The CFIDS &
Fibromyalgia
Self-Help Book
Chapter 2:
Self-Management
With long-term illnesses
like CFIDS and fibromyalgia, you have a different role as a patient than
you have with acute illnesses. With short-term illnesses, you often can
rely on a doctor to provide a solution. But CFIDS and fibromyalgia are
different. There is no medical cure for either one. Conditions that can’t
be cured need to be managed. A manager is someone who is responsible for
making decisions. And you are the expert on your condition. You know
your situation better than anyone else and you may know more about CFIDS
or fibromyalgia than your doctor. Whether or not you sought out the
role, you are the manager of your condition. Your decisions will have a
big effect on your quality of life.
As a self-manager, you
have a number of tasks. One task is to gather information, to learn as
much as you can about your condition and treatment options for it, so
that you can make informed, intelligent decisions. Another task is to
seek help from appropriate professionals. Since the relationships you
develop with doctors and other health care providers are crucial, it is
important to find people you trust and feel comfortable working with,
and for you to take an active role in your care. Third, your success
depends on your taking an active role in responding to ever-changing
conditions. Above all, this means learning to solve problems. Each of
these tasks is described in a section below.
As a manager of a
long-term condition, you also face the challenge of learning new skills,
practicing them until you achieve mastery. As you develop new habits,
you can gradually incorporate them into your daily life. Unfortunately
this process takes time and is often frustrating. Early attempts to try
a new skill may be clumsy, with few good results. It may be tempting to
stick with old ways. The likelihood that you will improve your quality
of life depends heavily on your accepting responsibility for those
things under your control and developing habits that promote a better
quality of life.
Information
Learning about CFIDS and
fibromyalgia can begin with your doctor and with visits to libraries and
bookstores. Beyond that I suggest you consider four other sources of
help.
Organizations
Patient organizations
such as the Arthritis Foundation for fibromyalgia and the CFIDS
Association of America for CFIDS are wonderful resources. They offer
information about fibromyalgia and CFIDS. In addition, they can hook you
up with a local support group and may help you find a doctor.
The Arthritis Foundation
is a national organization with local chapters in many places in the
United States. The national organization has an extensive website (www.arthritis.org),
offers Arthritis Today magazine and publishes many books and
pamphlets. Through the local chapters, it sponsors support groups and
classes in many communities. Classes include the Arthritis Self-Help
course, which includes material on fibromyalgia. The CFIDS Association is also a national organization with a
website (www.cfids.org) and a
quarterly patient magazine. They maintain a list of local support
groups.
Support Groups
Support groups can be a
good source of information as well. They may point you to doctors who
treat CFIDS and fibromyalgia. Also, groups can offer models of
successful coping with illness. People who are living well with your
condition can both teach you practical strategies and offer inspiration.
Today such support is not limited to in-person meetings. Similar
experiences are available on the Internet, at online chat rooms and
message boards.
But not all support
groups are supportive. Some are negative in tone, reinforcing a sense
that patients are passive victims of illness. Such groups tend to be
dominated by one or a few people. A good group is one in which you feel
a sense of belonging, which encourages balanced participation from most
or all people present (if it’s a discussion group), which gives you
something positive to take home, either inspiration or practical tips,
and which offers models of living successfully with illness. (For more,
see the discussion on support groups and classes in Chapter
12.)
The Internet
Like support groups, the
Internet is a mixed bag. Good information on practically any topic is
available over the net, but you have to be discriminating. Some
organizations offer trustworthy information; others may be preying on
patients’ desperation for a cure. One place to start research on CFIDS
and fibromyalgia is with the organizations mentioned in this book. Another way to begin is by using search engines such as Google
(www.google.com).
You can often learn a lot
from the ending of the site’s name. Those ending in .com are
commercial or business sites, usually offering products or services for
sale. Non-profit organizations such as the Arthritis Foundation or the
CFIDS Association typically have site names with .org at the end.
Government websites, such as that of the Centers for Disease Control (www.cdc.gov)
end with .gov. Educational institutions are identified by the suffix .edu.
You: Self-Observation
Last, you are a source of
information about your illness, perhaps the most important one. You live
with your condition on a day-to-day basis and know it intimately.
Through self-observation you can learn a lot about your body’s needs,
what helps you and what hurts you. For example, you probably already
know a number of things that make your symptoms worse. Relapse triggers
often mentioned in our groups include: doing too much, poor sleep,
travel, financial problems, stressful relationships, worries about the
future, food or chemical allergies, light or sound (sensory overload),
time with other people, and family or other responsibilities.
Just
as you already know a lot about what makes you feel worse, you probably
also have ideas of what helps you to feel better and to gain some
control over your illness. When we ask people at the beginning of class
what they have found helpful, they often respond with answers like the
following:
Accepting my limits, pacing myself
Taking regular rests each day
Getting support from other patients
Using medications to control symptoms
Changing my diet
Asking others for help
Avoiding people and situations that trigger symptoms
Turning inward, spirituality
Laughter and other pleasurable activities
Practicing relaxation and stress reduction
You can increase your
sense of control by trying experiments and noting the results. Whether
you keep records as described in the chapter on logging or have a less
formal system of self-observation, discovering links between what you do
and your symptoms gives you a sense of control.
We have seen some
dramatic examples in class. For example, one person with a severe case
of CFIDS was able to cut her rest time in half without increasing her
symptoms by taking several short rests each day rather than two long
ones. By making this simple change, she added several productive hours
to her day. Other people have increased the amount of work they do by
choosing carefully when they work. They may get twice as much
done during their good time of day than at other times.
Experimentation is the
key, trying something different to see whether it helps. We call it
being your own scientist. You are both a researcher and your own
research subject. Given the tremendous variation in symptoms and
severity among CFIDS and fibromyalgia patients, developing an
individualized approach to your illness based on your unique
circumstances offers the best chance for improvement.
Medical Partnership
As noted above, chronic
illness calls for a different relationship between patient and physician
than is usually the case in acute illnesses. Because your condition is
an ongoing one in which you are the day-to-day manager, the
patient/physician relationship is more appropriately a partnership. As
such, it is reasonable for you to expect some things of your health care
provider. She or he should: know your illness or be open to learning
about it; believe your illness is real; treat you with respect; and be
willing to experiment to find treatments that work for you.
This section contains
some suggestions for making this important ongoing relationship a
productive one. It summarizes advice about doctor/patient relationships
in Living a Healthy Life with Chronic Conditions. That source
suggests that to get the most from your visits with the doctor you “take
P.A.R.T.” The letters mean Prepare, be Active, Repeat, and Take
action.
Your doctor is an
important ally in your effort to live well with your illness. If you
have found a physician who fits the criteria mentioned above, someone
who is supportive and wants to help you feel better, the biggest
obstacle to a good relationship is time. Particularly now in a managed
care environment, doctors work on a tight schedule that often leaves
them as frustrated as patients. By viewing your visits as professional
meetings, you can structure your time with physicians to be productive.
Prepare
Before going to the
doctor, prepare an agenda. Ask yourself why you are going and what you
hope to accomplish. Are you seeking a diagnosis to explain new symptoms?
Would you like a new medication? Do you want the doctor to submit a
document supporting a disability claim? It may help to write down a list
of your questions or problems. Don’t expect to address more than two
or three issues in one visit. If you are uncertain about whether you can
explain yourself adequately or remember the doctor’s response, you
might ask a family member or friend to accompany you.
Consider rehearsing a
concise description of your symptoms and situation. You might include
when the symptoms started, where they are located and what changes in
your life might account for them. Also, consider reporting the effects
of previous treatment, for example the effectiveness and side effects of
a medication.
Be Active
Take an active role in
your appointment. Begin the visit by describing briefly your main
concerns. Studies suggest that doctors allow around 20 seconds for a
patient to describe her or his concerns before interrupting, so state
succinctly your concerns and what you want from the doctor. You might
say something like “I’m here today because my sleep is worse. I’m
afraid the drug I’ve been taking isn’t working any more. I hope we
can discuss what other medications I might try.” You may want to
include a reference to your thoughts and feelings about the problem. For
example, if sleep is your problem you might say “I’m concerned
because I’ve been doing better overall and I’m afraid that poor
sleep may make all my other symptoms worse and I’ll be back where I
was two years ago.” If you have a written list of concerns, give it to
the doctor. See the appointment as a discussion between you and your
doctor.
Repeat
To be sure you have
understood, repeat back to the doctor the key points he or she has made.
For example, you might state that you understand the doctor is
recommending you treat your sleep problem by taking two medications, one
to help you fall asleep and the other to help you stay asleep. If you
don’t understand or are not clear, ask the doctor to repeat.
Take Action
As the visit is ending,
ask yourself if you are clear about what you are expected to do next. If
you discussed a medication, did you receive a prescription? If so, do
you understand when to take it and what kind of side effects to expect?
Can you follow-up by phone or would she or he like to see you again? If
so, how soon? If you are not clear or are not certain you can remember,
write down the doctor’s instructions or ask the doctor to do so.
Problem Solving
Because CFIDS and
fibromyalgia, and other parts of our lives, are constantly changing, we
are faced with the necessity to adapt. Your pain becomes worse and the
usual strategies don’t help. You stop working and receive short-term
disability, but it ends after a year. You improve and want to travel,
but wonder how long a trip would be safe.
Taking a problem-solving
approach can help you respond to your always-changing situation. We will
describe problem solving as a three-step process.
1) Select a Problem
The starting point is to
identify a problem that is important to you and that you feel ready or
compelled to work on now. It will usually be something that interferes
with your life, makes your life much more difficult or prevents you from
doing something important. Here are three examples.
In each of these
hypothetical situations, you felt caught between two unattractive
solutions: doing things as before but with a high level of symptoms or
giving up something that you value. Having such a conflict may provide
the motivation to see your situation in new ways and to look for
alternatives.
2) Explore Causes and
Possible Remedies
The second step is to
think about what factors may lie behind the problem, and then to
brainstorm how you could handle the situation differently in the future.
Often, problems have multiple causes, so a combination of solutions may
be appropriate. The idea at this stage is to consider as many
possibilities as you can imagine. That way you are likely to view your
situation in fresh ways. Here’s how you might implement the second
step in our three examples.
Holiday Celebration: Family
customs and expectations are in conflict with your current limits. Now
you need help or perhaps will have to give your former role to others.
Practical solutions to your holiday dilemma include: hosting the
celebration but having others bring the food; hosting but cooking only
one dish; rotating the celebration among other relatives; and going out
for a family meal.
Each solution requires
that you and your family examine and modify expectations for how the
work of holiday celebrations is handled. As such, the situation is one
case of some general issues. First, a solution to your holiday dilemma
will probably involve family conversations, in which you will need to be
assertive about your limits and your need for help. Also, the holiday
situation is symbolic of the fact that you have changed and those around
you need to adjust.
Just as you have to take
on a new identity, other family members have to adapt as well. Both your
role in the family and theirs change. You may resent losing some former
responsibilities and other family members may resent having new ones.
There are psychological adjustments as well. Giving up your role as host
for the holidays is just one part of a broader experience of loss of
roles that provided identity and meaning. (See Chapter 13 on coming to
terms with loss.)
Household Chores: You
are not able to do your household chores in the way you are used to
doing them. One possible solution is to spread the chores out over
several days rather than trying to do all the laundry and housecleaning
in one day. Or you might still do them both in one day, but take rest
breaks periodically. Both of these solutions are examples of pacing,
which is discussed in Chapter 6.
Another possible solution
is to clean less frequently. (One person wrote she now views dust as
something that “protects my furniture.”) As with some of the
solutions for holiday celebrations, this involves changing your ideas of
what is appropriate. Two other solutions involve getting help from
others. You might ask children to clean their own rooms or do their own
laundry. Or you could hire a cleaning service to come in from time to
time.
A final possibility is to
move to a smaller home. If you saw housecleaning as one example of how
household responsibilities in general had become too great, you might
consider simplifying your life by moving to a home with fewer
responsibilities. People in our groups have used all of these
strategies.
School: Your
hopes for school are in conflict with your present abilities. One
solution would be to reduce your class load. If you are taking two
courses, try one. Another solution is to experiment with the time of day
at which you study. A person in one of our groups did that and found
that she could study longer and retain information better if she read in
the afternoon than if she studied in the morning. By experimenting, she
found her best time of day for reading.
A third solution is to
ask school authorities for accommodations under the Americans with
Disabilities Act. Several people in our groups have been successful with
that strategy. The arrangements they worked out included being allowed
more time to complete an exam and more time than normal to complete a
degree program.
Other remedies might
include taking rest breaks while studying and practicing stress
reduction. Rests breaks allow you to recharge your batteries and can be
a helpful way to get more done than you might in a single session.
Stress reduction might be helpful if you are putting too much pressure
on yourself. (For a discussion of rest, see Chapter
6. For stress
reduction practices, see Chapter 9.)
3) Experiment with
Solutions
The third step is to try
various solutions and evaluate the results. Probably some potential
remedies won’t work, but perhaps others will prove helpful. Your final
solution may be a combination of several approaches. I suggest you look
at your efforts as a series of experiments. With that view, you can more
easily accept disappointments and move on to another attempt.
Here’s one way the
third step could turn out in our three examples.
Holiday Celebration:
You talk to your husband and children about a new division of labor for
the holidays. You agree to try having a less ambitious set of events
this year. Your extended family, however, is unsympathetic. They have
never believed you were truly ill. You and your husband accept hosting
the family celebration for at least one more year. He and your children
agree to share cooking responsibilities. You conclude that it may take
several years to settle into a new holiday routine that all family
members will accept. You also decide that some members of your extended
family may never accept your limits. You join a support group and find
it helpful to talk to fellow patients about accepting the loss of your
role as family matriarch.
Household Chores:
After talking with friends you know from a support group, you decide to
try a combination of strategies. You ask your children to clean their
own rooms and wash their own laundry. Also, you decide you will reduce
the amount of housecleaning you do, cleaning less thoroughly and having
your house cleaned twice a year by professionals. At the suggestion of
another patient, you decide to keep a journal to explore your thoughts
and feelings about the loss of your ability to “keep up.”
School:
You experiment with the time of day during which you study but don’t
find any differences except that studying after 8 pm doesn’t work for
you. You try taking a ten-minute rest break whenever your brain fog
increases and find it helps your concentration. You ask your teacher to
give you more time to take a test but he refuses, saying he thinks that
would be unfair to other students. Rather than fighting him, you decide
to do what you can in the allotted time, but promise yourself that you
will check with the student services office about what options might be
available in future courses.
Summary
There are a number of
principles to keep in mind while using problem solving.
