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Living well with CFS or fibromyalgia requires changing both what we think and what we do. This chapter deals with both. We'll discuss mental adjustments first, then how to change habitual behaviors.
 

We've seen many examples of mental adjustments throughout the book. One came up in the discussion of pacing. In order to live within our limits, we have to adjust our expectations to fit our current abilities. We also saw that changing our inner dialogue is one way to reduce pain, because dwelling on negative thoughts increases the experience of pain.

Similarly, our subjective experience of pain is increased by emotions such as depression and anxiety that are associated with negative thoughts, so managing our feelings by changing our thoughts offers one way to control pain. Also, we can reduce the suffering experienced during relapses by saying comforting things to ourselves.
 

Mental adjustments are important for controlling stress as well, because thoughts can be a source of stress. For example, if you experience stress because you think that as a "good wife" or "good mother" you should keep your house as you did before becoming ill or should contribute more in other ways, you can reduce your stress by changing your expectations to fit your new limits.
 

Three-Step Approach

The three-step approach you'll learn now will show you how to change your thoughts so they help you rather than increase your suffering. Having realistic ideas about your situation can help you pace and will reduce pain, stress and the suffering of relapses.
 

We will focus on our inner dialogue or self-talk. Self-talk is a habitual way of responding to experience, often an internal critic who can be very pessimistic. For example, if you experience a relapse, your inner voice might say something like, "You'll never get any better. Every time you try something, you fail." Sometimes the internal voice is misleading in a positive direction, if it says things like "This new treatment will cure me for sure."
 

Your self-talk can have a big effect on your mood and your self-esteem. Unnecessarily negative thoughts make you feel anxious, sad and hopeless. These feelings, in turn, make it difficult to act constructively.

Preoccupation with suffering may even intensify symptoms and trigger more negative thinking. The cycle can be very demoralizing, making it difficult to motivate yourself. Similarly, it can be demoralizing to experience repeated cycles of unrealistic hope for recovery followed by disappointment.
 

Recognizing Automatic Thoughts

The first step to changing your habitual thinking is to recognize it. This is not easy to do because our thoughts are automatic, so deeply ingrained that they seem self-evident. But if you can recognize the thoughts, you gain some distance from them and remove their self-evident character.
 

The technique I will outline for recognizing and gradually changing automatic thoughts is the Thought Record, which is described in the book Mind Over Mood by Dennis Greenberger and Christine Padesky.

Using this form offers one way to become aware of automatic thoughts and their effects on your mood and behavior. You can find similar techniques in other books, such as Learned Optimism by Martin Seligman or Feeling Good by David Burns or learn them from psychologists who specialize in cognitive therapy.
 

To see how this technique works, imagine a patient who took a walk one day and felt very tired when she got home. Feeling depressed and hopeless, she asked herself what thoughts were going through her mind at that point. They were, "I'll never get better. Every time I try something, it fails."

She recorded her experience in the first three columns of the Thought Record (see below). In column 1, she wrote a description of the event. In the second column, she recorded her emotions at the time of the event. And, in the third column, she wrote the thoughts going through her mind when the emotions were strongest.
 

The purpose of this exercise is to help you gain some distance from your thoughts, to remove their taken-for-granted or self-evident character. Because these thoughts are automatic, they can be hard to recognize and it can take some time to develop this skill. To capture your automatic thoughts, fill out a Thought Record as soon as you can when an upsetting event occurs.
 

Evaluating Automatic Thoughts

Once you identify your automatic thoughts by recording them, evaluate them to separate truth from distortions and irrationalities. To help you determine to what extent your automatic thoughts are valid, ask yourself what is the evidence for and against your thoughts. Use column 4 in the Thought Record for evidence in favor of your initial thoughts and column 5 for evidence against.
 

The idea is to suspend your belief that the automatic thoughts are true and, instead, look for evidence both pro and con. Writing down the evidence you find helps you gain distance from your thoughts and makes them less self-evident. By stepping back, you can more easily see how your automatic thoughts may ignore facts or select only the worst aspects of a situation.
 

Walked 30 min. Very tired after depressed hopeless I'll never get better. Everytime I try something, it fails. I have frequent setbacks. Exercise often makes me worse. Overall I'm better than a year ago. Many people improve.
 

Your thoughts at moments of strong emotion may seem irrefutable, so it may help to have in mind some questions you can ask yourself in order to find evidence that does not support your thoughts. Among them: 

• Do I know of situations in which the thought is not completely true all the time?
• If someone else had this thought, what would I tell them?
• When I felt this way in the past, what did I think that helped me feel better?
• Five years from now, am I likely to view this situation differently?
• Am I blaming myself for something not under my control?

Seeing Alternatives

In the last step, you propose a new understanding of your experience. What you write in column 6 of the Thought Record should be either an alternative interpretation of your experience (if you refuted the thought) or a balanced thought that summarizes the valid points for and against (if the evidence was mixed).

In either case, what you write should be consistent with the evidence you recorded in columns 4 and 5. At first, this process may seem artificial and contrived, but it has a point: you are training yourself touse a more balanced and realistic explanatory style. You are learning to replace one habitual interpretation of experience with another.
 

Reviewing what she had written in columns 4 and 5, our patient decided that the evidence was mixed. She wrote in column 6 a balanced thought that combined the evidence for and the evidence against. "I have frequent relapses and don't know if I will have lasting improvement, but I've made progress and that gives me hope."
  

Realistic Thinking, Not Positive Thinking

The three-step approach involves changing deeply ingrained habits of thought. The long-term results can be dramatic, but improvement is gradual, and there may be some bumps along the road. Becoming aware of negative thoughts may produce a short-term drop in mood.
 

The process suggested here does not involve replacing negative thoughts with positive, but inaccurate, thoughts. I am not suggesting you adopt something like the motto "every day, in every way, I am getting better and better." Rather, the goal is to learn to see your situation in an accurate, yet hopeful, manner: retraining your habits of thought in a more realistic direction.
 

The kind of thinking advocated here integrates all evidence, both positive and negative, in a realistic, balanced fashion. Using this way of understanding your experience, you acknowledge the negatives in your life, but praise yourself for your successes. This approach should reduce your stress by helping you feel better, less anxious and sad. And, at the same time, it should help you to deal more effectively with your illness.
 

Habit Change

Changing habitual thoughts is related to changing habitual behaviors. Let me explain using an example of a person in our program who changed how she handles household tasks. When she was healthy, her attitude was "I work until the task is done."

When she got fibromyalgia, she found that approach made her symptoms worse. Over time, she replaced her previous approach with the thought "I stop when tired." The new thought has led to new habits such as taking rest breaks while cleaning or cooking. The new habits have given her a sense of control.
 

Habit change begins with awareness. For this woman, awareness meant the recognition that, with fibromyalgia in her life, her old attitude toward household tasks led not to a sense of accomplishment, but rather to intensified symptoms and a sense of helplessness. At this stage, the goal is not habit change, but rather awareness of the consequences of continuing old habits.
 

The second step of habit change is the creation of alternative behavior. In our example, the alternative was to stop when tired. The key to success in this step is to plan a response ahead of time, so that when a situation arises, you can do something different than in the past.
 

One way to change behavior is to create and use a set of personal rules. Rules describe what you will do in a given situation. For example, you might establish rules for how long to stay on the computer, how much exercise to do, how far to drive, when to go to bed at night, when and how long to rest during the day, how much media exposure to have, and how long to spend in social situations. Personal rules have an If/Then structure. For example: 

• If I've been on the computer for 20 minutes, then it's time to take a break.
• If it's 11 am, then it's time for my morning rest.
• If it's 9 pm, then it's time to start getting ready for bed.

Rules are planned responses, which you use as a substitute for old habitual behaviors. Over time, the new behavior becomes a habit. For more on personal rules, see the previous chapter.
 

The third aspect focuses on thoughts and involves rewriting our mental scripts. Continuing with the same example, the thought "I've got to finish this job" would be replaced by thoughts such as "If I continue, I'll be forced to spend an hour in bed" or "I'm feeling tired, so I'm going to take a break now." The thoughts you create to counteract the old habit remind you of the consequences of continuing the old ways (increased symptoms) or reinforce the alternative (control).
 

Part of changing scripts is reframing our view of ourselves to support positive behaviors. For example, one person in our program has changed her view of taking rest breaks. She used to tell herself she was weak for lying down during the day. Now, when she rests her self-talk is, "I am helping myself to be healthy. I am saving energy to spend time with my husband or to baby sit my grandchildren."
 

The fourth part of habit change is support: having people around us who understand our situations and will support our efforts to change. Getting support may require that we educate the people in our lives about CFS and fibromyalgia. We can also get support from other people with CFS and FM, as well as from counselors.