CFIDS SHOCKS

By LINDA CLEMENT

This is an edited excerpt from an article that appeared on the e-mail news service cfsmail 12/9/98

Do you remember the series of shocks you had in the process of realizing you had CFIDS? Those awful, frozen moments when you were forced to understand an unimaginable reality.

The first ones I had seem pathetically mild when I look back on them. The realization, after a few weeks of continually worsening symptoms, that this wasn't just the flu. The realization three or four doctors down the line that I wasn't going to get a quick diagnosis and "fix-it". And the realization eight or nine doctors down the line that I might never be diagnosed, that my family and friends might never understand or believe me.

That was the first time that my faith in life was really shaken. From now on, perhaps for the rest of my life, I was going to have to live with profound uncertainty and profound loneliness. Not to mention, of course, the disease itself.

I got sick on January 17, 1983. Three months later I woke up in Pain with a capital "P". Pain with a small "p" can disrupt your sleep, destroy your pleasure in life, and make you crabby. Pain with a capital "P" makes the concept of hell something you regard with ironic amusement. You've been there, done that and got the T-shirt.

I never went back to work after that day. I moved into my parent's home and endured yet another round of "it's all in your head" doctors.

I knew I wasn't entirely in my right mind. On top of the pain, I had been running fever for months, and my emotions felt like the lava flow from an erupting volcano. Heavy and slow-moving, but very, very intense. And dangerous.

I couldn't think either. I, whose nickname had been "The Walking Encyclopedia", now found Oprah too intellectually demanding.

To survive the pain I dedicated myself to learning what made me feel joyful and I determined never, never to waste a bit of my precious energy on anything that I didn't find thoroughly fulfilling. I kept those promises, too.

What I never expected is that there are just as many shocks climbing out of the CFIDS pit as there are when you're sliding into it. They feel better but they are still shocks.

Last August I realized that resting felt good, that I was in fact actually resting for the first time since January 1983. The word "remission" popped into my head and scared the daylights out of me. About two months later, something even spookier happened. I had been feeling better and had taken on a difficult research project. It heated up and I put in some 12 to 14 hour days, wearing myself down to a frazzle and passing out from exhaustion every night. I knew it would cause a flare-up, but some things are worth the price. You know how it is.

But the flare-up didnít come!!! I continued to feel better, though at a slower rate. That remission idea came barreling back out and hit me upside the head. I talked to it for days before it left me alone. It felt too dangerous to hope for that much. Then last week it took supernatural possession of my dentist.

I went in for a check-up. He was replacing a loose filling and YEEEOW! "Wow" exclaimed my dentist. "This thing is infected all the way to the root. You've got a whopper of an infection. I'm putting you on an antibiotic." I realized I had had an infection for two months and my CFIDS symptoms were actually improving. With the root canal and antibiotics I soon felt stronger than I had in years.

I was absolutely terrified. Hope does not always feel good, because where there is hope there is the possibility of disappointment. So I feel like a pinball ricocheting between hope and the fear of disappointment.

My friends, all PWC's, are worried. I've been working my tail off and they're saying "please don't do this!" They can't comprehend that exertion doesn't make me sick anymore.

It's unsettling knowing my life is changing for the better but not knowing how much it will change. I don't have the bone-deep fatigue but I still tire much more quickly than other people. Astonishingly an hour's rest will pretty much get rid of it. And I have no pain at all for most of the day. I feel like Iíve stepped into the twilight zone. Here I am facing a new future of uncertainty again. Darn it.

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