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Finding the energy to fight
Chronic Fatigue patients struggle for normal lives
Wednesday, Nov. 22, 2006
 Click here to enlarge this photo Staff Photo by Gary Smith
Terry Hedrick of Cobb Island was suddenly hit with chronic fatigue syndrome in 1994. She now has learned to pace herself and finds ways to deal with the disease, but is unable to work or have a normal social life.
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It was 4 p.m. May 9, 1994. She was recovering from a minor operation on her sinuses that was supposed to solve a few issues she had had for years, when she suddenly became ill.
Her symptoms were sudden and severe. Doctors at first thought she had been hit with a viral infection as a result of the surgery. They gave her pain medication to get her through it.
‘‘They assumed it would go away in a few days,” the Cobb Island resident said.
It did not.
‘‘The days passed, and I didn’t need the pain medication, but it just kept going,” Hedrick said. ‘‘I was sleeping 12 to 14 hours a day, I couldn’t stay upright.
Eventually, Hedrick was diagnosed with chronic fatigue and immune dysfunction syndrome.
Before that day, Hedrick was an active person, taking her dog on long walks and spending time in her garden. She was dedicated to her career as a member of the Senior Executive Service at the congressional agency General Accountability Office. There, she said, she headed a division of researchers who did studies for congressional committees.
Once the illness hit, everything changed.
‘‘I was housebound for a couple years, but now can manage to get out to buy groceries and take care of myself,” Hedrick wrote in an e-mail. But once those chores are done, Hedrick has no energy left for work or having a normal social life.
‘‘Gardening got reduced to clipping a flower or two,” she said. ‘‘If I wash my hair in the morning, it takes about three hours to recover. ... You learn to pace yourself very carefully. If I need to buy groceries, I plan it the day before. I get my clothes out and take a shower the night before. I get my groceries, put them away, and that’s the day.”
Living with the illness for more than a decade now, Hedrick has managed to work her life around it to an extent. She has formed a book club that meets about every six weeks and provides her with a social life, and the other people in the club are sympathetic, which can actually be rare for people with CFS.
‘‘The name sounds so trivial that people don’t understand,” Hedrick said.
Dr. Coryse Brathwaite, a physician at A Woman’s Place in Waldorf, said people often think CFS is an imaginary disorder.
‘‘People say it’s in your head,” Brathwaite said. ‘‘Very few people are even treated” for the disease, because it may not be correctly diagnosed.
Despite the major changes the illness has brought about for Hedrick, she said she still feels somewhat lucky, mostly because of where she was in her career.
‘‘I was a federal employee at a fairly high level,” she said, which was especially lucky because being in her mid-40s when the disease hit her, Hedrick had not even considered long-term insurance coverage. But the ability to take long-term disability was already a privilege for her because of her federal job. Before the diagnosis, Hedrick had rarely used her sick leave during the 13 years she was working for the government.
Now on disability retirement, her pay is barely comparable to what she made when she was working, but she still has insurance coverage and feels fortunate to at least have that.
‘‘I am one of the lucky ones,” she said.
A diagnosis of exclusion
Brathwaite said she has given several of her patients the diagnosis of chronic fatigue syndrome, but overall, she thinks the disease is underestimated.
‘‘It’s a growing problem,” Brathwaite said. ‘‘I think it’s one of the underdiagnosed but more prevalent problems.”
She said it is difficult for doctors to pin down because there is not a specific set of symptoms that define it.
‘‘It’s become a diagnosis of exclusion, but I think that’s changing,” she said.
There are now research centers all over the world that are dedicated to finding the source of CFS, as well as making it easier to diagnose and treat. Brathwaite said a patient who faces the diagnosis should consider major lifestyle changes, especially in their stress levels and environment. Some patients are still able to work, but have to constantly be mindful of pacing themselves. For some, the disease lasts the rest of the their lives, while others recover after a few years.
Brathwaite said patients and doctors have to take a multidisciplinary approach to the illness and be flexible throughout treatment.
‘‘Things change,” she said. ‘‘One week, exercise is working great. Next week, they can barely get out of bed.”
Anne C. Crowley is an acupuncturist in La Plata who said she sometimes sees patients who suffer from CFS and other fatigue-related illnesses. Crowley said she works on the energy patterns of people who suffer from the illness, in hopes of increasing their overall energy levels.
‘‘I’m looking at the total person,” Crowley said. She said she looks at the pulses of energy in each person, and if they are too low or too high, she tries to reduce the symptoms. ‘‘I’m going to treat all of it.”
Theories and more theories
The Chronic Fatigue and Immune Dysfunction Syndrome Association is dedicated to finding the cause, and perhaps someday a cure, to the disease. But the road has been a long one, and there doesn’t seem to be an end in sight. In the CFIDS Chronicle, a publication created by the association, there are details of many theories about the disease.
The top theory is that the immune system is the focus, if not the cause, of the problem. It seems that the immune system is in a low-grade battle with an unseen virus or infection, activating cells that are used to fight disease.
Some patients have abnormalities in brain metabolism, or in the hypothalamus. Also, some patients cannot maintain their blood pressure once they stand up. Others may have low levels of blood volume. There are studies that indicate genetic problems in energy metabolism and enzymes that come from diet. The symptoms vary considerably and range widely in severity.
For Hedrick, being diagnosed with the illness has changed her life, but she hopes to channel what energy she has into helping others who have it. She now dedicates her time to helping the CFIDS Association with grant-making efforts that support research into the disease.
The association ‘‘was the only place I could find good information on how to live with this,” Hedrick said. ‘‘I admire them. They’re very careful about not endorsing things. They’re more of a catalyst. Their goal is just really to find a cure.”
E-mail Carrie Lovejoy at clovejoy@somdnews.com.
