Taking Swings at the Air

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I am relatively new to this illness. I have attended a couple of local support meetings and found that everyone there has had this illness more than five years. I feel lucky to have so much knowledge and experience from which to learn.

The problem with this illness (Chronic Fatigue Immune Dysfunction Syndrome) is that there is nothing which can be measured, no objective medical evidence. This lack of evidence is the greatest obstacle to acceptance both from the medical community and the social community in which we live. It even can cause us to doubt ourselves. We are fighting an invisible enemy, taking swings at the air.

For me, it all began some 10 months ago after a camping trip. It was originally suspected to be Lyme Disease and was treated as such with antibiotics. With no improvement from the treatment, my doctor began looking for other possibilities. There were the usual battery of blood tests, urine tests, a referral to a rheumatoid arthritis specialist, a referral to a neurologist, which resulted in a variety of neurological tests, and a referral to a sleep disorder specialist. Except for the previously existing conditions of hypothyroidism, (dust/mold) allergies, and high cholesterol, the only test that came back out of the ordinary were the SED rates. Nothing in these tests explained why I was so sick or what I could do to get better. That was when my doctor explained that he believed I had Fibromyalgia/Chronic Fatigue Syndrome. I was one of the lucky ones to have such a doctor. The symptoms I experienced were an unusual collection: physical exhaustion (the word fatigue is too mild to describe this symptom), muscle/joint aches and pains, sleep problems (without medication, I cannot sleep through the night), cognitive problems (memory and concentration problems, these have always been among my strongest points—my organizational and memory skills—now they are unreliable), frequent headaches, sore glands, sore throat, and frequent illness.

From the time this syndrome began it seemed to almost have a rhythm. I'd be getting by for a week then wham—I'd be sick again. I am never well anymore. I am no longer able to participate in camping, tennis, hiking, none of the physical and social things I'd previously enjoyed, even my involvement in get-togethers with friends is reduced or eliminated.

I had gotten to the point where I was ill all the time. I was run down and did no more than drag myself to work and drag myself home to bed (on the days I did go to work). My work was suffering. I had to turn down business trips and beg off on new assignments. I was slipping downhill health-wise and could see no way to stop it. I met with my doctor and it was decided that I would take a short medical leave.

The prescription was rest. I am learning how to live all over again. What I can do, what I can't do, what I can eat, and on and on. The price of the "wrong answer" is suffering. It's very frustrating. I had filed a claim for disability (a work benefit) but was denied. Because I cannot afford to be without an income (or the stress of financial problems), I returned to work. I am currently appealing the claim.

Julie lives in Middleton, and still works as a computer analyst.