Recovery from Chronic Fatigue Syndrome
by Bruce Campbell

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Table of Contents

      Introduction
  1: What Do
      I Do?
  2: Multiple
      Strategies
  3: My Unique
      Situation
  4: Is Recovery
      Realistic?

  5: Loss

  6: Self-Help
      Program
  7: Energy
      Envelope
  8: Pacing
  9: Rest
10: Records
11: Exercise
12: Relapses
13: Stress
14: Emotions
15: Support
16: Recovery
17: Lessons
18: What About You?
 

Bruce Campbell's CFIDS/FM Self-Help Program


3: Understanding My Unique Situation

Each person's experience of CFS is different. The pattern and severity of symptoms vary from one person to another, and each has his own individual life circumstances. Each of these factors can either help promote improvement or make it more difficult. I was very fortunate. My situation was favorable in several ways, each of which supported my efforts to improve.

First, I had a moderate case of CFS. Though significantly limited by the illness, I was slightly better off at my worst than the average patient I have known in the severity of my symptoms. Because of that, I had a shorter road to recovery than those who were more severely affected.

Another aspect of my medical situation was also favorable. I had only CFS, uncomplicated by other illnesses. Since 1997, I have known several thousand people with CFS and fibromyalgia, most of them through the self-help course I will describe in Chapter 6. The majority have both CFS and fibromyalgia, or one of them in combination with one or more other long-term conditions, such as allergies, arthritis, food and chemical sensitivities, migraine headaches, orthostatic problems, sleep disorders, and thyroid problems. I was lucky to have only one condition to manage.

In addition to these aspects of my medical situation, several aspects of my life circumstances were favorable. The first was my finances. I was in my early 50's when I got sick, old enough to have created a financial cushion for myself. As someone who had been self-employed, I had set aside money for a "rainy day," savings I could draw on when I became ill. Also, as a single person with no children, I was financially responsible only for myself. The result of this combination of financial circumstances was that I was not stressed by the money pressures that many CFS patients face. Having financial reserves made it easier to do something that my health was forcing on me, namely to quit work and focus on getting better.

Third, my life was very stable during the first several years of my illness, helping me to avoid stresses faced by some patients whose lives are more turbulent. My financial position enabled me to continue living in my home of 20 years. My most important relationships were stable for some time. The timing of my illness was also fortunate. In the summer of my fourth year with CFS, my mother was hospitalized twice for major surgery and my father died unexpectedly. As their only child, but having no spouse or children myself, I was their primary caregiver. I had improved enough by then that the stress from these events did not cause a relapse, as it might have a couple of years earlier.

Also, I received understanding and support from my family, doctor and friends. They all accepted my illness as real and agreed with my decision to pursue a self-management approach. Their acceptance told me I wasn't alone in my efforts to improve. Again, I was lucky. Many people with CFS struggle to find understanding and support.

Another positive element in my life situation was that I lived alone. Although I felt frightened on the days when I was too sick to get to the grocery store, living alone gave me the freedom to organize my life in the way I believed would maximize my chances for improvement. I did not have to coordinate my daily life with that of others nor did I have to balance daily responsibilities to others with my desire for improvement.

Finally, I was lucky in two other respects. First, I adopted a self-help strategy very early. I have met many patients who tried to ignore their illness, sometimes struggling on with their old lives for years, until they collapsed. I took a different approach. As my symptoms worsened in the first few months I was ill, I reduced my time at work in several steps, then stopped working entirely. As I learned much later, listening to my body and giving it what it needed was perhaps the most effective strategy possible for responding to CFS, but I did not know that when I made my decision.

Lastly, I had a case of CFS that allowed for recovery. I have known many patients since 1997 and have observed many different patterns of improvement. Some patients are able to control symptoms by making lifestyle adjustments, but don't improve their activity level or do so only modestly. Their cases of CFS seem to place a ceiling on how much they can increase their functional level. My situation seems to be different and reminds me of the experience of gay men in San Francisco during the 1980s. Some never became ill with HIV or AIDS, even though their sexual practices were similar to those of other gay men. After ten or fifteen years, researchers found these disease-free men had a difference in their immune systems that enabled them to avoid infection. Perhaps there is something in my system that enabled me to bounce back from CFS.

In all the ways just described, my situation supported my efforts to improve. I had only CFS, uncomplicated by other medical problems. My illness was moderate in comparison to that of some people with CFS and my life circumstances were much less stressful. By chance, I adopted an approach that was well suited to my illness. And I had a case of CFS that permitted recovery. I had no control over most of these factors, but I was grateful for them. The combination of these fortuitous circumstances and my efforts at self-management allowed for recovery.