The Patient's Guide to Chronic Fatigue Syndrome & Fibromyalgia
4: Becoming a Self-Manager
With long-term illnesses like CFS 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 or the illness resolves itself. But CFS 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. You are the expert on your condition. You know your situation better than anyone else, and you may know more about CFS or fibromyalgia than your doctor. Whether or not you want the role, you are the day-to-day manager of your condition and your decisions will have a big effect on your quality of life.
One part of managing long-term illness is treating symptoms. Doctors can be helpful, but, with long-term conditions, patients can do things for themselves to limit the effects of symptoms. You'll read a lot about how to do that in Part 3. The patient role in long-term illness is also greater because, as described in Chapter 1, long-term illnesses like CFS and fibromyalgia are more than medical conditions. Your illness affects many parts of your life, so managing it requires attention to issues like stress, emotions, relationships and money. (See Chapters 13 to 16.)
As a self-manager, you have a number of tasks. One responsibility 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. You also face the challenge of learning new skills. Third, you need 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.
This chapter discusses two of these tasks: educating yourself about your illness and developing problem-solving skills. The next chapter is devoted to building relationships with doctors and other health care providers. Chapters 6 and 7 give practical suggestions for two other skills. Chapter 6 gives step-by-step instructions for achieving short-term goals. Chapter 7 explains how you can use written records to improve your health.
Learning about CFS and fibromyalgia can include discussions with your doctor, visits to libraries and bookstores, and searching the Internet. This section discusses three additional sources of information.
Patient organizations such as the CFIDS Association of America for Chronic Fatigue Syndrome and the Arthritis Foundation for fibromyalgia are helpful resources. They offer information about CFS and fibromyalgia. In addition, they can hook you up with local support groups and may help you find a doctor.
The CFIDS Association is a national organization with a website (www.cfids.org) and a quarterly magazine for patients. The organization maintains a list of local support groups. The Arthritis Foundation is also a national organization and sponsors 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, classes and water exercise programs in many communities. Its classes include the Arthritis Self-Help course, which has material on fibromyalgia. Other sources of information about fibromyalgia include the Fibromyalgia Network (www.fmnetnews.com), the National Fibromyalgia Association (www.fmaware.org) and the Oregon Fibromyalgia Foundation (www.myalgia.com).
Support groups can be a good source of information as well. They may point you to doctors who treat CFS 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, through online chat rooms and message boards.
Support groups are a mixed bag and not all are helpful. Some are negative in tone or may be dominated by one or two people. Look for a group that gives you a sense of belonging, encourages balanced participation from many group members, offers you something positive to take home, and provides models of living successfully with illness. (For more, see the discussion on support groups and classes in Chapter 15.)
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 makes things worse. You have probably identified already a number of things that intensify your symptoms. Factors 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), too much time with other people, and family or other responsibilities.
You probably also have ideas of what helps you feel better and gives you some control over your illness. When we ask people in our groups what helps them and gives them a sense of control, 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 Chapter 7 or have a less formal system of self-observation, discovering links between what you do and your symptoms gives a sense of control.
We have seen some dramatic examples in class. For example, one person with a severe case of CFS experimented with the length and frequency of her rests. Instead of taking two long rests a day, which had been her practice before taking the class, she tried taking short rests every few hours. Using this different rest schedule, she cut her total rest time in half, from six hours to three, without increasing her symptoms. By making this simple change, she added several productive hours to her day. Other people have increased the amount of work they do by determining when during the day they are at their best. They may get twice as much done if they schedule their most demanding tasks for their good time of day.
Experimentation is the key, trying something different to see whether it helps. We call it being your own CFS or fibromyalgia scientist, a process in which you are both a researcher and your own research subject. Given the tremendous variation in symptoms and severity among CFS and fibromyalgia patients, developing an individualized approach to your illness, one based on your unique circumstances, offers the best chance for improvement.
Because your illness and other parts of your life are constantly changing, you are faced with the necessity to adapt. For example, the medications you take for pain may become less effective or your symptoms may worsen and you wonder whether you should quit work and go on disability. Taking a problem-solving approach can help you respond to your ever-changing situation. This section describes 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 that is important to you. Here are three examples.
For years before becoming ill, you hosted your family's holiday celebration. You decorated your house and cooked all the meals. Even though you are now ill and too much activity triggers a flare up of your symptoms, you feel pressured to entertain your family in the same way as before. You would like to find a way to celebrate the holidays that doesn't trigger a relapse.
Doing your weekly laundry and housecleaning tires you out so much that you need extra rest for two days afterwards. You feel compelled to do chores because you hate a messy house and not having clean clothes, but you realize you can't do your chores as you used to, given your limited energy.
You have gone back to school part time, but find it difficult to study because of cognitive problems (often called "brain fog" or "fibro fog"). You want to do well, but find you can't read for more than a half hour at a time. You are worried you won't be able to complete your assignments on time.
In each of these situations, you feel caught between two unattractive solutions: trying to do 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 view your situation in fresh ways by considering as many possibilities as you can imagine. Here's one way the second step might unfold in our three examples.
Holiday Celebration: Family customs and expectations are in conflict with your current limits. 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 not cooking; rotating the celebration among other relatives; and going to a restaurant for your holiday meal.
Each solution requires that you and your family examine and modify how the work of holiday celebrations is handled. 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. Both you 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 their roles change. You may regret 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 16 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 doing everything in one day. Or, you might still do all your chores in one day, but in small chunks, taking rest breaks periodically. Both of these solutions are examples of pacing, which is discussed in Chapter 10.
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 family members to share in the work. For example, children could clean their own rooms and do their own laundry. Or, you could hire a cleaning service.
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 that is easier to maintain. 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, the time of day she is mentally sharpest.
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 exams and more time than normal to complete a degree program. (School-aged patients can receive additional help through Special Education.)
Other remedies might include taking rest breaks while studying and practicing stress reduction. Rests 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 the Chapter 10. For relaxation techniques, see the Chapter 13.)
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 have a less ambitious set of events this year. Your extended family, however, is unsympathetic. They have never believed you are really sick. 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 old role in the family.
Household Chores: After talking with friends 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 plan to visit the Student Services office to ask about what accommodations your school offers under the Americans with Disabilities Act.
There are a number of principles to keep in mind while using problem solving.
Because of the nature of CFS and fibromyalgia, it helps to have a flexible approach to managing your illness. There is no standard treatment for either illness, no commonly prescribed remedy. Also, treatments that help for a time may later become ineffective. Finally, each person's life situation is unique and ever changing. For all these reasons, managing CFS and fibromyalgia is individualized and constantly evolving in response to circumstances. Problem solving offers a flexible and practical approach to managing chronic illness.
Problem solving is one of several skills you may find helpful in dealing with your illness. I'll explain others in upcoming chapters. As you develop problem solving and other skills, you can gradually incorporate them into your daily life. This process takes time and can be frustrating. Early attempts to try a new skill may be clumsy, with few good results. It may be tempting to stick with old ways. At those times, I hope you'll remember that 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.