I was one of the success stories. For 12 years after diagnosis, I worked full-time. I had to pace myself outside of work, spend almost all of my non-work hours resting, but I kept working.
And in December 1999, I got a weeklong sinus headache. Followed by the flu. And because I had gotten cocky about being able to work despite the CFS, I kept working instead of taking a few days off to get well.
Big mistake.
The sinus+flu combination had taxed my already-fragile immune system, and right at the beginning of flu season when I needed it most. My health continued downhill through January 2000. I finally took a sick day in February, when I literally could not get out of bed, but by then it was too late. My employer was already unhappy with my rapidly-declining productivity and my health was already too far gone, I was fired. Under ADA, you are not entitled to a job that you cannot perform, so they were legally entitled to do that.
Still foolishly thinking that this was "just the flu", I assumed that I could get back to work if I spent the next week or so sleeping. Wrong! I felt better after a week in bed, but as soon as I got up and did anything, I felt worse.
The first doctor I saw was brutally honest, "I don't know much about CFS, and I'm not interested in learning"; he prescribed something that I had already been told *not* to take because of a bad reaction to a related drug. The second doctor was convinced that all divorced women are depressed alimony-seekers, and while he told me to my face "I want to help you" what he really did was fill my medical records with false statements to lead people to the conclusion that I have chronic depression and refused anti-depressants because I don't want to get well and have to return to work. When I finally got to another specialist (more than a year after the first one), first he gave me a prescription for something that I already knew didn't work for me, and then gave me a prescription for the same thing as the first doctor, the one I'd been told *not* to take. When I showed that prescription to a doctor I trust, he asked point-blank "are they trying to kill you?", and repeated the warning that I was not to take anything in that family of drugs, ever -- "if you want to try it, check into a hospital first". My offer to have a nurse-friend spend the night with me wasn't good enough: yes, she would be able to call 911 if I had another bad reaction, but she wouldn't have the necessary medical equipment to save my life if this reaction was worse than the last one (as repeat reactions often are). He wanted certain life-support-type machines available within seconds, not at a hospital 6 blocks away.
Since it took years of begging doctors for what I knew to be the right pills, and having them paternalistically pat me on the head with the assertion that what they wanted to prescribe was better for me, I continued to go downhill. To the point that just walking to the kitchen 3x a day to grab a quick meal was too much, and I had to stash bottled water and cereal bars under the bed so I could stay within my physical exertion limits and at least hold steady instead of continuing to deteriorate.
It wasn't till I got a doctor to listen to me that what I needed was sleeping pills, not anti-depressants, that things turned around. A couple months after going on the sleeping pills, I started to run a 101 fever. When it hadn't gone away after a week, I consulted a nurse-friend, who chortled "Congratulations, you have a functioning immune system again!" The fever stuck around for six months, and when it finally broke, I felt better than I had in ages: my immune system finally had the upper hand over the virus again. But, as one specialist later told me, by then the physical damage was done; I'd been allowed to deteriorate too far by doctors who thought CFS could be treated with anti-depessants (they've repeatedly been proven useless against CFS), and I would *never* be able to return to work full-time.
I'm determined to prove him wrong, but it will take time. CFS expert Dr. Murphree (www.DrRodger.com) tells me that for every year of deterioration, you need at least one year of recuperation. The odds of recovery are best in the first five years, and I was almost exactly five years from the start of the relapse when I saw Dr. Murphree. Maybe the year on the experimental sleeping pills bought me some time, maybe not, since I spent most of that year sicker than a dog with the fever.
I can now (most of the time) go out for lunch with a friend without it costing me 3 days of resting up before and 3 days of resting up after, but I still feel it if I try to go out more than 2 hours at a time, or more than twice a week.
The moral of this story is: Don't ever think you're cured and can do whatever you want.
Even when you think you're in remission, you will never again be able to push yourself as hard as you did pre-CFS, because the threat of a relapse is always lurking just around the corner. It's not an irrational phobia, it's a very real threat. Don't let anyone tell you that your problem is "fear of exercise" or "fear of work" or "fear of fear" ... there's a virus in your system that is just waiting for another illness to tax your immune system enough for the virus to get the upper hand again. Taking preventive measures to prevent that is not "fear", it's good old common sense. Something a lot of the CFS detractors and psychologizers seem to lack.
No comments:
Post a Comment