To me, the key facts about CFS were the combination of the tight limits it imposed and the high cost of exceeding those limits. For example, before getting sick, I enjoyed hiking, up to 20 miles a day. In the early months of my illness, I could walk for only 15 or 20 minutes a day on my good days, and 30 minutes might send me to bed for an hour.
CFS felt like a rigid and unyielding force, a feeling that initially gave me a sense of powerlessness. The more I fought the limits, the worse I felt. Like many other people with CFS, I learned that if I tried to ignore my body, my symptoms were intensified greatly. After a while, I concluded that my best hope lay in adjusting to my limits. Ironically, yielding to the illness gave me some power. By listening to my body and honoring its limits, I was able to achieve some stability and to begin regaining control of my life.
The Energy Envelope
My transition to this more productive way of living with CFS was aided greatly by two ideas. The first was the concept of the Energy Envelope, which I found in an article in the CFIDS Chronicle, the magazine of the CFIDS Association of America. Titled "Think Inside the Envelope," the article suggested that people with CFS have limited energy, but that they can gain some control over symptoms by keeping the energy they expend within the limits of their available energy. The authors called this "living inside the energy envelope."
For some time, I used this idea in a general way and found it very helpful. I would ask myself whether doing something would take me "outside the envelope" or whether I was living "inside the envelope." I used this idea in combination with monthly evaluations using a Rating Scale I developed. (The scale was based on a similar rating system in Dr. David Bell's book The Doctor's Guide to Chronic Fatigue Syndrome.) My self-ratings changed only a few points each month at best, suggesting that my improvement would be slow. Rating myself was like looking in a mirror. It showed me how far from normal I was and reminded me that I could be active only a few hours a day without increasing my symptoms.
The other idea from my reading was the Fifty Percent Solution, a concept I found in the book Recovering from Chronic Fatigue Syndrome, by William Collinge. He suggests that people with CFS estimate each day how much they can accomplish and then aim to do half of that. Rather than repeatedly stressing your body by trying to do more than it can tolerate, you aim to limit yourself to a safe level of activity. The unexpended energy is a gift to your body. I appreciated his giving permission to do less and his reframing a lower activity level as something positive.
Developing a Detailed Understanding
Using the term Energy Envelope was a reminder both of my limits and of my ability to control my symptoms to some degree by staying within those limits. After a while, however, I decided to try to understand my limits in detail. This change was triggered by some people in our program pointing out to me that mental activity and stress could be just as draining as physical activity. So I began to ask myself a series of questions in order to get a fix on my limits and needs in different areas of my life. I asked myself: how much mental activity (reading or computer work, for example) can I do in a day? how much in a single session? what are the stressors in my life? how much sleep do I need at night? how much daytime rest? how long can I drive safely? how long can I stand at one time without intensifying my symptoms? how far can I walk?
I was also concerned to find my limits in other areas. In addition to those just mentioned, I included activity limits (which I define as how long I could do various activities like housework, shopping and spending time with people), food sensitivities, sensitivity to light and noise, and emotions.
Over time, I ended up with a list of about a dozen items that I listed for myself on a form called "My Energy Envelope." It took me at least a year to develop this more detailed understanding, but I felt rewarded all along the way because every limit I defined helped me gain more control. I filled out the form once every several months and found it a helpful way to assess how I was doing in some detail. Here's a sample of my energy envelope from the second year of my illness.
Later I added a section to the end of my definition, in which summarized my abilities and limits, noted my greatest vulnerabilities (for example, stress, secondary illnesses and travel) and set goals for myself. This section was a helpful summary of my current situation and also suggested where work might give the biggest payoff in reduction of symptoms. (For more discussion of the envelope and instructions on how to complete an energy envelope form, see the Energy Envelope chapter in The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia. The self-help program's website contains an archive of articles on the Envelope and pacing.)
In studying my envelope, I was surprised to learn that my limits were more restrictive in some areas than in others. For example, when I thought I had recovered back to about 60% of my pre-illness level overall, I could do only about 30% as much exercise.
I found it very helpful to share my envelope definition with family and close friends. Getting other people's views of my situation helped me to be more realistic in my self-assessment and also helped others to understand me better.
Learning Through Experiments
One way I found my envelope was by trying experiments and keeping records. Experimentation was such an important part of my approach that I devote all of Chapter 11 to it. For now, let me give a few examples of experiments I tried and the lessons I learned.
By walking at different times of day, I discovered that exercising in the afternoon was much less likely to lead to higher symptoms than exercising in the morning. The realization led to the conclusion that time of day was crucial: when I did something could be as important as how much. When I tried extending my walks, I observed that I sometimes felt fine during the walk but experienced strong symptoms afterwards or had to take a nap later in the day. That experience helped me to realize that the effects of activity might be delayed, so to understand my limits I had to be attentive to how I felt later as well as during and right after an activity. I also observed that sometimes the effects of activity were cumulative, so that I might feel tired after several days of exercise at a certain level.
Expanding the Envelope
Even though my envelope expanded very slowly overall, I found some ways I could expand my activity level immediately. I just suggested one: by being attentive to time of day. But I found several others by observing my experience and by listening to other people with CFS.
A person in one of our first groups reported that something she tried at a birthday party had made a big difference in her energy level. At a similar party a year earlier, 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 party held during the course, 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 taught me that if I could respond in a relaxed manner to stressful situations, I could preserve energy that might otherwise be dissipated in tension and anxiety.
The same person also taught me that how we rest can affect the amount of energy available to us. When she started our course, she was resting six hours during the 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.
Daily planned rests was one of the most powerful tools I found for controlling symptoms and will be the subject of Chapter 9. Let me mention here one way I used the idea, to expand my envelope for travel. I found that if I stopped for a ten to fifteen rest for every two hours of driving, I arrived fresher at my destination and had a lower symptom level throughout my trip. Another way that rest helped me increase my envelope was to take a brief rest as soon as my symptoms became more intense. That strategy enabled me to avoid a long period of "downtime," so that by giving in to my symptoms I reduced my total rest time.
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 scheduled of activity and rest, reducing the surprises and emotional shocks in my life, thereby reducing my stress.
Overall, the idea of the energy envelope was very useful. It helped me to accept the limits imposed by CFS and also motivated me to understand my limits in detail. Acceptance and understanding led eventually to regaining control.