Friday, February 4, 2011

This was another week.

I fucking hate winter.  Most  dislike it, after a while, apart from the snowy days that look like Narnia. Ice days are shit. MS means pretty much total shutdown until the weather breaks. I've been in contact with very few people in the past week or so, as I decided breaking my iphone was a good move. It wasn't. all my numbers were on it, the modern dilemma, do I write these in a phonebook? Of course I didn't and was therefore screwed.  Modern life dictates that losing communication is the worst thing that can happen. MS dictates that sometimes communication is nigh on impossible. I'm very grateful to my neighbours Fran and Paul who took one look and decided that feeding and watering me with human company was probably a good idea . They were absolutely right. The worst thing MS does is lock you in so you can't face the world outside at all. Its difficult to explain how truly powerful it is, agrophobia based on a fucked nervous system is the best I can come up with. I think people with MS come up with a great coping strategy by the spring that they mean to employ the next year, then the weather breaks and they forget all about it. What I mean is I come up with a strategy.
Even people with MS say I've been lucky. I can still walk, I don't take any MS drugs, apart from Baclofen and having worked out this has been going on for twenty years, I should be grateful. I am. But. Having to stop doing things you love, is shit. I found out 5 or 6 years ago that I really liked acting, and wasn't that bad. Right now I couldn't do it. Over the years I've said to myself I can never perform again, then got better and changed my mind. This time? I dunno.
Today I managed to bodge together a cell phone that appears to work. I don't know quite how I did it, its an amalgam of the card that was in my iphone, an american phone from a different network and a british charger. It works! Which is how my life tends to go.  My neural pathways are constantly frying out and finding new ways through. For  example, for 2 months I couldn't feel the right hand side of my face. It seems to be getting better. Doesn't work for my hands that I haven't felt properly for 15 years or so, but I'm used to that. Its weird, there's something in me that always thinks there's a chance.