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Spring 2002


Self Help and CFIDS
Part 1 of 2
By Bruce Campbell, PhD

Note: Shortly after I became ill with CFIDS, I read an article in The CFIDS Chronicle entitled, "Recovery from CFIDS." In it, Dean Anderson described his successful eight-year struggle with the illness. Turning away from medical treatments, he instead figured out what he could do to make himself better. Nearly five years have passed and I have improved greatly using a similar approach. I want to describe my own recovery in the hope that others may find encouragement in the power of self help. -BC

When I was diagnosed with CFIDS in November 1997, I had been sick for four months with a flu-like illness. During that period I gradually reduced my time at work to 15 hours per week, then stopped working entirely. Neither strategy reduced my symptoms. I functioned at about 25 percent of my pre-illness level.

Today I have returned to a nearly normal life. My improvement has been gradual but steady, about one or two percent a month. I now rate myself at about 90 percent. While I still have limits and experience mild symptoms at times, I have an activity level that is similar to others of my age. I don't know whether my improvement will last, but I am encouraged by the fact that my progress has been steady with no major setbacks.

Building a self-management strategy
Even before CFIDS, I had learned to ask myself two questions when facing a health problem: What help does the medical system offer? And how can I help myself? After getting my diagnosis, I read everything I could find about CFIDS. I learned that the medical resources were quite limited; there was no medical cure for CFIDS and no standard treatment. It seemed that the best a medical approach had to offer was modest symptom improvement, probably requiring a long period of experimentation.

On the other hand, it appeared that some people had success with a self-management approach. I was attracted to this option in part because of my professional experience before becoming ill. I had been a consultant to self-help programs at the Stanford University Medical School and seen some impressive results from people's participation in self-help groups for other chronic illnesses. That experience convinced me that how one lives with chronic illness can change its effects and may even change the course of illness.

Based on my research and my prior experience, I decided to forego experimenting with medical treatments and instead utilize exclusively a self-help approach. I felt confident that I could find many things that would help me improve.

This decision was not a rejection of medicine in general or of my doctor. I checked in with him monthly by phone to keep him apprised of my progress, and continued to see him for other medical problems.

Listing assets
I believe that all patients have resources that can help them cope with their illness. The resources vary from person to person. These were some of mine:

• I was fortunate to have a moderate case of CFIDS. Though significantly limited by the illness, I was better off than the average patient in the severity of my symptoms.
• My life circumstances were favorable. I was in my early 50s, old enough to have created a financial cushion for myself. I was not stressed by the financial pressures that many CFIDS patients face. I received understanding and support from my family and closest friends. They accepted my illness as real and agreed with my decision to pursue a self-management approach. I also lived alone. Although it could be frightening on the days when I was too sick to get to the grocery store, living alone gave me the freedom to live my life as I thought necessary for my recovery;
• My personality and disposition lent themselves to a self-help approach. I enjoy solitude, and have often used discipline and patience to achieve my goals;
• I had cancer in the 1970s that was treated successfully, so my life already included an experience of recovery from serious illness.

Accepting the illness
For more than a year after becoming sick, I wondered whether I should make recovery my goal. That's a hard standard to live with. I found having the goal of recovery condemned me to an emotional roller coaster, in which I was encouraged by my progress but devastated by the inevitable setbacks.

The dilemma helped me to understand the distinction between those things I could control and those I couldn't. I finally concluded that whether I recovered was out of my hands, but that there were many things I could do to improve my quality of life. By suspending expectations about recovery, I could focus on what I could do to make my life better.

I found inspiration in Dean Anderson's description of how he combined acceptance of being ill with hope for a better life. He described acceptance not as resignation, but rather "an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life." I adopted his formula as my own approach to CFIDS.

Coping strategies
Chronic illness touches many aspects of our lives: our ability to work, our moods, our relationships, our finances, our hopes and dreams, our sense of who we are. In response, I used a variety of self-management strategies. I will explain a couple of them in this article and then conclude with more in the next issue of the Chronicle.

Keeping records.
I was confident that making notes about my life would enable me to see patterns, to identify links between my actions and my symptoms. I experimented with a variety of journals or logs, most requiring only a few minutes a day to fill out. I was greatly rewarded by the effort.

Record keeping enabled me to recognize fluctuations in symptoms by showing me that my CFIDS was worse in the morning and better in the evening, and that the effects of exertion were cumulative during a week. Also, logging showed me the connection between standing and symptoms, documented how much exercise was safe, and showed me my vulnerability to stress.

Logging was also a good motivating tool. 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. At the end of each month, I rated myself using a 0-to-100 rating scale. Seeing written evidence of improvement gave me hope, motivating me to continue my self-management program.

Perhaps the most dramatic benefit of logging was the two hours I spent at the end of 1998 trying to understand the relapses I had experienced that year. Reviewing my daily logs, I found eight instances in which my symptoms had been so intense that I had spent at least one day in bed. Looking for common causes, I found that almost all of the relapses were associated either with travel or with having a secondary illness. I then developed strategies to minimize the effects of travel and other illnesses, including taking more rest at those times than usual. I believe the strategies were successful, as I have had no relapses since.

Minding the energy envelope.
To give my body a chance to recover, I had to accept living within the limits imposed by the illness. I was helped by the concept of the energy envelope. This is the idea that people with CFIDS have less energy than those who are healthy and that they can improve their quality of life by staying within the limits of their available energy.

For some time, I used this idea in a very general way. I would ask myself whether doing something would take me "outside the envelope" or whether I was living "inside the envelope." By reminding me of my limits, the concept of the envelope helped me gain some control over symptoms.

Then I decided to look at my limits in different areas of my life. I wondered how much sleep I needed at night, how much daytime rest, how much time I could safely spend on the computer, how long could I stand at one time before triggering symptoms, how far could I walk. Thinking of my energy envelope in terms of different aspects of my life led to a detailed understanding of my limits. I ended up with a list of about fifteen items. In addition to those just mentioned, I included activity limits (how long I could do various activities like driving, standing, housework, reading and spending time with people), stressors in my life, food sensitivities, sensitivity to light and noise and emotions. It took me at least a year to develop this more detailed understanding, but I felt rewarded all along the way because every insight I had helped me gain more control.

In the next issue: Getting off the roller coaster; finding support; managing stress; and handling emotions.

Bruce Campbell, PhD, created and directs the CFIDS/Fibromyalgia Self-Help program, which offers low-cost self-help courses over the Internet and other resources for people with CFIDS and fibromyalgia. For more information, visit www.CFIDSselfhelp.org. Prior to becoming ill, Campbell worked on self-help programs at the Stanford University Medical School.

Be a CFIDS scientist

While building my self-help strategy, I adopted the attitude that CFIDS had imposed severe and largely inflexible limits on me. To improve my quality of life, I had to find and adhere to those limits. If I was lucky, I might be able to extend the limits gradually through making small changes. I came to view living with CFIDS as a series of experiments that I called being my own "CFIDS scientist."

I learned a lot through my experiments - especially my attempts to exercise. Early on I was able to do only a fraction of what I could before becoming ill, walking 15 minutes to half an hour most days. Through experimenting with walking at different times of day, I discovered that exercising in the afternoon was much less likely to worsen symptoms. This led to a general realization that when I did something could be as important as how much. When I tried extending my walks, I observed that I sometimes felt fine during the walk but experienced strong symptoms afterwards or had to take a nap later in the day. That helped me to realize that the effects of activity might be delayed.

I was finally able to expand my exercise in a significant way when I incorporated pre-emptive rests into my walks. I would walk for 20 minutes, then sit down for a similar time, then walk some more. Planned rests also enabled me to begin walking again in areas with uphill stretches.

My progress was very slow. Often I extended the length of my walks by only one or two minutes every several weeks. Also, I backed off and returned to my previous length if I experienced increased symptoms. But the discipline and patience paid off over time. By extending my exercise very gradually as I could tolerate it, I have returned now to a level of exercise close to what I had before becoming ill.