3: How To Help Your Loved One & Yourself
This chapter has a dual focus. We begin with ideas about how family members and friends can help people with CFS or FM in many ways, then discuss how to take care of yourself.
How To Help The Person Who Is Ill
Some help you offer the person who is ill is practical, such as taking on tasks the person with CFS or FM is no longer able to do or providing transportation for errands and medical visits. Some help is emotional, offering a listening ear or some reassurance. 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.
The severity of symptoms and sometimes even the course of CFS and FM are affected by how a person lives her day to day life. The effects are so great that lifestyle change is the treatment of choice for the two conditions. 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."
The way you interact with the person in your life who has CFS and/or FM has a significant effect on her. It makes a significant difference to her symptoms and quality of life.
There are benefits to your quality of life as well. A person with CFS or FM who learns pacing has a much more predictable life, making planning easier and reducing uncertainty. She is also likely to be able to expand her activity level. A person who gets better sleep is likely to be less irritable and able to think more clearly.
Here’s how you can help in seven different areas.
Probably the single most important lifestyle change for controlling symptoms and increasing the likelihood of improvement 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. (As mentioned earlier, the average person enters our program at about 25% of normal, which means to control symptoms she must begin by reducing activity by 75%.)
Pacing also usually includes integrating regular rest periods into the day and other strategies such as:
Pacing offers the possibility of a more stable and predictable life. With pacing, people with CFS and FM can live their life according to a plan, rather than in response to symptoms, giving them a sense of managing their illness rather than the illness being in control. Learning pacing is a gradual process, usually taking a period of several years and involving the use of multiple strategies.
One way to understand the value of pacing is by contrasting it another way of living with CFS and FM: push and crash. This involves overdoing followed by recovery through rest. The amount of rest required is out of proportion to the overdoing.
To give an example of the price paid for overdoing and the value of pacing, one person in our program said that week-long visits from her daughter and granddaughter triggered relapses lasting six months. Since she learned to use pacing during the visits, her recovery time has been two days.
Family and friends can help the person with CFS or FM to adapt by accepting that she can do less than before and by acknowledging that she 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. Patients often experience sleep as unrefreshing; a person spends a night in bed but wakes up as tired as before. Other sleep problems are common as well, such as difficulty getting to sleep, waking in the middle of the night or early in the morning, and over sleeping.
Because sleep problems are so common and so debilitating, poor sleep is often the first symptom addressed. 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 snoring by the sleep partner.) 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, such as temperature.
Other factors that affect sleep include overactivity, stress and worry. Too much activity can create a sense of restlessness, sometimes call the "tired but wired" feeling. The antidotes are keeping activity within the limits imposed by the illness and having a quiet period to wind down before going to bed. Stress often leads to muscle tension, which makes falling asleep more difficult. Worry, too, can make it harder to fall asleep. Practices that reduce stress and worry will aid sleep.
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 sensitive to stress. It’s as if 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. Controlling stress, along with pacing and improving sleep, are probably the top three approaches for managing CFS and FM.
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. Light, noise and crowds create stress for many patients. Avoiding those situations or limiting the period of exposure can help the patient control symptoms. Many patients are selective about their exposure to television and movies, avoiding material that is emotionally arousing and shows with rapid scene changes.
Novelty is another source of stress. It takes more energy to respond to a new situation than it does to something familiar. One response is to make life predictable. Some patients have done that through routine: living their lives according to a schedule. They have been able to reduce the surprises and emotional shocks in their lives, and thereby reduce their stress.
Fighting Cognitive Problems (Brain 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.
Most people with CFS and FM feel confused by sensory input coming from several sources at one time and are therefore more 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. A conversation with a CFS or fibromyalgia patient is likely to be more productive if conducted in a quiet environment free of distractions.
Another solution to sensory overload is to have an orderly physical environment. Removing clutter is a way to control brain fog by limiting sensory input. A related strategy 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 patients have better and worse periods during the day. A patient may be able to get twice as much done if they schedule activity for good hours of the day. Similarly, discussions are likely to be more productive if held during a time when the patient is mentally sharpest.
Most people with CFS and fibromyalgia find that their emotions are more intense and harder to control than they were before they became ill. The technical term is labile. As one person in our program wrote, "My emotions are much more sensitive than ever before. I cry more easily, and I have less emotional reserve."
One example of intense emotions among people with CFS and FM is irritability. Patients can easily feel frustrated, which often leads to unfortunate outbursts of anger that may be directed at those around them.
We advise patients to take responsibility for the problems their illness creates for others, suggesting that if their illness affects their moods, they use a time when they are feeling well to make a plan of things to do to help them feel better when their mood is low, so they don't inflict their negative moods on others. For example, they might plan to respond to feeling irritable by taking a rest (irritation is frequently triggered by overexertion), taking a walk or listening to music.
Anything out of the ordinary --a vacation, a holiday celebration or even having people over for dinner-- creates a special challenge for people with CFS and/or FM. As non-routine events, they require more energy than everyday life and can easily lead to a relapse. Family members and friends can help by supporting the person with CFS or FM in her use of strategies that reduce the cost of a special event.
The most effective strategy is to take more rest than usual, before, during and after a special event, storing up energy by taking extra rest before the event, limiting symptoms by taking extra rest during and taking whatever extra rest is needed afterwards.
The other two strategies people often use are to plan in detail and to discuss plans with others. For travel, planning may include scheduling in advance the activities for each day of the trip. It might also mean using a wheelchair or motorized cart in airports. Discussion involves sharing plans so all involved understand.
All these strategies imply that the person who is now more limited will probably have to change 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 or change 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.
Dietary changes are common with CFS and FM. Most CFS and FM patients are intolerant of alcohol and many are sensitive to caffeine and other stimulants; sweeteners such as sugar and corn syrup; food additives; and tobacco.
About a third of CFS and fibromyalgia patients have food sensitivities or food allergies. Negative reactions include gastrointestinal symptoms such as heartburn, gas, nausea, diarrhea constipation, as well as other symptoms such as headaches, muscle pain, changes in pulse and fatigue.
Some common sources of food allergy include dairy products, eggs, soy, wheat, and corn. Often the solution is to eliminate a food or food group from the diet. Sometimes the patient's diet is restricted to a limited number of foods, calling for family accommodation. Solutions include dual meal preparation or change of diet by other members of the family.
How To Take Care of Yourself
Living with someone who has CFS or FM can be a stressful experience. You may take on extra responsibilities, experience financial strain, feel frustrated and resentful at times, lose companionship, face uncertainty about the future, and experience both reduced socializing and sexual difficulties.
In response to the pressures created by serious illness, here are nine ways to take care of yourself. Because the severity of CFS and FM vary, not all the suggestions will apply to all caregivers.
Maintain Your Health
This is the number 1 recommendation of experts on caregiving. To serve your loved one well and to avoid resentment and burnout, take time to get adequate rest, to eat well and to exercise.
When people offer to help, accept the offer and suggest specific things that they can do. If your finances allow, consider paying for help in such areas as meals, housecleaning and transportation.
Take Time for Yourself
Get a respite from caregiving by spending time away from the person who is ill, for example by taking up a new hobby or returning to an old one or by spending time with friends. The point is that to give yourself some time for leisure time and enjoyment, so you can recharge your batteries and also nurture relationships beyond that with their spouse.
Seek information about CFS or FM, especially strategies for reducing symptoms and improving quality of life. One source is the articles on this website. See the article Educate Yourself for a list of patient organizations, websites and books about the two conditions.
Avoid isolation and reduce stress by maintaining relationships with extended family and friends. This may mean getting together regularly for exercise or cards with friends, spending time with children or any other kind of socializing that keeps you connected with others.
Be sensitive to signs of stress and consider seeing a counselor if you detect them. Signs that counseling might be appropriate include feeling exhausted, depressed or burned out, or over-reacting, such as by angry outbursts.
Counseling can be helpful for gaining perspective on your situation or to explore communication problems. You might get help in individual sessions or in joint sessions with the person who is ill.
Grieve Your Losses
Just as people with CFS and FM experience many losses, so do family and friends. They are deprived of part of the companionship the patient used to provide, as well as her work around the house and, in many cases, financial contributions. And, just as the person who is ill has lost the future she hoped for, so do family members have to adjust their dreams for the future.
Like patients, family members, too, need to grieve their losses. In the words of one patient, "I lost my health, but my husband lost the woman he married." Grieving may take several years.
Create New Shared Activities
Serious illness may make it impossible for you to spend time with the person who is ill in the same way as before, but you can develop new shared activities to do together. One couple told us they took up the study of music using courses on DVD. The husband in another couple said that once he realized his wife's new limits, they shifted from camping and hiking to dinner and a movie.
The point is to create occasions for shared pleasure, so that the relationship is strengthened and both ill and healthy members of the family don't come to see their relationships as just about illness and deprivation.
Seek Support from Other Caregivers
Fellow caregivers can offer strength, support, inspiration and models of successful adaptation. You might meet such people through patient support groups. Also, we offer a self-help course for family and friends of people with CFS and FM.