Adapting to Life with Long-Term Illness: How Families Can Help
November 28, 2012
Dr. Bruce Campbell directs the educational CFIDS and Fibromyalgia Self-Help website (www.cfidsselfhelp.org), and online self-help group discussion courses that share practical ways to deal with the daily challenges of chronic illness. (Registration for the winter quarter closes Jan 1.)
How Families Can Help People with CFS or FM
Bruce Campbell, PhD
Family members and friends can help people with CFS or FM in many ways. Some help is practical, such as providing transportation to medical visits or taking on tasks the person with CFS or FM is no longer able to do. Some help is emotional, offering support and understanding.
But perhaps the biggest aid family and friends can give is to support the person with CFS or FM in her efforts to adapt her life to long-term illness.
If you are a family member or friend of someone with CFS or FM, how you interact with that person will have a significant effect on her. For people with CFS and FM, quality of life is shaped by how they lead their lives, so much so that lifestyle change is the treatment of choice.
In the words of well-known CFS/FM physician Dr. Charles Lapp, CFS and FM "are best managed with adaptation and lifestyle changes....There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFS or FM."
This article outlines how family and friends can help support lifestyle change in five different areas: activity level, sleep, household environment, stress and special events.
Activity Limits and Pacing
Probably the single most important lifestyle change for controlling symptoms is to adjust activity level to fit the limits imposed by illness. This approach is often called pacing. In contrast to fighting the body with repeated cycles of push and crash, the person who adapts to limits seeks to understand the body's new requirements and to live within them.
Pacing, above all, means reducing one's overall activity level. The reduction varies depending on the severity of symptoms, but is usually between 50% and 80%. Pacing also usually includes integrating rest periods into the day.
Family and friends can help the patient adapt to CFS or FM by accepting that the patient can do less than before and by acknowledging that the patient will need to spend more time in rest and do things in new ways (such as alternating activity and rest).
Poor sleep is one of the most common and troublesome issues in both CFS and fibromyalgia. Treatment of sleep problems usually includes prescription medications, but lifestyle changes can also be useful. Sleep can be improved by having an environment conducive to sleep and by having good sleep habits, such as a regular time to go to bed each night.
A comfortable sleep environment includes a good mattress and control of light, noise and temperature. Noise includes spouse snoring. Some couples solve noise problems by sleeping in separate rooms. This strategy also allows the patients greater control over other elements in the sleep environment.
Fighting the Fog
Most CFS and fibromyalgia patients experience cognitive difficulties, often called "brain fog" or "fibro fog." These problems include confusion, difficulty concentrating, fumbling for words and lapses in short-term memory. Family members can help the patient in their life to reduce the amount and the effects of cognitive problems by supporting the patient in her efforts to control fog.
• Many patients make use of lists and other reminders as a way to fight brain fog. They may post notes to themselves in places like the refrigerator, bathroom mirror or the inside of the front door.
• Patients often experience fog when they try to do more than one thing at a time, such as talking while preparing a meal. The solution is to focus on only one activity at a time.
• Most CFS and fibromyalgia patients feel confused by sensory input coming from several sources at one time. They are likely to think more clearly if noise and light are at levels they can tolerate, and if sensory data is limited to one source at a time.
• Another way to limit sensory overload is to have an orderly physical environment.
• A related strategy for controlling the effects of brain fog is to live a predictable life using routines. For example, always putting keys in the same place and having meals at the same time every day.
• A final strategy for reducing the effects of brain fog is to be sensitive to time of day. Most people with CFS and FM have better and worse periods during the day and may be able to get much more done if they schedule activity for good hours of the day.
Sensitivity to Stress
Stress is a challenge for everyone, but it is especially difficult for people with CFS and FM. The two conditions add new stressors and also make people more vulnerable to stress.
CFS and FM reset people's "stress thermostat," so that the effects of a given level of stress are greater than they would be for a healthy person. The combination of additional stressors and increased vulnerability creates a double challenge. Stress is multiplied at the same time that stress takes a greater toll.
One of the best stress management strategies is preventive: minimizing the body's stress response by avoiding stressful situations. This can include a person's avoiding foods and other substances to which they are allergic, minimizing situations that create sensory overload (for example, crowds and noisy places) and limiting contact with anxious or negative people.
Another stress avoidance technique is routine: doing things in familiar ways and living life according to a schedule.
Special events, such as vacations, holiday celebrations or (for some people) having people over for dinner, require special measures. As non-routine events, they require more energy than everyday life and can easily lead to a relapse. Family members can help by supporting the patient in using strategies such as the following.
• Patients often minimize the cost of a special event by changing their role or level of involvement. They might stop cooking the meal for a holiday celebration and instead ask family members to bring one dish each. Or they might go to event, but stay for less time than when they were healthy.
• Patients often take more rest than usual, before, during and after a special event. They store up energy by taking extra rest before the event; limit symptoms by taking extra rest during, and take whatever extra rest is needed afterwards.
• Patients also allow for changing their level of involvement based on symptoms. On a trip, for example, they might opt out of some activities in order to take additional rest.
Symptom levels and quality of life for people with CFS and fibromyalgia are affected greatly by how they live their lives. Family and friends can help by supporting patients' efforts to adapt to the limits imposed by CFS and FM.
(This article is one part of the CFIDS & FM Self-Help series “Recasting Relationships and Building Support.”)
• “Coping with Phone Issues When Illness Limits Energy"
• “Too Loud, Bright, Crowded, Confusing? Dealing with Sensory Overload”
• “Lifting the Fog: Dealing with Cognitive Problems in FM and ME/CFS”
• "Getting Through the Bad Days"
Note: This article is reproduced with kind permission from www.cfidsselfhelp.org - which offers a large resource library on all aspects of coping with chronic illness.
ProHealth offers a wide range of nutritional supplements for optimal health.*
*These products are not intended to diagnose, treat, cure, or prevent any disease.
| (1 existing comment)
One other way
|Posted by: Kelly Latta
Dec 1, 2012
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Family members and friends might also consider advocacy. There may be no better way to say to a patient, "I believe you have a horrible disease, and I will do what you may be too sick to do."
Everyone has different skill sets so advocacy could be as simple as going to doctor's appointments with the patient and backing up their description of what they are experiencing. Or participating in contests where patient groups or researchers are competing for funds, attending a government meeting or sending in testimony. You could even ask the President to look into the disease.
The Susan G. Komen Foundation for breast cancer started as simply as Nancy Goodman keeping a promise to her big sister Suzy. Because adaptation is a worthy intermediate goal - but a cure may be the long term goal.
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