19. What Worked for Me
CFS changed my life, imposing severe limits and bringing great uncertainty. In contrast to prior illnesses, it was not a temporary interruption of my life, but rather the central fact around which my life revolved for several years.
Given the limited medical resources available for treating CFS, I concluded that my best chance for getting better was to rely on myself, accepting responsibility for finding things that would help me and then, step by step, adopting them.
My approach combined two elements which may seem in conflict: acceptance and hope. Acceptance did not mean resignation, but rather a recognition that my life had changed and that CFS forced me to live a different and more limited life, for an extended period of time and perhaps for the rest of my life. I believed that listening to my body and responding to its needs gave me the best chance for improvement. Also, I believed that I could exercise some control over my symptoms, but concluded that whether or not I recovered was out of my hands.
In addition to acceptance, I had hope. I was confident that through changing my daily habits and routines I could find things to help me feel better. I believed that I could reduce my discomfort, regain some control over my life and reduce uncertainty. I did not expect a quick solution. Rather, I recognized that self-management was a way of life that could bring improvement, but that change would be gradual and involve lots of effort.
I built my approach to CFS on six principles.
1) Using Multiple Strategies: Because I had several symptoms and because CFS affected so many parts of my life, I needed a variety of coping strategies. Acknowledging that there was no magic pill or single solution, I realized I would have to think comprehensively about my life and use many strategies.
2) Experimentation: I believed I could learn from my experience, gradually becoming more skillful in managing my illness. I assumed that this approach would require discipline and patience, and that some of my experiments would fail. But I felt confident that I could improve my skills over time and that, in any case, there was no better alternative.
3) Pacing: Recognizing that CFS had imposed severe limits on me and that how I lived my life could make my symptoms better or worse, I came to believe that defining my limits in detail and living consistently within them offered the best chance for improvement. This meant finding a sustainable level of activity and making appropriate use of rest on a daily basis. Pacing was the heart of my recovery program, providing a path to escape push and crash, and thereby avoid the always-out-of-proportion intensification of symptoms called Post-Exertional Malaise.
4) Controlling Stress: Because my illness both increased the stress in my life and magnified the effects of stress, I made managing stress a major focus. I used relaxation and other techniques to reduce stress and also learned how to control stress by avoiding stressful situations. Managing stress was the second most important part of my recovery program.
5) Addressing Emotions and Relationships: I acknowledged the powerful feelings triggered by being ill and adopted strategies to combat them. Also, I found that support, especially the support offered by fellow patients, was crucial to living well with CFS.
6) Building a New Life: Another central challenge was coming to terms with loss, finding a way to bring new meaning to my life when so much had been taken away. After much struggle, I decided that while I was unlikely to restore my old life, I could build a new one in its place. Creating and leading the self-help program was a central part of my response.
My use of self-management alone, without medications, was different from that taken by most people with CFS. Under different circumstances, I might have combined self-management with a medical approach. But self-help served me well, enabling me to regain my health gradually over a period of four years, using techniques I believed were safe, prudent and effective, focusing as they did on living within limits and extending those limits very gradually, as allowed by my body.
My approach reminds me of the message to patients from CFS/FM specialist Dr. Charles Lapp of the Hunter-Hopkins clinic on the website we created together. He writes:
Your doctor can help you cope with CFS/FM, but your success in regaining control will likely depend more on what you do than on anything a doctor does for you.
Medical treatments can help alleviate the symptoms of CFS/FM and further reduce suffering by treating other medical problems, but the key to recovery in CFS/FM is acceptance of the illness and adaptation to it by means of lifestyle changes.
If you adopt [this approach] –which will require discipline, courage and lots of patience– you can overcome the CFS/FM dragon. You can regain control, instead of your condition controlling you!