Recovery from Chronic Fatigue Syndrome

The second part of pacing is learning to live within the limits imposed by CFS. This is a gradual process that requires patience and discipline, and brings rewards only a little bit at a time.

Since I believed that pacing offered my best chance for long-term improvement, I developed and used many strategies to help me live consistently within my limits. (We teach about two dozen strategies in the self-help program.)

Planned Rests

If there was one secret to my improvement, it was taking two brief planned rests daily. (They were so central to my recovery that I’ve devoted the whole next chapter to them.) Scheduled rests, taken no matter how I felt, reduced my symptoms, brought stability, and actually reduced the amount of time I spent resting by helping me avoid overdoing and the rest that inevitably followed.

Planned rest is probably the most popular pacing strategy used by people in the self-help program. I estimate that 80% to 90% of people who try it find it helpful. Here are some examples. One person reported: “The results have been incredible. My symptoms and pain have decreased and I feel more ‘in control’. My sleep has been more refreshing and even my mood has improved.” Another wrote, “I have more stamina and the graph of my days doesn’t dip and rise so steeply.” And a third commented, “for the first time in the four and a half years I have been ill, I feel that it is possible to manage my symptoms and have some predictability.”

Record Keeping

Record keeping, which took just a few minutes a day, helped me live within my limits by showing me what those limits were. Records were a graphic and irrefutable way to prove to myself that doing too much intensified my symptoms and led to increased rest. Also, I used my health log to motivate myself. My records showed me I was improving and my improvement encouraged me to aim for more symptom-free days. Another way I checked on myself was to discuss how I was doing with somebody else, often using my logs for reference. Such discussions helped me to be accountable to someone else.

This strategy was so central to my recovery that a whole chapter (10) is devoted to it.

Stop and Choose

One way that we get pulled outside our 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, which I called “stop and choose.” 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 feeling 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 anticipated from doing something that would take me beyond my limit.

Rules, Routines and Reminders

I decided that I could reduce the energy expended in pacing if I could ‘automate’ my behavior. I found three ways to do that: rules, routines and reminders. All three were ways to help me to create new habits, so I automatically did the right thing.

Rules describe what I would do in particular situations and often had an If/Then structure. One rule was to get off the computer and stop watching TV at 9 pm, to allow for a wind down period before going to bed:

• If it’s 9 pm, it’s time to turn off the TV and the computer

Second, I had rules for my two daily rests:

• If it’s 11 am, it’s time for my morning rest.
• If it’s 3:30 pm, it’s time for my afternoon rest

My third rule was to avoid noisy places. Having that rule gave me permission to leave noisy restaurants.

Routines meant having a regular schedule, which enabled me to avoid a lot of decision making. Instead of having to ask whether something was or was not within my envelope, I tried to stick to a schedule I knew was safe.

Reminders is a third strategy to facilitate the process of replacing one set of habits with another. For example, I sometimes used a timer to limit the length of my sessions on the computer. Also, I sometimes used objects as reminders. On days I planned to do my weight lifting routine, I often put one weight out where I could see it. And I got out the bread pan as reminder on days when I planned to bake bread.

Realistic Self-Talk

Fourth, I developed ways of talking to myself when I was tempted by the voice that said things like “You don’t have symptoms today, so you must be recovered.” The best response I could give was to remind myself that, even though I had experienced real improvement, change was very gradual. Increasing my activity level dramatically just because I wasn’t experiencing symptoms on a particular day threatened the stability that pacing had brought to my life.

The proof that pacing worked was in my records, which showed far fewer days in bed and gradual progress. Seeing progress helped me accept the slow rate of improvement.

Forgiving Myself

I didn’t always stay in my envelope. Initially, I beat myself up for failing, but eventually I replaced that response with two others: a) ask myself “what can I learn from this experience?” and b) then tell myself to move on.

Thinking Sustainably

This one was incredibly simple, once I saw it, and gave a big payoff for a small change.

When I started pacing, I thought of my envelope in terms of what I could get done in a day without intensifying my symptoms. While that was helpful, over time I found that I was often tired by the end of a week, even though I had the same activity level every day. I concluded that the explanation was that the effects of exertion were cumulative.

My response was to ask myself what level of activity I could sustain over a week without worsening symptoms. Through experimentation, I found that to end the week with a same level of symptoms I began the week with, I had to reduce my estimation of the amount of activity I could do in any single day by about 10 to 15%.

Minimizing Relapses

No matter how consistently I lived within my envelope in the first two years I was ill, I would periodically find myself back in bed with symptoms that were so intense that I couldn’t do anything but pull the shades, lie down in darkness and wait for a better day. These periods, which usually lasted from one to three days, were greatly demoralizing as well as painful, mocking my attempts to gain some control and filling me with the worry that I would slide permanently downhill.

In discussing relapses with people in the self-help program and through experimenting with different strategies myself, I found there were many things I could do to reduce their frequency, severity, and impact. Learning how to minimize, and eventually to prevent, relapses was such an important part of my recovery that I’ve devoted chapter 12 to it.

Mastering Special Events

Pacing worked well most of the time, because I lived a predictable life, in which one day looked much like the next. But special events like vacations and holiday celebrations presented a challenge. While I could maintain a routine in my everyday life, some occasions pulled me out of my regular schedule. I developed three strategies in response to help me cope better with non-routine events.

1) Take Extra Rest: The most useful strategy was to rest before, during and after a special event. I stored up energy for a trip by doubling my normal daily rest time for a week before leaving. I limited my symptoms by taking extra rest during the trip. And I committed myself to taking whatever extra rest I needed after returning home. I also found that I could reduce the effects of driving and thus reduce the level of symptoms I experienced while away from home by taking a brief rest break every two hours.

2) Set Limits with Others: My trips went more smoothly when, after determining a safe activity level, I discussed my limits ahead of time with the people I traveled with. I found that others appreciated knowing what to expect from me, reducing the chances for surprise or disappointment. When they knew that I would spend part of each afternoon resting, for example, they could schedule an activity that didn’t involve me.

3) Adjust My Expectations: I was able to replace resentment about not being able to do all that I wanted to by focusing on what I could do. I consoled myself with the idea that half a loaf is better than nothing. Even if I weren’t able to do everything I did before becoming ill, making compromises enabled me to participate at times somewhat outside my envelope so that I increased my symptoms somewhat but didn’t suffer a bad flare-up.

In Summary

Overall, pacing brought a level of stability to my life that I wouldn’t have thought possible in the early months of being ill. By following a schedule that balanced activity and rest, I was able to replace a feeling that my life was out of control with the experience of predictability. I believe that the reduction in stress that resulted from having a stable life helped make my life even more stable. In short, pacing was the key to my recovery.

Pacing required a great deal of patience and a kind of faith. To stick with pacing, I needed to feel confident that my approach would pay off in the long run. Although it was very difficult at times to stay within my limits consistently, I resisted the temptation to hope for a quick recovery and I took consolation in my steady, if slow progress.