By Bruce Campbell

When I became ill with CFIDS in 1997, I functioned at about 25% of my pre-illness level. Five years later, I consider myself recovered. I no longer experience symptoms of CFIDS and have an activity level comparable to that of other people of my age. I have even been able to return to hiking. On a recent trip to Yosemite, I hiked almost 90 miles in six days, at a speed comparable to my pace when I was 10 to 15 years younger.

My improvement has been gradual but steady, averaging one or two percent a month. I followed exclusively a self-help approach in my efforts to improve. In the first part of this article I described four elements of my self-management program. I discuss three more in this part.

Having Faith 

I believe that faith was an important part of my improvement. By that I am not referring to something religious, but rather to a belief that my body had an innate drive to reestablish good health. I thought I had two roles in support of my body: 1) to discover what conditions best supported my body’s recuperative powers, and 2) to live consistently in a way that allowed these powers to be expressed. I call this faith because I had to proceed with little or no reinforcement that I was doing the right thing. My progress was very slow and there were periods of several months when it was hard to see any improvement.

Pacing  

I came to believe that creating stability was one of the most helpful things I could do for my body. This idea developed in response to the frustration I experienced in my first several months with CFIDS, when my life was on a roller coaster. I rested when my symptoms were intense, then was overactive when the symptoms declined. Doing too much led to high symptoms again and the demoralizing cycle started over. I was living in response to my symptoms, which left me feeling my life was out of control.

The idea of pacing offered an alternative. Pacing meant finding the right balance of activity and rest, and applying that balance on an everyday basis. The key was to live a life that was planned, with a similar amount of activity and rest every day. Having a consistent level of activity made sense, but I resisted the idea of scheduling rest every day. It was hard to accept the idea that I would lie down voluntarily regardless of how I felt. I decided to try it by having a fifteen minute rest every afternoon. Much to my surprise, the rest helped, reducing my symptoms and making my life more stable. After a while I added a morning rest as well. I also experimented with how I structured my rests, finally defining rest as “lying down in a quiet place with my eyes closed.”

I found that taking these “pre-emptive rests,” as a friend called them, enabled me to reduce the time I spent in “recuperative rest” or resting in response to symptoms. The result was that my total rest time was reduced. Looking back, I think the two daily rests were the most important thing I did to aid my recovery. Resting on a planned schedule greatly stabilized my life, enabling me to get off the roller coaster and giving me a much greater sense of control. Seeing that there was something I could do that gave me some control boosted my confidence that I could bring the illness as a whole under control.

Building on the Positive

My daily record keeping ended with an overall rating for the day. My scale went from +2 if it was a very good day to -2 for a very bad one. It gave me hope to see that not all days were the same, that some were better than others. Having good days also was very motivating. I asked myself: what am I doing differently on those days and how can I do more of it? This was another way in which I reinforced for myself a belief that I could gain control over the illness. It also deepened my conviction that I could find things that improved my quality of life.

Controlling Stress

Early on I discovered that CFIDS made me very stress-sensitive. Any kind of conflict set off my symptoms and often things as simple as making decisions felt overwhelming. Even modest amounts of stress greatly intensified my symptoms, creating a feedback loop in which my symptoms and my response to them intensified one another. Once I realized how vulnerable to stress I had become, I decided that dealing with stress sensitivity had to be a big part of my effort to manage CFIDS.

My first reaction was to try various strategies for stress reduction. The most helpful proved to be a regular relaxation/meditation practice, which I included in my daily rests. Relaxing my mind while relaxing my body had a dramatic effect on my anxiety level, thus reducing my tendency to over-produce adrenalin. 

Stress avoidance proved to be even more helpful. I learned that I could prevent stress by avoiding those things that caused it. The most useful strategy in that regard was routine: living my life as much as I could according to a plan. Having a daily schedule of activity, rest, exercise and socializing at set times gave structure and predictability to my life. With routine I had less pressure, and fewer surprises and emotional shocks.

I also learned to identify stress triggers, those situations and even specific people that set off symptoms. I learned, for example, that I was vulnerable to sensory overload after observing how noisy situations quickly led to intense symptoms. I also observed that situations of conflict were much more stressful than before. I then tried to avoid or minimize these stress triggers.

Managing Emotions

I knew from my work at Stanford that strong emotions are normal reactions to having a chronic illness. Serious illness turns people’s lives upside down, upsetting their hopes and goals, and creating frustration and uncertainty. So I knew intellectually that managing emotions could be just as challenging as managing the physical aspects of the illness. I don’t think this background prepared me, however, for the strength of the feelings associated with CFIDS and their apparent connection with the physiology of the illness. I felt less in control of my emotions than at almost any time in my life.

I developed a number of strategies in response, all based on recognition that I was much more emotionally vulnerable than usual. First, I observed that the strength of my emotions was often associated with the strength of my physical symptoms, and that the strategies used to control symptoms also helped moderate my emotions. In particular, resting seemed to reduce the intensity of emotions as well as alleviating my fatigue and brain fog.  

Second, I observed that I had an exaggerated initial reaction to relapses, often seeing them as evidence I would never improve. So I learned to talk in reassuring tones to myself. I consoled myself by saying things like “you’ve always bounced back from other setbacks” or “remember how life looks better after you've rested.”

Third, I trained myself to mute my emotions after observing the toll that strong emotions took on me, whether positive or negative. It seemed that experiences that triggered the release of adrenalin led to an increase in symptoms. As a way to avoid symptoms, I tried to cultivate calmness and to construct a life that emphasized routine.

Creating New Meaning in Response to Loss  

My work at Stanford had convinced me that chronic illness was inherently depressing. What other reaction would you expect if a normal life was replaced with one that involved large amounts of suffering and great uncertainty about the future? But an even bigger challenge was coming to terms with loss. Having CFIDS stripped away most of what I viewed as myself. Because of CFIDS, I gave up work and volunteer commitments, let most relationships slide, lost my ability to be physically active, and replaced an optimistic view of my future with uncertainty.

I did two things to cope with loss. The first was to publicly acknowledge the loss. In a Christmas letter sent a year and a half after getting CFIDS, I wrote to friends that I had been living with a disease for which there was no standard treatment or cure. And I concluded: “I am sobered by the realization that it is highly unlikely that I will return to the level of functioning that I had before becoming ill and so probably will have to adjust to living a life with greater limits than before.” Even though I wrote to alert others to expect less of me in the future, I think the more profound effects were on me. Even though my prediction turned out to be wrong, the public declaration helped me recognize the extent of my loss and the possibility that it was permanent.

My other response to loss was to create new relationships and new meaning in my life. Within weeks of receiving my diagnosis, I joined two local support groups. The experience was especially useful for the friends I made. I found there is something powerfully healing about feeling understood, all the more so for a stigmatized disease that some don’t believe is real. Illness is isolating; feeling connected to others gave me a sense of belonging. Also, fellow patients were tremendous sources of information and perspective, helping me to understand CFIDS much more quickly than I could have on my own.

Because I stopped working and dropped out of my volunteer commitments shortly after becoming ill, fellow patients became perhaps my most important community. I think that served me well. I took CFIDS patients to be my peers, not healthy people. That meant that I measured myself in comparison to them, not to my peers from work or healthy friends. That comparison took a lot of pressure off.

A few months after receiving my diagnosis, I started a self-help class for myself and other patients I had met. Over time it has become the CFIDS/Fibromyalgia Self-Help program. Developing the program enabled me to find new meaning in response to the losses I had experienced due to the illness. By developing new goals and focusing on what I was still able to do, I found a way to feel useful even when previous roles had fallen away. 

Living a Disciplined Life

The final factor in my recovery strategy was discipline. By this I mean learning to live consistently within my energy envelope and extending my activity level gradually as permitted by the illness. Just as an alcoholic must learn to abstain from alcohol and a person controlling his weight must learn to live in a different way, I assumed that my ability to improve depended on my changing my habits so that I lived consistently in a way conducive to recovery.

This approach was summarized in an article in the CFIDS Chronicle by JoWynn Johns, a member of our first Internet class: “Support for Changing Our Lifestyle.” JoWynn wrote: 

[The] Self-Help Course provides the information and the structure needed to facilitate changing one's habits and routines---something that is hard for all of us. Not a prescription for what to do, the course is a process of discovering for ourselves what we uniquely need to change in our lifestyle. Just as Weight Watchers and Alcoholics Anonymous provide the information and structure people need to change their eating and drinking habits, this course provides what PWCs [people with CFIDS] need to change our daily routines and find a way of living that helps to reduce symptoms and that, in some cases, has led to significant recovery. 

Dean Anderson says much the same thing in the account of his recovery, also published in the CFIDS Chronicle. He believes that the key to his recovery was a certain kind of acceptance, different from resignation. It was “acceptance of the reality of illness and of the need to lead a different kind of life, perhaps for the rest of my life.” He went on to say that “the ‘effort’ required to recover from CFIDS is an exercise in discipline and hopefulness.” The discipline he believes is needed is the opposite of the discipline of striving. It is the discipline “to recognize and adhere to one’s known limitations and to follow a strict regimen without periodically lapsing.”

For me, learning to live consistently within my Energy Envelope required that I first find my limits, as described in section 3, and then honor them. I developed a number of strategies to help me stay inside my envelope and to handle "lapses." Perhaps the most useful was to visualize how I would feel if I went outside my envelope. Imagining the fatigue and brain fog provided a counterweight to the immediate pleasure I anticipate from doing something that took me beyond my limit.

Record-keeping also helped me live within my limits. Having written proof of the effects of my actions helped me to hold myself accountable for my actions. Records were a graphic and irrefutable way to prove to myself what doing too much did to me in terms of symptoms and the need for extra rest. Also, I used my health log as a positive motivator, helping me aim for more frequent no-symptom days. 

A third strategy was the use of routine. Having a regular schedule enabled me to avoid a lot of decision making. Instead of having to ask whether something was or was not within my envelope, I tried to stick to a schedule I knew was safe. A related idea is what I call having rules for specific situations. For example, during one period I found I could drive without intensifying symptoms if I took a 10-minute break every two hours.

Finally, I tried to be forgiving with myself. I didn’t always stay in my envelope. But,  instead of beating myself up for failing, I decided it was better to just to say "what can I learn from this experience" and move on.

This approach required a great deal of patience. As noted in the section on faith, I needed to feel confident that my approach would pay off in the long run. Although it was very difficult at times, I resisted the temptation to hope for a quick recovery and I took consolation in my steady progress, even if it was at a pace of one or two percent a month.

Summary

I began my journey of self-healing with an acceptance that my life had changed, perhaps forever and certainly for an extended period. I believed that to get better I would have to accept responsibility for finding things that would help me. I acknowledged that CFIDS imposed severe limits, and decided that living a disciplined life consistent with those limits offered the best chance of controlling symptoms and improving my quality of life. Finally, I had confidence that I could find things that would help me get better and committed myself to experimenting to find what worked.

My approach of using self-help exclusively was different from that taken by most patients. Under different circumstances, I might have combined a self-management approach with a medical one. 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 and prudent, focusing as they did on living within limits and extending those limits very gradually as allowed by the illness.

Your illness may be more or less severe than mine. Your life circumstances are likely to be different in one or more ways. You may decide that medications and other treatments can be helpful to you. But I hope you will also explore what you can do to help yourself.

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