I experienced tremendous frustration in the first six months I was ill. I felt that I was living on a roller coaster, swinging between times of intense symptoms and periods of rest. When I felt an increase in my symptoms, I went to bed. When the symptoms subsided, I resumed a higher activity level. But even when I lowered my activity level to half of normal and then to a quarter, it was too much and I soon found myself back in bed. I was caught in a demoralizing cycle of overactivity and rest. Living in response to my symptoms, my life felt out of control.
At some point, I heard about the idea of pacing, which seemed to hold out the promise of stability as an alternative to repeated cycles of push and crash. Pacing meant finding the right balance of activity and rest, and applying that balance on an everyday basis. The key was to live a life that was planned, with a similar amount of activity and rest every day.
The idea of pacing required that I view my illness in a new way. Up until then, I had applied to CFS an approach used with previous illnesses, resting when I felt bad and resuming activity when I felt better. But pacing meant something different: having a consistent activity level rather than living in response to symptoms.
The idea of pacing fit well with the concept of the energy envelope and gave me a way to understand my cycles of intense symptoms and rest. Instead of thinking that fluctuations in my symptoms were random, I came to see that they were due to variations in my activity level. Initially, this idea was depressing, because it suggested that I had created a lot of my own suffering by being more active than my body could tolerate, making my symptoms worse. But then I realized that if my activity level affected my symptoms so directly, that effect should work in both directions; I might be able to reduce my symptoms by changing the way I lived.
I decided to adopt an approach that combined my old idea of resting in response to intense symptoms with the new idea of living according to a schedule. The use of planned rest was the most counterintuitive part of the new program, but the one that probably had the greatest impact. I believe that my daily planned rests were perhaps the single most important strategy I used to gain control over my symptoms. Rest was so crucial to my recovery that I have devoted the next chapter to it.
The idea of pacing fit perfectly with the idea of limits. The insights I had about the limits in different parts of my life, as explained in the last chapter, showed me what made symptoms worse and what was safe for me.
Pacing also fit with the record keeping I did (the topic of Chapter 10). Having written documentation in my health log of the effects of activity and rest both proved the effects of activity and motivated me by showing how I was gaining increased control. I wanted to link cause and effect, and assumed that I could document my limits by finding connections between my activity level and my symptoms. When I was healthy, my body told me to slow down by creating a sensation of fatigue. But that often wasn't true with CFS. I might feel no increase in fatigue during my daily walk, but then be very tired a few hours later. Records showed me my limits when I could not trust signals from my body to do that.
The lack of trustworthy signals from my body was one of the chief reasons having a scheduled life made sense to me. In the absence of reliable real-time information from my body, living according to a schedule was a better course than living in response to symptoms. Keeping records gave me a way to determine a safe activity level.
Sticking to Pacing
It was hard to live consistently within strict limits. When I started pacing, I functioned at about 25% of normal. My improvement averaged one or two percent a month, with periods of several months when I could barely see any improvement. But since I believed that pacing offered my best chance for long-term improvement, I developed several strategies to help me live consistently within my limits.
Perhaps the most useful was to visualize how I would feel if I went outside my envelope. Imagining the fatigue and brain fog provided a counterweight to the immediate pleasure I anticipated from doing something that took me beyond my limit. I pictured and felt the consequences of doing too much by imagining myself lying in bed in pain.
Record keeping also helped me live within my limits. Having written proof of the effects of my actions helped me to hold myself accountable for my actions. 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.
A third strategy was routine. Having a regular schedule 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. A related idea is what I call having rules for specific situations. For example, 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. Another was to avoid noisy places. Having that rule gave me permission to leave noisy restaurants.
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.
Finally, I tried to be forgiving with myself. I didn't always stay in my envelope. But, instead of beating myself up for failing, I decided it was better to just to say "what can I learn from this experience" and move on.
This approach 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 progress, even if it was at a very slow rate.
Pacing worked well most of the time, because I lived a predictable life. 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 a number of strategies in response to help me cope better with non-routine events. Most applied mainly to travel.
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, as mentioned in the last chapter.
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.
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.
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 followed 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 think it likely 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.