Friday, 18 November 2016

And if you close your eyes, does it almost feel like you've been here before? How am I gonna be an optimist about this?

I think of myself as being an optimistic person; I've had to be over the last couple of years. But I think that optimism is fading. I must warn you this post is far from happy; there are no jokes or even sarcastic remarks. I'd only recommend reading if you are so happy that nothing could bring you down or if you're so sad that nothing could take you down further. It is not though a suicide note; I certainly don't plan to kill myself.

I saw my consultant at Sunderland hospital on Wednesday. She basically said that she doesn't think the DBS will help my tremors much. I knew the results weren't as good for MS patients as for Parkinson's sufferers but she said because I have ataxia as well as the tremors the results are even poorer. This was a pretty massive blow; I'd placed all my hopes on this treatment. She did say though that it is worth trying and as far as I'm concerned there is no decision to be made; I have to try it.

And then on Thursday the nurse from the RVI hospital in Newcastle phoned. My surgery has been delayed until March. Apparently the equipment needs a software update and they've decided to do it towards the back end of December. My surgery would have been next. 

Two days ago I was thinking that my tremors could have been significantly improved by the new year. I thought I would have been able to get a job, move out of my parents' home, start looking for a girlfriend. Now the prospect is of brain surgery in three months and it is likely that will help me very little. I'm fucking devastated.

My life is fucked. I can't write, I can't button up a shirt, I can't use a knife and fork, I can't use a keyboard, I can't cook, I can't even eat a fucking banana without it looking like I'm giving it the world's worst blowjob. And I could handle all of that if I could just go for a proper walk. But I can't do that either.

I want to give up. I get such little enjoyment. I see my friends progressing in life; partners, houses, careers, holidays. I'm genuinely happy for them but I'm incredibly jealous also. And I see the news and all of the evil in the world; I think, "Why me?" There are so many cruel people and life is so unjust. It's Children in Need tonight, I won't be watching. I've donated, as I have to Save the Children and as I will to UNICEF and other charities around Christmas time but I cannot watch it; I am so fortunate in comparison to them and I will only hate myself more for being so desolate about my situation.

At the end of last year I said my condition needed to be significantly better come the end of 2016. It isn't. I've had a bone marrow transplant, the most effective treatment for MS, and I've seen little improvement. The former head of British cycling, Dave Brailsford, talks about marginal gains. These are the things that can make the difference between second and first place to an elite athlete. The improvements I have seen have been marginal gains but I am far from an elite athlete; I am a disabled young man and the gains aren't enough. I cannot help but think about what I once was and of what I could have become. I am the world away from either.

I think perhaps I am generally optimistic (this blog post aside obviously) because optimism is far easier to stomach than realism. Were I a realist I'd probably conclude my life is all but over.

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