Friday, December 3, 2010

What Laura Hillenbrand does for her CFS

"It's a combination of the arrogance that is an occupational hazard of medicine and a certain degree of sexism."

In the intervening years, Hillenbrand has experimented with an array of treatments, including steroid hormones, daily vitamin B-12 shots, a gluten-free diet, acupuncture, and Chinese herbal ­remedies. "They didn't help," she says, "and in some cases made things much worse. So because of the way a seemingly small mistake can land me in bed for years, I've become very conservative. The most effective thing I've done is to learn, through trial and error, how best to manage my body—eating bland, easy-to-digest food, keeping the temperature in the house low, and always stopping myself the ­moment I feel myself sliding into fatigue."

When possible, she also practices yoga, not only to prevent her muscles from atrophying but to maintain her emotional balance as well. "It's not just the poses, but also the meditation," she says, "and learning and applying the philosophy behind it: ­acceptance, living in the moment, focusing on being peaceful, being alive to what is beautiful and good all around me.

... since there’s still no treatment for CFS, once she was diagnosed, her medical bills became quite low. The usual luxuries (travel, clothes, fancy restaurants) hold no appeal, either. The disease complicates digestion, so Hillenbrand’s diet is spare and unchanging: Wheetabix and skim milk for breakfast, toast with almond butter and blueberry spread for lunch, and baked chicken with baby-food vegetables for dinner."

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My health has not been as easily damaged as Laura's, so I've been more of a risk-taker with treatments. You name it, I've probably tried it: ACTH, powdered adrenals, 5HTP, carnitine, CFS/Fibro Formula from, someone has recently suggested Lysine... Some gave me a bit of a bounce, others had no effect at all. My theory is that I will take the first bottle of something and then stop for a few weeks. Do I backslide without it? If not, then either any improvement was a coincidence, or whatever deficiency has been corrected. I'll periodically stop all these things to judge whether they are still providing a benefit.

The big thing for me was finding the tipping point -- which at one point was so low that 3 trips a day from the bedroom to the kitchen for meals was too much -- and pacing myself to keep energy expenditure below that level. The stumbling block in conversation, though, is people who don't grasp that "I feel fine" is not the same as "I am fine"; I feel fine because I don't overdo. It doesn't mean that I'm ready to jump back into life at full speed, simply that I've come to acceptance with the limitations and learned to live with them. I feel fine because I don't work 8 hours a day. If I tried to do that, I'd quickly feel worse.

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