Experiments
with Exercise
By Bruce Campbell
(Note: People
with fibromyalgia and CFS often view exercise as a way to improve
fitness and control symptoms. This article, adapted from the online
booklet Recovery
from Chronic Fatigue Syndrome: One Person’s Story,
describes how reflecting on exercise can produce general insights
about coping with long-term illness.)
After having Chronic Fatigue Syndrome for
several months, I came to view living with my
illness as a series of experiments that I called being my own “CFS
scientist.” 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
I
wanted to exercise, both because I enjoy
exercise and because I thought that it would help reduce the part of my fatigue
that was caused by de-conditioning. But how much was safe? I decided to
experiment. 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.
The experience helped me understand the value of trying experiments and
of keeping simple records to find my limits. I then applied that
approach in other areas of my life to determine limits for activities
like driving, standing, doing laundry and housecleaning, time on the
computer, and time to go to bed. Every time I found a limit and began to
honor it, I gained more control over my CFS.
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.
Delayed
Reactions
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 a day or two.
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? I decided to
keep careful records of my activities and symptoms, correlating activity
level with subsequent increases or decreases in symptoms. Over time, I
discovered how long I engage in various types of activity without
triggering an increase in symptoms. Limiting my activity to amounts of
time I had learned were safe gave me a way to gain control, when I
couldn't trust my body's signals.
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 sometimes explained the extra 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 long hikes I had done
when healthy, 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.
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
Two
years after coming down with CFS, 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 I wrote in an article
on rest, I believe that scheduled rests were perhaps the single most
important thing I did to aid my recovery.
I
discovered how to 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 some more. It worked! 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.
Uneven
Recovery
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. 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 still could do were the
solution, as I explained in another article.
Conclusion
In
all these different ways, exercise was a good teacher. Through
reflecting on my experiences with walking, I learned a lot about how to
live with Chronic Fatigue Syndrome.
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