The ideas of the energy envelope and pacing gave me hope that I could improve my quality of life if I could find and honor the limits that illness had imposed on me. I also hoped that I might be able to extend those limits gradually by making small changes. Because I didn't know my limits when I started and did not know what would help, everything I did was an experiment.
One area of experimentation was exercise. I tried different forms of exercise and different lengths of time in order to determine how much exercise was both safe and helpful. In the process, I learned many lessons about my illness in general.
Finding Exercise Limits
Early on I was able to walk about 20 minutes or so a day, with some days missed because of severe symptoms. This represented a big contrast to my exercise before becoming sick, when I took long hiking trips on which I walked an average of 15 to 17 miles a day.
I hoped to expand the length of time I exercised, both because I enjoy exercise and because I thought that exercising would help reduce the fatigue due to de-conditioning. But how much exercise could I tolerate without making my symptoms worse? I tried walking for different lengths of time and at different speeds, keeping notes of how I felt both during and after exercise. I found that if I walked for about 20 minutes at a speed that pushed my heart rate up to but not beyond 95 beats per minute, I could get some aerobic value without making my symptoms worse.
Time of Day
Through experimenting with walking at different times of day, I discovered that exercising in the afternoon was much less likely to lead to a higher level of symptoms than exercise in the morning. If I walked in the morning, 20 minutes was likely to tire me out, but the same amount done in the afternoon did not produce much if any increase in my symptoms. So one lesson I learned from experimenting with exercise was that when I did it was as important as how much I did.
This realization led me to ask whether this was true generally. I found that my illness had a pattern. I often woke up feeling tired, no matter how many hours I slept. My symptoms were generally at their peak in the morning, but I had a period of several hours from mid-afternoon through mid-evening when they decreased. I found consolation in this insight. If I could get through the morning, I knew I had some good hours coming. Also, if I had something important to do, it was better to schedule it in the afternoon.
There were days when I felt so good during my walk that I decided to extend it beyond my usual 20 minutes. Sometimes I went as long as 40 minutes, without any increase in symptoms while I was walking. I soon realized, however, that when I walked longer than usual I had a higher level of symptoms later that day or even the next day.
The realization that the effects of exercise might be delayed prompted me to ask whether this was true of activity in general. After some record keeping, I concluded that it was and, more disturbingly, that I could not trust the signals sent from my body. As a healthy person, I used fatigue and other clues from my body as a way to tell me to slow down or take a rest. But with CFS, the signal was delayed, sometimes by hours or even days.
So I was faced with the question: how can I control my symptoms if I can't trust my body to warn me when I am overdoing it? As I described in the last chapter, my solution was to keep careful records of my activities and symptoms, correlating activity level with subsequent increases or decreases in symptoms. Over time, I discovered my "safe" activity level. But this was a process of analysis and deduction, not awareness of my body in "real time." I found I could control my symptoms by staying within those limits.
All Activity is Exercise
On some days, I felt quite tired even when I walked my usual amount. I wondered whether it might be due to poor sleep the night before or because of stress. While those factors explained some of my fatigue, I decided that a more frequent explanation was my total activity level. Checking my records, I discovered that times of increased symptoms were often associated with days I did laundry, housecleaning, grocery shopping, cooking or some combination of those activities. All of them required that I be physically active while standing. This led me to state a rule for myself: "All physical activity is exercise." My energy level was so low when I first got CFS (about one quarter of my pre-illness level) that I needed to be aware of all my activity. For several years, I noted household chores and shopping in the "exercise" column of my health log.
The Body is in Control
It felt unfair to be able to walk 20 minutes or so and feel fine afterwards, but to have to spend an hour in bed if I walked 40 minutes. The difference was so small in comparison to the length of my hikes in the past that it seemed I was being punished disproportionately by CFS for going only a little outside my limit. Painful as it was to realize how little 'cushion' I had, how tight my limits were, the discovery led to a recognition that there was no way I could argue with my illness or persuade it that it was being unfair to me. I learned that I couldn't expect a "free day" if I had been good for a week. I saw my illness as harsh and unyielding, a force that could not be tricked or persuaded.
The recognition that my body was in control, not me, was a crucial part of acceptance: like it or not, that was my situation. In other circumstances earlier in my life, I might have been able to ignore my body by staying up late and just pushing through to finish a project. But CFS had reversed my relationship to my body: now the body was in charge.
Exercise and Rest
I was able to extend the length of my walks only slightly in the first several years I was sick. My practice was to make small extensions (no more than a few minutes at a time), but to return to my previous level if symptoms increased. I made little progress. After two years, I was walking about a half hour a day, not much different from the 20 minutes or so when I was first sick.
I was finally able to expand my exercise in a significant way when I incorporated rests into my walks. In retrospect, I am surprised that it took me so long to recognize that rests could help my exercise endurance, given my use of daily rests at home. As explained in Chapter 9, I believe that scheduled rests were perhaps the single most important strategy I used to aid my recovery.
I discovered how I could apply rest to exercise when I went walking one day with another CFS patient, a person who had a more severe case than mine. She stopped frequently, about once every five minutes. I noticed that I wasn't at all tired at the end of our hour-long walk, and asked myself whether I might be able to extend the length of my walks by incorporating rest into them.
So I tried an experiment. The next day I walked for 20 minutes, then sat on a bench for a 20 minutes, then walked another 20 minutes with no increase in symptoms. What a revelation! I was able to walk significantly farther than before by including a long rest in the middle. This was a big psychological breakthrough, as it opened the possibility of longer walks without increases in symptoms. I was able to extend gradually the distance I could walk, as long as I alternated periods of walking with equally long periods of rest. Planned rests during exercise also enabled me to begin walking again in areas with uphill stretches.
Three years after becoming ill, I was able to walk on occasion as much as seven miles, a big improvement on 20 minutes a day but roughly a third of what I could do before CFS. I felt discouraged when I compared myself to the past, but was helped by noting that my recovery overall put me back to about 75% of normal. The experience helped me to see that my recovery was uneven, better in some areas than in others, with exercise tolerance lagging the most.
Exercise and Loss
The final lesson that exercise taught me was about the power of emotions in CFS. I took most of my walks along a part of San Francisco Bay close to my home. For a while, I looked longingly up at the mountains I used to hike in and wondered whether I would ever be able to walk there again, on trails with elevation gain and for times longer than 20 minutes or half an hour. I found it so painful to look at the mountains that I forced myself to keep my gaze on the Bay.
The strong emotions triggered by looking at nearby mountains helped me to realize how big a part loss played in my experience of CFS. Acknowledging loss and focusing on what I could still do were the solution, as I explained in Chapter 5.
Back to Normal and Beyond
My discipline and patience paid off over time. On a trip to the mountains in my fourth year of illness, I took a hike of 15 miles. The next year, I had a trip on which I averaged almost 15 miles a day over four days. The year after that, I hiked about 90 miles in six days, walking at a speed comparable to that on similar trips when I was 10 to 15 years younger. Late in 2003, I had a trip on which I was able to walk even greater distances than before I became ill: 18 miles a day. To celebrate my 65th birthday in 2009, I hiked 162 miles in 12 days and I did a similar trip when I turned 70. By extending my exercise very gradually, as allowed by my body, I was able to return to a level of exercise equivalent to or perhaps even better than my pre-illness level.