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May/June 1998


Living with CFIDS
A family's struggle:  Searching for hope
By John Moir

It began in the summer of 1992 when my wife, Ellen, became ill with a mysterious flu bug. As the days shortened into autumn and she couldn’t shake the persistent headache, exhaustion and aching joints, it became clear this strange, unseasonable illness was serious. We began seeing doctors, searching for an answer.

It took us three more years before we finally put a name to her illness: fibromyalgia. But even in those first, bewildering weeks, we felt the foundations of our life shifting. We had begun a journey of endurance, where progress seemed a mirage and hope was the pillar holding up our world.

Several months before her fibromyalgia struck, Ellen had spent three weeks in bed with adult chicken pox. Hollow-eyed, she dragged herself back to her demanding job as a teacher trainer, passing the springtime in a futile effort to catch up. When the workload eased off in summer, she pushed herself at the gym to get back in shape.

The workouts were the final straw. On a sun-drenched day in August, her body succumbed to fibromyalgia. Many days Ellen was too weak to do much more than lie in bed and sleep.

At first, she was given antibiotics for a possible sinus infection. Then an infectious disease specialist diagnosed viral meningitis. Several weeks passed with no improvement. Alarmed, doctors started looking for more serious problems such as brain tumors, lupus or multiple sclerosis. Nothing showed up as we tiptoed past these dark chasms.

Finally, the doctors decided it was Lyme disease. This tick-borne illness caused symptoms similar to Ellen’s and was treatable with antibiotics.

But a month of antibiotics did nothing. Too sick to work, Ellen took a medical leave from her teaching job. I was exhausted from working full time and trying to care for Ellen and our son, Jeff.

At times, Ellen would simply burst into tears, saying, "This is the hardest thing I’ve ever done." Uncertain how to help, I listened to those searing words, realizing this was also the hardest thing I had ever faced.

At Thanksgiving, I couldn’t bring myself to say the usual blessing of thanks at the dinner table. Afterward, I broke the turkey wishbone with Jeff, wishing for Ellen’s health to return.

I lost.

Still thinking Ellen had Lyme disease, a physician agreed to prescribe intravenous antibiotics, which can sometimes cure that illness. We had hope.

The next Thursday night, a nurse arrived at our house and inserted a thin, six-inch intravenous tube into Ellen’s arm. Twice a day, Ellen spent an hour dripping antibiotics into her body.

A month passed with no change. The intravenous antibiotics had cost nearly $5,000 and Ellen was no better.

We returned to our family doctor and settled on another diagnosis: chronic fatigue syndrome. With all other serious diseases eliminated, it was the only thing left.

But traditional medicine offered little help for chronic fatigue syndrome. Some doctors didn’t even believe it was really an illness. We began to wander in a medical quagmire, searching the world of alternative medicine for a cure.

Ellen saw homeopaths, chiropractors, acupuncturists and osteopaths. She tried special diets, exotic herbs and meditation. Frequently the treatments were mutually exclusive so we had to decide which seemed best.

As time passed, Ellen began ever so slowly to improve. Eventually, she was well enough to return to a modified schedule at work.

Meanwhile, the medical bills piled up. Because our insurance company didn’t recognize chronic fatigue syndrome as an illness, they refused to pay thousands of dollars of medical expenses. I wrote letters. I argued. And I lost.

At glacial speed, Ellen continued to improve. One day she visited a rheumatologist who diagnosed her with fibromyalgia, which is so similar to chronic fatigue syndrome that it may be a variation of the same illness.

There is still no cure, and overdoing it always carries the threat of a relapse. The lesson to be learned over and over is how to adjust to living with limitations. These limitations affect Ellen, they affect me, and they affect our whole family.

But there is a certain comfort in knowing what we face. We can mourn what we have lost and be grateful for what we have.

Once again, we say the blessing at the Thanksgiving table. Once again, we have hope.

John and Ellen Moir live in Santa Cruz, Calif. John is author of Just in Case – Disaster Preparedness and Emergency Self Help (Chronicle Books) and the just completed novel Shutterbug.