Monday, September 18, 2006

I'm not the boss of me

MS fatigue is the boss of me.

When I first heard about 'MS fatigue', I thought something like "Well, duh! People get tired - what's the big deal?".

Ah hahahahaha... Little did I know (and boy do I wish I didn't know now). MS fatigue is beyond any normal kind of tired I'd ever experienced, even in the days when I was traveling to Europe and Asia for business, and would return home to my normal routine of family, housework and job. I used to get very tired then, especially when I was returning from China or Japan, but that was NOTHING compared to the way I feel every day after I've been awake for four or five hours. And it's not like I DO a helluva lot in those four or five hours, either. I mean, I do try to exercise every morning, on my trusty Theracycle , an exercise bike built by the Exercycle Co. and designed specifically for people with disabilities (it's awesome, and I can't imagine living without it). I do something like 40 minutes on the Theracycle, usually watching a DVD (or gazing out at the birds at the feeders on the back deck), and I try to do some minimal chores around the house, but that's about all I'm able to manage before what feels like a heavy, dark curtain starts to descend in my head, and my body is just too tired to do anything other than crawl into bed and rest. And rest. And rest. And rest.

It's about impossible to plan two social activities in one day (if I want to go to a friend's place for dinner on Saturday night, there's no way I can also check out a street fair or art show in the afternoon. I can't plan anything between the hours of noon and five because I know I'll be living under that dark curtain during those hours, and it's best that I stay at home and not venture out. Nothing scares me more than the thought of being on the road somewhere when the curtain starts its descent, and finding myself too tired and spaced out to drive home. Rather than risk that happening, I opt to stay home, where I'm relatively safe (at least from the dangers inherent in driving a car when I'm barely functioning). And even though I know I really should be damned grateful I have a home to retreat to, where I do feel relatively safe, I still get angry and frustrated when MS fatigue shows me - every day - who's really the boss of me.

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