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Treatment: Lifestyle
Imagine feeling fine upon awakening, but by day's
end, feeling as
if a bad case of the flu has hit - the fatigue is too severe to get out of bed. Going to the bathroom
requires help and remaining upright for more than a few minutes is impossible. In addition, nearly every
muscle and joint hurt, the headache is fierce, the throat is scratchy and thinking isn't very clear -
in fact, it's difficult to find the words to put sentences together. Despite feeling exhausted, sleep
is restless and unrefreshing. It's just the flu and tomorrow it will be better. But tomorrow comes, and
it's not better. Six weeks later, there still isn't much improvement. At six months, many symptoms remain.
What could be happening?
The above description is a typical
scenario when
chronic fatigue and immune dysfunction syndrome (CFIDS) strikes. It not only affects the physical status
of
persons with CFIDS (PWC), but their social, family and work life. Each person who interacts with the PWC
is also affected as they make extra efforts to carry out the PWC's responsibilities. As time passes, the
emotional status of all persons involved is impacted.
Feelings of guilt, helplessness, confusion, dependence,
anger, sadness and
worthlessness are common for the PWC. After a few weeks or months, friends and
family may feel resentful, employers are impatient, and health care providers are
beginning to think that the PWC is avoiding life stressors, is probably depressed, and perhaps is imagining
or making up their symptoms.
Life Adjustments
Significant adjustments
by partners,
family, friends and
even employers and coworkers of PWCs are necessary. It is important that they,
along with the PWC, learn about the disease and ways in which they can
understand, support and cope. For the PWC, counseling or cognitive behavioral
therapy are often helpful
in dealing with the alterations in daily living made necessary due to reduced energy, pain and mental
confusion.
Altered Activity
Using available
energy wisely is the most
fundamental thing that PWCs need to learn. On days when the fatigue is
considerably less it's important that PWCs not overdo it or they may find
themselves completely exhausted and end up spending the next
several days in bed. Setting priorities on what needs to be done versus
what the PWC would like to see
done is imperative. Setting realistic expectations of one's self (and others) will decrease
everybody's stress level, not to mention feelings of guilt.
Other Daily Living Adjustments
PWCs
frequently have
gastrointestinal
problems that may require a change in diet. A dietitian may help the PWC
maintain good nutritional health. Disrupted sleep can worsen symptoms,
particularly cognitive problems, so it's vitally important that the PWC and health care
provider work together to solve this problem. Physical and occupational
therapists can often assist PWCs in
finding satisfactory methods to decrease pain, improve mobility and prevent deconditioning.
Employment Concerns
Some persons
with CFIDS are
able to continue working full
time, while others are not able to work at all. Many PWCs find a level somewhere
between the two and are able to decrease their work hours. The financial impact
of lost work hours can be significant, creating a potentially drastic change in
lifestyle. Partial or total disability income benefits may be available via an employer, private
plan or through the Social Security
Administration, but it is a lengthy process to obtain and/or retain these benefits, and there is usually
a significant gap between prior earnings and disability income.
Summary
Adjustments in lifestyle
are not only necessary,
but possible, for the PWC as well as their family, friends and associates. Maintaining good emotional
and physical health is the goal for everyone involved in the PWCs life. The CFIDS Association of
America
would like to serve as a resource for those in need of information and support. Visit our Web site
often
to stay current on the latest in CFIDS research and management.
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