November 5, 2010

The creeping terror

Ah yes, well, I do like to be dramatic.
So here I've been, feeling vaguely well for the last while, exercising madly, almost able to walk without occasioning some disturbance in my motor core.  But the evil MS doesn't sleep. It's still there, and as soon as I put pressure on myself, it slithers out around the edges and does little things to me, like making my right toe drop just for the heck of it, or making my balance wonky all of a sudden so if I turn about I risk falling, or stopping my brain from chugging along appropriately. My typing degrades.  My ability to make decisions slips ever squidgewards. I make up silly words....

Marc, the infamous Wheelchair Kamikaze, pointed out the slithery dread in his blog today in talking about why there seems to be such a split between neuros and MS patients regarding CCSVI. The thing is, all the stuff they offer us just delays the inevitable.  Our brains remain twitchy, swollen, and the MS continues to kill off the myelin or astrocytes or whatever they are figuring out now, even when we appear fine. I have a good friend who has pointed out several times that we none of us know our fate, and tis true I may be run over by a bus tomorrow - but the difference is, we do know what our future MIGHT be, and it causes fretfulness. We would prefer a cure, thanks.

Every time I feel my body slipping, I can feel that dread.  I can usually compartmentalize it, promise myself that I will worry about it tomorrow, so needn't do so today, but when I head to bed and notice that, despite the medication I am on that used to work to stop my leg spasms, they have returned - well, it's scary.

Or when I go to an event and see people with MS much further along than I am - it's hard not to put myself in that wheelchair, imagining how I might cope, wondering how they find the strength to do it.

Then I shake myself and tell myself that really this just means I should squeeze joy out of whatever fit days I have left, and find extra joy in wherever I need.  It's true, but it's not always easy. Pollyanna-ishness is tiring.

It makes me want to punch things.

1 comment:

Che koala said...

There's a Mother Teresa quote I got told recently that goes along the lines: God only gives you what she thinks you can handle ... I just wish she didn't trust me so much.