1. Keys to Recovery
Before I tell you my story, here’s an overview of the five keys to my recovery.
The single most important part of my program for improvement was pacing, which means finding and then learning to live within the limits imposed by CFS.
Why is pacing so important with CFS? Because the way we live our lives with CFS has a big effect on our symptoms. If we go outside our limits, we experience an intensification of symptoms called Post-Exertional Malaise or PEM. The key fact about PEM is that it is always out of proportion to the overdoing. Even the smallest transgression can result in an extended period of time in bed.
When I realized that how I lived had a big effect on my symptoms, my first reaction was to feel devastated: I had unknowingly been creating a lot of my own suffering.
My next thought, however, was more hopeful and gave me the path that led to my recovery. I told myself, “If the way I lead my life has such a direct effect on my symptoms, this effect should work in both directions. If living one way increases symptoms and leaves me feeling that my life is out of control, living a different way should reduce my symptoms and might help me regain control.”
So I set out to find that way. You’ll read about what I learned in upcoming chapters. For now, let me underscore the importance of self-management in general and pacing in particular by quoting from well-known CFS specialist Dr. Charles Lapp: “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.”
2) Stress Management
It took me more than a year to recognize my second key to recovery: managing stress. Stress presents a double challenge to people with CFS. First, the condition adds new sources of stress beyond those we had when we were healthy, such as the ongoing discomfort of symptoms, uncertainty about the future, and financial pressure. In addition, CFS makes us more vulnerable to stress; the effects of a given level of stress are greater than they would be for a healthy person.
In sum, a double whammy: your stresses are multiplied by CFS and stress takes a heavier toll if you have CFS.
As I’ll explain in a chapter below, I discovered some simple principles for stress management. The first was to recognize that because there are so many causes of stress and the effects of stress are so strong, I was best served by using a variety of strategies to manage it. The second was to think in terms of two categories: stress reduction and stress avoidance. Stress reduction included using relaxation techniques and getting out of the house for a walk every day. The second approach meant taking measures to use order and routine to avoid stressful circumstances.
3) Acceptance with a Fighting Spirit
I quickly discovered that there was no cure for CFS and spontaneous recovery seemed rare, so I struggled with what attitude I should adopt. I sought one that included both a realistic acceptance that my life had changed and hope for improvement. I settled on the formulation “acceptance with a fighting spirit.”
Acceptance meant that I acknowledged that CFS was a long-term condition. Instead of living as if I were well or searching for a miracle cure to restore me to health, I acknowledged that my life had changed for an extended period of time, possibly for the rest of my life. At the same time, I had the conviction that I could find ways to feel better, even if I was not able to restore my old life.
4) Experimentation & Record Keeping
I came to view living with CFS as a series of experiments that I called being my own “CFS scientist.” Like a scientist, I formulated hypotheses (“I can walk 20 minutes a day without increasing my symptoms”), then gathered evidence by testing the hypothesis (what effects do I experience from walking that long, both during and after). I hoped that some experiments would work, but I was sure that others wouldn’t. In any case, I believed I could learn from my experience.
Keeping records was crucial to being a CFS scientist. Having systematic notes enabled me to see patterns and to identify links between my actions and my symptoms. I used a variety of logs, most requiring only a few minutes a day to fill out. There is a chapter on logging below and you can find logging forms and instructions on keeping records on the Logs, Forms and Worksheets page on the website of the self-help program for CFS and fibromyalgia that I founded. (Note: All my work for the program has been as a volunteer. Just as this site is free, I am not paid for my work at the program.)
Logging was also a good tool for motivation. After noticing that some days were better than others, I focused on trying to find what I was doing that created good days so I could expand them. I also used my records to chart my progress over time. Seeing written evidence of improvement reinforced my sense of hope.
Support from others was the final key. My doctor was understanding, and my family and friends were supportive, so I didn’t have to fight many of the battles others with CFS have.
In addition, I experienced wonderful support from others with CFS. First in local support groups and later in the self-help program I created, being part of these groups gave me a sense of being connected to others at a time of confusion and isolation. Also, fellow patients were tremendous sources of information, experience and perspective. Their successes were a source of both strategies and inspiration. The self-help program, with its emphasis on learning how to manage CFS, enabled me to surround myself with positive people who were also working actively to improve.
With that overview, we turn in the next chapter to how I made the decision to use self-help to treat CFS.