15 Jun 2012

Post 346: This is bullshit

This is bullshit, I started writing this on Wednesday and I have basically had this stomach infection for the best part of a week. If you’ve ever been inspired by anything I’ve ever written I wouldn’t bother reading this.

Life is not worth living when you (sometimes twice) have to get up in the middle of the night when you’re so tired you feel physically ill, get into your wheelchair and then navigate to your bathroom and then it feels like you have to risk what pathetic independence you have by risking broken bones (if you fall) to get on the loo. People have decided to end it all over less than this – I have had plenty of bad weeks but this is right up there. People are inspired when they see people who aren’t depressed even though they have a good reason to be depressed, actually people are inspired by anyone who isn’t depressed in this day and age.

Cathy (my counsellor) recently sent me an article featuring an interview with another stroke survivor detailing how he’s taught himself to play saxophone and how he hopes that busking at first will lead him to earn a living. Good on him is my first thought, my second is here is another stroke survivor with enough functionality to do that. I have met plenty of stroke survivors in the last 7 years. Being the only one who’s not recovering is starting to piss me off. He did say one thing that could have word for word been written by me: [talking about most of his mates]

They have seen my depression not as something that is my fault but as an inevitable consequence of going from being an energetic, dynamic and independent individual to being someone who is largely dependent on other people for pretty much everything

The rest of the article goes on to say how important it is when your very best friends move heaven and earth to stick with you but how hurtful it is when other so-called friends take this as an opportunity to ditch you. I’m never going to mention names, but I have my list filed in my head clear as day. It is perhaps the curse of my old life that people who were pretty good friends are actually fair-weather friends or c*nts depending on the prevailing mood. I think the other article calls them ‘deep as a puddle’ – Rude, but diplomatic – Diplomacy has never been my strong suit.

I have ranted about my dissatisfaction at the way the medical world treats strokes before (yawn). I’m not an unrealistic fool, I don’t expect there to be a pill or procedure that’ll sort me out just like that but I expect there to be some sort of medication that will at least induce a chemical environment in my brain which will mean I don’t feel this dreadful all the time, and I mean medication that actually works, not antidepressants, that I’m convinced have the drug companies laughing all the way to the bank.

By way of example, despite being the most exhausted man in the world, I, believe it or not, have trouble sleeping for two reasons (I think). Firstly, that I have very little freedom of movement and sleep relies on being able to get into a position where you are comfy and relaxed. Finding this position when your body isn’t fully co-operative seems to be bloody hard. (for example, people can fall asleep in the most uncomfortable looking places

because their body finds them a position it can relax in) –I find it bloody difficult, even on a bed, my wheelchair feels like a prison, so sleeping in it is sadly impossible (even reclined – it feels more like a coffin them), secondly and this feels conceptually more tricky – that I feel too tired to fall asleep. Trying to switch off seems to require concentration – when you’re too tired to concentrate, you can’t switch off, ergo, you can’t sleep, probably why I was such a lousy meditator. Anyway the point I wanted to make was that my GP refuses to prescribe me Zopiclone (a sleeping tablet that has worked for me in the past) in case I ‘become dependent on them’. I’m ill for fuck sakes, anything to make life easier – I don’t give a fuck, but it’s ok to hand out useless antideppresants like Smarties at a cost of several hundred millions if not billions of pounds to the taxpayer. I don’t mean to go on about it, but I will.
So, not the greatest of weeks, so boy was I pleased to see my mate Carlie yesterday. Regular readers (there can’t be too many?!) will remember her as the girl who I made friends with back at Putney hospital in about 2002-2003. Her story practically reduces me to tears. In her early 20s she had a haemorrhage in one of her spinal blood vessels that has left her quadriplegic (ie she can only move her head and feel her face) yet she somehow remains more calm and smily than any one of us could in her situation. If anyone ever wanted injustice defined you need look no further. The only saving grace is that the bleed didn’t affect her brain so she can feel physically normal and speak normally at least. In my last months in Putney Hospital I took everyone who came to see me to meet Carlie and they all commented on how lovely she was and how impressed they were with her calmness, attitude and lovely smile. I am rather ashamed to say that the last time I had seen her was for my housewarming back in June 2008 (I wonder does anyone read these links – Since then she has left Putney and been around the houses a bit, but for the last couple of years has been in a care home near Croydon which she is at least comfortable at. It appears to be a pretty nice place

and all the staff I met spoke highly of her. In short she’s being looked after properly which is a big relief. She’s also got her own power chair with a chin switch to drive it and special buttons on each side of her head to turn it on and off and control the speed. My wheelchair is probably my most important possession, each slender bit of independence means so much to me, I expect it’s even more important for her. Big thanks to Gary for driving me and for suggesting we do it more often. It’s the sort of soul food we all need more of.
Absolutely last of all, it looks like the British weather looks set to ruin something else that could be magical, for tomorrow (Saturday evening) I’m taking a group (Gary, Gwen and Bianca to the Hampton Court Festival to see the Royal Philharmonic Orchestra. It could be amazing

or it could be a struggle. Bets?

I’ve gone on too long again so my anti-football rant

is optional. How much is Euro 2012 winding me up?: answer: LOADS, actually, probably a medically unhealthy amount. It’s the sheer number of meaningless quotes from morons

who seem to barely be able to string a sentence together. My least favourite by a long way is Ian Wright – predicting games on this mystical quality of how ‘up for it’teams are. IDIOT. Also, this idea that ‘if we all get behind the boys and fink positive then we’ll win. Wright has also been overcome by a nasty case of cockneyitis(tm), a disease where you feel the need to connect more with the common man, other notable sufferers have been Olly Murrs, James Cordon, Jeff Bezier, Russell Brand, Lily Allen, Dizzee Rascall, Christian O’Connell

and 100s of others. Anyway, the football’ll be another national disappointment – oddly fitting with the London Olympics round the corner. Being prepared for disappointment is almost the motto I’ve had to live by since my stroke and as I’ve said before maybe the end of the world might be the kindest outcome for us all. I do go on, sorry.



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