17 Dec 2011

Post 322: I have a dream: Hope it doesn't snow!

I worry that people reading this might think that life for me is a never-ending stream of friends, gigs, training sessions and no real work. Well, let me re-assure you I've never had to work so hard in my whole life, and it's not work for any financial reward. Everyday is a fight to actually feel like I'm doing something with my f*cking life. I refuse to be like one of the cast of Shameless
or like Charlie Buckets Grandparents in Willy Wonka
and sit around watching daytime TV or lying in bed. I tried to get myself better until it became clear I wasn't getting any better. Instead I've been throwing the resources at my disposal (which I acknowledge are more than most) into maintaining what pathetic physical independence I have (which without maintenance would waste away in a few short weeks). No-one tells me I'm doing the wrong thing, although plenty of people seem to find the time to imply that I don't deserve what I have i.e to be alive which infuriates me. I'm probably over-reacting because that's what exhausted people do. I also hate sounding all 'woe is me' whiney because that's not me, Speaking of which, my friend Simon said to me on Wednesday 'I can hear your old voice through your blog' THIS IS THE EXACT REASON I WRITE IT – As much as I can speak now – it is not the voice anyone who actually knows me recognises. Even though speech therapists told me over five years ago that 'your voice will come back just from talking' -well, I have done more talking than most, most of it 100 times harder than talking ought to be, and has my voice returned to how it was? Has it f*ck, on a similar principle, too many occupational and physio-therapists told me that my left arm/hand would recover feeling/movement if I used it – this has been an area where I've been a bit stubborn – I have actively avoided using my left hand because it doesn't work properly and it doesn't have any feeling. Paradoxically, it does move with huge amounts of tiring concentration as long as I can see it, so it feels like I'm putting in loads of effort and getting nothing out of it, and why? Based on the same sort of 'expertise' as the speech therapists who told me my voice would come back. As far as I'm concerned I seem to have saved myself a lot of exhaustion and anguish by deciding my arm is 'not fit for purpose', when I've been forced to use it and some have brainlessly said 'you have no use in it, because you haven't used it' - er can you prove that?, it is hideously slow and I have no idea where it is most of the time unless it's in direct sight, I often think I'd be better off amputating it. So what has prompted this angry discourse? Because I'm not sure people understand how broken I am. I'm exhausted but far from ending it all, I'm always on the lookout for things that might help and on one of my many web trawls I turned up an electrical stimulation machine which is designed to help people with paralysed limbs exercise their f*cked limb. As usual I had my sceptics hat on. I think I just did the calculation in my head that I'm not going to live with a useless left arm for the rest of my life, I have to try something, so I got in touch with the company that sells it to check they're not snake oil salesman – I then emailed a neurophysio to see what he thought and unsurprisingly he cited there being little evidence to support getting it, that's because in this game there is little evidence to support anything, but the overriding thing that has permeated my psyche is there's very little evidence for improvement this long after a stroke period, any opportunity is in the months after a stroke blah blah etc. I am now almost six years post, so everything I do is a guess, and to make matters worse, this machine, this thing
is an eye-watering £2700. I think there are a few hire plans, where hiring it for a year is approx £1500, so me being me, having evidence is of course nice and rather than writing it off, I need to have some sort of plan so naturally I got them to come and demonstrate it and I was a bit blown away by the test -after putting a few electrodes on my arm and turning on the machine, my left wrist cocked involuntarily. I also need to be sure that this won't be another expensive bit of equipment just sitting in the corner gathering dust. But I have two physical therapists who between them I see 5 times a week so they could hook me up to it, this could help, BUT, and there's always a but, the trust is too low on funds to commit to that sort of expenditure, I would try and contribute but given how rubbish I am at balancing my books anyway I can hardly be relied on. Anyway, food for thought. It's hard to end a blog post not on a cliché. Ending on a cliché or pointing one out is practically one. A guilt-trip however..... It's not all bad though, my neighbours (Ian and Tracey) offered to come round with a delicious Thai takeaway and drink mulled wine last night and the marvelous Mel came and joined us – it was a lovely evening – the food was great, the mulled wine was delicious and possibly quite strong and the company stellar. If I were to plan something these days, it wouldn't be much different from that, even if the mulled wine made my slurred speech even slurrier. It's so much better than being surrounded by strangers in some sh*tty overpriced London bar!
The other thing I managed to do this week was go to the Dome with Simon and Mel
to see probably my favourite band of the last decade, Kasabian. Before it Simon had even written on facebook how much he was looking forward to it, prompting me to respond: I've seen Kasabian live twice and they are pretty hard to better, now in my favourite seats,at my favourite venue - Should be awesome To be fair, I think awesome is the correct description but I had one or two thoughts: I've never really been a massive fan of the whole 'Laddy Indie Rock' thing.i.e I once went to an Oasis concert and hated the whole testosterone and alcohol fuelled aggressive atmosphere of the place, like I imagine a football match to be, a part of British Culture we should all be ashamed of, even if alcohol has been removed from that particular equation – admittedly, I dislike Oasis on the principle that I can't stand the Gallaghers, I think Noel might have some talent but Liam is the type of animal that makes me wish Australia was still a penal colony. The last time I saw Kasabian was in August 2010 and reading that makes me think a few things, that deep down if you're a genuine enthusiast (and not a wheelchair using one) the Brixton Academy is just unbeatable for sound and atmosphere but for spectacle and bone crunching loudness and sound clarity the Dome wins every time, seeing as I am a wheelchair user and a fan of spectacle and loudness it's not rocket surgery I love the Dome but deep down we all know I'll go to any old sh*t if it means I get to treat and see my friends and get out of the house... My 2nd observation is that Serge
is the real talent behind Kasabian and the longer Tom
stays on the Greggs diet rather than on 'Gillian McKeiths Skoje Berry and no cocaine'[NMTB] diet, the more they'll realise that Tom is not Mick Jagger and never will be.


oc1dean said...

I got an eStim machine from Allegro Medical, unit 77715 only cost $79 US. not sure if you can get it shipped there. I haven't given up yet, only 5.5 years and since I plan on living another 35 years I'll keep trying until I die.

Dom P said...

this isn't giving up - it is facing facts - the reason this machine costs so much is the biofeedback -ie it can interpret the electrical signal that is your brain saying 'lift your hand' and then mimic that giving more feedback to the brain, a normal tens machine just works the muscles.



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