Recovery from Chronic Fatigue Syndrome

By living within my energy envelope, I was able to reduce my symptoms, regain control, and, over a period of four years, return to my pre-CFS level of health. My progress was slow, about one to two percent a month, and there were periods of several months where it was hard to see any progress. So self-management was not a ‘swallow once’ magic pill.

Based on my experience, I created two rules for myself about expanding my Envelope:

1. Extend your limits a little bit at a time
2. Return to your previous level if symptoms increase

A little bit typically meant no more than 5% to 10%. For example, I tried adding two minutes to my 20 minute daily walk. For more than a year, this extension led to greater fatigue, so I returned to 20 minutes. (As explained in chapter 11, I was finally able to expand my envelope for walking significantly and in a lasting way when I incorporated a rest break into my walks.)

The second guideline is based on the recognition that with all experimentation, some attempts work and others don’t, so we need a plan for what to do in the cases where the experiment fails. With failed attempts to expand the envelope, my response was to resume the old, proven-safe activity level.

In the self-help program, we sometimes phrase this third part of pacing as “extend your limits, as allowed by the body” or “increase your activity in small increments, as tolerated by the body.”

Examples of Expanding the Envelope Through Planned Rest

As described in chapter 9 on pre-emptive rest, probably the most powerful strategy for expanding my envelope was my use of two brief scheduled rests each day.  Resting in this way reduced my symptoms, increased the amount of time I could be active safely, and made my life more stable.

One technique I used to expand my envelope was to take a proven strategy and apply it in a new way or a different circumstance. One example is how I used the idea of planned rest to expand my envelope for travel. In the first two years I was sick, I did very little travel and a couple of trips triggered such severe symptoms that I spent the whole vacation lying in pain in my hotel room.

A big breakthrough occurred when I experimented with stopping for a ten to fifteen minute rest for every two hours of car travel. With those rest breaks, I arrived fresher at my destination and had a lower symptom level throughout my trip. This strategy increased my envelope for travel.

Another way that rest helped me increase my envelope was to take a brief rest as soon as my symptoms became more intense. I gave an example in the chili story in the last chapter. The strategy of responding quickly to warning signs from my body enabled me to avoid a long period of “downtime,” so that by giving in to my symptoms I reduced my total rest time.

Experimenting with Rest & Using Routine

A member of our first self-help class taught me that it is not the total amount of time spent in rest that is crucial, but rather how the rest is distributed through the day.

When she started our course, she was resting six hours a day, taking two naps of three hours each. She decided to break up her day into one- and two-hour blocks, taking a 10- to 15- minute rest during each block. Using this strategy, she reduced her total rest time by an hour and a half a day after two months. Four months later she was resting three hours a day, half as much as before the course. By taking frequent short rests, she added three hours of productive time to her day, without increasing her symptoms.

Another way I expanded my activity level without increasing my symptoms was through using routine. In observing myself, I noticed that novelty was a source of stress; it takes more energy to respond to a new situation than it does to something familiar. I found that I could save energy by making my life predictable. I developed a schedule of activity and rest (a daily plan), reducing the surprises and emotional shocks in my life, thereby reducing my stress.

Recent research on habits and routines has demonstrated that they use less energy than one-time events. This is because of ‘chunking’. This term means that the mind stores habitual routines as a single set of instructions, which are executed automatically as a set of behaviors.

Other Ways to Expand the Envelope

Also, as mentioned earlier, being sensitive to time of day enabled me to do more without increasing symptoms. I first discovered that principle when I tried walking in the morning rather than at my usual time in the afternoon and found I could walk far less in the AM! A member of our program used time of day to study for a professional exam. By experimenting, she found that she could not retain information if she studied in the morning, but if she studied after lunch, she could read for two 45-minute sessions and retain the information.

A final example of extending the envelope illustrates the idea that how we react to events can affect the amount of energy available to us. If we can respond in a relaxed manner to stressful situations, we can preserve energy that might otherwise be dissipated in tension and anxiety.

The example comes from the woman who expanded her envelope by breaking up her daily rests into many short breaks. At her birthday party one year, she took on the role of the good hostess, moving about and worrying whether everyone was having a good time. She found herself tired and cranky after an hour.

At a similar party a year later, she decided to imagine herself as a queen who was observing the situation from a throne. Freed from the self-imposed expectation that she should make sure everyone enjoyed themselves, she found herself with good energy for more than two hours. By relaxing, she reduced her worry and extended her energy.

Her experience illustrates the idea that mental and emotional activity, not just physical activity, use energy. Stress and any experience that triggers the release of adrenaline are big energy users. Whatever a person can do to lessen stress will also preserve their supply of energy for productive uses.