Recovery from Chronic Fatigue Syndrome

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 activity, but no matter what I did, I couldn’t seem to escape the cycle of push and crash.

Even when I lowered my activity level to half of normal and then to a quarter, it was still 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.

I didn’t have the words to understand my experience at the time, but I later recognized that my activity was triggering Post-Exertional Malaise (PEM), the intensification of symptoms caused by overdoing. As I mentioned earlier, the key fact about PEM is that the intensification is out of proportion to the overdoing. All I knew at the time was that punishment for activity felt so unfair!

Pacing as an Alternative

At some point, I heard about the idea of pacing, which involved living according to a schedule that combined similar levels of activity every day with planned rests. Pacing held out the promise of stability as an alternative to repeated cycles of push and crash, and it gave me a way to understand the cycles of intense symptoms followed by rest. The heightened symptoms were caused by overdoing, which triggered PEM, which in turn forced me to rest.

Understanding this cycle of push and crash led to a depressing realization: I had unknowingly created a lot of my own suffering by being more active than my body could tolerate. But then I realized that if my activity level affected  my symptoms so directly, that effect should work in both directions. If living one way intensified symptoms, living differently should enable me to reduce my symptoms.

Pacing offered the possibility of a more stable and predictable life, a way to live life according to a plan, rather than in response to symptoms. The benefits of pacing as I understood it included:

• Lower symptoms
• Less suffering
• More stable and predictable life
• Sense of control
• Less time spent resting (because less PEM)
• More productive use of time (because less PEM)
• Chance for improvement

The Three Parts of Pacing

Over time, I came to see pacing as having three parts, which you’ll read about in detail over the next several chapters:

1 Finding My Limits or Energy Envelope

CFS imposes limits and exacts a punishment if a person goes outside those limits. There are limits on physical activities and also limits in other areas, such as mental activity and socializing. The challenge in this part is to define those limits.

2 Adapting to The Limits

The second part of pacing is adjusting your life to live within limits in order to avoid Post-Exertional Malaise (PEM). I realized that learning to live within my new limits would be a gradual process, likely involving the use of multiple strategies. Over time, I came to see that this part also meant learning how to minimize relapses and how to manage non-routine times, such as travel, which often trigger relapses.

3 Expanding My Limits

My hope was that by treating my body well and avoiding overdoing, I would be able to expand my limits over time, doing more without intensifying my symptoms. As you’ll read, I found that the keys to expanding my Envelope were to extend my limits a little bit at a time and to return to my previous level if the extension increased symptoms.