Using Self-Help to Recover from CFIDS
By Bruce Campbell
(The following is an article published in the CFIDS Chronicle as a two-part series in Spring and Summer 2002. For an expanded version, see the two-part article Recovery from CFIDS: What Worked for Me. And for an account updated through 2020, see Recovery from Chronic Fatigue Syndrome: One Person's Story.)
When I received the diagnosis of 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 a week, then stopped working entirely. Neither strategy reduced my symptoms. I functioned at about 25% of my pre-illness level.
Today, four years later, I have returned to a nearly normal life. My improvement has been very gradual but steady, about one or two percent a month. I now rate myself at about 90% of my pre-CFIDS level and I am still improving.
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.
Setting a Self-Management Strategy
Before CFIDS, I had learned to ask myself two questions when facing a health problem:
- What help does the medical system offer?
- 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. I have not had a medical appointment for CFIDS since.
This decision does not imply 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. He was supportive of my approach to CFIDS.
Listing Assets
I believe that all patients have resources that can help them cope with their illness. The resources vary from person to person. Looking back, I can see several assets I possessed.
First, I was fortunate to have a moderate case of CFIDS. Though significantly limited by the illness, I believe I was somewhat better off than the average patient in the severity of my symptoms.
Second, my life circumstances were favorable. As a person in his early 50's, I was old enough to have created a financial cushion for myself, so that I was not stressed by the financial pressures that many CFIDS patients face. Also, 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. Finally, I lived alone. Although it could be frightening on the days when I was too sick to get to the grocery store three blocks away, living alone gave me the freedom to live my life as I thought necessary for my recovery.
Third, 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.
Lastly, I had a cancer in the 1970's that was treated successfully, so my life already included an experience of recovery from serious illness.
Accepting the Illness
For the first year or more that I was sick with CFIDS, I wondered whether I should make recovery my goal. Sometimes I thought I should, but that standard was hard 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 formulation as my own approach to CFIDS.
Using Multiple Coping Strategies
Chronic illness is comprehensive in its effects, touching many aspects of our lives: how much we can do, 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. Seven were particularly helpful.
1) 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 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 use 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, mostly taking more rest than usual at those times. I believe the strategies were successful, as I have had no relapses since.
2) Finding Limits: 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 when 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 asked myself what were 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 as shown in this article.
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.
3) Pacing: Rest and Routine
In my first several months with CFIDS, I 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 to recover from overdoing. The result was that my total rest time was reduced. Looking back, I think the two daily rests were the most important technique I used 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.
4) Trying Experiments & Making Small Changes
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.
Then, 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 fifteen 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 lead to higher symptoms.
The realization 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 experience 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 I 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. In Fall, 2001, I had a four and a half day hiking trip in which I walked 60 miles.
5) Getting Support and Helping Others
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. 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 ME/CFS & Fibromyalgia Self-Help program.)
Even though I didn't realize it at the time, leading the class helped me deal with one of the greatest challenges of chronic illness: finding new meaning in response to massive loss. 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.
6) Controlling Stress
I was surprised at how easily I was upset by stress. 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.
7) 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 while 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 a Zen-like calmness and to construct a life that emphasized routine.
The Power of Self-Help
My approach to CFIDS was very similar to Dean Anderson's. I began with an acceptance that my life had changed, perhaps forever and certainly for an extended period of time.
Second, I acknowledged that my illness imposed limits on me, and decided that living a disciplined life consistent with those limits offered the best chance of controlling symptoms and improving my quality of life.
Third, 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 most of my lost 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.
I hope my experience, in combination with that of Dean Anderson, will suggest to other people with CFIDS that attitude and behavior can have powerful effects on health.
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