20 February 2007

Well, my diagnosis on 15th was a bit of a shock. I’d got this whole list of possibles, but MS wasn’t on there. Ok, it was a short list: brain tumour, arthritis in my neck, and that was about it. Myasthenia gravis had already been eliminated, so the short list was very short.

But I hadn’t expected anything degenerative or incurable. I’d been sort of keen on the idea of a brain tumour. After all, at least you get to play the odds. X% you get cured, Y% you end up a vegetable, Z% you cark it. But it’s odds, and you can skew the odds by being fit and healthy etc etc. If you’re going to die, at least you know it. With MS, the bastard doesn’t even have the courtesy to give you that. Instead you get dealt the hand of an incurable, degenerative condition, that might every so often give you a bit of a break only to come back with a vengeance. I know that’s a grim way of viewing it, but from what I’ve read, that’s kind of the score.

I have three friends, three very good friends, who are all being very kind, and very supportive of me.

And it’s handy that they are in different time zones, because it means if I need it, I have a friend to talk to 24 hours a day, without (despite their kind offers that they don’t mind) calling any of them in the middle of the night. One in the UK, one in the US, one in Australia. So, friendship is global. I think that’s one kind of globalisation that nobody can find offensive.

And I’ve discovered I’m still as self-reliant as ever I was. I went through the diagnosis all alone. It was hard; don’t get me wrong, it was desperate at times. But I got through it. There wasn’t really anyone who knew how I was feeling, as I wasn’t talking to anyone. For some reason, I didn’t want people to know until I knew – you know the way that once people know half of the problem, they keep bugging until the answer is there. It’s a bit like waiting for exam results – you want to know what they are and deal with how you feel before anyone else knows. In the event, I was able to hide how truly low I felt about it, and nobody guessed.

I suppose it meant it was more of a shock when they did find out, but frankly other people’s feelings aren’t of primary import to me at present. It’s not that I am selfish, just that I can’t share my dark feelings and remain in control of them. I prefer, so far as possible at the moment, to keep my emotions in check.

I told the boys on Saturday. They seemed to take it ok. James looked upset and a little angry – anything he doesn’t like or agree with gets an angry response. Charlie took it quietly, in the silent, contemplative way that Charlie does. How they adapt to it remains to be seen. Liz is talking to their schools so that they are aware, in case things really affect them.



With MS, no one can hear you scream.
(with apologies to “Alien”)