Recovery
from Chronic Fatigue Syndrome
Controlling
Relapses
By Bruce Campbell
(Article adapted from the online
booklet "Recovery from
Chronic Fatigue Syndrome: One Person’ s Story”.)
No matter how
consistently I lived within my envelope in the first two years I was
ill, I would periodically find myself back in bed with symptoms that
were so intense that I couldn’t do anything but pull the shades and
hope for a better day. These relapses, which usually lasted from one to
three days, were greatly demoralizing as well as painful, mocking my
attempts to gain some control and filling me with the worry that I would
slide permanently downhill and become bedridden. Especially if I had
experienced consistently low symptoms for a while, these setbacks
created the frightening thought that perhaps improvement wasn’t
possible after all. Relapses represented perhaps the greatest
psychological challenge I faced from CFS. They were so frequent and so
devastating that I decided that having strategies to combat them had to
be an important part of my overall strategy.
Minimizing Setbacks
The first challenge was
to determine what I could do to reduce the length and severity of my
relapses. The number one answer was to rest. Staying in bed until I felt
better was the quickest and surest was to improve. Stating that obvious
truth to myself was helpful because it gave me permission to acknowledge
that at times I was powerless over my illness and the best strategy was
to give in to it.
I also found that what I
told myself during a relapse was important. Lying in bed for hours on
end, many negative thoughts would swirl through my head, things like “you’ll
never get better” or “you have no control over your illness.” Two
strategies that were helpful at these times were to speak reassuringly
to myself and to connect with other people. Knowing that worry made
relapses worse and that relaxing helped me recover, I spoke consolingly
to myself, saying things like “you’ve recovered from all the other
relapses, so just relax” or “you’ve been doing well lately, this
is just a temporary interruption of your progress.” And I reasoned
with myself, saying things like “all your previous setbacks have
responded to rest, so this one will probably end too.” I also found
talking to other people on the phone helpful in calming me down. We didn’t
even have to talk about my relapse or even about me. I think just having
a sense of connection with another person was reassuring and also
listening to someone else talk about themselves distracted me from my
symptoms and worries.
I observed that often a
relapse would have two parts. After resting for a day or two, I would
feel somewhat better, but then the relapse would resume. Either I was
too eager to return to my normal activity level or my body was giving me
misleading signals about my recovery. In any case, the strategy I
developed to avoid a “double dip” was to return to my normal
activity level gradually. If I took more than my usual amount of rest
for a day or two after I thought I was OK, I could avoid slipping back
into a relapse.
Taking extra rest was
also useful for less severe setbacks, ones in which my symptoms were
higher than normal but not so severe that I was forced to go to bed. My
longest setback occurred two years after I became sick, when I had gum
surgery. I recovered partially in a week or so, but my symptoms were
more severe than usual even three weeks after the surgery. I responded
by doubling my usual amount of rest, then tripling it, finally getting
up to six times my usual amount: three hours a day in bed. After only
two days of three hours rest a day, my symptoms returned to their
pre-surgery level. The experience taught me that often the most useful
action I could take to control symptoms was to have additional rest,
increasing it incrementally until I found an amount that enabled me to
reduce symptoms.
Another strategy I used
to minimize relapses was to “give in” as soon as the first symptoms
appeared rather than trying to push through them. By doing this, I found
I could stop a minor relapse in its tracks. I stumbled upon this
strategy one day when I was cooking chili. After standing at the stove
for 45 minutes, I suddenly felt tired and lightheaded. My first thought
was: “If I can just work for another 10 minutes, I can finish this and
then go rest.” But, remembering how many times such an approach had
led to several hours’ rest, I decided to turn off the heat under the
chili and lie down. After about 15 minutes, I felt OK and returned to
finish the cooking. I needed no more rest during the remainder of the
day. I was able to use this strategy many times, especially in
combination with meditation. When I felt increased brain fog, for
example, I found I could eliminate it if I could lie down and get into a
deep relaxation for five or ten minutes.
Prevention
Finding ways to reduce
the length and severity of setbacks was good, but I also wanted to know
what could I do to prevent them. I decided that to gain control over my
setbacks, I would assume that I caused all of them. This was a high
standard, especially because one of the hallmarks of chronic illness is
symptoms that wax and wane for no known reason. But I wanted to hold
myself accountable. This assumption led to many helpful discoveries. By
avoiding those things that created relapses, I was able to smooth out my
life considerably, reducing both the frequency and severity of relapses,
and eventually eliminating them. Believing I caused my relapses gave me
hope that if I could change how I lived, I could bring setbacks under my
control.
I explain in the chapter
on keeping
records how I used my logs to identify the two causes of my relapses
(secondary illnesses and travel), and then developed strategies to
prevent future setbacks. By taking extra rest for several days after the
symptoms of a secondary illness had ended, I eliminated relapses
triggered by colds and other short-term illnesses. I used several
strategies to minimize travel-related setbacks. First, I limited my
travel to destinations that were only a few hours’ driving distance
from home.
Second, I scheduled extra
rest before, during and after my trips. Third, I added a ten to 15
minute rest stop for every two hours of driving. Initially I resented
having to give in to my illness so much, but then I told myself that by
giving in a little I could have a good trip. Being two-thirds as active
as a healthy person was much better than spending my whole vacation in
bed, which had happened on a number of trips before I adopted these
strategies.
Another travel-related
strategy was to plan my trips in great detail, especially how much
activity I would have. Making a commitment to myself to stay within a
safe activity level helped me resist the temptation to do too much when
on the road. Also, I told my travel companions of my limits ahead of
time and they helped keep honor my plans.
Lastly, I sometimes
adopted a compromise between strict adherence to my envelope and
ignoring the envelope. There were occasions on which I went somewhat
outside my envelope so that I increased my symptoms somewhat but didn't
suffer a bad flare-up.
Gaining (Partial) Control
Gaining control over
relapses was a psychologically-significant achievement. Eliminating
setbacks gave me a belief that I could make my life predictable. I am
sure that the reduction in stress that resulted helped create a positive
spiral: gaining more control reduced my worry which in turn lessened my
symptoms, deepening my sense of control.
I never felt that my
control over CFS was complete. I knew that ultimately the illness was in
charge and dictated how much improvement was possible. But it was
empowering to see my life improve when I discovered and learned to play
by the rules that illness had imposed on me.
Conclusion
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 my 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.
Recovery from illness
often occurs in one of two ways. Many illnesses are self-limiting and
resolve themselves over time. In other cases, medical treatment brings
relief. For example, taking an anti-biotic cures an infection. I
followed a third path in response to CFS, neither assuming that my
illness would disappear with the passage of time nor treating it with
medications. Rather, I believed that my best chance for improvement was
to use behavioral change. I saw my role as listening to my body and
doing those things that would help my body to find a way to re-establish
good health. For me, that was sufficient to produce recovery. I realize
that most patients will use medications to treat CFS. But, if you are a
patient, I hope you will also explore how you can help yourself by
changing how you live with your illness.
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