Note: This article is reproduced with Dr. Campbell’s kind permission from his CFIDS & Fibromyalgia Self-Help website.
Living with CFS or fibromyalgia is frustrating. Not only do the two conditions bring pain and discomfort, they also impose limits. If we fight against or try to ignore those limits, the result is an intensification of symptoms.
This article proposes another way to live with CFS or FM. I'll suggest how finding and honoring your limits (your energy envelope) can give you some control and improve your quality of life.
The Energy Envelope
To use the idea of the energy envelope, think of your situation as having three elements. The first is your available energy. This is the energy you have to accomplish things. It is limited and is replenished by rest and food. The second is your expended energy, the energy you lose through physical, mental and emotional exertion.
The third is your symptoms, fatigue, brain fog, pain, and so on. In this view, if you expend more energy than you have available, you will intensify your symptoms. This is called living outside the energy envelope. An alternative is living inside the energy envelope. If you keep your expended energy within the limits of your available energy, you have a chance to reduce symptoms, and over time may be able to expand your limits.
Many students in our program have found it helpful to think of their life using the idea of the energy envelope in this way. To explain higher than usual symptoms, they may say "I was outside my envelope this week." This statement may sound like an admission of defeat, but it implies the possibility of control: if you can live differently, you may be able to gain greater control of your symptoms.
Finding Your Limits: A Quick Answer
If you would like a general idea of your limits, rate yourself on the CFS & Fibromyalgia Rating Scale. Most of the students in our course have rated themselves between 25 and 45 at the start of the course, but we have had people across almost the full range of the scale.
Everyone's Situation is Different
Each person's limits are different, because each person's situation is unique. To understand your limits, I suggest you look at three factors.
The first, which you can think of as the medical aspect of your situation, is your illness or illnesses. While some people have just CFS or fibromyalgia, about two thirds of the people in our program struggle with two or more medical problems.
The most common pattern is people who have CFS and fibromyalgia, but frequently people who have one or both of these conditions also have one or more other medical issues, such as arthritis, back and spinal problems, depression, food and chemical allergies, irritable bowel syndrome (IBS), myofascial pain, sleep disorders like apnea and restless legs syndrome, and thyroid problems. (For more, see our article on Overlapping and Related Conditions.)
Long-term illness is much more than a medical condition. The second factor that defines your unique situation is your general life circumstances. Illness will have a different impact depending on such things as your stage in life and family situation. In this context, finances and support are particularly crucial.
Some patients find their financial situation to be similar to what it was before they became ill. They may be supported by a spouse or receive disability payments that replace their previous income. For others, however, financial pressures can be great, even overwhelming. Some may live alone, trying to get by on little or no income. Others may feel forced to work when their bodies are asking for rest.
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Patients' levels of support can vary greatly also. The term "support" applies to both practical and emotional help. Practical support may mean assistance with tasks such as grocery shopping, cooking and cleaning. Emotional support means feeling that someone understands and cares.
Some patients have supportive spouses or other family members, while others may find themselves in stressful circumstances. Some people have good friendship networks, others not. Many patients' level of support can be improved through effort.
The third factor is coping skills. Your ability to live well with chronic illness depends in part on your own resourcefulness. We have seen many people respond to adversity with flexibility and resilience. Luckily coping skills, like other skills, can be learned and improved through practice.
In summary, each person's situation is different. Your limits will be shaped by your particular combination of illness, financial and family circumstances, and coping skills. While some factors are fixed, support and coping skills can be improved over time.
A Bowl of Marbles & The Spoon Theory
If the idea of the energy envelope isn't appealing, you might consider other ways to think about your limits. Some people, for example, like to visualize their limits. One version of this approach is to imagine available energy as a bowl of marbles. With this image, you see yourself as having a limited number of marbles to use each day.
The number may vary from day to day. With each activity, you mentally take one or more marbles out of the bowl. Physical activity uses up your supply, but mental and emotional activity do as well. For example, if you feel frustrated about how few marbles you have, the frustration will take some marbles, too.
Another way to think about limits is called the Spoon Theory, which is explained in an article written by a Lupus patient. She describes how she once explained her limits to a friend by having the friend imagine that each task she did used up limited energy, symbolized by a fixed number of spoons.
Two Ways to Expand Limits
The fact that frustration uses marbles shows that the way we react to events can affect the amount of energy available to us. If we can respond in a relaxed manner to stressful situations, we can preserve energy that might otherwise be dissipated in tension and anxiety.
A student in one of our classes gave a good example. At a birthday party one year, 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 similar party a year later, 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.
How we rest can affect the energy available to us, too. Taking a short rest break to recharge batteries can expand the number of productive hours in the day. Also, we may be able to avoid a long period of "downtime" by taking a brief rest as soon as an intensification of symptoms begins.
A dramatic example of the value of taking frequent short rests was provided by one of our students. At the beginning of the 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. Her flexible approach enabled her to expand her envelope.
Dr. Bruce Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site (www.cfidsselfhelp.org) offers articles, low-cost online Self Help courses in moderated discussion group format, and free follow-up programs & support.