Friday, 20 October 2006

Diwali - let there be Light

This is the time of year when the Christmas lights arrived early, when I lived in Leicestershire. Way back then the traders honoured the traditions of All Hallows Eve, and waited until after the school half term holiday, before they brought out the Christian decorations for Christmas.

Surely I am not the only curmudgeon who fumes at the sight of a team of reindeer close on the heels of the summer sales; as I was mumbling only today at the M&S checkout.

Ponder, if you will, that Pagans believe that Christ-Mass is a re-write of bringing a bit of light into the darkest time of the year.

In the city of Leicester, the Festival of Light - Diwali celebrated by a large and vibrant proportion of the population, brought a sense of Christmas a little early to the city streets, with lights and decorations.

Just at the right time too, for as the earth roles towards the winter solstice the cold wet dark days of autumn start earlier that far north. Down here in beautiful Dorset close to the south coast, warmed by the sea, the weather is milder and the days a little lighter, being closer to the Equator.

When I came down to Dorset twenty years ago, I left behind a multi-cultural life and stepped back in time. I love Dorset, I am happy never to live anywhere else (ok, Crete or New Zealand would be good for a while). The Dorset accent and speech idioms, and the rural basis of daily life, are soothing and enfolding. But I miss the mix of cultures that was everyday life in Leicestershire, both in the city and in my neighbourhood.

When the Srishti dance company included my local arts centre the Poole Lighthouse in their tour, it was a must-see.

Fabulous; colour, movement, and especially the music but what was unexpected and wonderful was the effect of the multi-cultural audience, and the colour and resonance their presence brought to the performance.

I have very mixed feelings about relating to India at the moment. All the fault of British Telecom moving their technical back-up to a call centre in India. After much deliberation, and even more prevarication, I have made the move to broadband. It has taken a while, but even this little valley is now connected.

I know that the staff at the call centres are highly educated and skilled, and they are unfailingly polite and charming to customers. They do not comment on the fact I am doing all this in bed, with piles of paper festooned with sticky notes lapping around my pillows, for of course webcam technology has not yet become compulsory. When it does (it will, it will) will crips get dispensation on the grounds of good taste and decency ? I digress.

My tinnitus, brain fatigue and transient cognitive dysfunction just don't let me keep up with the sheer speed of their sentences and often don't let me decipher their accents. I do not complain. I excuse myself, and try and find another way.

My cogdysfunck'd brain takes things very slowly, for I have learned there is no point doing something new when I am tired because the newly learned pattern just does not get laid down in the neural pathways. So when I have problems, I have to write them down for myself before I launch off into asking for assistance. The BT Age and Disability help team (0800 919 591) came to my rescue. I stick with BT purely for that help team, a left over department hanging on by their fingernails from the days of BT's monopoly.

Therefore I was interested to learn from them, that even BT have seen the light, and set up an interface between their customers in the UK and their technical help call centre in India, and not just for crips!

If I have understood the BT A&DT's description correctly, I have to request a call from the UK based interface, who will call me back sometime in the next 48 hours (anytime between 8am and 8pm - I told them - I don't do '8 am's) and take my question, which they will then, in real time, speak to the call centre in India, who will answer the UK interface, in real time, who will then pass the reply back to me; for me to ponder, in real time, then ask my resulting question.

Have they not heard of chinese whispers ?

They didn't call me within the 48 hours. Perhaps its as well they didn't...

Friday, 13 October 2006

Its Friday - its 5 to 5 - and its CRACKERJACK !

Any UK readers born in the 50s will know the feeling ...
no more school until Monday, sat in front of the telly with a plate of toast and a mug of tea.

Daft grown up men doing silly things with soda fountains and kids still in their school uniforms trying to win a Crackerjack pencil by balancing a cabbage on their head ... yes you know what I am talking about.

(EDIT: That link does not want to work. Try googling 'Crackerjack childrens tv' and follow the link to 'whirligig-tv'. If that doesn't work, pretend.)

Its that Friday afternoon feeling, I have done all the week's work* and I still have some relatively pain-free energy left for 'fun' - stuff I want to do, rather than having to save all my energy for 'work'. So I can't resist blogging. Again, courtesy of the facilities of my big bed and six pillows - no Lily, not "...inducing of a double chin...", but essential support - two at my back, one under each arm, one under my knees and one under the laptop.

Comments on my last post Ode to my OT were inspirational, leading me to vent off steam in a long rant about access to a socially inclusive life via wheelchairs, wheelchair accessible vehicles, accessible accommodation and a socially inclusive life to include the right to sit in one's own garden, even have a garden, if that is what one wants, and what one wants to do.

Also, in response to comments, I have been pondering provison in other countries and comparing state funded provision in the UK with USA and Germany, and inviting comments on life in those countries, from other bloggers. Does state provision for accommodation and equipment necessary for disabilities rule whether we have a choice where we live - in the town/city or in the countryside far away from necessary facilities ?

* This week's work has been the mammoth task of completing my Application to Motability for my next leased vehicle and applying via Motability to central government funding for adapatations to make a vehicle wheelchair accessible. The Application envelope weighed a ton (not a tonne), as my application consisted of a hand completed 36 page printed form, my 11 typed pages of additional information, 5 pages of illustrative photocopied photographs, 14 pages of explanation and evidence of disability, specification of wheelchair, proof of income (and bank statements), and proof of expenditure and colour of my nail polish this weekend.

It felt such an important occasion that instead of my home help doing the ironing this morning, when she arrived I dragged her off in my WAV to the market town Post Office to weigh and post the envelope with due ceremony.

I am so glad I did venture out - it is not often I am out and about in public at 10 am - as the twice-monthly farmers' market graced the market place in front of the town hall. As my home help was with me and available to carry stuff for me, I was able to buy: a pot of honey garnered five miles away, beeswax furniture wax from local beehives, autumn bedding plants for the display by the door to my cottage, good proper bread, good proper bacon (from 'Pampered Pigs') and half a dozen Egremont Russet apples.

It was a lovely autumn morning, gentle sun through light cloud, leaves just turning, people sauntering around with time to stop to chat or exchange a smile, the farmers' market very much a social occasion, much like 'marketing' must have been in the old days of the ' Mapp and Lucia' stories by E F Benson.

But without my WAV I would have had to live in this town, with the drug pushers and knife wielders, perhaps next door to the harassers of elderly people (such as my home help's other client), amid the traffic noise and fumes, in this 'Interesting Georgian' country town in Dorset.

Wednesday, 11 October 2006

An Ode to my Occupational Therapist

I explain something to her, very carefully, factually
and she says: yes, I see;
but I think she just has an emotional reaction
and acts on that
and goes to her supervisor
with the situation,
from her emotional perspective,
forgetting, or not presenting, my facts.

And her superior says:
but what about ....
and ....
and ....

And instead of OT replying
to her superior
with the facts I have given her,
she comes back to me
with the questions and the reasons
why not,
from her superior.

And my cogdysfunck has taken me elsewhere
so I have to find my way back
to what I have said before.

And her tone has altered
so that she is saying to me:
No, because ...
and I have to remind her,
if I can,
of my reasonings,
but I cannot due to tiredness,
cogdysfunck, fear, despair.

So I am overwhelmed
and cannot remind her that
I had told her the facts
and I haven't got the strength to say:
why didn't you tell your superior
what I said,
now and in the past,
to support my request.

And I feel doubly let down, because
First: she has changed her attitude to me
from first positive, when I felt relief
that she had taken on board
what I had said; to
Second: negative, questioning why
I think my request
should be considered.

It was reasonable, reasoned,
when first requested.
It felt unreasonable in the light
of her superior's questions.

Days later it comes back to me.
All the reasons, all the legislative back up,
So I write another letter
and do her job for her.

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Sunday, 8 October 2006

Boldly Go

BCC Ceefax reports that the Starship Enterprise has sold at auction for $576,000/£308,000 - cheap at the price I thought, then I read its just a 78"/1.982 metre miniature used in the title sequences of Star Trek: The Next Generation. I suppose they could not find a camera big enough to snap the real Starship Enterprise for the opening titles, so they had to make a model of it, to fit it on the tv screen.

When I left behind my childish hopes of being the Enterprise's communications officer, I switched my aspirations to Spooks, who at least let me have my own desk at the Spy Academy.

Agent Fang has recalled her adventures using a power trike on a country lane and yesterday I witnessed a similar incident while out 'walking' with a group of wheeled and bipedal friends along my favourite bit of countryside, where I usually spot some wildlife. The other Wheelie used a powered attachment to his manual wheelchair, effectively reducing his four wheels to three, and striding ahead he hit the ruts in the path first and did a gentle slow motion lean to the right before landing sideways, cushioned by springy grass thankfully. My six-wheeled Pride Jazzy powerchair is Enterprising enough to let me Boldly Go, but I am not the Wheelchair Junkie, so I tamely only participate in group exercising of my rights of way which, suprisingly, are the same as the rights of walkers and equestrians on countryside rights of way and open access land. The Disabled Ramblers shoot straight to the hyper-space of mountains and moorland.

Yes, I do get out sometimes, but I did too much yesterday, so this page is produced courtesy of the facilities of my big bed and six pillows.

Suspended animation.


Friday, 6 October 2006

That was almost the last straw, said the Camel

No surgery next week. Postponed. That is all you need to know. What follows is for the record.

The Neuro unit admissions secretary rang me at mid day today, trying to trace a blood test result - a fairly crucial one to do with blood clotting. The blood test result got re-routed without leaving sign posts behind. Location A - GP surgery - took the blood sample and sent it to B Pathology lab who sent it to C Path Lab because B did not have the facilities. C Neuro unit asked C Path Lab for the results. Can't, they said, you will have to ask A. C Neuro secretary rang Sally, Sally rang GP at A, A asked B, who said C hasn't sent us the results yet. GP asked C for the results, but C said they hadn't received the sample from A. GP asked Sally to check it out, knowing Sally is very capable and persistant, and didn't have a surgery full of Friday afternoon patients to deal with as the GP had. Sally rang B who said sorry we didn't send it to C we sent it to D Path Lab. Sally rang D, who said they had sent the results to B ten days ago. Sally spoke to B who would not speak to Sally, only Sally's GP. Fine then, ring my GP. B rang A and left a message for GP. GP rang me. GP rang B and D and asked them both to fax results to C Neuro. I rang Neuro.

By which time, Neuro said it was too late. I have no problem with Neuro's decision, I am in their hands and if the anaesthetist is not happy then I am happy to wait until he is.

The blood test result was normal.

So, being a philosophical camel, I now cancel all the arrangements made, re-make all the arrangements cancelled, and wait.

Tuesday, 3 October 2006

Do It Yourself

In recent days there has been an avalanche of forms to fill in and information to gather together onto bits of paper - and all remind me that my handwriting which I used to take great pride (before a fall etc) in, is not what it was; cannot hold a pen for long, so I transfer answers to forms onto documents prepared on laptop, but that causes pain until my

Whinge whinge, that sentence was too long.

Cut to the chase - I cannot blog or email without pain and I need to reserve laptop time to essential form filling. So I have not done much social laptopping. Laptop socialising ? Thanks blogging friends for comments and visits. I am way behind in reading yours and regret posts I have missed.


Motability are brilliant - in eight months time my current vehicle lease ends so huge forms to fill in, but this time their forms allow me to research and find the Wheelchair Adapted Vehicle to suit my disability needs and the requirements of my wheelchair. So I have been doing it myself - and having fun fun fun choosing my next WAV. I am thinking VW Caddy Life (imagine a Golf with sleek van on back) with cd player, tinted glass, auto tailgate lift but manual wheelchair tie down. I can dream, but some of it will become reality. The designs have improved since my last vehicle five years ago, so I am hoping I don't have to rely on a noisy rattling mechanical auto tie down on the vehicle floor. And Brotherwood's well thought out, or rather; well-engineered, converted lowered floor and wonderful tiny shiny smart ramp are a dream to use.

Social Services said some weeks ago "we will find you somewhere to live" when they move me out for the building works for disabled facilities adaptations. That has now translated into sending me forms to apply to the District Council housing list for temporary accommodation and to apply for housing benefit to pay the rent. I have been down that road before on behalf of someone dear to me and it was a nightmare, costly in time, energy, patience and disputed money. So I have written to SocS and said if I was well enough to deal with all that on my own I would be well enough to go out and earn a living and not need their help. I can only protest and hope they take back the responsibility. That I cannot do myself.

In discussing extensions and adaptations for disabled facilities, the powers that be have said they will not provide heating. That is daft I said, you cannot build on rooms and not heat them. Stale mate for eighteen months. Then I researched the Warm Front scheme and was visited by an assessor last week. Cut to the chase he said, after five minutes considering my needs; no gas in the village, expensive inefficient ineffective electric night storage heaters - you can have a grant for oil fired central heating. Combi condensing boiler. A Tech Surveyor will contact you. Just decide where you want the radiators to go. Jaw dropped in amazement. I am so used to having to argue and prove and evidence my needs I was stunned at his quick assessment.

Reality sunk in some hours after he left: a combi boiler means ripping out the hot water system off my little old AGA, which is crazy. And how am I going to protect my dear little AGA from the assessments of Social Services who would be much happier if I had a basic electric oven and hob. Those that have never had an AGA just don't understand the companionship of it, and those that have had AGAs but don't have them now are just plain jealous ! And the WF grant does not provide to remove the exisiting pipes or exisitng NSHs, or make good the bits of wall/skirting boards they inhabited. I cannot DIY that, nor afford to pay someone skilled to do it.

Do it yourself research has resulted together with lots of expensive phone chats with heating engineers. I have yet to sort that one out in order to have sufficient information to deal with the WF tech surveyor when he visits to assess. I am thinking keep the AGA to heat the hot water, just add radiators for heating because, I discovered on the internet, a combi boiler heats water straight off the mains and mains water pressure has to be increased - which is why I cannot flush the loo when I visit my bump (who has a combi boiler) - we did not know this is why - high water pressure = whoosing noise flushing the loo which risks triggering a Meniere's brain shut down episode. Life is complex.

The cheese planning skull surgery is planned for next Tuesday. I am writing lists of lists for me, my bump, my home helps, my PAs, lists of Lupus effects, lists of Meniere's effects, lists of drug effects, all on the laptop to take into hospital with me, so if anyone asks me anything, I don't have to get my cogdysfunck'd brain in gear, I can just scroll and click. Well, that is the theory. Doubtless it will all be out of my hands. Hopefully I will be drugged and not give a damn. And the regional Neurological central at Southampton hospital is so far away I don't expect hugs from friends visiting. All being well I should be home by Thursday.

I thought of putting in a link here to DIY trepanning, but the googled list brought up something quite gory, so I am sparing you that.

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