29 Mar 2009

Post 117: Slow progress, hard times ahead but one or two encouraging signs

Another post so soon? I'm afraid so, like I said at the start of the last post, I feel trapped in the tedium of constant struggle. To try and break this tedium I have decided with Harrys Help(my counselor who I go and chat too every couple of weeks) I have decided to do a creative writing course because one of my goals is to write a book or get some sort of working from home journalism job by the end of next year. People have told me that this blog shows I can write but I need some help to go beyond this. At the moment this is all very autobiographical but I lack the creative impetus needed to write a book. My physical recovery will always remain the priority. This is why finding Ian has been so important. Credit for finding him must go to Natasha who I have probably been too hard on. Fine, she might of emotionally destroyed me but she has done nothing wrong, I have no right to have a go at her, as much as the situation causes me so much pain, I wish her every happiness with her new man, and hope their forthcoming marriage goes well, I hope this draws a line under things and allows us all to get on with our lives, sure I am upset, it seems that my stroke has exposed an underlying emotional frailty I never knew I had. This weakness is often as bad as my earth shattering fatigue. I'm still waiting for the bloody results from that sleep centre! Yet more frustration I could do without. Everything about this whole damn stroke seems to be about waiting, I used to be apathetic about waiting because I reasoned that getting annoyed about waiting just makes things worse and we'll get there in the end. The trouble is with this there's no end in sight because medical science can't or won't tell you what the end point might look like or when the end point will be. Meeting other stroke survivors has helped but as the 'experts' have been quick to point out is that every stroke is different so meeting any stroke survivor has to be taken with a hill of salt because their ability/recovery is precisely to do with the nature of their brain injury. In other words the 'experts' know nothing, an opinion I formed quite early on and hasn't really endeared me to some of the 'experts I've encountered along the way. No-one likes to be told they know nothing about the thing they're supposed to be an expert at,especially by someone like me, who makes no secret of knowing nothing and having a brain injury doesn't exactly help my gravitas! But What I have never understood is how therapists always focus on what they think you'll never be able to do again instead of what they think you'll be able to do. Imagine how devastated I was when the Transitional Living Unit (TLU) physiotherapist at Putney Hospital told me I'd never walk unaided or independently ever again. Being told that in late 2007 made me go into a depression and a defeatest attitude from which I have yet to emerge, silly cow, shame on her for saying that based on knowing nothing. What's worse is her 'expert opinion' went into my discharge report and has shaped the way NHS physios have dealt with me ever since. If it wasn't because of my slender resources and my friends at the Dom Pardey Trust raising money for me I wouldn't have got any walking practice. As far as the NHS are concerned as long as you can move around your home (in a wheelchair in my case ) and they've worked out how you are to transfer on and off the loo then their job is done. It doesn't matter how many times I say my goal is to walk independently again it says in black and white in my discharge report that I'm never going to walk again so it's not worth their time,energy or risking injury themselves to try and do something that some faceless moron has said isn't worth doing. This is a disgrace- it is just wrong, they should have realised what the negative impact could have been. It has been through mine and my parents sheer bloody mindedness that I've managed to get a handful of walking practice sessions with the NHS physios and what has incensed me further is the way they continue to bleat about the risk they're now having to take. I'm pretty tall and heavy but there are taller and heavier people than me. How on earth do these physios deal with them? Maybe they just give up on them without even meeting them. I don't even know why I bang on about this? It winds me up so much, it can't be good for my elevated blood pressure that caused this f*cking insult to my life in the first place. I need to concentrate my limited energy in myself and the people who are going to make a difference to my life over the coming months/years, people like my physio Ian who you'll get a view of once I work out how to post the latest video of me walking. I see Ian 4 times a week, 3 of those for walking practice in the village hall. Since Averil's death he has often phoned me up to check that I'm ok, he's even cooked me dinner once which saved my bacon when there was noone else around. More than a Therapist that puts me through torture 4 times a week. He is now a friend who has not once shown the slightest hesitation in the help he gives me despite me being considerably taller and heavier than he is (which the video shows – I look like some sort of freakish giant compared to him). It was his idea for me to practice walking just with resting my right arm on his shoulder. The NHS physio (a very little lady)could scarcely believe this so she was confident enough to let me walk with just her and a walking stick, something that she herself had said I'd never be able to do a few weeks ago! It's not just Ian who has been amazing. Since Natasha ceased to be my girlfriend over a year ago when I was still in hospital I feared that I'd never find another beautiful, caring girlfriend, quite the opposite, I met the incredible Asli (post 109) in January who is too lovely for words who I'd spend more time with if I could but she doesn't exactly live nearby. There's also the lovely and kind Allys (pronounced Elise) who Ian and I bumped into in the village hall when she was setting up the hall for her sons birthday. As she's local to me she pops in to make me the occasional cup of tea or bring me a meal, she also helps me do some left arm exercises that I just wouldn't bother with without her help. She'll kill me for using the picture off her justgiving page because she hates it but it'll have to do. She was already running the marathon (nutter! Sorry brave lady) but after meeting me she chose a charity connected with stroke. If you could find it in your hearts to visit her justgiving page, both of us would be grateful! There's also Sacha who lives in Cobham. We met through facebook, when she noticed I live down the road from her. She comes round and watches TV with me once a week. We're immersed in 'heroes' at the moment, which is brilliant. Last but not least is the lovely Vicki, a friend of a friend who comes to talk to me once a week. As a psychology graduate, apparently talking to me is good experience. She found Harry (the stroke survivor counsellor) for me and she's easy to talk to, she has been a revelation. Basically my point is I'm in as good position as someone in my terrible situation could be in, My friends from my old life remain supportive, My new friends are great, I have every confidence in the team of people I've cobbled together and I've far from given up! I suppose what I've got to look forward to over the next few weeks are seeing some, of my favourite comedians Mark Watson, Daniel Kitson, Andy Parsons and Simon the Hat (OK, so he's just a mate over from Australia!) but he's definitely the funniest!


Simon said...

How are you getting on looking into a creative writing course? Do you need a hand? Speak to you about it when i see you tomorrow. :)

Dom P said...

Thanks for your help this eve mate. I'll keep you up to date on the creative writing course.Many thanks for sorting out that video file, it's those six years of marking exams!

Simon said...

You are welcome mate :) I hope the person you see (is it today?) is cool and you like each other.

Dom P said...

So do I mate, she sounds a lot like Av so fingers crossed.

Simon said...

You should post a link on facebook to your video walking mate.



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