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What Is Wrong with Me?
At one point I could hardly lift my head off the pillow. I felt as if I was going to die. Everything was wrong in my body. I had already seen all kinds of doctors, and I do mean all kinds of doctors. No one could tell me what was going on in my body.
BECKY TURNER, TEACHER WITH CFIDS
The third weekend in October 1988 forever changed my life. Everything that happened before that weekend is B.C.-- before chronic fatigue and immune dysfunction syndrome. Everything that happened after that weekend is colored by a frightening, debilitating illness.
In many ways the weekend was normal, except that our son, Matt, and I both had the flu. We were achy, had fevers, felt drained of all energy. In two days Matt recovered and returned to school. I got worse. Seven years later, I have still not recovered.
Not one to rush to doctors, I waited several weeks before I went to our internist. By that time I had a swollen throat, sore ears, a persistent fever, and extreme fatigue. Fairly confident that he would have some answers for me, I went to my doctor's office. That day I came home with ten days' worth of antibiotics. I dutifully took the medication, fully expecting to feel better in two or three days. When I felt even worse after completing the ten-day regimen, I returned to my doctor, less confident than I had felt on the first visit.
By this time even traveling to my doctor's office was a struggle. I became increasingly weaker, feeling much more pain when I walked or moved. During this second visit, my doctor and I explored other explanations for my symptoms. I had traveled with my husband, Bas, to both Bangladesh and remote areas of Thailand six months earlier. Perhaps I had picked up a parasite or other illness there. A few weeks before I had become sick, World Relief, the Christian relief and development organization for which Bas works, had had its international conference, and staff members from Asia, Latin America, and Africa were in our home. Perhaps I had caught something they had carried. My doctor, who had lived overseas, was not new to foreign and tropical diseases. But as we explored the various options, we came up empty-handed. Since a number of my symptoms seemed to be respiratory, he decided to try a stronger antibiotic, and he referred me to an ear-nose-throat specialist. When I left my doctor's office that day, he said to me, "I hope this works. If not, I'll see you in two weeks."
I thought to myself, Two more weeks! Why can't he find out what's wrong with me? I'm not sure I can hang on emotionally for another two weeks. Little did I know at the time how foolish those thoughts would seem seven years later.
That two weeks seemed interminable. I felt no better as a result of the stronger antibiotics. I also was experiencing more symptoms. I had night sweats that left my nightgown and sheets wet. I developed head pain unlike any other headache I had experienced before. When I tried to walk, I felt as if my body was incredibly heavy. It was hard for me to move it from one room to another. I began to spend most of my day on the couch.
Strong nausea awakened me in the morning and persisted throughout the day. Maybe I was pregnant. That was an unnerving thought for a forty-year-old, but at least it would explain a few of my symptoms. A trip to the gynecologist confirmed that I was not pregnant.
Sleep soon became a problem. Although I was deeply exhausted all the time, I couldn't fall asleep when I went to bed. I would toss and turn for hours, finally going into a light sleep, only to awaken again in an hour.
Several times during that period, I wondered if I was losing my sanity. I felt trapped inside a body I didn't understand. I knew I was sick, yet nothing in the tests the doctor had done explained my symptoms.
I returned to my doctor's office for more tests to rule out lupus, Lyme disease, multiple sclerosis, hepatitis, leukemia, and other illnesses that could explain some of my symptoms. I began to feel alarmed.
While I waited for results of these tests, something happened to increase my alarm. One afternoon after school our nine-year-old daughter, Alisa, returned home almost an hour late from her neighborhood paper route. When I questioned her about why it took her so long to deliver her twenty newspapers, she sighed, "Oh, Mommy. I was so tired. Every time I brought a newspaper to a house, I had to sit on the steps for a while before I could go to the next house. I don't know what's wrong with me."
Bas and I exchanged knowing glances. What was happening? This was not our bouncy, effervescent daughter. Rather than jump to any conclusions, we said nothing, not even to each other, and merely watched her for several days. She was too sick the next day to go to school. We could hear from her speech how swollen her throat had become during the night. She had a fever, and she was weak.
After several days with no improvement, we took Alisa to the pediatrician, who was sure she had a strep infection or mononucleosis. However, both tests came back with negative results. The pediatrician put her on antibiotics and assured us she would be fine. This was beginning to sound like a familiar pattern.
Bas and I had lots of questions as we watched Alisa get sicker with symptoms remarkably similar to the ones I had. What was this illness? Was it contagious? Should we quarantine our house from outsiders? We had a graduate-school couple who lived in our house with us; were they in any danger?