Two Pacing Success Stories

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By Bruce Campbell
 
To give you an idea of what can be accomplished through pacing, here are two success stories from CFS patients, JoWynn Johns and Dean Anderson. 

JoWynn was severely restricted by her illness, but improved over a period of years by living within her energy envelope. Dean functioned at a higher level initially and eventually recovered. (Both wrote articles describing their experience that we have posted in the Success Stories archive.)
 

JoWynn Johns: Learning to Control Symptoms

After a career as a corporate executive and management consultant, JoWynn Johns developed symptoms of CFS in 1991. In the first two years, a period that she calls "keeping on with my life," she continued to live a busy life "despite feeling awful."

From 1993 to 1997, a time she calls "all-out effort to get well," she experienced a collapse and responded by trying many different approaches, including exercise, yoga, meditation, homeopathy, special diets, medications and supplements. None of the strategies helped. She experienced repeated cycles of push and crash, and gradually reduced her activity level.

Two changes occurred during this period that pointed her in a more productive direction. First, she began to listen to her body, asking what it needed. Second, she changed her goal. Letting go of the idea of recovery, she decided to focus on feeling better.

During a period she called "learning from my own body and experience," JoWynn aimed to determine what she had to do to feel better. She began by asking herself what it would mean to have a "good day." She decided that a good day meant a day having no minor symptoms and a minimal level of major symptoms.

A good day also included being able to take a walk and do artwork. Because she found a strong connection between troubled sleep and bad days, she also developed a definition of a good night: sleeping at least seven hours and waking refreshed.

She then asked, "What do I have to do to have good days and good nights?" After studying her journal and notes, she concluded that she could have good days if she met six conditions: spending 12 hours a day in bed, getting seven hours of sleep, staying at home, restricting her daily activity, working on the computer no more than an hour at a time and having no visitors or long phone conversations.

This was her energy envelope, her set of limits. Staying within them offered her a way to feel "as good as possible." (Her limits were quite restrictive, corresponding to a score below 20 on our Rating Scale. Your limits will depend on your unique situation.)

In the next period, which she called "developing a feedback system," JoWynn focused on developing a record keeping system. It included a monthly calendar, on which she noted her activities and symptoms for each day, with grades for each day and night as good or bad. She used color coding so she could see at a glance how she was doing.

Over time, she was able to see patterns. Predictably, poor sleep was associated with bad days. But she also found that mental exertion and emotional stresses provoked symptoms just as much as physical activities. Explaining the motivation for her elaborate scheme, she said:

I needed to make this information visible to prove to myself the effects of mental and emotional exertion, as well as physical activity. I also wanted concrete evidence of the effects of staying inside my envelope. Because limiting my life in this way is so very hard for me to do, I had to show myself that it was worth it.

 

She called the last phase "accepting my envelope." Living within her limits, JoWynn was able to greatly reduce her fatigue and other symptoms. Over time, she significantly increased the percentage of good days in each month from about 35% in 1996 to 80% and more in 1999. Her story through early 1999 is told in Living Within My Envelope: A How-To Story.

At the end of 2002, she was able to report, "I now have nearly 100% symptom-free good days. What a difference that makes! For me, having CFS is like having diabetes: it's a chronic condition that can be managed and that requires lifestyle adaptations."

In 2006, she reported further improvements in her condition. She had not experienced IBS for two years and her sleep was noticeably better.

Comparing living within her envelope to other treatments she has tried over the years, she reported "the only things that make me feel better and keep me relatively stabilized and able to achieve my priorities are scheduled resting and pacing."
 

Dean Anderson: A Recovery Story

Dean Anderson's approach was similar to JoWynn's, even though his starting and ending points were different. He functioned initially at a level corresponding to about 60 on our Rating Scale and worked ¾ time. After an eight year struggle, he returned to full-time work, travel and an active social life, and described himself as "substantially recovered." Most of his recovery occurred after his fifth year of illness.

Initially, he believed that he could recover through determination and hard work. Using this approach, he had some improvement, but he found himself devastated by relapses, which he viewed as signs of a failure of will power.

His experience led him to the belief that the key to his recovery was to adopt a different attitude, which he called a particular kind of acceptance. He described it not as 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." He explained:

The "effort" required to recover from CFIDS is an exercise in discipline and hopefulness, not determination and striving. The discipline required is...the discipline to recognize and adhere to one's known limitations and to follow a strict regimen without periodically lapsing.... It is the will to protect oneself, to not over-do and to find ways to be productive and find fulfillment under unfamiliar and difficult circumstances.

 

His is not the attitude of conquering illness, but rather one of listening, understanding and adapting to it. He emphasized living within limits in a disciplined and consistent way, staying true to what his body required, and looking for ways to find meaning in a different kind of life.

He wrote that he enjoyed a good relationship with his physician, but experienced no benefit from visits with a chiropractor, a homeopathic doctor and an acupuncturist. He also tried various alternative treatments, but concluded that none of "the remedies, medicines or food supplements I tried helped me one bit."

He came to believe that recovery would depend solely on his efforts and, with that belief, formulated a "recovery strategy." His approach included keeping a daily health journal, eliminating negative influences (both people and attitudes), and learning to be alone in silence (including learning to live without television).

A central element of his strategy was defining a safe level of work. Through experimentation, he concluded that he could work six hours a day without intensifying his symptoms or jeopardizing his recovery. Although he continued to be quite symptomatic, he was successful in working at that level while improving very gradually.

He used the hours freed up by his part-time schedule for self-care. He spent part of his lunch period resting. Also, he took an hour-long nap and did 20 minutes of visualization after he got home each day. On business trips, he took naps after arriving at his destination and declined many dinner invitations. Summarizing his approach to activity, he said, "I gradually learned to pace myself to stay within my limits."

He also exercised on a regular basis, experimenting to find his limits in that part of his life, just as he had with work. He kept records of "exercise duration and how I felt before, during and after each workout, and especially how I felt the next day."

He found his best time for exercise (late afternoon or early evening, after a nap) and the "right kind, intensity and duration of exercise for me." More importantly, he developed a new attitude toward exercise. A recovered "exercise junkie," he trained himself to enjoy exercise for its immediate benefits, without having any goal of progressing.

He also addressed on his attitudes and emotions. He reports that during the first few years he was sick, he felt resentment and anger toward his ex-wife and others in his life, and also guilt and regret over past failures. His response was to work at changing his attitude so that he was not controlled by negative thoughts and emotions.

As he improved, he gradually expanded his work day and after eight years, reported "I have returned to a full and fulfilling life." He titled his recovery story "Acceptance, Discipline and Hope," saying he believes that what CFS patients need is the strength to accept their condition even if others refuse to, the discipline to do consistently the things that promote improvement, and an attitude of hope.
 

In Summary

Both JoWynn and Dean used similar strategies in responding to CFS. They began their quest for improvement by accepting the reality of the illness and the need to lead a different kind of life. They found their limits by listening to their bodies, by experimenting with different activity levels, and by keeping detailed records.

Both had a flexible approach, in which they continually reflected on and learned from their experience. Both found the key to improvement lay in disciplining themselves to live consistently within the limits of their illness. Their experiences suggest that patients may be able to exert significant influence on their symptoms and quality of life by the consistent use of pacing.