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Testimonies: Living with chronic fatigue and immune dysfunction syndrome

through the proverbial "childhood from hell," complete with a mentally ill alcoholic mother, an abusive step-father, sexual abuse, being kidnapped by my real father, surviving a plane crash, and plenty of shocking and traumatic experiences. But I had weathered it all fairly well. Ten years ago, following a divorce, I was a single mother in my thirties, working at a job I was good at and enjoyed very much. My children were growing up well and happy, and I had no trouble putting in 50-hour weeks and still managing to take care of myself, my children, and my home. It was a full and productive way of life.

And that's when CFS invaded my life and turned it upside down. I had come down with what seemed to be the flu. It was a typical case, or so I thought. I got extra rest, stayed in bed, took medicine, and waited to start feeling better. On the third day of this illness, I awoke feeling very disoriented and "out of it." I attempted to call work to say that I was still ill and probably wouldn't be in. But I was shocked and frightened to realize that I couldn't remember how to use the phone, or what number to dial. When I finally figured it out, and made the call, I had trouble remembering how to speak! What on earth was going on? Why was I worse, instead of better? What was wrong with me?

Most of the flu symptoms gradually abated, leaving behind incredible fatigue, a sore throat and swollen lymph glands, and a few minor neurological symptoms, including difficulty thinking of words to say. My mind remained foggy. I kept getting confused about how to do things I had always taken for granted. It would come and go - one minute I could think and talk, and the next minute I was like an Alzheimer's patient with significant dementia. I had trouble driving and typing, among other things. Doctors were mystified. One doctor suspected some type of encephalitis. A neurologist thought the flu could have brought on a mild stroke, which was ruled out by tests. Another doctor suggested I was having complications from an adult case of mononucleosis (my blood tests showed high levels of Eppstein-Barr antibodies).

Gradually life went on, but I somehow got left behind. I was no longer able to work at my former job. In fact, I was no longer able to work even 30 hours a week, much less 50, as I had before. Many days it was a huge undertaking just to get out of bed and stay out of bed. A doctor finally told me what he thought was wrong. "A large percentage of the medical profession is skeptical,"


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Testimonies: Living with chronic fatigue and immune dysfunction syndrome

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