Accepting the New Me
By Margaret Robertson

My struggle with CFIDS began eight years ago with what I believed was a bad case of the flu. After about six weeks of battling flu-like symptoms I felt better. A year later the flu returned with a vengeance.

Over the course of the next few years the symptoms would intermittently return, so I finally visited my internal medicine doctor for a checkup. After administering a few tests the doctor said I was fine. I knew that wasn’t true, so I changed my primary care physician and began the process of visiting numerous doctors and having tests done. I went from rheumatologist to cardiologist, from neurologist to urologist. I was tested for lupus, Lyme disease, thyroid problems, diabetes, rheumatoid arthritis and multiple sclerosis. All of the tests came back normal, and I was told there was nothing wrong. Antidepressants were suggested and tried, but there was no improvement in my condition. I also received a great deal of advice from well-meaning family and friends who thought I should get out more, push harder and try not to think about myself so much.

My symptoms are extreme fatigue, weakness, night sweats, swollen and sore lymph glands, faintness and occasional headaches. The least bit of exertion leaves me totally drained, and rest doesn’t restore my energy. During the search for a diagnosis I dealt with other health problems as well, including two cataract surgeries, gall bladder surgery and shingles.

In the third year of my illness I became desperate for a diagnosis and made an appointment with a doctor at Vanderbilt University in Nashville , Tennessee . After waiting months for an appointment, I saw a very nice doctor who examined me and did a large amount of blood work. On my return visit the doctor informed me that I had tested positive for Epstein-Barr virus, which in turn had caused me to have chronic fatigue syndrome. He felt that I was recovering and would eventually be alright. Although it was a great relief to have a diagnosis, the doctor’s prediction that I would recover was incorrect.

My life has changed drastically. The hardest part of this illness has been accepting that I am a semi-invalid. I cannot do the things I used to do and would still like to do. I went from being an active person with many hobbies and interests to someone who seldom drives a car, barely manages to grocery shop and infrequently attends church. The days of luncheons and club meetings with friends or shopping at the mall are rare. For the first few years the “spells” would go into remission, and I could be more active. Then without warning I would become too tired and weak to leave the house. When I first became ill my husband was retiring, and we looked forward to traveling. Since then many trips have been planned, but we usually end up unpacking our bags because I’m too ill to travel. My husband is very supportive and he’s helpful with heavy housework and shopping when necessary. I get dressed every day, manage to prepare our meals and do laundry, but it takes a great deal of effort to accomplish these tasks. I am an avid reader, which helps fill my time. I also enjoy painting, but sitting at an easel is extremely tiring.

Unfortunately my friends tend to forget that I would enjoy their visits and phone calls, and that I’d like to keep up-to-date about what’s happening in their lives. This illness is difficult for them to understand since I look well when they happen to see me at the grocery store. They just don’t realize that I’ll spend the rest of the day in bed recovering from that short trip to the market.

CFIDS is an illness I don’t understand either. I’m always hoping that tomorrow I’ll feel better and that I’ll be able to do more. In the brief times I do have more energy, I overdo it by trying to catch up on those things that have been left undone. I’m fortunate to have a supportive family. And I’m grateful that this illness didn’t strike when my children were young and needed me the most.

I am 73 years old now, and I know I probably won’t make much of a recovery. Even so, I do hope that research will be done to find a cause and a cure for CFIDS in time to help so many others who are suffering the effects of this terrible illness.