28. Becoming a Self-Manager

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With long-term conditions like CFS and fibromyalgia, you have a different role from the one 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 there is no medical cure so far for either CFS or fibromyalgia. 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. You are the day-to-day manager of your condition. Your decisions and how you lead your life will have a big effect on your symptoms and quality of life.

Self-management involves using a set of skills. Here are six we find particularly useful. (Two of them are discussed in more details in the next two chapters.)

Educating Yourself

One of your tasks as a self-manager is to gather information about Chronic Fatigue Syndrome and fibromyalgia, learning as much as you can about your condition and the treatment and lifestyle options available to you. Some commonly used sources include patient organizations such as the CFIDS Association of America and the National Fibromyalgia Association; the Internet; support groups; and books and newsletters.

Sorting through all the information can seem overwhelming. Here are two ideas for making that task manageable. First, ask whether the claims you hear are credible. Some people prey on the desperation of patients, so be skeptical of those who promise recovery, particularly if those promises come with a big price tag. Most reliable authorities believe that so far no cure has been developed for either condition. Be willing to experiment, but ask what risks are associated with a treatment and whether the likely gains are consistent with the cost. Second, view education as an ongoing task, but put limits on your efforts. New developments occur from time to time, but breakthroughs are rare. After an initial intense period of educating yourself, you can probably keep up with new ideas by reading to one or two newsletters or magazines. (For some ideas on newsletters, organizations, Internet sites and books, see the article "Educate Yourself" on our website.)

Achieving Goals

Another skill of the self-manager is the ability to set goals and to achieve them. The strategy we use in our program to attain goals is target setting, which involves translating a goal into a series of small, realistic steps or targets. As we use the term, a target is a set of specific actions that you can realistically expect to complete in the near future, typically one week. A target has two characteristics. It is both specific (concrete and measurable) and realistic (doable). The next chapter contains step-by-step instructions for setting targets.

Learning about Yourself: Self-Observation

You are an important source of information about your condition, perhaps the most important one. Using self-observation, you can learn what intensifies your symptoms and what helps you to feel better, and then use that knowledge to improve your quality of life by doing less of those things that make you worse and more of those that help.

Your ability to learn from self-observation can be enhanced greatly by keeping records. Keeping a health diary or log can reveal patterns and show you the links between your actions and your symptoms. Such record keeping should not require more than a few minutes a day. For much more on logging, including sample logs, see Chapter 30.

Experimentation

Finding what works through trial and error is another key skill for successful self-management. Since there are no consistently effective medications for treating CFS or FM, you will probably have to experiment to discover what drugs help you. Experimentation applies to lifestyle change as well. For example, you can use trial and error to determine how much exercise you can tolerate, how far you can drive or how long you can work on the computer.

As mentioned earlier, a woman with a severe case of CFS added several productive hours to her day by trying a different pattern of rest. Instead of taking two rests of three hours each, which had been her practice before taking our class, she tried taking short rests every hour or two. Using this different rest schedule, she cut her total rest time in half, from six hours to three, without increasing her symptoms.

Other people have increased the amount and quality of work they do by being sensitive to time of day. One person found her best time of day for mental activity was in the afternoon. If she studied then, she could read for twice as long as in the morning, with a higher level of understanding.

Reframing Experience

Living successfully with CFS or FM requires not only changing what we do but also what we think, so another skill is making mental adjustments. For example, if you feel guilty with how little you can do now in comparison to your activity level when you were healthy, you may need to adjust your expectations. One person in our program reported that a counselor had helped her to "stop being so hard on myself and accept that I was not pathetic, useless and weak, but was doing a lot to cope with my illness and actually living a pretty worthwhile life in spite of my difficulties."

A related mental adjustment is to change our self-talk or inner dialogue. If you have a tendency to interpret your experience negatively, you can retrain yourself to speak supportively and realistically to yourself when you are depressed or in a flare. You can also change your overall mental climate by noticing what is going right and by congratulating yourself on your accomplishments. Having a positive focus doesn't mean denying problems or ignoring symptoms, but involves taking heart in progress and seeing successes as signs that improvement is possible. For more on this topic, see Chapter 31 and the articles "Optimism, Hope and Control" and "Counting Your Blessings: How Gratitude Improves Your Health" on our website.

Problem Solving

Problem solving is the master skill. It gives you a structured way to respond to issues that arise in your life. You can think of it as a four-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 two examples.

• For years before becoming ill, you hosted your family's holiday celebration. You decorated your house and cooked the meal. 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 other household chores tires you out so much that you need more rest than usual for two days afterwards. You hate a messy house and not having clean clothes, but you can't see how to do your chores, given your limited energy

2) List and Evaluate Possible Solutions
The second step is to consider solutions. Begin by listing as many possibilities as you can imagine. Often, problems have multiple causes, so a combination of solutions may be appropriate. After you have a list, consider advantages and disadvantages of each option, and then rank them, giving the highest place to the solution you believe is most likely to work. Here's one way the second step might unfold in our examples.

Holiday Celebration: Solutions to your holiday dilemma include: hosting the celebration, but having others bring the food; rotating the celebration among other relatives; and hosting the holiday meal in a restaurant.

Each solution requires that you and your family examine and modify how the work of holiday celebrations is handled. A solution will probably involve family conversations in which you may need to be assertive about your limits and your need for help. 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.

Household Chores: You are not able to do your household chores in the way you used to. 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 frequent rest breaks.

Another possible solution is to clean less frequently. (One person with FM 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.

3) Experiment with Solutions
The third step is to try various solutions and evaluate the results. Probably some potential remedies won't work, but others may. Here's one way the third step could turn out in our 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 event this year. Your extended family, however, is unsympathetic. They have never believed you are really sick. You and your husband agree to host 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 other people with fibromyalgia 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."

4) Evaluate Results
Assess the results of your experiments. It's possible that some of your experiments will be successful, but that others may not. If you don't have a complete success, you may have a partial solution. Your final solution may be a combination of several approaches. It may be helpful to look at your efforts as a series of experiments. With that view, you can more easily accept disappointments and move on to another attempt. In some cases, a problem may not be solvable or not solvable at the present time.

Summary
There are a number of principles to keep in mind while using problem solving.

• Explore a variety of potential solutions. There are often several ways a problem can be solved. Looking at your situation from a number of perspectives can help you recognize different approaches. Some problems are solved by a combination of strategies.
• Ask what resources are available. In many cases, you will be able to solve your problems yourself by brainstorming possible solutions and trying one or more of them. But, you may sometimes want to get help, either in trying to understand your problem or in solving it.
• Practice assertiveness. Your illness will require changes in your role and in those of other members of your family. Tasks like grocery shopping and hosting the family holiday celebration may need to be renegotiated. You have to adjust to the loss of roles, while others often must take on new responsibilities.
• Make mental and emotional adjustments. Having a serious illness requires that you adopt new expectations for yourself based on having new, more restrictive limits. You will probably have to reduce your activity level and also make psychological adjustments, accepting that the person you were before your illness has been replaced with a new, more limited person.

References

CFIDS and Fibromyalgia Self-Help website: cfsselfhelp.org/. The articles on optimism and gratitude are in the Coping Strategies section of the Library.