12 Dec 2010

Post 259: Do my goals fit my therapy?

This is such a hard post for me to write. I like to think of myself as the kind of guy that would help anyone but it's difficult to say this when you're the one who needs help. I think I've accepted that I'm never going to be able to live independently again, to be able to do that your energy levels need to be normal, you need to be able to walk and use both hands. Sadly, it has now almost been five years and perhaps I didn't fully apply myself to occupational therapy because my fatigue and other disabilities always meant that cooking or making a cup of tea was miles beyond my abilities and it's difficult to listen to people you have little respect for and the kind people I had around would always help. This is now a big problem because people seem to have exhausted that pot of kindness and I am being told that carrying on like this is 'unacceptable' and will 'end up with me in a care home'. I have already refocused and agreed to a physical therapy regime that I find torturous which is working towards a massive long-term goal of walking independently that I never seem to get any closer to. Despite my times improving they are starting to plateau, where do I go from here? Added to this I can't expect anyone to just make me a cup of tea now, because it's better I struggle to make it, than an able bodied person taking a few seconds to make it. I think this is where my clinically logical brain lets me down. It makes no sense to me, but it is everything that I put logic aside in this case and be prepared to help or show willing. This is sadly easier said than done with chronic fatigue and being unable to walk or use both arms. Once again I'm being too logical. Maybe I'm not asking nicely enough or being grateful enough, I don't know. I think I am being incredibly polite, being in hospital for two years taught me to mind my Ps and Qs but my acknowledgement that I am no longer capable of being 100% independent is apparently giving up. NO IT ISN'T. It's being realistic! Giving up would be not getting out of bed, not trying to meet new people or staying in touch with my existing friends or organising to go to all these gigs, several of which I have been to this week. By the time the last week has gone I would have been to the Hammersmith Apollo 4 times. On Monday I went to see Michael Macintyres Christmas charity show with my favourite friend Sacha, favourite because she makes me laugh and tells it to me straight. Her counsel is priceless and because she has only known me since my stroke she gets on with me for who I am now. It is a problem of my own invention that I assume my existing friends find me a disappointing version of my own self. So back to Monday, these things really are my lifeforce! Although I had seen most of the comedians on the bill live before, being there does make a difference. Mcintyre is brilliant as host, doing stand up but as this picture shows never standing still. He just is a funny little man with lots of energy with a bottomless mine of embarrassing situations and ridiculous observations, The evening was in aid of Shelter. During this freezing weather is when the homeless need people most. I have my own problems but they are insignificant next to people with nothing. On Wednesday I went to another charity gig at the Apollo. This time with musical aficionado Oli Cassidy, another person who's counsel and company are invaluable, to see the Ting Tings and the undisputed queens of Synth Disco Pop, The Pet Shop Boys, I have seen them live once before at the Dome back in June 2009 (post 135) and they were brilliant. Despite not being an avid follower of them, I have always loved their tuneful energetic, melodic songs, it is the approachability and tunefullness of their songs that have always been central to their appeal and luckily there has never been any public analysis of their lyrics which would doubtless muddy these waters. Anyway, that's another debate, more to the point here was another great gig that I found a way of going to. On Thursday I managed to go back to the Apollo to see 'the best live band ever' James. I last saw these guys at the Albert Hall in April (post 201), and on the strength of their performance I'd booked tickets for Jose and I for the Hammersmith gig. It was quite strange going to a music gig where since the night before (when I'd been at the Pet Shop Boys) they'd put the seats back in. It was probably as strange as going to a cinema and finding no seats but it worked surprisingly well. The Pigeon Detectives (the support act) were utter sh*te and James were brilliant but what made the evening for me was bumping into Frank and his wife Jo, this was a guy I got chatting to a few months earlier at a Dara O'Briian gig at the Apollo and we'd swapped war stories about what it had meant to be disabled. Frank is walking independently again after a brain Tumour. He doesn't take any patronising so I'm always careful to be 100% genuine when I complement the guy on how well he's doing, the first time I met him was the first time he'd opted to leave his wheelchair at home. This time he deliberately stood for the whole thing (and even danced a bit) bloody brilliant! Tonight (Friday) I'm going back to the Apollo with Felicity (being too shy to actually look at the camera here) (to see comedian Mark Watson) – I've seen him a couple of times before and despite him only pretending to be Welsh I leek him “boom boom” (sorry), he is so clever, saying what appears to be on his mind -he is also very likeable, normal and down to earth spending a lot of his act psychoanalysing himself to hilarious effect pointing out seemingly obvious things but making them funny with the odd ironic touch. He isn't particularly sweary but doesn't shy away from it. See him if you can, very entertaining!
This post ought to be taken in some context, I missed three gigs the week before last because of the snow and Suede at the Dome on Tuesday after my lift never showed, it turned out the person in question was ill but because I couldn't contact them and they never contacted me, I didn't know whether to be concerned or angry. This is what comes of having to be reliant on other people -this'll never change. Thankfully they're ok.
Much more worrying is the results of my latest MRI scan which apparently showed that the AVM that almost killed me (the blood vessel weakness in my brain that caused my stroke) is still there and despite two surgical procedures to obliterate it, it could still haemorrhage again. The ticking timebomb in my head is still there and I'm scared. To further add to my somniloquence I've also been angry at various bits of music I keep hearing either on the TV or Radio. First is Ellie Gouldings 'your song' I like her voice and she is pretty but me thinking 'how wonderful life is now you're in the world' isn't happening, I happen to agree that my life will be turned round by meeting the right girl but it hasn't happened yet despite me having given it all, the 2nd song that is doing my head in is 'I'm in love' by Alex Gaudino I I don't begrudge anyone love and happiness, except f*cking popstars who almost seem to gloat about it, b*stards! My life seems to have come down to this – my dating advert, which is probably all wrong.

I might as well say this straight up - I'm currently disabled and am looking for a carer I can fall in love with. In return for living in a nice house in the south london suburbs and sharing a stable income -this is not how I hoped life would pan out, but if you don't ask, you don't get - so this is a unique almost business opportunity, i.e you'll be set but you can of course have freedom to work. I have to be a bit mercenary about this. It's better to be honest -i.e. you can tell a lot from a photo, so anyone choosing to hide their photo must be hiding something, if you think I'm wrong, I'm happy to argue the toss over email! I'm basically an Intelligent, articulate joker/cheeky b*stard who survived an almost fatal stroke in 2005, looking for a female best friend to spend the rest of time loving and laughing. Convalescence is dull on my own. I've got a nice house and a reasonable income, I just need someone special to share it with, someone who doesn't think they're selling themselves short by going out with a disabled guy.(this appears to be a common theme)
If you drive it'll help! Same, if you live near-ish. I'm not a nonce but the wall of silence I get is enough to persuade me to virtually forget the online dating game because a stroke survivor like me won't be given a chance. I refuse to believe that nothing I've ever done in my life counts for anything. It's so difficult for someone who used to be so independent to say, I can't cope on my own anymore, I need someone who will love and look after me, not 24/7, just someone who'll live here and share my life - who'll accept me for who I am, someone to share love and laughs with, who can drive me to gigs and shows (which is now my life), who likes cats and wants to be looked after. To lighten things, a bad joke - what's yellow and dangerous? A banana with a machine gun (not shark-infested custard)
I will email back anyone who sounds like they have taken the time to read this. You will have to be able to drive.
It's quite hard to imagine life being wonderful right now.


Simon said...
This comment has been removed by the author.
Simon said...

"this is a unique almost business opportunity"

You old romantic :p

Dom P said...

At least it's honest - I admit - it needs work.

Simon said...

You need to get some female friends to help you write it. Tannith gave some good advice on FB.

leehuck said...

Occupational therapy is a very quick growing field, and this is due to a variety of reasons. This has led more prospective students to become interested in employment opportunities in the field, and right at the top of that list is the profession of an occupational therapy. View the site for more info.

4C1R said...

Instead of looking for a carer you can fall in love with, what would you think about a disabled gal who can come share your home and share a professional carer?

Perhaps you could start going to the rehab hospitals at visiting hours and seeing if you connect with anyone.



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