Thursday 26 April 2007

Swings and Roundabouts




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.

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Tuesday 24 April 2007

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

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.

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Thursday 19 April 2007

Good Company

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.

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Sunday 15 April 2007

All is Not sweetness and light

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.

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Friday 13 April 2007

Sally in the Bluebells


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)

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Monday 9 April 2007

More Hares


(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).

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Easter Bunny

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

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Saturday 7 April 2007

Happy Eostre

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

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