Recovery
from Chronic Fatigue Syndrome
Pacing
Strategies
By Bruce Campbell
(Article adapted from the online
booklet "Recovery from
Chronic Fatigue Syndrome: One Person’ s Story”.)
I experienced tremendous
frustration in the first six months I was ill. I felt that I was living
on a roller coaster, swinging between times of intense symptoms and
periods of rest. When I felt an increase in my symptoms, I went to bed.
When the symptoms subsided, I resumed a higher activity level. But even
when I lowered my activity level to half of normal and then to a
quarter, it was too much and I soon found myself back in bed. I was
caught in a demoralizing cycle of overactivity and rest. Living in
response to my symptoms, my life felt out of control.
At some point, I heard
about the idea of pacing, which seemed to hold out the promise of
stability as an alternative to repeated cycles of push and crash. I
believe I first learned of the idea through Alicia Deale, who shared
with me materials she had used in a research project that used graded
activity (gradual expansion of activity level) as a treatment for CFS.
Since the research seemed to show that a substantial portion of patients
who used this approach improved, I was attracted to the system she and
her colleagues had developed.
Pacing meant finding the
right balance of activity and rest, and applying that balance on an
everyday basis. The key was to live a life that was planned, with a
similar amount of activity and rest every day, so that I would have a
consistent level of activity and a similar amount of rest each day.
I found this idea hard to
understand. Her approach required that I view my illness in a new way.
Up until then, I had applied to CFS an approach used with previous
illnesses, resting when I felt bad. She was suggesting an alternative:
living according to a plan rather than in response to symptoms. I was
intrigued by the possibility that this new approach would give me some
control over my illness.
The idea of pacing gave
me a way to understand my cycles of intense symptoms and rest. Instead
of thinking that fluctuations in my symptoms were random, I came to see
that they were due to variations in my activity level. At first, I felt
guilty about the idea that I might be the cause of my symptoms, but then
I realized that the idea was also the basis for hope: if my actions
could make my symptoms worse, I might be able to gain some control over
them by changing the way I acted.
I decided to adopt an
approach that combined my old idea of resting in response to intense
symptoms with the new idea of living according to a schedule. The use of
planned rest was the most counterintuitive part of the new program, but
the one that probably had the greatest effect. Rest was so crucial to my
recovery that I have devoted the next article to it.
The idea of pacing fit
perfectly with the idea of limits, giving me a way to understand why my
symptoms waxed and waned; I felt better or worse depending on whether I
honored or exceeded my limits.
When I was healthy, my
body told me to slow down by creating a sensation of fatigue. But with
CFS, those signals were often delayed. For example, I might feel no
increase in fatigue during my daily walk, but then be very tired a few
hours later. The lack of trustworthy signals from my body was one of the
chief reasons having a scheduled life made sense to me. In the absence
of reliable real-time information from my body, living according to a
schedule was a better course than living in response to symptoms.
Keeping records gave me a way to determine a safe activity level.
Sticking to Pacing
It was hard to live
consistently within strict limits. When I started pacing, I functioned
at about 25% of normal. My improvement averaged one or two percent a
month, with periods of several months when I couldn’t see any
improvement at all. But since I believed that pacing offered my best
chance for long-term improvement, I developed several strategies to help
me live consistently within my limits.
Perhaps the most useful
was to visualize how I would feel if I went outside my envelope.
Imagining the fatigue and brain fog provided a counterweight to the
immediate pleasure I anticipated from doing something that took me
beyond my limit. I pictured and felt the consequences of doing too much
by imagining myself lying in bed in pain.
Record-keeping also
helped me live within my limits. Having written proof of the effects of
my actions helped me to hold myself accountable for my actions. Records
were a graphic and irrefutable way to prove to myself that doing too
much intensified my symptoms and led to increased rest. Also, I used my
health log as a positive motivator, helping me aim for more frequent
no-symptom days. Another way I checked on myself was to discuss how I
was doing with somebody else, often using my logs for reference. Such
discussions helped me to be accountable to someone else.
A third strategy was
routine. Having a regular schedule enabled me to avoid a lot of decision
making. Instead of having to ask whether something was or was not within
my envelope, I tried to stick to a schedule I knew was safe. A related
idea is what I call having rules for specific situations. For example,
one rule was to avoid noisy places. Having that rule gave me permission
to leave noisy restaurants.
Fourth, I developed ways
of talking to myself when I was tempted by the voice that said things
like “you don’t have symptoms today, so you must be recovered.”
The best response I could give was to remind myself that, even though I
had experienced real improvement, change was very gradual. Increasing my
activity level dramatically just because I wasn't experiencing symptoms
on a particular day threatened the stability that pacing had brought to
my life. The proof that pacing worked was in my records, which showed
far fewer days in bed and gradual progress.
Finally, I tried to be
forgiving with myself. I didn’t always stay in my envelope. But,
instead of beating myself up for failing, I decided it was better to
just to say "what can I learn from this experience" and move
on.
This approach required a
great deal of patience and a kind of faith. To stick with pacing, I
needed to feel confident that my approach would pay off in the long run.
Although it was very difficult at times to stay within my limits
consistently, I resisted the temptation to hope for a quick recovery and
I took consolation in my steady progress, even if it was at a very slow
rate.
Special Events
Pacing worked well most
of the time, because I lived a predictable life. But special events like
vacations and holiday celebrations presented a challenge. While I could
maintain a routine in my everyday life, some occasions pulled me out of
my regular schedule. I developed a number of strategies in response to
help me cope better with non-routine events. Most applied mainly to
travel.
Take Extra Rest:
The most useful strategy was to rest before, during and after a special
event. I stored up energy for a trip by doubling my normal daily rest
time for a week before leaving. I limited my symptoms by taking extra
rest during the trip. And I committed myself to taking whatever extra
rest I needed after returning home. I also found that I could reduce the
effects of driving by taking a brief rest break every two hours.
Set Limits with Others:
My trips went more smoothly when, after determining a safe activity
level, I discussed my limits ahead of time with the people I traveled
with. I found that others appreciated knowing what to expect from me,
reducing the chances for surprise or disappointment. When they knew that
I would spend part of each afternoon resting, for example, they could
schedule an activity that didn’t involve me for that time.
Adjust My Expectations:
I was able to replace resentment about not being able to do all that I
wanted to by focusing on what I could do. I consoled myself with
the idea that half a loaf is better than nothing. Even if I weren't able
to do everything I did before becoming ill, making compromises enabled
me to participate at times somewhat outside my envelope so that I
increased my symptoms somewhat but didn't suffer a bad flare-up.
In Summary
Overall, pacing brought a
level of stability to my life that I wouldn’t have thought possible in
the early months of being ill. By followed a schedule that balanced
activity and rest, I was able to replace a feeling that my life was out
of control with the experience of predictability. I think it likely that
the reduction in stress that resulted from having a stable life helped
make my life even more stable.
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