My
Life as a "CFS Scientist:"
Using Records to Gain Control
By Bruce Campbell
(Note: This
article is adapted from the online book Recovery
from Chronic Fatigue Syndrome: One Person’s Story.)
Looking
back, I believe that the few minutes a day I spent keeping health
records were one of the most important parts of my recovery from Chronic
Fatigue Syndrome. My logs helped me in at least three ways. First, they
showed me the connections between my actions and my symptoms, and, by
documenting the links, took a lot of the mystery out of the ups and
downs of my illness. Second, because reviewing my records was like
looking at myself in a mirror, the records held me accountable. And,
third, because they documented my successes, they were a source of
motivation.
Record keeping
was an integral part of my approach to living with CFS, so much so that I
came to call myself a “CFS scientist.” Early on, I realized that,
because
there were variations in my daily life, I could view my life as a series
of experiments. For example, I went to bed at
different times, had different length walks, spent varying amounts of
time with people, and so on. Just living my regular life I was
generating lots of “experimental data” in which my actions were the
“causes” and my symptoms were the “effects.” Then I recognized
that I could generate more data by deliberately varying my patterns and
activities. For example, I could walk varying distances and note the
effects on my symptoms. I knew that I wasn’t running a true
experiment. With only one subject, I couldn’t have a randomized
controlled trial, but I felt confident that I could learn a lot by
systematic self-observation.
Keeping
records was crucial to this process. I was confident that having
systematic notes about my life would enable me to see patterns and to
identify links between my actions and my symptoms. I experimented with a
variety of simple logs, each taking only a few minutes a day to
complete. I made sure the logs were easy to fill out, because I knew
that if they weren’t, I wouldn’t use them consistently. I wanted to
make it likely that the time spent logging would be rewarded by
insights. I also thought that if I made them too complicated, I
wouldn’t be able to make sense of all the data I collected. I wrote in
my logs daily, then usually spent some time every few weeks analyzing
the logs to look for patterns. Sometimes I went over my logs with a
friend.
Linking
Cause and Effect
The
log I used the most was similar to the Activity
Log, posted elsewhere on this site. I sought to understand the
fluctuations in my illness by linking events in my life with my
symptoms. The list of items that might be causes changed over time, but
included things like the amount of sleep and rest I got, my overall
activity level, exercise and stressors (both people and situations). For
“effect” I rated each day from “+2” (very good) to “-2”
(very bad). Sometimes I made two or three sets of ratings each day to
see whether there were patterns within a day. Then I sought to
understand what made my days different. Why were some days better than
others?
Studying
my records helped me to recognize fluctuations in symptoms by showing me
that my CFS 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.
I
also used my records to help me understand patterns over longer periods.
For example, looking at my records for the year at the end of 1998
enabled me to quickly identify the causes of my relapses. It took only a
little more time to develop a plan for avoiding them in the future. I
began my review by identifying all my relapses during the year. I found
eight. (I defined a relapse as symptoms so severe that I had to spend at
least one full day in bed.) Then I looked for common causes and
discovered that almost all the relapses were associated with either
having a short-term illness or travel.
Last,
I developed strategies to minimize the impact of each of these factors
in the future. To combat relapses triggered by secondary illnesses, I
decided to take two days of extra rest after the symptoms of the
secondary illness ended before returning to my normal activity level. To
minimize travel-related setbacks, I limited travel to a few hours’
driving distance from home, doubled my regular daily rest periods for a
few days before a trip, took two or three times as much rest as usual
while away, planned for extra rest after returning home, and took a ten-
to 15-minute rest for each two hours of driving. I think the two hours I
spent on that analysis was the most productive time in my experience
with CFS: I haven’t had a relapse since.
Logging
Shapes Behavior
I
found that my logs, in addition to being a record of my behavior, also
came to shape it. Sometimes, when I was tempted to think that increased
symptoms were just part of the illness, my records showed that I had
been more active than usual in the days before my symptoms increased.
Seeing the evidence in black and white helped me to stick to my pacing
routine. I could see how much better I felt when I was consistently
within my energy envelope and how my symptoms increased when I went
outside my limits. So my logging was also a way to hold myself
accountable.
A
student in one of our early groups took this principle even farther. She
kept an elaborate calendar with a color rating for each day. She used
green to note a minimal level of symptoms (“Go”). Yellow designated
an increased level of symptoms and meant “warning, time to cut back a
little.” Red meant “stop, time to cancel commitments and rest.”
Records
as Motivators
Logging
was also a good motivating tool. My records documented that some days
were better than others. Seeing this motivated me to search for what I
was doing that created good days so that I could increase their
frequency. I also used my records to chart my progress over time. At the
end of each month, I rated myself using a Rating
Scale. Seeing written evidence of improvement gave me
hope. It also motivated me to stick to my pacing routines. Each month, I
totaled up the number of good days I had. Wanting to expand the number
motivated me to be more consistent in staying within my energy envelope.
For
all these reasons, I found that the benefits from a few minutes of
record keeping a day were great. Even without a big grant from the NIH,
my CFS science produced big rewards.
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