I decided to begin by developing a strategy to deal with fatigue, my most persistent and disruptive symptom.
I remembered from my work at Stanford that fatigue could have multiple causes, each of which might be addressed by different strategies. I identified eight possible causes for my fatigue besides my illness.
Activity level seemed the most crucial to me. There was an obvious relationship between the number of hours a day I was active and my fatigue, though the effects were sometimes delayed a day or two. If I was active for more than about four hours in a day, I later experienced elevated fatigue. Rest produced a reduction in my exhaustion. Ironically, I found hope in this push and crash pattern. If the connection between activity and fatigue was so direct, then I might be able to gain some control if I found a level of activity that my body could tolerate. (For more, see Chapters 7 and 8 on the energy envelope and pacing.)
The other factor that seemed especially promising was inactivity. I knew that highly-trained athletes become deconditioned if they stop exercising for even a brief time, so I was sure that part of my fatigue was due to my lower activity level. If my aerobic capacity had diminished, then I would become fatigued more easily by activity. I thought the way to fight this was through exercise. But how much? If I trained too hard, I would intensify my symptoms.
My solution was to experiment to find the length and intensity of exercise that would produce an aerobic workout without increasing my symptoms either during my workout or later. Initially, that level was about 20 minutes of walking a day at a pace that raised my heart rate to 90 to 95 beats per minute. I found that by staying within those limits I could recondition myself to some degree, thereby reducing inactivity as a source of fatigue. (For more on my experiments with exercise, see Chapter 11.)
Improving my sleep also seemed worth pursuing. I knew from other patients that sleep was often nonrestorative for people with CFS, but I thought I could help myself to some degree by maintaining good sleep-related habits, often called sleep hygiene. My reasoning was that while CFS might be the major reason for nonrestorative sleep and not directly responsive to quick fixes, I could probably reduce my morning sluggishness if I maintained regular hours and avoided things like late nights on the computer. So I made it a rule to turn off the TV and stop using the computer at 9 p.m.
The final factor that I thought might be affecting my fatigue was pain. To the extent that I responded to pain by tensing up, I might increase my fatigue. Using relaxation was helpful. (See the Chapter 9 on rest.)
In the first year or so, I focused my efforts on those four areas. Because it took me some time to recognize the effects of stress and emotions, I addressed them later.
Lastly, I assumed that the final two factors on my list of possible causes of fatigue didn't apply to me. Since I had decided not to take medications, I was not worried about fatigue due to drugs. And I thought my nutrition was probably adequate, because I had eaten a low-fat, mostly vegetarian diet for many years and I hadn't experienced intestinal symptoms. I didn't rule out looking at my diet, but I decided to focus my initial efforts elsewhere.
In thinking about fatigue, I had discovered an important principle that I was able to use many times. Because a symptom can have multiple causes, it�s often helpful to use multiple strategies in response.
Additional Strategies for Other Symptoms?
Once I developed my approach for addressing fatigue, I asked myself whether I needed additional strategies for my other major symptoms. I recognized that sometimes a person is prescribed more than one medication if he has multiple symptoms, so I wondered whether I needed separate strategies for brain fog and pain.
After observing the effects of my efforts to control fatigue, I concluded that all three symptoms were responsive to the same strategies, so that, by and large, I didn�t need separate strategies for each symptom. Taking regular rests, limiting my activity level, and reducing the stress in my life worked on all three symptoms and also seemed to improve my mood as well. Further, the presence of any of my symptoms was a sign that I needed to cut back. For example, if I felt cranky or depressed, I took it as a sign I was outside my energy envelope and needed rest.
Comprehensive, Two-Way Effects
There were two other reasons for adopting multiple coping strategies, in addition to the fact that each symptom might have multiple causes. First, the effects of CFS were comprehensive, touching many aspects of my life: my ability to work, my moods, my finances, my relationships, my hopes and dreams for the future, and my sense of who I was as a person. Second, there was an interaction between my illness and these many factors; my illness was affected by many other things and in turn affected them. I have tried to suggest something of this complexity in the diagram below, with arrows pointing both directions.
One obvious interaction was between activity and symptoms. My CFS limited my activity level (arrow pointing out: illness limits activity). But the opposite was also true; if I tried to do more than my limits allowed, I experienced higher symptoms (arrow pointing in).
I also observed other relationships. Although it took me a while to recognize, I eventually saw a relationship between worry and my symptoms. I noticed that if I reacted to an increase in symptoms by feeling anxious, that reaction would make the symptoms even worse. I dealt with this vicious spiral using several techniques. Probably the most helpful was the combination of rest and meditation. Just lying down helped me to calm down. Beyond that, however, doing a meditation procedure during my rests helped even more. I tried various techniques, finding that I worked well with verbal descriptions but not with imagery. I eventually developed a technique of my own using counting of the breath.
I also found that I could calm myself down with reassuring words. When an intensification of symptoms led to thoughts like "I bet this is a big relapse starting" or "I'll never get any better," I countered with phrases like "Remember how things always look worse when your symptoms are bad" or "Think about how you've improved in the last six months."
I was surprised to find that the relationship between emotions and symptoms applied even to positive emotions. I remember a time when I was moved to tears by the heartfelt comments of people in a group I led. I was confused by my response, which was a combination of joy and brain fog. The fog dissipated gradually on the ride home. (Thankfully, someone else was driving.) That experience helped me to realize that any experience, whether positive or negative, that produced adrenaline would trigger brain fog. The same principle applied in situations that made me anxious: any experience to which my body responded caused muddled thinking.
I think the relationships between illness and other aspects of our lives are probably even more intricate than the diagram suggests. Sometimes one factor from the diagram above can affect another factor, which in turn affects symptoms. For example, illness makes relationships more difficult. Not feeling understood or worry that you�ll be abandoned creates stress, which in turn can exacerbate symptoms.
I sometimes wished for a simple solution, an alternative to my behavioral approach, which was so complex. But I decided that I needed multiple strategies because I had several symptoms, my symptoms had several causes, and CFS affected so many parts of my life. From that perspective, my challenge was to understand all the inter-relationships and to find those things that would produce the greatest effect on my symptoms.