What Works for
Managing CFIDS and Fibromyalgia
1: Introduction: Common
Problems, Shared Solutions
By Bruce Campbell
What works for managing CFIDS and
fibromyalgia? This series will offer answers to that question from some
experts: fellow patients. The patients I’ll quote are people who have
taken our CFIDS/Fibromyalgia self-help course,
which we describe as a solution-oriented discussion group. Each week
during the eight-week class, we ask students to share strategies that
have helped them cope with chronic illness. By reading this series you
will learn what fellow patients have found useful in areas such as
pacing, achieving goals, controlling symptoms, reducing stress, managing
emotions, improving relationships and minimizing relapses.
Common Problems in Chronic Illness
We begin our course by asking people
to describe the biggest problems they face because of having chronic
illness. Their responses demonstrate that being sick means much more
than managing a medical condition. Chronic illness is comprehensive in
its effects, touching every part of our lives.
1) Adjusting to Limits
The most frequently mentioned problem
is having to adjust to strict and seemingly inflexible limits. Having a
chronic illness means being able to do less. But illness also forces us
to make mental and emotional adjustments as well. The experience of
limits is often associated with a sense of powerlessness, requiring that
we adjust our expectations of ourselves and our hopes for the future.
"The toughest challenge for
me was the drastic reduction in energy and how that affected my
ability to work as a lawyer, and to be the wife and mother I was
accustomed to being."
"Probably the toughest
problem for me has been adjusting to my body's new ‘ideal’
activity level. Since the onset of CFIDS I had been going through a
push/crash cycle, trying to live my old life and then ending up bed
bound as a result. It took me quite a while to realize I could not
just fight my way through the illness, and even a longer time to start
adjusting my expectations of myself."
"I can't seem to come to
terms with what this illness has done to me physically, mentally or
emotionally. Most days I feel very discouraged and hopeless. I am
scared to death that this illness will define the rest of my life.
What about all of my goals, hopes and dreams?"
2) Living with Uncertainty
Having a long-term illness brings
uncertainty, both on a day-to-day level and long-term. It is difficult
to plan even one day when energy levels and symptoms seem unpredictable.
And the unpredictability of chronic illness also brings uncertainty
about the future, as we ask: Will I improve? Will I be able to support
myself or become dependent on others? If I improve, how far and will it
be lasting?
"My energy and symptoms are
like a very unpleasant roller coaster ride."
"The biggest problem when I
was first sick was wondering if the pain and fatigue would ever end.
Once I had the diagnosis, I was relieved to have a name for my problem,
but my future became more uncertain, as I read about FMS and learned
that it was unlikely that I would get over it."
3) Managing Symptoms
Third, people describe their struggles
coping with symptoms. Pain, fatigue, and sleep problems are
mentioned often in most of our groups, but in some classes mental
problems such as poor memory and difficulty concentrating are mentioned
even more frequently. In any case, symptoms create discomfort and make
living difficult. Their severity challenges us to rethink our lives.
"The biggest problem for me
is dealing with the fatigue, pain and memory loss associated with this
disease. I am currently back in school and have found it increasing
difficult to concentrate and learn everything I need to know to change
careers."
"Perhaps the most difficult
thing for me to cope with is the cognitive difficulties, not being
able to remember things or speak fluently because my mind short
circuits."
"A big problem for me was
trying to answer the question ‘How am I going to live with chronic
pain and fatigue the rest of my life?’ The past 9-1/2 years have
been an exercise in letting go of denial, experimentation with coping
techniques, dealing with emotions, and learning that there are ways
that I can improve my lifestyle while living with this illness."
4) Relationships
Students mention many frustrations in
relationships. Probably the most common is not feeling understood or
accepted. This includes not being able to convince others that we are
ill or feeling disapproval and rejection. Having limited energy often
creates strains in family relationships, with patients feeling guilty
when they are able to do less than they or others want. Other family
members may feel resentful at having to assume new responsibilities or
at the loss of companionship. Lowered income can create financial
problems. Getting out less can lead to a sense of isolation, both from
the loss of social contact and from feeling different.
"A major problem I continue
to face is the effect CFIDS has on my family. My husband finds it
discouraging, since his personal goals and our mutual goals seem much
farther away and more difficult now. The kids try to pick up some of
the slack at home, but they and my husband all seem more susceptible
to fatigue of their own."
"One problem I am dealing
with now is educating my kids about my illness, especially my
daughter, who is very angry about it, but won't talk to me about
it."
"The lack of understanding
and compassion from friends and relatives is hard. I constantly feel I
need to defend myself and my illness due to their comments and
criticism. They don't believe I'm ill, they cannot believe what they
cannot see and most days I look ‘fine’."
The Most Useful Coping Strategies
When we ask at the start of class what
coping strategies they find most useful, students offer a variety of
responses. They can be grouped into two large areas.
1) Pacing
Pacing is the most common general
strategy for managing illness. Pacing means both finding an overall
activity level that the body can tolerate and determining how much rest
the body requires. Specific strategies that are mentioned often include
taking scheduled rests, limiting the number of trips outside the house
per week, scheduling rest times before and after a big event like a
vacation, being responsive to signals from the body rather than trying
to "push through," keeping records to spot symptom triggers,
and breaking tasks down into small steps with rest between each step.
"What has helped me is to
maintain as much routine in my life as possible, which includes
regular resting. This really helps me to control symptoms. For
example, if I have a regular bedtime, I sleep better."
"Daily scheduled rests, no
matter how good I feel, have been perhaps the single most helpful tool
in my recovery. I have been amazed at what a difference short morning
and afternoon rests have made to increasing my stamina, reducing my
symptom level, and giving me a sense of control."
"I try to budget my limited
energy, by taking several rest periods during the day, breaking household
chores up into manageable amounts, getting help with housework and
reserving some energy for me to spend on small art projects."
2) Support
Many people have commented on the
importance of support from family, friends and fellow patients. Support
can also come from other sources, such as pets, therapists and an
individual’s faith. Support from fellow patients can be particularly
helpful, as they can provide information, understanding and inspiration.
"I would not have survived
this illness this long without my husband's support, and I also have
some family and friends who really try to understand me. I also have
to mention my dog who is wonderful company for me."
"I belong to the local
support group. It helps so much to talk to others who can
understand."
"I have two dear friends
with chronic illnesses who have been a tremendous source of support
for me. They have helped me keep my spirits up through the past
several months when my health was deteriorating and I was having
trouble finding a doctor."
Summary & Looking Forward
Chronic illness is much more than a
medical problem. CFIDS and fibromyalgia are comprehensive in their
effects, changing how much we can do, our ability to work, our moods,
our relationships, our finances, and our hopes and dreams for the
future. Students in our groups report using many coping strategies.
Probably the most common are reducing activity (pacing) and getting
support.
Coming next: What works for
controlling symptoms.
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