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Achieving Consistency, Part 2

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By Bruce Campbell

Pacing is widely believed to be one of the most effective treatments for ME/CFS and FM. It reduces symptoms, brings a more stable life and often leads to improvement. Many people try it, but find it’s not easy to do consistently.

The previous article outlined five strategies for increasing consistency. Here are seven more. All involve changing ingrained habits and thoughts, and thus require effort and patience.

Listen to Your Body
One challenge of living with ME/CFS or FM is that you don’t always get signals from your body at the time you go outside your limits, because the effects are often delayed. The long-term solution to this problem is to define your limits by keeping records and then adjust to living within them.
You can, however, reduce the effects of being outside your limits by gradually retraining yourself to respond differently to the signals sent by your body. Instead of ignoring those signals, you can learn to hear and respond to the body’s warning signs.
In the words of one person, “Getting well requires a shift from trying to override your body's signals (in order to continue what you were doing) to paying attention when your body tells you to stop or slow down.” Another person said, “I’ve had to learn to replace ‘work until done’ with ‘stop when tired.’”
I learned the power of responding to warning signs one day when I was cooking chili. After standing at the stove for 45 minutes, I suddenly felt tired and lightheaded. My first thought was: “If I can just work for another 10 minutes, I can finish this and then go rest.”
But then I remembered that in the past such an approach had led to several hours’ forced rest. So I decided to turn off the heat under the chili and lie down. After about 15 minutes, I felt OK and returned to finish the cooking. I needed no more rest during the remainder of the day. A quarter hour break had a nice payoff, enabling me to avoid several hours in bed. 
Use Routine and Reminders
Developing routines is another way to increase consistency. Doing things in a regular and customary way reduces energy expenditure, because you are living by habit rather than continuously confronting new situations.

Living your life in a predictable way can help reduce relapses, because routine is less stressful than novelty and because it increases your chances for living within your limits.
Your ability to do this depends on your developing a detailed understanding of your limits and then creating a schedule of activity and rest that honors those limits.
One person who took our course said, "Developing a routine and sticking to it have been helpful because the familiarity reduces the number of surprises and lowers the attention that I have to spend on unexpected happenings. If I always wash my face after brushing my teeth, then, when I'm done brushing my teeth, I don't have to think about what I'm going to do next."
Another said, “Except in special circumstances, I do roughly the same stuff at roughly the same time of day….[I’ve done it for so long that] it's not a mental battle to do it - it's just the way my day is.”
Bobbie Brown was able to change her habits, as she describes in an article titled 25 Reasons Why I’ve Improved. First she learned her limits for activities such as driving, time on the computer and phone, and socializing.

Then she gradually altered her life to fit within the limits she had discovered. Habit change can be facilitated by using reminders. For example, you can use a timer to limit the length of computer sessions or post reminder notes on the refrigerator or bathroom mirror.
Stop & Choose
One way that people get pulled outside their limits is by giving in to the temptation of doing something that seems appealing at the moment. A way to avoid such lapses is to stop before you act and realize you have a choice.
I made frequent use of this strategy. When I was tempted to do too much, I visualized myself lying in bed in pain for hours, with heavy brain fog. I tried to make the image as vivid as I could, feeling the pain in my body and experiencing the guilt about harming myself and the hopelessness that often accompanied my relapses.

The goal was to create an experience that brought to life the consequences of overdoing, thus counteracting the immediate pleasure I anticipate from doing something that would take me beyond my limit.
One woman in our program has developed a different way to stop and choose. She carries a card in her purse to remind her of the consequences of overactivity. On one side, it says “What’s the Trade-Off?” (In other words, what is the cost of doing some activity.)

The other side reads “Just Say No.” (An alternative to the second part is to ask: “Am I willing to accept the consequences?”) Another person has sayings she uses to remind her of alternatives. One is “I can finish this task and crash or listen to my body and stop.”

Alternatively, you can focus on the positive and give yourself reminders of what you gain through pacing. For example, you might post notes to yourself in prominent places in your house, saying things such as “Staying within limits gives me control,” “Pacing reduces my symptoms,” and “Pacing makes my life more stable.”

Learn Assertiveness

By being assertive --speaking up for yourself, setting limits, and saying "No"-- you protect yourself and avoid doing things that intensify symptoms.

For example, you can teach your family and friends to respect your need for regular rest breaks and can make your limits clear by telling others how long you'll talk on the phone, how much time you will spend at a party and so on.

Another part of assertiveness is learning to delegate and ask for help. Others often feel as helpless as you about your illness; asking them to help you in some specific way replaces the sense of helplessness with a feeling of accomplishment while protecting your health.

A formerly housebound woman in our program provides an example of how to use assertiveness. For several years, she told her family that she had severe limits, but she always said "yes" to their requests, leaving her with high symptoms and resentment toward her family.

She finally decided that the solution was for her to set limits. By making clear what she would and would not do (for example, setting limits on how often she would babysit her grandchildren), her health improved so much that she was able to return to work.

Adjust Your Expectations

As mentioned above, many strategies for succeeding at pacing require the development of new habits and routines. These in turn are based on reduced expectations, ones consistent with your limits. The ability to develop new expectations is based on adopting a different attitude, a particular kind of acceptance.
As explained by recovered ME/CFS patient Dean Anderson, this acceptance is not resignation, but rather “an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life.
Some people find it helpful to compare themselves to other people with ME/CFS and FM rather than to healthy people. Coming to acceptance is a process that often takes several years, but it has significant benefits.

In the words of one person, “I've discovered that I can now be perfectly at peace with lowering my expectations as I know too well what happens when I try to push the envelope and then relapse!!”

Forgive Yourself
No one stays in their envelope all of the time. Life has its ups and downs; some times are more stressful than others. Instead of beating yourself up when you slip or circumstances overwhelm you, it’s better just to ask, “What can I learn from this experience?” and move on.
For step-by-step instructions for changing your “self-talk” (the voice in your head or internal monologue), see either of two articles: Changing Self-Talk or Taming Stressful Thoughts.
Value Yourself
Some people with ME/CFS and FM find it difficult to act in their own interest. In some cases, the answer is to learn assertiveness. Assertiveness means finding your limits and then communicating them to others.
One person in our program reported that she was able to avoid setbacks when she learned to speak up for herself. She wrote, “Communicating clearly when I need medicine, rest or quiet time and taking time for these things when I need them all help me to prevent a relapse.” Asking for help rather than trying to do it all yourself is part of taking care of yourself.
Other people have a habit of putting others’ needs ahead of their own. Sometimes called “people pleasers,” these individuals with ME/CFS and FM have difficulty setting limits or saying “no” to others. Because of this view, people pleasers may not take care of themselves. This trait can be deeply ingrained and may require counseling to change.