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 syndrome (CFS) strikes. It not only affects the physical status of persons with CFS (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.
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.
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.
Some persons with CFS 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.
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 CFS research and management.
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