Recovery from Chronic Fatigue Syndrome

The key facts about CFS were the combination of the tight limits it imposed and the high cost of exceeding those limits. Here’s an 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, even on good days, 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. But the more I fought my 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.

But what were my limits?

Overall Limits: The Energy Envelope

My transition to a 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 (since renamed Solve ME/CFS Initiative). 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 0 to 100 Rating Scale I developed.

My self-ratings changed only a few points at most each month, 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 if I wanted to avoid increasing my symptoms.

The other idea from my early 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. Over time, I also came to think that his idea was based on the recognition that those of us with CFS often have an unrealistic idea of our capabilities and thus may be helped by a strategy that lowered our expectations .

Developing a Detailed Understanding: The Little Envelopes

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 define my limits in detail rather than just thinking of my overall Envelope. This change was triggered by some people in the self-help program pointing out 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 without worsening my symptoms? 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?

I was also concerned to find my limits in other areas. In addition to those just mentioned, I included activity limits (which I defined as how long I could do various activities like housework, shopping, driving, and spending time with people), food sensitivities, sensitivity to light and noise, and emotions.

In the self-help program, we have come to call these specific limits the Little Envelopes, with several to many specific limits in seven different major categories:

• Physical activity
• Mental activity
• Social activity
• Sensory limits
• Stress
• Emotions
• Heart rate

During my recovery, I focused on a dozen areas that I tracked 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, before the form had been finalized.

Sleep	7 1/2 hours, starting by 11 pm
Daytime Rest	10-30 minutes on most days, sometimes more
Activity	4 hours a day. Activities like errands & housework OK in moderation
Exercise	30 minutes walking OK on level ground
Reading & Computer	Reading OK most of time, but must limit time on computer, especially at night
Driving	Limit about 2 hours, sometimes tired after 30 minutes
Standing	Limit 1 hour, whether walking, shopping, cooking
Socializing	Usually OK with one person or small group but respond strongly to some people and vulnerable to stressful encounters
Other Illnesses	Make CFS symptoms 30-50% worse. Secondary illnesses are more severe now than before
Emotions	More easily upset than before. Strong emotions trigger CFS symptoms
Stressors	Life mostly stable at present, thankfully
Food	Haven’t found any food sensitivities so far. Diet same as before
Sense Data	Noisy settings and loud noises are very bothersome, e.g. restaurants

Later I added a section that had three parts. The first summarized my abilities and limits. The second noted my greatest vulnerabilities (for example, stress, secondary illnesses, and travel). And I used the third to list short-term goals. This section was a helpful summary of my current situation and also suggested where work might give the biggest payoff in reduction of symptoms.

In studying my envelope, I was surprised to find 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.

(For more on the Energy Envelope and the Little Envelopes, see the series of articles Pacing: What It Is and How to Do It, the articles in the Pacing archive, and the success story How I Manage My Many Energy Envelopes, all on the self-help program website.)

Learning Through Experiments

One way I found my envelopes 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 and the lessons I learned from them.

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 the same level.

In Sum…

Overall, the idea of the Energy Envelope was very useful, perhaps the most important idea in my recovery. It motivated me to understand my limits in detail as the foundation for regaining control. And it inspired me to develop the many pacing strategies you’ll read about shortly which gave me the ability to adapt to my limits and thus escape from push and crash.