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Part 1 of 2
By Bruce Campbell, PhD
after I became ill
with CFIDS, I read an article in The CFIDS Chronicle entitled, "Recovery from
CFIDS." In it, Dean Anderson described his successful eight-year struggle with
the illness. Turning away from medical treatments, he instead figured out what
he could do to make himself better. Nearly five years have passed and I have
improved greatly using a similar approach. I want to describe my own recovery in
the hope that others may find encouragement in the power of self help. -BC
When I was diagnosed with CFIDS in
1997, I had been sick for four months with a flu-like illness. During that
period I gradually reduced my time at work to 15 hours per week, then stopped
working entirely. Neither strategy reduced my symptoms. I functioned at about 25
percent of my pre-illness level.
Today I have returned to a nearly normal
life. My improvement has been gradual but steady, about one or two percent a
month. I now rate myself at about 90 percent. While I still have limits and
experience mild symptoms at times, I have an activity level that is similar to
others of my age. I don't know whether my improvement will last, but I am
encouraged by the fact that my progress has been steady with no major setbacks.
Even before CFIDS, I had learned to ask myself two
questions when facing a health problem: What help does the medical system offer?
And how can I help myself? After getting my diagnosis, I read everything I could
find about CFIDS. I learned that the medical resources were quite limited; there
was no medical cure for CFIDS and no standard treatment. It seemed that the best
a medical approach had to offer was modest symptom improvement, probably
requiring a long period of experimentation.
On the other hand, it appeared that
people had success with a self-management approach. I was attracted to this
option in part because of my professional experience before becoming ill. I had
been a consultant to self-help programs at the Stanford University Medical
School and seen some impressive results from people's participation in self-help
groups for other chronic illnesses. That experience convinced me that how one
lives with chronic illness can change its effects and may even change the course
Based on my research and my prior
experience, I decided to forego experimenting with medical treatments and
instead utilize exclusively a self-help approach. I felt confident that I could
find many things that would help me improve.
This decision was not a rejection of
medicine in general or of my doctor. I checked in with him monthly by phone to
keep him apprised of my progress, and continued to see him for other medical
believe that all patients have resources that can help them cope with their
illness. The resources vary from person to person. These were some of mine:
- I was fortunate to have a moderate case
of CFIDS. Though significantly limited by the illness, I was better off than
the average patient in the severity of my symptoms.
- My life circumstances were favorable. I
was in my early 50s, old enough to have created a financial cushion for
myself. I was not stressed by the financial pressures that many CFIDS patients
face. I received understanding and support from my family and closest friends.
They accepted my illness as real and agreed with my decision to pursue a
self-management approach. I also lived alone. Although it could be frightening
on the days when I was too sick to get to the grocery store, living alone gave
me the freedom to live my life as I thought necessary for my recovery;
- My personality and disposition lent
themselves to a self-help approach. I enjoy solitude, and have often used
discipline and patience to achieve my goals;
- I had cancer in the 1970s that was
treated successfully, so my life already included an experience of recovery
from serious illness.
For more than a year after becoming sick, I wondered
whether I should make recovery my goal. That's a hard standard to live with. I
found having the goal of recovery condemned me to an emotional roller coaster,
in which I was encouraged by my progress but devastated by the inevitable
The dilemma helped me to understand
distinction between those things I could control and those I couldn't. I finally
concluded that whether I recovered was out of my hands, but that there were many
things I could do to improve my quality of life. By suspending expectations
about recovery, I could focus on what I could do to make my life better.
I found inspiration in Dean Anderson's
description of how he combined acceptance of being ill with hope for a better
life. He described acceptance not as resignation, but rather "an acceptance of
the reality of the illness and of the need to lead a different kind of life,
perhaps for the rest of my life." I adopted his formula as my own approach to
Chronic illness touches many aspects of our lives: our ability to work, our
moods, our relationships, our finances, our hopes and dreams, our sense of who
we are. In response, I used a variety of self-management strategies. I will
explain a couple of them in this article and then conclude with more in the next
issue of the Chronicle.
was confident that making notes about my life would enable me to see patterns,
to identify links between my actions and my symptoms. I experimented with a
variety of journals or logs, most requiring only a few minutes a day to fill
out. I was greatly rewarded by the effort.
Record keeping enabled me to recognize
fluctuations in symptoms by showing me that my CFIDS 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
Logging was also a good motivating
After noticing that some days were better than others, I focused on trying to
find what I was doing that created good days so I could expand them. I also used
my records to chart my progress over time. At the end of each month, I rated
myself using a 0-to-100 rating scale. Seeing written evidence of improvement
gave me hope, motivating me to continue my self-management program.
Perhaps the most dramatic benefit of
logging was the two hours I spent at the end of 1998 trying to understand the
relapses I had experienced that year. Reviewing my daily logs, I found eight
instances in which my symptoms had been so intense that I had spent at least one
day in bed. Looking for common causes, I found that almost all of the relapses
were associated either with travel or with having a secondary illness. I then
developed strategies to minimize the effects of travel and other illnesses,
including taking more rest at those times than usual. I believe the strategies
were successful, as I have had no relapses since.
To give my body a chance to recover, I had to accept living
within the limits imposed by the illness. I was helped by the concept of the
energy envelope. This is the idea that people with CFIDS have less energy than
those who are healthy and that they can improve their quality of life by staying
within the limits of their available energy.
For some time, I used this idea in
general way. I would ask myself whether doing something would take me "outside
the envelope" or whether I was living "inside the envelope." By reminding me of
my limits, the concept of the envelope helped me gain some control over
Then I decided to look at my limits
different areas of my life. I wondered how much sleep I needed at night, how
much daytime rest, how much time I could safely spend on the computer, how long
could I stand at one time before triggering symptoms, how far could I walk.
Thinking of my energy envelope in terms of different aspects of my life led to a
detailed understanding of my limits. I ended up with a list of about fifteen
items. In addition to those just mentioned, I included activity limits (how long
I could do various activities like driving, standing, housework, reading and
spending time with people), stressors in my life, food sensitivities,
sensitivity to light and noise and emotions. It took me at least a year to
develop this more detailed understanding, but I felt rewarded all along the way
because every insight I had helped me gain more control.
In the next issue: Getting off the
coaster; finding support; managing stress; and handling emotions.
Bruce Campbell, PhD, created and
directs the CFIDS/Fibromyalgia Self-Help program, which offers low-cost
self-help courses over the Internet and other resources for people with CFIDS
and fibromyalgia. For more information, visit www.CFIDSselfhelp.org. Prior to
becoming ill, Campbell worked on self-help programs at the Stanford University
Be a CFIDS
my self-help strategy, I adopted the attitude that CFIDS had imposed severe and largely inflexible limits
on me. To improve my quality of life, I had to find and adhere
to those limits. If I was lucky, I might be able
to extend the limits gradually through making small changes. I came to view living
with CFIDS as a series of experiments that I called being my own "CFIDS
I learned a lot through my experiments
especially my attempts to exercise. Early on I was able to do only a fraction of
what I could before becoming ill, walking 15 minutes to half an hour most days.
Through experimenting with walking at different times of day, I discovered that
exercising in the afternoon was much less likely to worsen symptoms. This led to
a general realization that when I did something could be as important as how
much. When I tried extending my walks, I observed that I sometimes felt fine
during the walk but experienced strong symptoms afterwards or had to take a nap
later in the day. That helped me to realize that the effects of activity might
I was finally able to expand my exercise
a significant way when I incorporated pre-emptive rests into my walks. I would
walk for 20 minutes, then sit down for a similar time, then walk some more.
Planned rests also enabled me to begin walking again in areas with uphill
My progress was very slow. Often I extended
the length of my walks by only one or two minutes every several weeks. Also, I
backed off and returned to my previous length if I experienced increased
symptoms. But the discipline and patience paid off over time. By extending my
exercise very gradually as I could tolerate it, I have returned now to a level
of exercise close to what I had before becoming ill.