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Dancing with the Dragon

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By Beatrice D.


Note: Beatrice, an American living in Paris, is a long-time member of our community and a course moderator.


CFS struck me at age 21. Within a few weeks, I was turned from a college student who regularly swam three miles a day into someone functioning at 10% of normal. Over the following ten years, I recovered back to 50% and beyond, where I am today, 25 years after the onset of my illness.


I attribute my improvement to a combination of pacing, graded exercise and support. Here are some of my strategies.
 

Pacing


Even though my fatigue and brain fog started in spring, I didn't drop out of school until the fall. Then I was able to let my body get the rest it needed. I set a few priorities: rest, food, some social interaction and medical attention.


Having short activity periods tops the list of pacing strategies. For example, in the first weeks of my convalescence, eating meals exhausted me. I prepared simple breakfasts and lunches, and then went back to bed. The diabetic friend who took me in made me dinners, thank goodness.

Taking showers exhausted me so I took them once every two days. Leaving the house for any reason exhausted me, so I stayed inside, sometimes for several weeks, to recuperate.


From 1989 onward, I kept extensive records of what I did, how I felt, and what I ate to find correlations. I tried to find my limits and remain within them. For example, I was sensitive to soy, corn and eggs, so I limited them. I also noticed that symptoms increased during the allergy seasons, so I had to allow for extra rest during them.


By September 1989, I was able to live on my own, but it was difficult. I did laundry once a week and nothing else that day. Standing to cook wore me out and hurt my thighs, so I sat at a table. I prepared dinner two to three times a week and ate the leftovers the following days.

Vacuuming, mopping or heavy housework would have put me in a severe relapse, so I just didn't do it. And I took three "naps" or down times per day, whatever my symptoms.


From 1989-1994, the time I spent in daytime resting and nighttime sleeping decreased from 15 hours a day to 12.


Nowadays, I teach English a couple of hours a week. Most days, I can read, write or work on the computer for up to three hours. However, I have to limit these sessions of concentration to less than one hour each.


I still do laundry once a week. I shop twice a week, get groceries delivered, and make it into the city once a week by metro and a second time by car. Finally, although I can get through many days without an afternoon rest, I do much better if I lie down and forget the world for twenty minutes.
 

Graded Exercise


When I say graded, I mean very small steps. At first, it was not even baby steps, but nano steps. For the first few months of my convalescence, getting dressed and taking a shower were my only exercises.

When I lived on my own, walking around the grocery store was my exercise. I took the shortest route possible around the store and parked in handicapped spots.


When I moved to Paris, I took up yoga. But, when I discovered that many yoga poses trigger migraines, I switched to gentle gym. I keep my pulse below an anaerobic level and try to keep my joints mobile as I age. [Note: For an explanation of anaerobic threshold and exercise, see the article Pacing By Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope.]


When my town pool re-opens in a few months, I hope to resume some gentle swimming. Since I fell ill, I have never been able to do anything aerobic for more than ten minutes, so I still have to be careful to avoid overdoing. I wish I could do more, but I'll take what I've got.
 

Three Kinds of Support


My improvement was helped greatly by three kinds of support: from family and friends, from therapists and from doctors.
 

Family and Friends

I never would have made it as far as I did without the support of the man who was my boyfriend when I got sick and is now my husband. The support of my family and a diabetic friend were also critical.

For years my future husband visited me when he could and telephoned every day. His confidence in my potential for improvement was very reassuring. Even when I was too sick to read the TV Guide, he told me I'd go back to school one day, which I did.


At first my mother didn't "get it," but after I lent her a book on CFIDS, she was more sensitive. Thanks to her, I was especially lucky in that I never was under any real financial pressure.


The diabetic friend who took me under her wing for two years taught me how to dance with the dragon called exhaustion. I call it a dragon because if I tried to ignore it, it wreaked its vengeance on me, not with fire, but with the intensification of symptoms called Post-Exertional Malaise.


Over time, I was able to tame it by learning to stop comparing my current self with my healthy self, but to accept my limits, discover what made my exhaustion worse, and hope for improvement in the future. This was difficult because I wanted instant improvement.


Therapy

I don't believe CFS is depression, but I sure think having it can cause depression. I agree with the results of a psychological test I took early on in my illness. They said I suffered from "a physical illness of unknown origin with secondary depression." In that case, "secondary" means "as a consequence of a physical illness."


The therapist showed me that what was obvious to me, my exhaustion and all the other odd symptoms, were NOT obvious to my family and friends. I was making assumptions that I shouldn't have.

She taught me communication techniques. She believed I was sick and, by that, validated my illness. She also encouraged me to write. I have a half a dozen full notebooks of my diaries from those dark days.


When I moved to Paris and finished school in 1998, I realized that the French economy had little, if anything, to offer me. Frustrated and blue, I started to take anti-depressants. If this were a perfect world, I wouldn't take them. If this were a perfect world, I wouldn't have CFS! If medication lowers my good moods, it raises my low moods. Overall, it raises the quality of life.


Doctors

I was sick for about two years before I really figured out how to work with a doctor. I was lucky enough to be treated for some time by a homeopathic doctor, who checked me for food allergies. By careful record keeping, we discovered that I was sensitive to soy, corn and wheat.


But his homeopathic remedies didn't have the effects I wanted, so I switched to Dr. Susan Levine in New York City. I gave her written copies of my health diary, which showed how long each of my relapses had lasted and what the major symptoms were. She helped me to apply for Social Security Disability.


I went through the whole disability process again five years later. At the time I was a half-time student. I explained my limitations to my doctor and to Social Security, which extended my benefits. For both applications to Social Security, I couldn't possibly cover all the relevant information during one office visit.

For the first application, a friend typed up my notes. For the second one, I typed them myself. My doctor was thus able to paint the complete picture of my situation.
 

In Conclusion


I still struggle with cycles of denial, acceptance, bargaining, etc. Also, in the past few years, I've come to realize that having a chronic illness doesn't prevent one from having to deal with the aches and pains associated with aging.


However, through pacing, resting, and getting help from my family, therapists, and doctors, I've found stability in my life. When I dance with the CFS dragon, I don't step on its feet nearly as often.