a Perching Stool by the stove, from social services equipment store, if you are still waiting for the indoor wheelchair.
3. An office type upholstered chair with arms and wheels, so you can zoom between the preparation table and the sink, if you are still waiting for the indoor wheelchair.
4. For longer rests, a reclining chair, and the bed for longer lie downs.

PREPARATION: This is written in great detail on a good day, as a reminder for me on how to do it, for those brain be-fogged days when I am stumped.

1. An hour or so before you begin, take the meat out of the fridge, so that the coldness of the pack doesn't hurt your hands when you next handle it. Get out the vegetable waste bucket and put it next to preparation area. Put all the ingredients together within reach. Rest. When you are ready ...
2. Chop the onion finely, put half on a small plate, cover with clingfilm, discard the other half, or freeze it if you must.
3. With a knife, prise out three cloves from the garlic bulb, trim off the dry outer layers, finely chop the cloves, add to the onion plate, recover with clingfilm. Rest.
4. Peel, top and tail, and chop the carrot into large chunks, put on a large plate, cover.
5. Wash, top and tail the celery, slice lengthwise then chop into large chucks, add to plate. Rest.
6. Wash or wipe the mushrooms, chop coarsely. Put on another plate and cover.
7. Wipe the aubergine, slice in half lengthways, coarsely chop, add to plate and cover. Rest.
8. Open the tin of tomatoes put into a bowl and cut up the whole plum tomatoes, cover. Wash out the tin, remove the soggy paper label, correction, remove the label, wash the tin, crush and recycle.
9. Take the tomato puree tube out of the package, recycle package.
10. Rest, long or short.

COOKING:
1. Heat the pot, put the meat in, break up the block, season with salt and pepper and brown all over. Transfer meat and juices to a plate.
2. Open the tub of beef stock.
3. To the pot add the onion, garlic, carrot and celery together with a little of the stock, heat gently for 5 minutes to soften, stirring. You may choose to rest now, as the next stage needs attention from No. 4 through to No. 9. If you aim to rest at this stage, turn off heat, remove pot from heat, leave with lid on. Just for a short rest... then,
4. Add the meat and juices to the pot, stir.
5. Add the mushrooms, aubergine, tomatoes and 2 tablespoons tomato puree, stir.
6. Add the bay leaves, 2 teaspoons mixed herbs, 1 tablespoon Wuster sauce, stir. Don't bother to use energy to wipe up spills at this stage. Don't rest yet.
7. Add the rest of the beef stock and stir. The liquid should just cover the ingredients, not so that they are floating around. If more liquid is required, use hot water with a little tomato puree. Put on the lid.
8. Turn up the heat and bring to boil, stirring occasionally, then turn down to a very gentle heat to simmer with lid on. Leave to cook for one hour. You will be able to rest soon.
9. It is worth wiping up spills now, if no-one else is around to do it.
10. Set the kitchen timer for one hour. Rest. If bed rest is required, also set the bed side alarm clock for 55 minutes (or shorter, depending on the time taken to get to your bed). Relax.
11. After the first hour cooking, stir the pot and check nothing sticking to the bottom of the pan. The liquid should be reducing and thickening.
12. Set the timer for the next hour, and rest, as above.
13. After the full cooking time, remove pot from heat and leave to cool. Someone will have to do the clearing up now. Hopefully not you.
14. If you can't face doing anything else except eat it, leave the rest in the fridge for up to two days. Serve with either tagliatelle, baked potatoes or mash, or your low carb alternative, and green vegetables.
15. If double quantities, ladle into freezable containers, leave until cold, then freeze.
16. Tell yourself: Well Done !

Thanks Andrea for the mutated Meme.

Village Life

2007-07-17T14:14:00.001+01:00

I mentioned the formidable Giant located in Cerne Abbas village, in my reference to the Elusive Dorset Dragon http://lifeintheshire.blogspot.com/2007/01/elusive-dorset-dragon.html, although I did not post a picture of the incoming masculine symbolism that took over from the time of Feminine Powers, as it was copyright, although I did give the link to Pete Harlow's photographs at http://www.catnip.co.uk/cerne (Why, why doesn't the Edit Html tab work?)

I was watching Marge Simpson only last evening being seduced by a bowling coach, so you see I am a fan, but really, Homer's do'nut (doughnut?) is not the guaranteed fertility site for rumpy-pumpy as the Cerne Abbas Giant's ..... is. And I have it on good authority, from two sources, that it worked.

Homer, you have a lot to live up to.

For the full story follow this clunky link: (deleted)

I apologise for that link, anyone who may have been shocked. It seems the Independent site got hijacked. Instead, go to http://www.independent.co.uk/ (edited later, thanks Goldfish!) and see the story headlined Fertility Wars.

Enjoy.

POSTSCRIPT: The excellent local weekly free Blackmore Vale Magazine http://www.blackmorevalemagazine.co.uk/ informs that Homer arrived in Dorset courtesy of painter Peter Stuart, and yes it was a commercial stunt.

Yea Who Dance Not, Know Not What We Are Knowing

2007-07-13T23:06:00.000+01:00

Rayon de soleil - Louis Janmot (1814-1892)

http://www.french-art.com/

Beethoven's Ninth Symphony on the telly, starting the BBC Proms season from the Albert Hall.

Ode to Joy: "...whoever has been lucky enough to be a friend to a friend ..."

In the choir, singing it ten years ago; Alexander in the audience at The Lighthouse in Poole. Rest Peacefully Alex.

On the television; from a camera on stage, shots of the audience at the Albert Hall, brought it back to me, when I was there, amongst many others, looking out over the audience from centre front of stage, singing Hector Berlioz's Grande Messe des Morts, a few weeks after the marriage ended, almost two decades ago.

Not singing in choirs now, nor circle dancing, but Joining in the Dance again ... reading blogs:

Follow this link to http://stanmorehill.blogspot.com/ where FSJL writes:

"... the shadow is as needed as the light ..."

a true reminder for those times when the dark shadows seem all there is.

Also:

"...a rule that's not enforced is not a rule

just paperwork that aims to please the eye."

which I will take along with me and quote at the next local NHS Primary Care Trust's strategy consultation workshop.

From 'The Truest Warning':

"... the world's a better place

for those who dare

we see the rules and know

they are not fair."

Which neatly sums up my feelings about the blasted IB50 Incapacity for Work form sat staring at me now.

Thank you FSJL, a right royal poet, whose writings are as constant as the tides.

My post title is taken from another great choral work, Gustav Holst's Hymn of Jesus. Holst's words are from the Apocryphal Acts of St John which he translated from the original Greek. Powerful words, sufficiently mystical to be capable of carrying a personal meaning for one's Self. More information and the full text from the website of that great institution The Halifax Choral Society www.halifaxchoralsociety.co.uk/hymnofjesus.html (The Edit Html tab is dead.)

Singing and Dancing were my great loves in another life, now I read and write, and blog.

And sing along with the telly.

Join in the Dance

2007-07-12T17:43:00.000+01:00

Miss Moppet - Beatrix Potter
from The Project Gutenberg EBook

http://www.gutenburg.org/

Rather than add another postscript to the post below, I begin another post on a postive note, inspired by Dave Hingsburger over at http://davehingsburger.blogspot.com/ Chewing the Fat.

(Now I have a bit of a tech problem here; clicking on the 'edit Html' tab does not work, ever. So forgive the clunky lack of proper links. Yesterday I thought it was me, today its got to be them.)

Synchronistically, Dave writes in his 10 July post JIG: " ... One of our problems, I believe, is that we are always two much intimidated by what's yet to be done, what's got to be done, what's on the agenda to be done - that we are so crushed by future battles that we don't celebrate present victories. So, I'm celebrating." (By doing a Jig, but we didn't get to see that.)

So, so true, so here's a celebration of good news on one aspect of life that was contributing to my 'crash' blogged on my last post - I will soon be able to wave at my WAV.

I was right to sit tight with fingers crossed. The company converting the veedub into a wheelchair accessible vehicle, have re-thunked, following Motability's refusal to pay more, and come up with a face saving reason to go back to the specification we agreed last October that Motability did approve, which I am happy with.

Result.

Although one has to be realistic when one is celebrating ... driving back from the library with a copy of Miss Potter dvd, a stone flew up and cracked the windscreen of my current leased WAV. That is another thing to sort out. But at least I do have a vehicle and independence and can sort it out.

For all the encouragement at 'Chewing the Fat' to celebrate victories won, I am not going to attempt to dance a jig - that would be tempting fate, and completely destroy the image of this crip that I am describing in the IB50 postscripted below.

A bit of a 'crash'

2007-07-11T14:02:00.000+01:00

Not a vehicle crash, just a physical/mental/emotional/psychological 'crash' ... crashed out, caved in; the need for a 'duvet day' turning into a month of wanting to hide under the covers; 'crashing' like a computer crash when there is just too much coming from too many different directions, some of it not that different from a computer crash from incoming malicious software. As my laptop did last week.

Crashing - as we do, those of us struggling with health problems on top of struggling with the system; whatever system it is, in whichever country we are in. None of the sources of my crash are malicious in intent; just life.

Regular readers will know of Social services delays to disabled facilities and adaptations. For five years. My resulting physical exhaustion leading to falls and damage to me and equipment. And fear of falling. And fear of breakdown. I CAN COPE I keep telling myself, I am ok, I can do this. Except it goes on for too long and too many things keep happening and, alone, I feel fear and anxiety that I may not survive it. For I know that: "Fear of breakdown is fear of the breakdown that was." (Reference: Boundary and Space D. W. Winnicott page 192.) More on that below*.

Many things happening that have to be dealt with, so systemic steroid injections to suppress disease activity and release me from the brain fog that is the result of the increased disease activity which is the result of the stressful situations I am in, always remembering that stress triggered Lupus ten years ago and medical advice is to avoid all sources of stress. Yes please, that would be good.

At last, a visit from the Local Government Ombudsman Investigator to examine my files on Dorset Social Services delays -Excellent. Exhausting. Now wait and see.

A resulting return of the fear and anxiety attendant to my preparation for the Employment Tribunal (against local government employer) ten years ago. Almost to the day. Same process, different type of investigation. Same fear (fear of breakdown that was). Will I be believed. Will the local authority's big guns and solicitors run rings round me. Fear of physical breakdown. Employment Tribunal process over a six month period, ten years ago, broke my health and triggered Lupus.

Meanwhile social services front line staff on the alert (as the LGO Investigator informed the County Council solicitor) so social services front line staff and team leaders are firing off letters to me, which are designed to show them in the best possible light and me as a problem service user, and all have to be answered, very carefully, to protect myself.

Using laptop on lap (no wheelchair accessible desk, no space for wheelchair or desk until adaptations in place) causes a return of severe pain in joints and soft tissues. But I have to do it because there is no one who can do it for me, no advocate or agency with the knowledge or training. Even after I have achieved my necessary facilities, there needs to be change in all social services for other people out there, who do not know their rights, who put up with delays and decisions that disable them from social inclusion and a family life. I know. Really, I know. There would be more official complaints if more people were informed on their rights by independent advocates, and supported by professional advocates to enter in the Formal Complaints procedure. Not all areas of the country have access to a Disability Law Centre. Certainly not in Dorset.

And another thing ! .... After years of distance my Mother, hundreds of miles away in the North, is wanting contact, which thanks to years of psychodynamic counselling I can now cope with without harm to me or mine. This recent change in her (and probably me as well) is weird so I am planning a visit to her, while we are both alive to do it, as she is very aged and frail and I have not been able to travel to her since ill health began in 1998. Now possible with the expected new WAV and a PA. So I am now researching (from the Disability Rights Handbook http://www.disabilityalliance.org/ ) and writing a Community Care Grant application for petrol costs and self catering accommodation, for me and my Personal Assistant and my wheelchair, as I cannot do it without her, or it. And I have had to book the last accessible self catering cabin in the neighbouring forest and pay up front to secure it without knowing if I will get the grant, so not looking forward to the next bank statement.

This visit to my mother is entirely dependent on a new and different Wheelchair Accessible Vehicle, which will not have the current vehicle's noisy wheelchair tie down system, so I can contemplate a long journey. But this too is now a problem and source of Lupus exacerbating stress. The new WAV via Motability from vehicle converting company B has been blogged about before (18 March 07 sorry link not here). The expected new WAV is the result of application to Motability last October (nine months ago) based on advice from the vehicle converting company B, witnessed by PA and photographed by me to send to Motability with application. The new WAV was due for delivery May 31st. Panic by B ... what they said in October would be workable by me in my disabilities, at end of June they said would not work, but need extra bits costing another £X00. Motability declined to pay. B pressuring me to pay. I don't have £X00. B saying it is my fault, my misunderstanding, my responsibility. Stalemate. I can do nothing but wait (anxiously) for them to accept that I cannot pay, Motability won't pay so they will have to fund it themselves. After three difficult telephone conversations with my contact at B I know he is determined not to admit his error, despite my witness and photographs and to discredit and blame me. I just have to sit tight with fingers crossed and wait for him to accept responsibility.

~~~~~

*Fear of Breakdown ... Fear of Breakdown that was:
In my psychodynamic counsellor training and training analysis, I learned that I have been blamed by my parents for all their problems since I was six months old, when my father had his first psychotic episode**. Living with that left a lasting shadow on my adult life. Charles Dawson http://www.charlesdawson.blogspot.com/ blogged on this form of abuse. My parents saw me, and treated me, as the source of my father's psychotic episodes. If they could control me and control my actions and my words, they could control their lives. I experienced the first breakdown in the holding environment when I was six months old. I left home at 17 in order to survive. Later, being married took me out of my father's dominion; being divorced risked being sucked back in. Defences had to mounted. I am now well armoured. There are chinks in the armour. Whenever some authority figure; be it a service provider, or a national organisation, attacks me I have to mount a defence that recognises the fear I feel from childhood, but responds appropriately as a capable, (although knackered), intelligent and informed adult.
(** Post-Postscript: In case I am misunderstood, let it be known that it was not my father's psychotic episodes, from his bi-polar disorder, that left a shadow on my life, but the way my parents projected their discomfort onto me; as the cause of his illness, and blamed and controlled me as their way of not accepting his medical condition.)
~~~~~

Blogging is one of my defences against the dark powers; the psychological shadows, the bureaucratic local authorities. Connecting with other bloggers is another defence; bloggers who have experience of this, in their professional lives and/or in their ill health, this being disabled by the system, by society, by the brick walls of budget cuts and bureaucracy. Recent negative waves experienced in my corner of the blogosphere did not help and the loss of a blogging friend of intelligence, wit, knowledge and experience was keenly felt.

Thank you to those who remain, and thank you for those who continue to connect, who continue to fight the good fight. During all this down time I have been aware that your lives and blogs are testament to a good fight, worth fighting for.

POSTSCRIPT ... the morning after ...
In the post today, Form IB50 - yes, the dreaded IB50 which I thought, foolishly, I was immune to - 'Incapacity for work questionnaire'. Why did I think I was immune ? Because they have not sent me one for a decade. I do not have the capacity to comply with this form's requirements. If I do this, it will take up available energy this week, when I should be answering social service's letters from two weeks ago, before I answer their letters from last week, then fill out the community care grant form, and write to the Warm Front Scheme about their contractor's disabling attitude and refusal to meet my disability needs (no I didn't bother to blog that one), and on and on and on ...

The End to A Perfect Day

2007-06-08T23:36:00.000+01:00

Corfe Castle, Dorset

thewalkzone.co.uk

Feeling very relaxed after a Perfect Day Out, I have spent some time this evening reading your blogs and re-visiting my own writing and your comments. I have often felt over-whelmed by the beauty and determination blogged elsewhere. A bit teary too. Being here is a good end to a Perfect Day.

I had to be in the relaxed frame of mind a Perfect Day brought me to, to push my fingers to type wwwdotbloggerdotcom because so much got tied up with blogger and blogging. I have felt incapable of writing as the Sally I know and feel comfortable with, until I had let time weave a new skin over that lesion. I have felt incapable of connecting with this important part of myself.

Update on my life, for the record, which apart from my Perfect Day, still sucks ...

The dinosaurs and money-bags are still lumbering over different ways to delay meeting my disability needs. Even my last resort, the Local Government Ombudsman, did not reply to my complaint about Dorset Social Services within four weeks as stated, but four weeks and one day on, emailed me to say: sorry, going on holiday for a fortnight, will contact you as soon as possible when I return. So that is alright, is it? I ask - to myself, as he has disappeared on holiday. I will still be here when you get back, provided I haven't fallen again, worse than last time.

The organisation I referred to as Adapta-Crip when I self referred myself to them last September, (as Social Services were going on holiday before they had time to refer me), have written and answered my question on why they have done nothing to help me with social services (keep up, sorry, but its a long sentence), as they are contracted to by social services and other government funding; saying social services have not made a referral so we do not have an open file on you. I cannot untangle that enough here or in my own mind, to add it to the list given to the LGO about the four year delay, sorry its now four and a half years delay, to answering my request for wheelchair access into and around my home.

The Speculative Burglar (no, not Burglar Bill, see post below, sorry too brain tired to link) may have been my neighbour after all, unlikely though it seemed at the time, due to ... well, nevermind, but he is receiving treatment. This is just supposition. That his sudden onset medical problem led him to behave in such an un-characteristic act. I could be wrong. But, sorry though I am for him, his dog and his wife, for me its preferable to the Speculative Burglar suggested by Charles Dawson's comment.

I miss Charles Dawson. His writing was always informative, entertaining, inclusive and intelligent. Whatever happened in the backgroud, it is shameful that a published diatribe, sorry, comment, on someone else's blog, should have been instrumental in his departure. For whatever reason. It is rare, as someone else put into words for me, better than me, for there to be a male crip writer, writing regularly, and that is not to detract from the other male crip bloggers, here in the UK, USA, and New Zealand, but you male bloggers know you are few and far between, so we could not afford to loose another valuable, respected and well loved one. For whatever reason. Shame on you that was the very public party to his departure. For whatever reason. Blessings on those of you who have visited (here) and emailed me. You have been in my thoughts.

Enough. Charles if you are lurking, blast you, come back ! Fight the good fight.

My Perfect Day:

Cloudy not sunny, warm not hot, Friday not Monday (not neuro-toxic drug day drugged), bouyed up by steroids, on a roll. Home Helps back in harness this week (fully forgiven; one's husband serving in Iraq, the other's friend died while they were on holiday - what am I complaining of !) and because they are back, the housework, shopping, laundry, all worked smoothly, so I have been able to have the energy to see a way clear to going out, safely with my PA. Which reminds me, not to complain of Social Services alllllll the time. I have had a budget through Direct Payments for some years now, 9 3/4 hours home care and one session 'day care' per week which pays the PA, which means I am able to go further afield safely. I acknowledge that many other crips are struggling, as I write this, to achieve the same basic rights for themselves.

I GOT TO GO TO THE BEACH !!!

My PA drove my Wheelchair Accessible Vehicle, the twenty miles to the bit of the coast at Swanage that has disabled parking next to the short slope down to the short sandy beach with the wooden groynes to hang onto when the walking stick sunk into the sand, and to sit on at just the right height to have my feet in the waves ebbing and flowing away and towards me. I just sat there, blissed out, for an hour, and it is years since I have been able to do that. A combination of circumstances; steroids, PA, cloudy and just warm so able to cope, and a parking space right next to the bit where I could manage the beach, leaving the wheelchair in the car. Last year I tried the same town but could not park.

On the journey there, taking a back road that up until the last century had been the main road, we drove through leafy cuttings in the rolling slope, passing old stone farmhouses with stone tiled rooves (rooves ? roofs !), over tiny bridges over deep narrow streams, and small fields with thick hedges being left or cut for hay. One field gate open, so we pulled in and stopped for a picnic lunch. The field fell away down the hill in front of us, the restored Swanage Steam Railway toot tooted along the valley below, and the magnificent splendour of Corfe Castle stood in the gap between the two hills off to the right. We lunched with a hare, who was wandering along the field in front of us, delicately choosing which herbage to nibble for her lunch. Skylarks, chaffinches, honeysuckle and dog roses in the hedge, unchanged for hundreds of years.

I have been earning my living also. Using what spare energy I do have to put something back into the community as a volunteer, in recognition that I live off benefits.

Dorset is one of nine areas in the country to trial a Local Involvement Network: LINk. Being facilitated by the Commission for Patient and Public Involvement in Health. To replace the Patient and Public Involvement forums, which, word has it, are being disbanded by the government because they were successful, or depending on which side you are on, because they had become local vehicles for party politics.

Anyway, my thinking is there is no money at County Hall for the other love of my life, disabled rights of access to the countryside and coast under the Countryside and Rights of Way Act 2000 (Class 1, 2 and 3 vehicles - wheelies), so rather than use my energy banging on about that, when there is little funding for replacing stiles with wheelchair accessible gates, I may as well see if the LINk can make a difference to funding for, wait for it, Health and Social Care. Another government initiative, bringing together (mixing up?) the previously separate National Health Service -v- Social Services and calling it 'Social Health and Care' (or was it Care and Social Health, or Health and Social Care ?). My entirely personal view is that it will start a war between the two, with each one grabbing a potential client a.s.a.p. in order to get a bit extra funding. As a community volunteer, to me it feels like I am involved in a game of chase the funding; use your energy in the field of community involvement that is the current government initiative of choice for government funding. Cynical, me ?!

I went to the first 'Event'. Well, they paid me (£10 food voucher and £4 travel expenses) and they had cakes and strawberries. I watched the Powerpoint presentation, read the information boards, talked to the bods with name tags on, and still didn't understand the questions. To one very helpful man from the Commission (helpful initially with my wheelchair ramp, then with the form filling and questions) I said; this seems very nebulous. He laughed. It is, he said.

That's all right then.
Its not me, not my cogdysfunct, not my impairment.
Its the government !

As a friend of mine says whenever his farming hits another batch of form-filling:
" Bloody government ! "

Dragons, St George and other Bloggers

2007-05-22T21:19:00.000+01:00

Paulo Uccello - St George and the Dragon c 1456
For Charles Dawson a real friend.

(and NO ...
I still don't know what was going on in the playground)

Also, Gimpy Mumpy, who is remembered with fondness.

Change of Scene

2007-05-20T18:59:00.000+01:00

nasa

This is where I would rather be; no, not in space, but on the Island of Crete. England in May is wonderful, but to be on holiday again on Crete would be soul restoring. Provided I didn't come across any of these:

Marine Style flask from Plaikastro c1500 bc - wwwou.edu

There were times towards the end of the holiday when one of these double axes would have been useful to keep my companion in check.

Ceremonial Double Axes - Herakleion Museum - ou.edu

Late Neolithic Pot wwwou.edu

At the Herakleion Museum were things that made me think of reincarnation, as a possible explanation for why they resonated with me. The shape of pots like this reminded me of one I had made over many weeks during an art course some years ago. I had found it mesmerising to make; it had been about 30 cm high, built up by hand, and batted smoothly on the outside with a piece of flat flexible wood. All the while I spent smoothing it, I had been thinking of the pattern I would incise on it; simple lines and spirals. When I saw this pot pictured on an Open University website I felt tingling up my spine.

But my favourite image of all is this lady, who I first found when I was about 11 years old, in the school reference library, in a book on costume. I was entranced, that females could be this powerful.

Snake Goddess c1500 bc Knossos Palace

Herakleion Museum - wwwwikimedia

In the Herakleion Museum I stood by the glass case in front of this 18 cm high figure and wondered at the sacred red colour painted onto the naturally black striped shells that had been placed around her. Perhaps they had been found with her in the Knossos Palace.

I let the swirls of other museum visitors pass me by and stood for a long time drawing her from various angles. She is very finely detailed; on her head sat on her cap is a bird, possibly Athena as an owl. Her black hair hangs in a heavy plait down her back; the maker finely modelled the curves of her back to leave a space in the hollow of her back where the plait hung free, finally resting on her bottom.

I purchased a museum standard replica, cast from the original and painted in the original colours. I have found the same shells in Shell Bay on the Isle of Purbeck in Dorset and they surround her where she stands quietly and privately in my home, a reminder of where I would rather be right now.

Ante Chamber to the Throne Room Knossos Palace - wwwou.edu

Behind the Scenes

2007-05-19T16:02:00.000+01:00

geocities.com

Before I began a blog, I used to read the BBC's Ouch! website. I even commented a few times, but my comments were never published. I thought, as one does, that there must be something I didn't know that was an essential ingredient in order to have one's comments published on the Ouch page. Ho Hum.

Before my year group began our three year Psychodynamic Counselling training with the Wessex Counselling Service (affiliated to WPF the Westminster Pastoral Foundation) we were given a few rules; all sensible, all grounded in the experience of those wiser and more experienced course Directors, who had trained many other year groups before us:

Rule No. 1 - All contact between members of the year group was to be within the boundaries of the self awareness group sessions that were the foundation of the training course. No contact outside of the training course, to discuss the content of the self awareness group, or other members of the group, would be tolerated. Anyone violating this essential rule would be dismissed from the course and their (substantial) course fees would not be reimbursed.

At the time we thought that a bit unnecessary, but we chosen few who had made it through the selection process were so relieved to have made it thus far, that we signed our agreement to that rule.

As the months, and then years, went on, we understood the Rule. We trusted the Rule and because we trusted the Rule, we felt safe and boundaried by it to explore ourselves, our relationships both in the training group and in the outside world, and to equate our own life experiences to the theoretical framework of our training. It was also an essential grounding in keeping strict boundaries around counselling relationships, so that when we began seeing clients, we were used to a contract based on this trusted up-front relationship.

We soon came to understand that to deal honestly with each other, and to trust to the process of the training, we could rely on the Rule.

Blogging is not so ruled. Bloggers can email each other behind and beyond what appears on their blog. Other bloggers of course, if not in the loop, know nothing of this, and can only deal with what appears on other bloggers' pages.

I am picking up clues that there may be a connection between my comments on Ouch never being published, my memory of the Rule, and early experiences in my blogging life, where I seemed to be actively unwelcomed by one blogger. I have remembered that discomfort and always been open, welcoming and encouraging to anyone who has come newly to reading and commenting on my blog. Thankfully no other blogger has repeated that early snub to my blogging involvement. On all other bloggers' pages, I have been welcomed and openly interacted with. It has been, and mostly continues to be, a joy.

Blogging is not an analytical process or a counselling arena, despite my tongue-in-cheek attempt to argue that IT IS SO. But in this disablist world it is a space where I, and many other bloggers that I have met and communicated with here in the blogosphere, trust the process of blogging and trust the bloggers met on their computer in that process.

Until something happens that shows that, in some arenas, there is far more going on between bloggers than appears on blog pages. That shows there is at work a personal process that is not up front and obvious. That is not necessarily what is seems.

Life is complex enough outside the frame of the laptop screen, without another blogger messing it up behind the scenes. This is where we come for contact, support, friendship, information, encouragement, fun, laughs, shared problems and shared joys. With two exceptions (and he has only ever commented once, and she has only ever commented once), I love you all and love your contact with me.

Stuff the rest of it.

moviecitynews.com

It's all relative

2007-05-15T20:40:00.000+01:00

News just in from the village pump, acquired during a brief welcome respite from the rain which allowed the sun, birds and parishioners outside for a brief spell. (This news item has been confirmed by the Goldfish.)

From 1st July all churches have to display A5 size NO SMOKING signs outside the entrance door(s).

I heard this from my neighbour the beef farmer/church warden/school governor/fellow trustee (too many jobs, not enough villagers to go round) who was incensed (although low church) by this latest example of the government telling him what to do.

He was incredulous, until I checked with him whether he knew that A5 was just a bit bigger than his wallet and not the size of that new fangled flip chart (A2) the Parish Plan committee used to draw spidergrams instead of listening to the Chair or having discussions.

That cheered him up enormously and we discussed whether the size of the NO SMOKING sign ought to be in proportion to the size or capacity of the building, so that A5 for the small parish church would equate to a NO SMOKING sign as big as my WAV outside the door(s) of Salisbury Cathedral.

Photo by Sally

Salisbury Cathedral West Front - completed circa 1265

Which led to us considering, not entirely seriously, how many languages Salisbury, as a matter of course, translate their signs into, and whether we are exempt from translating NO SMOKING into other languages, as the only languages regularly visited upon this parish are Dorsetshire, Grockle (as spoken by non-locals) and Incandescent Swearing.

~ ~ ~ ~ ~

On a more solemn note, I am despondent at the news also received today, that my new Wheelchair Accessible Vehicle will not now be delivered on 31 May, when the lease on my current Renault Kangoo WAV ends, and I have to wait until mid-July. They are still building it.
Much scurrying around by Motability, Brotherwoods, Car Insurers, MOT certificate checker-uppers followed. Disappointment from my Bump (who cannot withstand the noise of the wheelchair tie down bracket in my moving Renault Kangoo WAV) as she had already got her bucket, spade and shades ready, to hit the beach the very next day. Rain permitting.

Asperger's, Anonymity and other ripples on the pond

2007-05-13T17:30:00.000+01:00

Addendum 16.5.07 - see Postscript for experiences over on the other side of the pond.

I have a close relative, aged late 20s, with Asperger's. A was always the brightest kid on the block. Some years ago on work experience, before there was a diagnosis, A wiped the computers of the company providing the work experience, beyond and below the computers' factory settings. A was a bit of a genius, still is, with computers, but in those days was still experimenting.

Some years on, A has found an appropriate niche and is safe, as safe as any of us can be in this world, and enjoying life so far as a disablist society will allow. That means A has sheltered employment, sheltered accommodation and an accompanied social life.

A is still taken advantage of, usually without realising it until later, or when it is explained, then A is embarrassed and quiet and very hurt and retreats a little bit more. The retreats have always limited A a bit more, for A is naturally an outgoing social kind of person.

In written communication A is enthusiastic, optimistic, wants to share achievements wanting praise like the rest of us, expects the world to react in the open honest straightforward way A approaches the world. Except to close family, A never refers to the Asperger's condition; it is that part that A feels is very hidden and that is how the unaware world deals with A.

So - often A is used; by carers, by older, wiser, craftier, contacts. A can be manipulated without knowing it and has been used as part of a game plan by others, then is left to carry the brunt of reactions to the little game. A protests it was not so and is bewildered. Close friends and family have to wait until A's strong emotions have subsided a little so that A is open to having the scenario explained so that A can appreciate how it happened, to build a bit more onto the protective shield, from that experience.

A thinks, hopes, the humiliations of teenage years, the pre-diagnosis years, are in the past. A now has a public profile in the voluntary role A carries out and is well known in that circle, community and geographical area. A is more protected by the fact of having a public image, and gregariousness that suits that voluntary role.

We still have to look out for A, just in case A unwittingly, or encouraged by others; drops a pebble in the pond and is suprised by the ripples that come crashing back to the shore.

POSTSCRIPT:
Andrea has written an informative and worrying piece on this condition in American society, and commentators affected have given their experiences. Read it by clicking on THIS

Don't panic Sally

2007-05-13T00:31:00.000+01:00

Monday 14 May Update - see Postscript at end

Saturday night 11.30pm ish:

I may delete this in the morning, but for now I need to be here.

Loud rat tat tat on my front door, a few metres from where I am sat. It is 11.10pm

I am not expecting any one

It is dark in this quiet village, no street lights.

To bang on my door the person has to walk up my drive and climb some steps.

They have to know where they are going.

I phoned the police.

Police - are you expecting anyone.

No, and anyone that knows me, knows I do not answer the door after dark.

They will send a patrol car to drive through the village (which consists of one road)

Do I want them to knock on my door? How will they know which house (no street numbers) Its ok Miss Sally, we have ... er.. we have 'sat nav'. Chuckle, yes I know what you mean. No, its ok.

You relax now. Yes, thank you.

Quiet.

Maybe someone was banging on my door for sanctuary and now they are laid on the steps bleeding to death (I have been watching 'The Transporter' on tv!)

Maybe I will get up in the morning and find something dreadful waiting for me.

Maybe they are in the back garden waiting for me to react; its just open fields beyond.

I ring again, I want to say; yes please, please knock on my door and walk round the back and shine your bright lights up down and around every inch of my garden and the field beyond and and and and

ring ring ... putting you through ... sorry, all our agents are busy, please hold ...

please hold ...

please hold ...

still holding when
Five minutes later very bright lights very slowly drive up and down - full beam and then some, plus slow red and blue on top .... two, three, four, six times past my house.

please hold ...

Oh f... it.

11.55 pm Blogging it feels more connected

12.06

12.20

Why ?

Who ?

Who and Why ?

It is so quiet here, you can hear people walking past along the road, after the pub at the end of the village closes. I didn't hear anything until the resounding banging on the door - and it wasn't just banging, it was a proper knock on the door, five raps, in a normal rhythmn. (I am analysing this thing to death so I can sleep tonight).

But then, I was listening to Joe Cocker (he has aged !) on Parkinson tv, and he still rocks. But not loudly. I never have the tv loud (tinnitus) and if my semi-detached neighbours wanted to let me know it was, (because they always, always go to bed at 10.30) they could do what they used to do when my Bump was a teenager permanently listening to loud music, and phone me !

Its quiet, I don't know what who or why ... but someone did it deliberately.

Of that there is no mistake.

Did whoever it was stay around long enough to see the police car. That is all I could do to show them I'M NOT SCARED OF YOU.

I HAVE THE BIG GUYS ON MY SIDE.

You see, this is the only situation in which I wish I did not live alone.
This is one of many situations when I wish my Airedale was still with me.

I would have let her out and that would have sorted it. Grrrrrrrrrr. (dog knashes teeth)

but the when I had my big brave Airedale I never had any bother, never was concerned, and then, then, I could run.

As I said to the police on the phone the firs time ... I am disabled and I live alone.

That was enough ... to get a result with the police attending.

Is it enough ... to make this sort of thing happen.

Who have I annoyed recently ?

The teenager in the field (his grandfather's field) this afternoon, cutting patterns in the field with the sit on mower for 1 hr and 45 minutes. I retreated indoors.

Social Services two weeks ago - to the LGO. Nah.

That's it.

The Stalker was warned off by the police four years ago.

The violent neanderthal farmer living a mile away was nine years ago (although the calming influence of his father is no more, he died last month .... no that's ridiculous) (Although he did take a gun to his first wife and I don't even need to add 'allegedly' to that statement.)

12.30am

go to bed Sally.

Take a beta blocker or two and .... no, that not a good idea with the amitryptiline that eases the pain so I can sleep. Ah well, make a another cup of tea, start another book.

POSTSCRIPT:
Monday 14.5.07

I said I want(ed) a BIG DOG ... a friend sent me this cartoon with the dog barking at a tramp, but tramps, in my experience, are harmless ...

and following on from the comments and other email friends' advice, I have come to the conclusion that it was a speculative burglar, and not a nice one like Janet and Allen Ahlberg's Burglar Bill.

The Neighbourhood Watch Co-Ordinator is on to it, and the police Community Beat Officer is coming to see me to advise on security.

I still want a dog, but I will need a dog walker. The Cinnamon Trust may be able to help, but that project will have to wait until the building adaptations for disabled facilities are completed. Which facilities will have to take account of space required for a dog bed and feeding bowls (and toys) - oh can't you tell I am excited by this fantasy already ! Thanks Charles and Blogging Mone for your supportive comments and suggestions and email friends for support.

Thunked

2007-05-10T17:25:00.000+01:00

Charles Dawson memed me for this award which I am chuffed about, but the link to The Thinking Blogger Award is so very slow it makes me wonder whether it is constipated. It is very reassuring to have feedback and so I am happy to make my own Thinking Blogger Award to the following five people who may display the Award on their page and move the Meme on to make their own Thinking Blogger Award to another five bloggers who make them think.

(CogDysfunck'd Sally Thinks: now I have to work out how to get the Award displayed on my side panel.)

A new-to-me Blogger found via Blogging Against Disablism Day: Andrea's BADD post about Colony Collapse Disorder. To quote the Queen Bee herself: "You can always tell you've learned new things or taken thoughts into new directions when your brain feels as stretched out of shape as socks you've worn for two days." Also a theory close to my heart is her post Cyborg Cool -v- Crip Pity. Every post is a gem - she has connected me to those times and makes me think into situations when I have felt society dis-ease in The Privilege of Being Clouted by a Cabbage.

I have been reading Wheelchair Dancer to connect to and think about how much I miss dancing. I was thrilled by the Ballet Rambert decades ago, and last year I experienced for the first time the CanDoCo dance company.

Wheelchair Dancer has expanded my understanding of the interaction between dance company members and how dance is brought to fruition. After the performance of the CandoCo I was entranced to see in the foyer on the trendy sofas, two young girls (presumably from a dance class brought along to the matinee) working through the movements of the wheelchair user when he was not using his wheels. By thinking how they would dance without using their body below their hips, they seemed to me to be doing what the Wheelchair Dancer has described in her posts about interaction between the dance company members. That had me thinking for many days.

Blogging Mone has expanded my thinking of the deaf community and how sensory impaired people are dis-abled by society. Also, the subject of deafness is connected to my very early childhood memories. My favourite Uncle's Mother was profoundly deaf and she had a very hairy black Scotty Dog who I remember sitting next to me and, sat down as we both were, he was as tall as the toddler me and he always made me sneeze. I know now he was just using me as a leaning post ... sorry I digress, the point is - as a very young child I was taught how to enunciate my words clearly and face her so that she (the Uncle's Mother not the Scotty; see last paragraph below) could lip read me. She always rewarded me with a smile and communicated with me, which I as a small child had to concentrate on, as her speech was different due to her profound deafness. At my very young age it was unusual to be given that much attention by an adult and I remember her for that communication particularly fondly. That memory would not have been recalled without Blogging Mone making me think about it.

A few years ago in an attempt to overcome the effects of my tinnitus in crowds, I thought lip reading classes would help. There I learned that lip reading is hugely difficult, yet it was being offered as an adult education class for one hour a week. Hopelessly inadequate but was it better than nothing ?

Also, I am indebted to Blogging Mone for her feedback of German equivalents or comparisons to my own posts' topics, and her valued comments always lead me to thinking on my own subject further, taking it on a stage further.

Spotted Elephant at The Bipolar View makes me think of things that perhaps a woman in her fifth decade living a relatively protected rural life in England, might otherwise never have been given the insight and links to think about. I am thinking: feminism, p.o.r ... .g.r.a.p.h.y (my attempt at thwarting such searches finding this site) . Also, I am indebted to her for bringing me back to thinking about my father's bipolar disorder which was mis-managed in the 1950s/60s and caused me a difficult childhood. Thinking on her blog has redeemed aspect's of my father's influence on me.

I wanted to include Quaker Dave, the Quaker Agitator but needless to say he has already received the Award, so its just going to have be Bumble.

Bumble, well I think about Bumble a lot. One week he is throwing his hay around in a very adolescent way, and the next he is orating with the best of them. Getting to know and understand Bumble through his regular Monday slot on Spotted Elephant's blog has expanded my thinking of the animal world, not just companion animals, but all animals that we interact with. They are thinking about us and figuring out ways to interact and communicate with us, either to protect themselves from us, or to protect us from ourselves. Dogs and cats are relatively straightforward in comparison, as are chimpanzees.

Thanks Charles !

WORLD LUPUS DAY - 10 MAY

2007-05-10T10:40:00.000+01:00

http://www.lupusuk.com/

S L E

Systemic Lupus Erythematosus

Lupus - probably the classic multi-system illness

90% of Lupus patients are female

No two Lupus patients are alike

Fatigue and joint/muscle pain are common

Patients may have few or many symptoms

Lupus is neither infectious nor contagious

Major organ damage (heart lung kidney liver brain) is quite possible

Lupus remains incurable

Early diagnosis can make a difference

(Source: Lupus - A GP Guide to Diagnosis

published by Lupus UK)

~~~~~~~

Light Sensitivity

Exposure to sunlight can result in a disease flare

Fluorescent lights are also a danger to Lupus patients

Energy saving lightbulbs - known as CFLs

(compact fluorescent lights)

can also result in disease flare.

More information from my earlier POST on this subject.

" ... someone you know may have Lupus ..."

Please sign the PETITON to the UK Parliament

by clicking on this word - PETITION

to ensure that Incandescent lightbulbs are not banned

in favour of low energy CFLs

Bowling Along

2007-05-07T01:12:00.000+01:00

Me and the other crips went bowling this evening. Five of us; one wheelie, one with a prosthetic arm with a shiny metal gripper on the end, one partially sighted/partially blind, one partially deaf, and one with a stick (I am excluded from the stick category as I was sat on my wheels all evening until I got up with the stick to get to the wall to lean on while I bowled).

This was proper bowling, non of your fancy machines to pick up the pins. Wooden balls of varying symmetry without finger holes, wooden pins, wooden floor, and a wooden chute relying on gravity to run the returned balls to the bowlers. Chalked blackboard for the score. And the able bodied had to do all the picking up of the pins while we propped up the bar.

And I hit all nine pins with my second ball !!!

www.dvsonline.co.uk/skittlealleys

As there were fifty of us for the annual pre-bowling supper, and I knew of 5 crips, the other 2.14 crips must have been hiding their hidden disability.

I love bowling in Dorset, it was my first introduction to proper Dorset folk over twenty years ago. You can tell the proper Dorset folk by the way they bowl; standing still, on the line, feet apart, ball held in both hands, swing back the wooden ball between the legs then swing forward for momentum; ball released, hands in front and fall to the floor ! On purpose. Then return to your pint. Magic.

Home to take my weekly pills delayed for this special annual occasion. Now sat blogging waiting for the screeching tinnitus to recover from the cacophony of wood balls being flung along the side, and sometimes off the sides, of the bowling room.

Time to take my sore shoulders, stiff elbows and tingling hands to bed. Its alright, I assure them, you won't have to do that for another twelve months. And ... relax.

Just for the Record - my first 1st May BADD post

2007-05-04T22:40:00.000+01:00

Having joyfully found my lost original 1st May contribution to BADD from the www, via my site meter, I am re-posting it here, and thank everyone for their comments, which are still attached to my truncated 1st May post.

I used the Goldfish's categories for inspiration:

Abortion and Euthanasia

I am old enough to have been spared abortion. If I had been an impaired foetus, technology had not progressed to looking at a foetus in the womb and so society, then, had not progressed to deciding on its economic viability.

I will be old, sooner or later, depending on my degree of impairment. I hope that society has not progressed, by that time, to economic euthanasia.

Access Issues (outside employment)

Nine years ago I was given a NHS manual attendant wheelchair (I cannot self propel) but the NHS did not provide an attendant to push me. I stayed at home, waiting for volunteers. Six years ago I requested, but was refused, a NHS electric wheelchair. Five years ago I had begged enough charity to buy one.

Then I asked the District Council and the County Council social services for wheelchair access into my home. Four years ago I asked for wheelchair access inside and around my home and the NHS assessed me as eligible for an electric wheelchair but, as I had an outdoor electric wheelchair, with their funding I had to promise to only use their funded wheelchair indoors. They would fund 20% of the cost. Two years ago (after I had waited two years) the County Council social services assessed me as eligible for wheelchair access into the house and into principal downstairs rooms.

Last week I asked the Local Government Ombudsman to look into why the County Council were still preventing me (and wheelchair using friends) from having wheelchair access into my home; preventing me bringing my outdoor wheelchair indoors for storage and charging; preventing me having the use of an indoor electric wheelchair; preventing wheelchair access to principal downstairs rooms; preventing assessed as eligible for provision of safe usable bathing, toileting and washing facilities, and not providing wheelchair access to disability related equipment for communication.

Three years ago I asked the Village Hall Committee to comply with the Disability Discrimination Act and provide wheelchair accessible toilet facilities behind the toilet door that had the wheelchair symbol on it. And asked for one of the two fire escape doors to have a ramp down the two steep steps. Two years ago the Parish Plan recommended the wheelchair accessible toilet and fire escape. Last year the Parish Council recommended the same to the Village Hall Committee. Nothing has happened. This year I am too tired to go to the Annual Parish Meeting and witness by my presence that they have done nothing.

Art Against Disablism

Last year I didn't join the local art class under the adult education provision, with a favourite artist teacher who I had known years ago, even though it was held in wheelchair accessible premises with toilet facilities and parking; because I needed practical assistance, reliable, guaranteed each week, and no volunteer service could guarantee that, and social services budget for social inclusion would not stretch from paying my PA for one session, to two sessions, of 'social inclusion' a week.

Definition and analysis of Disablism

It is illegal - Disablism - just like Sexism and Racism, but like those isms, it happens. Nothing more erudite than that I am afraid, here.

Disablism within Healthcare Systems

I had a bump on my forehead, a benign osteoma. Over twenty years it grew to being Big. Painful. Unsightly. Benign none the less. The Medics did not want to operate to remove it because I am a wheelchair user and that would be difficult for them on the in-patient ward. Yes, they said so, to my GP. The next reason the Medics gave for not wanting to operate on my benign osteoma was because I have Lupus. My GP had to be persuaded by me, and then be persuaded by me to tell the Medics, that I was well enough to not have Lupus related complications during or after the surgery, but I might not be in a few years time when the osteoma had grown through my skull into my brain. Best to do it now, don't you think ?

Education

One of the written-down reasons, taken from the officially approved list, that my Occupational Therapist gave the budget-deciders at County Hall, to persuade them to fund my assessed as eligible disabled facilities and adaptations, was that I would then be able to pursue further education and academic study.

No, I said to my OT, I have no intention of pursuing a recognised course of academic study. Been there, done it, got the certificate. Thank you but No Thank You, I am too old to jump through that particular hoop again. And, besides, its a Lie. The perfectly adequate and true reason is that I need access to disability related equipment for communication so that I can manage my life independently in my physical and cognitive disabilities. That is sufficient. There is no need to lie that I need it for an education.

Nonetheless, I would like to further my artistic education. But that is a different social services budget.

Employment

I have not been an employee since I took my Town Council employers to the Employment Tribunal in a case for constructive dismissal, disability discrimination and sexual harassment (not all by the same person !).

Example: Newly arrived new Boss: "You are very awkward, aren't you Sally."
"No, I am not awkward, I am disabled; I have Meniere's Syndrome, and that is very awkward for you."

Experiences through Family and Friends

Scene: I have explained to my Mother, on the phone, why I cannot do what she wants me to do.
Mother to Sally: "You are very selfish Sally."
Sally: "No Mother, I am not selfish, but I am ill and I am disabled."
Mother: "Well, what's wrong with you ?"
Sally: "There is nothing wrong with me; as I have explained, I have a disease, Lupus, Systemic Lupus Erythematosus."
Mother: "You can't expect me to remember all that."
Sally: "I will write it down for you, then you will have no excuse to forget."

Later, I send her an information card from the Lupus Association.

Mother: "What did you do to deserve that then, IF it IS as bad as you say it is ?"
(Was that a double or a triple insult in one sentence?)
Sally: "Nothing." Puts phone down.

Weeks later, she has softened a bit:
Mother: "Well, where did you get it from ? You didn't get it from me and there was nothing wrong with your Dad."
Sally: "Well, you are my parents, so it must have been the combination of your genes that has resulted in my genetic disposition to Lupus."
Mother: "Hmm." (in a huff)

(I swear this is verbatim)

General Thoughts on Disablism

It is something to focus energy on, to fight, to blog against, to feel we do have some chance of changing it by challenging it, here.

Impairment Specific Prejudice

"You DO look well."
"But, you look well."
"Aren't you looking well."
"You're looking so well."
"You must be feeling much better."
"You don't look ill."

People with Lupus look well. Fact. So well in fact, that in 2000 the Lupus Association published 'A GP Guide to Lupus' (115 pages) which was launched at Westminster and sent to every GP surgery in the country. This because so many Lupus patients (90% of whom are female) were not being diagnosed early enough to prevent permanent skin, joint, soft tissue or major organ damage. Because they look well, their doctors were not taking their reports of ill health seriously. From the book's introduction: "... such patients are frequently categorised as hypochondriacs."

The result for me: a wheelchair, because for four years my male GP had not taken me or my symptoms seriously, stating: " ... you have a neurotic need to be ill."

Being in a wheelchair brings its own specific prejudice:

I am bowling along in the shopping centre, dressed smartly as I usually am when I go out into what passes for civilisation. I have made the mistake of going out in public during the school and college holiday. Two teenage girls, attractive, well dressed, not Chavs, ever so slightly moved further away from the approaching me-in-a-wheelchair than is necessary. As I get closer they look down on me and, as one, they frown, crinkle their noses, shake their heads slightly and ... I can't get the words right, to describe what is unmistakably their intention to inform me: I am a smell, I am an affront to their youth, to their right to not be exposed to disease, I should not be out in public, and worse; I am female so I have an extra duty not to be seen in public; I have female parts that should not be seen in a cripple, not be associated with disease, it is an insult to attractive females and I have no right to associate in peoples' minds, disease with breasts and a womb. I am an abomination.

No, just Me, in a wheelchair. I was not harmed by their attitude, but I seethe still.

Love and Sex

Yes please. Oh, sorry, general Love - yes I get lots; from my Bump, and special friends, who know I love and appreciate them. And blogging friends, who I hope know that I love them, especially as by their dedication to reading my blog they know me as well as, probably better, than most of my friends. Sex. That would be nice.

None English Blogs

Mohebat once visited my blog leaving a one word comment of praise. At the time I followed the link (no longer functional) to Her/His blog, but I think Mohebat was Iranian, so without a translation facility, all I could relate to was this exquisite picture on the page, which expressed a lot of what today is about. S/he has not visited since.

Parenting

For me it is all about my Bump no longer needing parenting. That is the hardest part yet of being a parent of an independent adult with an impairment; who no longer thinks of herself as disabled and, therefore, nor must I.

Poetry Against Disablism

Written three years ago when brain fatigued and cognitively dysfuncked, not able to get the wheelchair indoors, physically exhausted, depressed.

Lupus loop: zombie shti, cognitive dysfunct.
No laptop, no ramped assent, no wheelchair,
No buggy round the bend to the u-bend,
No lift to the stars in the stair lift.
Sleek quiet soft seat outside in the jeep,
Inside, stumpy feet in sheep-skin standing,
leaning, trying.
No DFG, no TLC. No crying.

Quotes Against Disablism

One from every blog appearing on BADD would be good.

The Language of Disablism

We witness against it.

Oh JOY (or is that just a tad too solipsistic ?)

2007-05-04T11:43:00.000+01:00

Found it ... yes, my original 1st May post for Goldfish's Blogging Against Disablism Day.

Bloggers - if ever you delete something by mistake, or Blogger steps in and does it for you, do not despair. Via my site meter I found that the www had somehow stashed my 1st May BADD post and resurrected it. So I clicked and found it, saved it as a html file, then saved that as a text file.

All I have to do now is print it, then type it out again onto my blog. (I know that some of you will say: no, just paste it, but that has never ever worked for me, my brain, my fingers or my operating system.

I think it is worth doing and will, just as soon as ...

I will leave the original up because that has comments I value and treasure. If this is all getting a little too complicated, just leave me to bumble along on my own, very happily !

2nd attempt at BADD - When the going gets tough ...

2007-05-03T19:43:00.000+01:00

The Tough Go Shopping !

Oh I was inconsolable yesterday morning; trying to add something important to my BADD blog -quotes from others' Blogs Against Disablism, some beauties, and I lost the lot. I am only 50% certain it was my fault.

So I went shopping.

Not a thing that happens often in my 'dependent on benefits' life and like many of you, I use the internet whenever possible. I went back to the same shopping centre that was the scene of the disablist encounter recounted in my original BADD post but lost. With that memory, and aided by a big whopping 120 ml dose of steroid in my butt last week, I was feeling feisty and ready to sort out the world.

Clothes ... occasionally the occasion demands a new outfit, and the next one does, so this year's small clothing budget was about to be busted. Now because of the drugs that keep me alive and the steroids that keep my head above water, I am big so I have to use the big ladies section of the department store, and it is so depressing. Despite the quality of the clothes, they are crammed in anyhow, shoulders dropped off hangers and trailing under my wheels, and the assistant is a very very large lady who is too big to pick them up, and too tired to be nice and helpful, and I cannot be nice to her because she is not nice to me ... she is the one with the physical problem (I can feel her mind waves travelling over to me telling me so) and she resents having to do something to serve me when I politely ask her to pick things up so I don't mangle them in passing. Truly. So I was prepared for her.

She wasn't there, and the section looked as if it had been given a make over ... it looked just as smart, colour coded, accessorised and inviting as all the other fashion sections. Wow, inclusive fashion. With a very very thin (and small) assistant. Keep calm Sally, don't let hackles rise just yet, plenty of time for that.

First she observed me from a distance (I can tell with those eyes in the back of my head) and gradually moved in, towards me, tidying things on rails after I have been there ... grrr... and then came in close with the usual offers suggestions questions remarks, all the while clattering clothes on plastic hangers onto metal rails. (Remember, I can hear a pillow's noise.) STOP. Lady with a sensory disability here. Getting overloaded, may have to leave soon before I FRIGHTEN YOU with a Meniere's attack. Then you will panic because I will look as though I am having a stroke.

So, refreshed by all the BADD blogs I had read, I prepared to explain to her: I have sensory disabilities which means I get overloaded by noise and talk at the same time. And prepared to leave her to stew. She put her hands together ever so slightly, and bowed to me ever so slightly and apologised, quietly, and thanked me for explaining, saying she would leave me now but to please call her if I required assistance. Wow - Wonderful.

You have seen them, the lady lift operators in films of Japanese department stores ? This lady was suitably beautiful but didn't have the little white gloves. It clicked. So I smiled at her, made eye contact, and thanked her and hoped she would know I was sincere. She certainly was.

I did need her assistance, and together we found all sorts of wonderful suitable things on the high rails I hadn't even seen, sat down on wheels as I am. Then she saw there would be a problem with her section's small fitting room; explained she was new to the store that week and took responsibility for finding some one else she could ask if there was a larger fitting room. I followed.

And that is the point at which the two of us, fast friends by this stage, came up against racism, disablism and down right ignorance of the thick sort. An assistant, white English, non-disabled, proceeded to treat us both as ignoramuses. Did not treat us equally in her ignorance, for every time I spoke, she answered my question to the assistant friend. You can fill in the details from your own experience. My assistant-friend knew she was being insulted on the basis of her race and, as I spun round huffily and left the white English ignoramuse standing with her mouth open, realised that I too was insulted.

Then we found the floor manager, male, suited, executive (as in decision-making) power written all over him; walking in the same direction. Yes madam, I can help, and he moved all the clothes rails from the trendy tiny expensive designer labels section, to clear a runway for me from the general walk-way to the extra large fitting room. Excellent.

But I was on a roll, and had to go on to explain; wouldn't it be wonderful if I didn't create this mayhem wherever I went, and that there was always left a clear space through to the larger fitting room that was designated for wheelchairs. Tiny thing designer label assistant looked down her nose and turned away. Executive floor manager said: Certainly Madam. My assistant friend and I then returned to the business in hand and I ended up with twice as many garments as I had expected. She had listened to what I needed, (cool, comfortable, smart) and found the right things for me to try. So I paid (plastic fantastic) and she packed them neatly into the smallest possible bag to go on my foot plate; I complimented her on her attractive department and her supreme helpfulness and we parted the best of friends. Yes, I know she was on commission, but nonetheless, she put her heart and soul into making it an enjoyable successful experience for me.

As I left the floor, I met the Executive again, thanked him, heaped praise on the assistant-friend and her management of her department, and told him about the racist disablist ignoramus. He immediately understood my points, apologised for the poor attitude of the ignoramus, and said he would deal with her immediately. Of that I have no doubt.

And the moral of this tale is ... many English people have a lot to learn from other cultures, particularly the ladies, in shops. And I have learned and gained a lot from other bloggers' BADD posts.

I will leave you with a quote from the wonderful Katie:

"... treating people equally - allowing people to be treated equally - does not necessarily mean treating everyone the same. It means treating them according to their needs."

Postscript ~~~ 1st BADD attempt now FOUND

BAD BADD 2nd May

2007-05-02T09:54:00.000+01:00

I AM INCONSOLABLE.

IN ATTEMPTING TO ADD AN UPDATE, I LOST THE ENTIRE BADD POST.

I DID NOT SAVE IT ELSEWHERE

I CANNOT FIND IT ANYWHERE.

May 2nd Update (see 19 - Quotes below)

Post Posting Editing Postscript:

The post for BADD was written during the neuro toxic drug down days. Today, now that the drug is clearing my system, I see that it is more negative than I feel today. So to celebrate BADD I now also celebrate the Good. Thereafter the BADD continues.

It is a glorious spring day and its May Day. I live in a lovely part of the world, and I can sit outside and enjoy it. I live in my own home and I live in a country where, eventually, the state will provide. I have a low, but guaranteed, income that is just sufficient. My expensive drug regime does not cost me anything. My mortgage was paid off by my medical insurance. The Motability scheme has sourced a government grant to enable me to have a wheelchair accessible vehicle. All this I have time to enjoy on good days, because I do not have to be in paid employment. I know it is not as easy for many people with impairments who live in this disablist world.

BADD CATEGORY: Personal Journey

Just pulling out a few threads from the tangle ... and hanging them on the Goldfish's categories.

AND THERE IT WAS: GONE.

Postscript: Now here it is: FOUND

Swings and Roundabouts

2007-04-26T21:45:00.000+01:00

www.art4all.co.uk

Today was a 'day off', but as I happily no longer have to work 9-5, it was planned as a day off from my particular daily grind. I needed to get out of the house and away from the stack of files that support my complaint about Social Services to the Local Government Ombudsman.

My P.A. was booked and it was "anyone for liquorice icecream?" and off we went ... but it rained so instead of the icecream in the farm's lovely garden, we diverted to Kingston Lacy for a pot of Earl Grey and a big slab of chocolate cake. Well, I told you I was celebrating didn't I !

"Whaaaat ?! No Earl Grey,in a National Trust tea shop. What is the world coming to. Or chocolate cake ... I blame the hordes off the tour bus ... but the cheese and chive scones were scrumptious. Once those were polished off, the rain had cleared leaving the azaleas brightly washed and the avenues of trees and acres and acres of park land a welcome freshly greened space on which to rest my weary eyes.

I had found myself a bit tearful and shaky mid-morning. What's happening here, I mused. I can do it, I have it sussed, I've coped with much worse than this. But, no, giving myself a good talking too didn't work this time... I find that even though in my head I think I am all o.k., the physical symptoms show I am not. I found that I am, actually, quite scared. Not scared of what I have done, in a regretful 'oh my god what have I done' sort of way, by contacting the Local Government Ombudsman, but scared because I know that my Lupus was triggered by the Employment Tribunal scenario. Involving the 'big guns'. Stating my case, proving my case, having my case accepted and ruled on, officially, by officials. Then becoming very ill when it was all over.

I am rambling, I have lost the plot a bit, the plot I started out with under this title. Gain some, loose some, I think. Yes, I remember ... fighting the good fight and all that, so feeling shaky about Social Services but cheered by the National Trust who have come up trumps.

Three years ago I (politely) wrote on one of their 'Suggestions and Comments' cards that their published map of the grounds, picturing routes and features, showed that their wheelchair accessible route around the parkland did not meet up with their dog walkers' route, so how was a wheelchair using dog walker, or a dog with a wheelchair using owner, going to access their facilities ? "Oh, no we hadn't thought of that" said the very helpful lady at Reception - that a wheelchair user might also have a dog. That a dog might also have a wheelchair related job to do. I heard nothing more.

Last year I requested a meeting with their Estates Manager, which was very helpful, and we did Badbury Rings as well, checking accessible gates. At Kingston Lacy they took my suggestion of a route to link the wheelchair paths to the dog walking routes, and laid a plastic heavy duty mesh as a trial. Last summer it was fine, passable in a bumpy sort of way, but the grass soon grew over it, and no one else seemed to be using it. This season, (fanfare ... ta dah ...) the route I suggested is included officially, on their published map of the grounds, as a wheelchair route and as a dog walking route, linking all up very nicely indeed ... and they are cutting, and keeping cut, a wide swathe of grass so it is visible on the ground too. Well done National Trust. I happily pay my annual subscription to the National Trust to have this safe haven where I can trundle along whenever I need some peace, space and calm.

I returned home to find a hand written note pushed through my letter box. I give it in full, so you can get the full effect:

Dorset County Council

26/4

Dear Sally

So sorry to have missed you today.

I was looking forward to catching up on old times with you.

It seems ages since I saw you.

With best wishes

H..... (B....)

This from the big boss lady at Social Services, who had written two weeks ago asking if she could "... pop by, just for a chat ..." My response had been "read the 20 page letter sent yesterday to (your underling)." That was the letter in which I had stated I was frightened, anxious, exhausted, unable to cope with any more stressful meetings.

The only contact I have had with this big boss lady in seven years was when (1) she visited me at home to persuade me not to act to protect disabled people from being manipulated (allegedly) by a paid outreach worker at the charity I was a trustee of, which charity was part funded by social services, so they had a legal responsibility, (2) when I expressed an interest in addressing the lack, in this county, of an advocacy service for physically disabled people of working age (which fell on stony ground), and (3) when she was called in by another 'Community' organisation to stop me going to the police about the male (alleged) 'stalker' from whom they had not (alledgedly) protected his targetted single female wheelchair users (including me), preferring (allegedly) to quietly let the community initiative dissolve (allegedly), wasting (allegedly) thousands of pounds (I saw the accounts) of public funding (allegedly).

Well, would you have felt intimidated by the big boss lady from social services wanting to chat about old times, in these circumstances ? I am, and I was unable to stand when I read it, literally, so I know that this is having a serious physical effect on me.

So I wrote ....

" ... your wish to visit me at home, for a "chat" feels intimidating and inappropriate, when I have had enormous difficulty getting a professional and timely response to my disability needs under Fair Access to Care criteria. Yours sincerely"

.... and drove off (before the beta blockers had taken effect) to post it in time for the 5.30 am collection at the main post office, so it will arrive on her desk in the morning.

So that I can now relax ... and take the neuro toxic drug MTX this weekend, knowing that when brain be-fogged and mood-depressed, I should be safe from anything that is likely to, metaphorically or literally, rise up and attack me.

This is what we, we crips, we bloggers, do, when we need a hug. We blog. Dammit

This too will pass.

EDIT: This is the second installment of the SocS saga. This first installment is here and also labelled SocS under older posts. Yes it has been going on for some time.

Finally ... At Last ... After much Consideration ...

2007-04-24T19:42:00.000+01:00

I have, Finally, At Last, After much Consideration,

made my Complaint

about Dorset Social Services

to the Local Government Ombudsman

in the form of

14 pages of text answering their standard questions

(and let my MP know)

(but not Social Services)

Now, put the kettle on, and most importantly

DON'T PANIC SALLY, DON'T PANIC

its o.k. really it is, to complain, and right and proper.

Good Company

2007-04-19T23:00:00.000+01:00

What does it for you , or does not do IT ? Lady Bracknell describes what does, and does not, for her and Charles Dawson followed, effectively creating a Meme.

Although this cannot strictly be a Meme, because many have already commented their What Does and What Does Not to Lady Bracknell, you may wish more time than a comments box to create your own Dream/Nightmare.

If this sets you thinking of yours, create your own and let us know.

To a single lady in her fifth decade, indulging in this pastime has the potential to create yearnings, but I have a strong constitution, so onwards ...

He (for it must be a He for Me) must be taller than me, except if he is shorter than me and has a rich deep voice.

Whatever his height, he must be capable of eye contact, continuous or unflinching at times, confident, co-conspiratorial, and never have brown irises. I discovered early on in my Soul Mate Career, that if I could not read a man's reactions to me, it was because his dark eyes prevented me from seeing his pupils dilate in passion or contract in peevishness.

Conversely bright blue eyes never appealed, perhaps because they accompanied pale skin and pale hair, which did not appeal to my blood lines. Green would match mine and hazel would be interesting, provided they did not accompany hobgoblin blood and a hairy back.

He would never be bald, except if he had a noble head, and he would never ever have facial hair. I have sensitive delicate skin, and do not wish my cheeks to advertise a night of passion or even an afternoon. Besides, have you not read Roald Dahl's The Twits !

A good head of hair was important to me, until I met a man with thinning grey hair (and a paunch) who bowled me over and straight up the stairs !

Names are important, yet as it is unusual for a babe in arms to choose his own name at his naming ceremony, how can that be? Because his mother chose it of course, and mothers can have dreadful influence on a growing lad. Albert. Cecil. Derek. Eric. Gerald. Kenneth. Norman. Nigel. Percy (forever remembered for the porcelain). Raymond. Stuart. Trevor. Vince. Walter. See what I mean. You can imagine what growing up with one of those would do to a boy's character. Who could resist an Xavier, I certainly did not resist an Alexander. His mother was intelligent and cultured.

The voice always does it for me. Maybe it is a reliable indicator of testosterone, through the vocal chords. The voice can be used to wonderful effect, and a loved familiar one would always turn one's knees to jelly. A hearty laugh and a quiet chuckle would come easily to my ideal. If the voice also sings competently, anything from bass to counter-tenor, that would be heaven.

For active music appreciation is a must. Participation preferable. My first boyfriend was a pianist and the combination of attractive hands (long bony spatula fingers) and emotional intensity was very effective. I have observed a young woman achieve the same effect on her beau. A 'cello or a contra-bassoon would be equally effective, whereas a trumpet or a trombone would always be trumped by a french horn. Cymbals would be silly unless accompanied by timpani.

Hands must be warm, enveloping, communicative and responsive. He would surpass me in his need for cuddles, kisses, fondlings, hand holding, arm hugging. He would be circumspect in public.

Clothes must be suitable to the occasion and if tails are called for they would be worn with panache. I once had a boss who wore a Fedora. It kept the rain off his cigar. Even a fleece would be acceptable if it was appropriate to the job in hand, even though I abhor their take-over of normal human kind, and flee from their ability to suck moisture out of the atmosphere. Anoraks have been discussed before, and Charles Dawson's protestation to Lady Bracknell that it was a reasonable adjustment for his disabilities does not wash with me. A well worn and well waxed jacket as used by country men and women would shrug off the worst of stinky mud, if hung in the boot room and given a good stiff brushing when dry. It would also have the added advantage of not scaring the horses, or the birds bees and hares out of the hedgerows.

He would know what a boot room is and would contrive to have one, however humble his abode.

He would probably have a bit of land. If he was a land owner that bit would be a working farm. Or he would enjoy his garden or have a wheelchair accessible allotment with no straight lines.

He would have acquired huge quantities of books, and consumed many more. He would be knowledgeable about the past and enquiring of the future. His knowledge would not be dry and dusty but accumulated through interested ferreting. He would be interested in sharing the knowledge and not be afraid of his lady knowing more than him, or proving his theory wrong.

He would look forward to talking with, not to, his lady. He would naturally read aloud a poem or a passage from the novel he was reading.

He would have good manners and treat the servants with kindness. He would not have servants, but would value those who provided a service, be it the mechanic or the butcher.

He would be sensuous, and his sensuousness would permeate all his being. He would look at pictures and want me to wear silk. He would be a good cook, and a good shopper for and grower of, good food. He would be more covetous of a proper larder than of a mini fridge to stash his lager in.

He would be self aware, having survived some difficulty or tragedy, and grown deeper and stronger emotionally and psychologically, from it. Anyone who has arrived at the fifth decade single would have had some such experience.

He would not smoke anything, or drink to excess; which excess would be decided by me.

He would be demonstrative and would show his affection and appreciation daily. On high days and other special occasions he would always give his lady something she could wear, be it a flower or a jewel. If he could not afford the excessively expensive perfume or the designer handbag he would seek out the unusual from an auction, never a car boot sale. He would never present her with a kitchen gadget, knowing that things such as milk frothers and food mixers are essential household equipment, not presents.

He would be at ease with the necessary disability related equipment his lady's condition, and perhaps his own, necessitated.

More important than any of the above, he would be capable of overturning all this lady's preferences, if he was the right companion (live in or out) for her.

Except if he wore socks with his sandals.

All is Not sweetness and light

2007-04-15T18:58:00.000+01:00

My blog over recent posts has not reflected the whole of my life; why should it. No-one needs to know all the problems, and I need an outlet for the Sweetness and Light that is around my life. However, I now need t0 redress the balance; not for sympathy (although that is welcome!) but for the record.

I have had two falls in two days. The first wasn't too bad, in its effect on me although I was afraid for the laptop, but it should not have happened. Yesterday's fall was spectacular and frightened me. More than the bad fall last November, a few days before surgery, which caused me to hobble for two weeks. I fall because of my complex physical, cognitive and sensory disabilities. I fall because of physical fatigue and dizzyness. I fall because I do not have the use of an indoor wheelchair.

Today all my joints are jarred and I hurt in places that are not even bruised. I was on the floor for a longish time before I could crawl to a chair. I was in the chair a long time before I could move and sort myself out. The fear I felt was more than the pain. Once the shock had subsidised I felt angry. And anger is such a good thing when it is translated into action.

I have fallen because my request to social services for wheelchair access in the home made in April 2003 (yes, not a typographical error, it was 4 years ago) has not yet been met. This delay, as regular readers may recall, is despite involving my MP, despite the NHS wheelchair service assessing an indoor wheelchair as necessary over two years ago, despite agreeing an assessment of my eligible need with the County Council for loan funding, and the District Council for Disabled Facilities Grant. Despite the Fair Access to Care criteria imposed on local authorities with social care responsibilities by the government. Despite the government guidance to local authorities on Housing Adaptations for Disabled People.

Last November, a short while before the skull surgery, I had an enormous meeting in my home with three people from social services (my OT, my social worker, and a new bod, their boss), one (lovely supportive knowledgeable) man from the district council who decides disabled facilities funding, and two from the organisation that is now contracted to manage the schemes because social services are no longer capable.

Three months prior to that meeting I stated that everything had to be finalised and handed over to the organising organisation (!) before surgery, as I could not guarantee being able to deal with it afterwards. Such has proved the case. Cognitively I have been incapable of dealing with the complex situation. Shortly after the surgery I received a letter from the new bod at Social Services that was so full of such ginormous errors and misunderstandings that I could only weep with frustration. A month later I wrote and told the new bod he was wrong and causing me stress and acute anxiety. He replied he was right. I did not reply. Silence.

Until I fell yesterday. For months I have been afraid of contacting social services, or anyone else. But now the fear of falling has overtaken that fear. Today I have not taken the weekly low dose chemotherapy that controls Lupus, because it also renders me brain-incapable. Instead I have written (and posted) a 20 page letter to the new bod at Social Services explaining all that he should have read from the file of previous assessments and agreements, and copied it to everyone else and asked them to act. I have documented the falls and blamed social services and stated I can no longer deal with the stress and acute anxiety that the process of achieving disabled facilities is causing me. I have stated I cannot keep doing their job for them. I cannot keep on keeping on.

Next week I will consider contacting the Local Government Ombudsman, which I have been too afraid of doing so far. Now I am more afraid of falling. Again.

Normal service of blogging will be resumed as soon as possible.

Sally in the Bluebells

2007-04-13T20:44:00.000+01:00

Me and my P.A. went for a 'walk' this afternoon. The ground around here is so dry (no rain for a month or more) and hard that it was possible to go in the wheelchair along an old drove road (now a footpath) which runs by the side of a wood, further than I have been able to go for over eight years since the Lupus began. It was wonderful, on the side of a ridge, just below the top, able to see for miles along the chalk downland, some fields bright ploughed chalk, others bright green with new crop growth. Deep breaths of fresh spring air.

At the start of the walk, close by where I parked the car, a wire fence that had been there forever, had been removed and a well trodden path led into the wood where recent coppicing had cleared the undergrowth, providing ideal conditions for bluebells, and me . I was able to take the wheelchair actually inside the wood, which has no legal public rights of way, but the newly worn path is obviously used regularly, but by small numbers so not sufficient to bother the estate owners, or the estate workers we heard deeper in the wood.

So I sat in a sea of blue-green bluebells in grass, doted about with white wood anenomies, laced with yellow celandine on the edges. To be surround by blue is a sensory experience beyond mere sight. The consequence of blue as far as the eye can see is an appearance of a haze of blue hovering above the actual flower growth. Blue is imbibed.

The wood is a plantation of various years growth, and has young oaks and spanish chestnut as well as pine grown as a crop for timber, but one edge of it along the drove is ancient woodland. There were clumps of violets and we looked for 'Archangel', which my PA said is evidence of old woodland. I had not heard it called that before; it is a yellow flowered dead (i.e. not stinging) nettle. None to be found there. Growing in the older part of the wood was sloe in frothy white flower; my favourite spindle in young leaf, and lots of beech, older oak, holly, ash and hawthorn and blackthorn. In another area in denser damper woodland there was a mass of wild garlic in full leaf, but not yet in flower. That too is a total sensory experience, to walk or wheel through it, the pungent bruised leaves scenting the air with garlic.

On the return journey we crossed a bridge and saw this minature water mill over the stream. Notice the brick and flint banding and proper Dorset roof - clay tiles, with stone tiles along the bottom edge. The building is no higher than 3 metres, and was originally built to provide water powered electricity for the dairy, but it is not in use as such now.

After the winter rain fall the river water is deep and powerful and water cascades over the top of the small weir and often spills over into the adjoining water meadows, the silt fertilising the land as it was designed to. Not flooding in the negative sense, but water flooding the grazing land to warm it and provide ideal conditions for early spring grass growth for the dairy cows. In the summer this small river often dries completely and the little mill wheel stands still.

This post is really just an excuse to include my favourite Airedale picture again, taken in the very same bluebell wood.

(Sally in the bluebell wood 1994)

More Hares

2007-04-09T20:13:00.000+01:00

Hasenfenster Paderborn

(caption translation edit: Hare Window, Paderborn)

Oh Blogging Mone, what a fantastic find. Thank you so much.

AND MORE AND MORE ... I have been on a short quest, thanks to Blogging Mone alerting me to the fact that the Three Hares symbol is not only found in England. See the Three Hares Project. Which web site also shows the Green Man, another favourite symbol of mine. I have a small one on the dining room wall (and an elf hiding in the chimney alcove above the AGA, but that was made by the builder as a present, bless).

Easter Bunny

2007-04-09T16:41:00.000+01:00

While you are eating all those chocolate eggs, remember it was the Eostre Hare that laid them, not the EasterBunny

As an alternative to the wildlife on television, see some real life action killing over at Spotted Ele's Monday Bunny Blogging

Happy Eostre

2007-04-07T23:14:00.000+01:00

This stylised hare sculpture set in the English countryside, is beating a drum. It is set on a hill, which slightly affects the perspective, so that the cows grazing below give an exaggerated indication of scale.

Original photo - sculptor unknown, location unknown, somewhere in UK

Its only 2,000 years or so that, instead of welcoming Eostre the Goddess of the Dawn, of new birth, of the return of the longer sun days, we are instead asked to consider the crucifixion and resurrection of a male figure, and its all down to the Romans. Prior to these last 2,000 years we, in England at least, would have been celebrating spring and venerating the land and its creatures.

Ceiling Boss circa 12th Century
St Hubert's Church, Corfe Mullen, Dorset

Also, thanks to the Romans, we have brown hares. Did you know that the DNA of the European brown hare is closer to that of the roe deer than to the DNA of rabbits. No contest.

Artist Madeleine Floyd

I saw my first hare when I came to Dorset. Walking my Airedale along the roman road near the local hill fort, which was conquered by the Romans around AD43 , she shot off after a hare. I was not worried, its was a game my Airedale could not win, but she did not know that. The hare was fast, and each time my Airedale seemed to be lagging behind, the hare stopped, sat down and waited for her to catch up, then took off again. My Airedale was soon out of sight, but I was confident in her good sense, to return to me, and her sense of direction, to find me. What seemed ages later, she returned, absolutely knackered, and I could see the hare in my binoculars, sat down facing our direction. Here is my Airedale on a more relaxed spring walk.

Wonderful animals hares. Here is one I photographed, across the border in Wiltshire, which regular readers my remember.

Back to the Romans. The hares were introduced for food and, for drink, the Romans terraced the hills both sides of this little river valley and planted vines on the chalk. It must have been a bit warmer then. A few winters ago during a torrential downpour, after weeks of such downpours when the ground was sodden, the grazing field above my garden showed by the rivers of water running down the slope, the outlines of the agricultural terraces and ditches. The effect, similar to information gained from crop marks in summer, lasted only a few minutes, so I have no record of it. Those terraces probably were old medieval lynchets, rather than evidence of Roman viniculture, but interesting nonetheless.

When I lived the other side of the big river (that this little river feeds into) I inherited a vine along the south east side of the barn conversion that was my home. In the 1920s the barn was alongside a kitchen garden and I found fragments of the original planting of cherry, sloes and a cordon pear tree on the short south west wall. In the few short years I lived there, it was never warm enough to ripen the white grapes. The birds were happy feeding off them.

There was a lovely little vineyard near here when I first moved to Dorset and its champagne method was a medal winner, but the family retired to sail off the Scottish coast and the incomer grubbed it all up; said the soil was barren. He is fertilising it in rotation with the help of a small collection of dray horses that he breeds, schools and enters for the Boujolais Run to France and back. Isn't life wonderfully connected when it is lived on the land.

On another track entirely ...
I am brain befuddled recently. I know why; Lupus flare following the skull surgery and current systemic steroid starting to run out. In my head I hear my self making perfect sense. Only by other's reactions do I know it is not always 100% so. My Bump asked: Are you ok ? Why ? You sound a bit spaced out or distracted. No I am fine. As in, not sufficiently befuddled to have to worry about it.

Blogging Mone has kindly emailed me offering to translate some valuable Swedish site info on CFLs - see my light bulb moment below. BMone - I cannot see through the process so please wait for me to catch up. I can react to posts with comments (I think) but I cannot follow a process because its all a bit foggy. I have written about this aspect of Lupus brain fog before, and explained why, and why also I am not stopping to find the link to put it in here, because I will get lost and not find the way back. Yes, I know I know how to do it but I cannot find the route in my brain. I can create stuff, like writing this (spent ages trying to find out how to spell eggsagerate and boujolais/beaujolais, bowjhulay), but not take a planned process of action. Does that make any sense ? Yonks ago Charles called it malignant fatigue. I renamed it Dawson's Fatigue.

Thankfully it is the holiday, so it doesn't matter. I have been nowhere and done nothing for two days, and plan the same for the next two days. After then I will phone the doctors' surgery and book the next steroid assault on my butt.

This, from cartoonstockdotcom, is for Goldfish

Interview Me Meme

2007-03-24T10:20:00.000Z

This Meme has an honourable roll of previous Interviewers and Interviewees, most recently Charles Dawson and Goldfish. I volunteered and asked Charles to Interview Me.

The Rules of the Meme:
Leave me a comment saying: "Interview Me". I respond by asking you five personal questions so I can get to know you better. If I already know you well, expect the questions may be a little more intimate ! You WILL update your journal/blog with the answers to the questions. You will include this explanation and an offer to interview someone else, in the post. When others comment asking to be interviewed, you will ask them five questions.

These are the five questions from Charles Dawson:

1. Is there a piece of music which has particular associations for you, bad or good?

Inevitably for me its a choral piece, Gustav Holst's Hymn of Jesus. Inevitably it has a religious theme, as most choral works have that basis or inspiration, but these words are from the Gnostic gospels*. Because I sang it in rehearsal week after week, hummed and sang it to myself daily, then performed it in a choir in a magnificent space with orchestra, it lodged itself in my soul. All this at a time when I was struggling with the end of my marriage, which was physically, emotionally and financially exhausting; aware of but unable to do much about my Bump's desolation, or my own. Singing the gnostic Christ's words: I am a couch, rest on me threatened to reduce me to sobs every time. (The Christ figure as the positive animus, you understand.) It has settled into my life as a beautiful inspiring piece, that now I have joy in listening too and a few shivers down my spine at the divine scoring and choice of texts.

2. People of our generation in this country were usually brought up in a religious tradition. Have you shucked all that off or would you still describe yourself as a believer.

Well and truly shucked off. However, my upbringing was non-conformist, then in my mid 20s I joined a choir and discovered Christian beliefs in an ancient and entirely different, more subtle, setting which offset to some extent the loathing I felt for all things religious.

Now, certainly not a believer in the figurehead of God the Father who directs our lives and gives us what we want if only we are good and ask nicely; which figurehead restricts, actively prevents, the maturing of many souls. What I think of as 'God the Bottleneck' constricting evolution; the churches's teachings discouraging consciousness and preventing individuals from taking responsibility for themselves and others.

Nor am I believer in a religious faith or practice but, nonetheless, I consider myself a convert from non-conformism to anglican, for the space, peace, ritual and distanced impersonal prescribed services, often with intelligent sermons, safely removed from the dumbed down teachings and happy clappy evangelism that threatens to invade one's personal and spiritual space, at every turn. Which is where my dysfunctional family landed young teenage me after one of my father's catastrophic breakdowns, which was viewed as a religious conversion.

However, I think a belief system is a good thing, once religion has been sloughed off, and the most effective ones, in keeping us afloat in this life, are those belief systems arrived at individually, a pick and mix if you like. So mine is based on Jung, with a smattering of Celtic Christianity and a good dollop of Quakerism. All richly stirred together and sweetened by music, art, architecture, stained glass and communion wine in a silver goblet; taken those rare times when I visit one of three places where I feel safe and at ease; a school chapel, a tiny 12th century non-parish church, and the Cathedral. Here, comfortable knowing that I will not be descended upon by evangelising nincompoops; able to contemplate the sermon and not be preached at, and at ease with the people, the service, I take Communion. Most definitely not as the body and blood etc. but as a communal companionable act; at the school chapel among people I know and respect or in the cathedral where all are strangers. In both places I am in communion with my fellows while we contemplate what it is all about, what we are and how we are to live honestly and keep on keeping on.

Which is all quite a surprising thing to find myself doing; a surprising outcome given that I believe I have most certainly shucked off all my religious upbringing. I am not part of the life of my or any parish church, so many would not consider me a practising Christian; myself included.

3. What is your worst nightmare ?

Nightmare literal or nightmare metaphorical ?

Literal - the recurring one through childhood, of being completely disorientated and dizzy in a moving heaving sea of linking staircases going up, down and around. That probably came from being born and raised in a prefab/bungalow, so I didn't learn ascending and descending on a daily basis. Also, that nightmare told how disorientated I was as a child in my chaotic dysfunctional family, where nothing was as it seemed, nothing was told as I experienced it and nothing remained where it had been. Also perhaps it may have hinted at the first signs of Meniere's; as a child my brain and balance system only very slightly unable to cope with sloping surfaces.

Metaphorical worst nightmare is being unable to fight for my right to be enabled, and funded, to live independently in my own home to my own standards. To no longer be capable, physically or mentally, of looking after my needs and being conscious of it but unable to do anything about it to protect myself from the mindless thoughtless heartless bureaucracy that already threatens to sink me. I think all crips should form local unions of the like-minded, and provide for a future lived in a commune directed by themselves (I'm thinking battlements and draw bridges), hiring and firing the staff as needed. Which could turn into anyone's worst nightmare !

4. If you could have any living creature as a pet, which would it be ?

My Airedale Sally (after whom I am here named), reincarnated into life, exactly as before, to be my companion animal. With her humour, grace, wit and style intact. With her ability to sense and see off any male who didn't smell right, whether it was the nosey postman or the potential (potentially catastrophic) date, and her total lack of shame at climbing onto the lap of all other human males who came into our lives. She was warm hearted, loving, solid and big, and always listened to me kindly and groaned in the right places. She would keep the damned cats out of the garden so the birds could visit safely. She would be the perfect wheelchair companion.

5. Who do you think has influenced you most in life (personal contact, reading, whatever) ?

'Personal contact' - Alexander, deceased. Too private.

'Reading, whatever' - Carl Gustav Jung, as a theoretical training and as experienced in personal therapy and later in training analysis. I would not have survived without the knowledge and insight his research and writings have enabled in me. Via Jung I have met people who I can be myself with and rely on. Through the study of Jung I am now mostly a 'good-enough' mother. Through the experience of Jungian therapy I am becoming, will continue to become, the person who I am meant to be. Through the Jungian lessons I have learned I hope never to make the same mistakes again. The only problem with Jung is I end up sounding pretentious.

As my answer to this question is 2/3rds male, I add, as a third, the wise old lady who founded the Jungian study group and training organisation in this part of the world, who I was at first in awe of, who then approached me with an invitation, and who now I am blessed to have as a wise old woman friend.

* see Elaine Pagels's The Gnostic Gospels.

~~ Thank you Charles for giving thought to your questions to me ~~

If you wish me to interview you; in depth or lightly (I get to choose), and whether you are new to this arena or a well known fellow blogger, please let me know in the comments box.