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Saturday, October 08, 2005

Theory # 3: Dealing with CFS

CFS = Chronic Fatigue Syndrome, and I've had it for 4½ years. It's a negative diagnosis--meaning it's what they say you have when your symptoms can't be explained by anything else. I'm not going to debate any of that, just write down what works for me, because I need reminding again.
  • Rest. Not that I had a lot of choice, at first. I remember well (and so does my family, which makes them very supportive) times during the first 6 months when it was all I could do to get from my bed to the bathroom. But I've learned that even when I'm doing well, I can't ignore the need to rest. Normal people, when they're feeling a bit tired out, can afford to push themselves. I can't. I'll be paying for it ten-fold if I do. So whenever I feel my eyes start to cross, or I start to feel jittery, it's time to lie down. And it does need to be lying down. Just sitting doesn't do the trick--I'm not sure why. Maybe it's not relaxing enough.

    Resting needs to be done at periodic intervals throughout the day, too, not just when I'm already feeling tired. I keep from getting too frustrated by the need for rest by reading, as evidenced by the long lists of books I've read each month.

    Talking, at least for me, is not resting. Even if I'm lying down, conversation requires energy that I'm trying to conserve. That was one of the hardest things to explain to my mom and daughter, for whom talking is like oxygen.

  • Graduated exercise. Not 10 minutes a day the first week, followed by 20 minutes a day the second week, like I've seen on some websites. No wonder so many fellow CFS-sufferers (I hate that word, but couldn't think of a better one) have given up on exercise! A program like that was obviously not developed by someone with the condition. It takes a long time to work up to 10 minutes of exercise.

    I started with one minute. That's right. One. And if I've had a relapse, that's where I start again. Hard as it may be to believe, that one minute is exhausting. But it's important. Then I add time each day in 15-second intervals. Yes. 15-seconds. I said gradual, and I meant it. Whenever I've tried to speed things up, I've ended up back in bed. Exercise is not the same as general activity like housework or shopping or playing with the kids, though those activities need to be increased on a gradual level as well, just not quite as strictly. Exercise is important to rebuild the muscles and stamina, in a way that general activity just doesn't touch.

  • Diet. I always feel better when I eat healthy--lots of fruits and vegetables and whole grains. The irony is, of course, that healthy food is a lot harder to prepare, and when I'm at my worst, I'm just not up to it. So I do what I can.

  • Supplements. I've experimented somewhat, done my own "clinical trials" based on what I've learned from other people with the condition. I take a multivitamin with minerals, an extra 500 mg of vitamin C, and 120 mg of Gingko Biloba. The gingko was the only thing that seemed to make a difference, & I've stuck with it.

  • Medical care. Hah. Let's just skip that one. Six months of appointment after appointment, test after test. An initial diagnosis of CFS about 2 months in from a neurologist, repeated a couple of months later from a rheumatologist. Oh, and a rather amusing diagnosis from an infectious disease doc who said that if I'd been sick for 6 months, he'd say I had CFS, but since I'd only been sick for 5½ months at that time, then that obviously wasn't it. The other docs I saw (and there were a lot) didn't believe in CFS, like it was a religion or something. And there was the doc who actually told me I was "obviously" depressed (though he wasn't a psychiatrist, and I answered his two perfunctory questions in the negative), and that I should just take some Prozac and go away, and quit wasting medical resources. Seriously. So I quit going to doctors.

    Which was probably a good thing, as I've seen way too many people with CFS getting sicker and sicker because their doctors keep adding on one medication after another. Antidepressants, because, duh--becoming a virtual invalid is rather depressing. And then medications to deal with the side effects of the antidepressants. I'm doing better than most of them, and I'm not medicated.

  • Avoiding stress. It's difficult, when I'm lying down for one of my half-hour rest periods, to avoid looking around at the dust, or worrying that I'm messing up my kids' lives. I've learned/am still learning to let things go, to prioritize. I can't do everything.

  • Overdoing it. Don't. I can pinpoint when my latest relapse, that I'm still recovering from, started. February. I spent over an hour shoveling the driveway and sweeping the snow off the sidewalk. Stupid, stupid, stupid. I'd been doing so well, I'd forgotten that I couldn't do that.

  • Support. The importance of this can't be overlooked, and I have to say, I am the most fortunate person I know in this regard. My husband has been an absolute rock, and my mom and kids have been great, too. I had to learn to let go of my need for independence, though, and accept their help and support. It wasn't easy.

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