As mentioned in the last chapter, CFS and fibromyalgia impose limits. People with CFS and fibromyalgia have less energy than before becoming ill, plus other limits created by symptoms such as pain and poor sleep. The limitations range from relatively small disruptions of life to severe restrictions that render people housebound. Living successfully with these illnesses requires understanding your body’s new requirements and then adjusting to them. The process of accepting limits and learning to live a different kind of life usually takes several years.

During this time, many patients find themselves caught in a vicious cycle of push and crash, swinging between overactivity and rest. Their symptoms and their reactions to them interact to keep them caught in a frustrating loop. (See diagram.) When their symptoms are low, they push to get as much done as they can. But doing too much intensifies their symptoms and so they crash. The high level of symptoms leads them to rest in order to reduce discomfort. This is usually successful, since rest reduces their pain, fatigue and other symptoms. But, then, feeling frustrated at all they didn’t accomplish while resting, they plunge into another round of overactivity to catch up. This, in turn, causes another intensification of symptoms, so they experience another crash.

The Push/Crash Cycle

Living in response to symptoms, they are caught on a demoralizing roller coaster in which high symptoms alternate with periods of extended rest, and they feel out of control. This cycle can be especially frustrating for CFS patients because they often find that even apparently small amounts of activity trigger a disproportionate increase in symptoms. Unfortunately, this phenomenon, called “post-exertional malaise” or excessive fatigue after activity, is one of the most common features of CFS.

Living within Limits

This chapter describes the first of two steps to getting off the roller coaster: understanding your limits. Fighting against or trying to ignore those limits usually produces an intensification of symptoms. Finding and honoring limits offers a way to gain some control and may lead to an expansion of limits. In either case, your actions have consequences. The things you do and the way you live have effects on your symptoms, reducing them if you honor your limits or intensifying them if you don’t.

You can think of limits using a variety of ideas. In our program, we often use the concept of the energy envelope, but it’s only one way to symbolize limits. Perhaps you will find another way more helpful. Here are four ways to imagine your limits.

The Energy Envelope
First, think of your life as composed of three elements. One is your available energy, the energy you have to accomplish things. This is your energy envelope. It is limited and is replenished by rest and food. Your illness has reduced it, typically by at least half. The second is your expended energy, the energy you lose through physical, mental and emotional exertion. This is the resource you have to accomplish things. The third is your symptoms: fatigue, poor sleep, pain, brain fog, and so on.

In this view, if you expend more energy than you have available, you will intensify your symptoms. We call this living outside the energy envelope. This approach commonly leads to the cycle of push and crash. 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 use the idea of the energy envelope in this way. To explain higher than usual symptoms, they say something like, “I was outside my envelope this week.” Statements like this can help people hold themselves accountable for the consequences of their actions. The idea of the envelope also implies the possibility of control. If you can live differently, you may be able to reduce your symptoms.

The Fifty Percent Solution
A second way to think about, and live within, limits is called the Fifty Percent Solution, described by William Collinge in his book Recovering from Chronic Fatigue Syndrome. Each day, estimate how much you think you can accomplish. Then, divide this in two and aim to do the lesser amount. Rather than challenging your limits, you discipline yourself to a safe level of activity. The unexpended energy is a gift of healing that you give your body.

The Energy Bank Account
A third way to think about limits is to imagine your energy as money stored in a bank account that has a very low balance. While healthy people are able to store up energy for a day’s activity with seven to eight hours of rest at night, people with chronic illness may get only a few hours of energy from a night’s rest. That makes it easy to spend more energy than you have and overdraw your account. There is often a big service charge, in the form of intense symptoms, if you overdraw your account. Once you’re overdrawn, you have to deposit more to your account in the form of rest. Alternatively, if you budget your time and control the amount of energy you spend, you can save some energy for healing.

The Bowl of Marbles
A fourth approach is to imagine your available energy as a bowl of marbles, as described by Linda Jean Frame in Your Personal Guide to Living Well with Fibromyalgia. This image may be helpful if you like the idea of visualizing your limits in concrete terms. If so, imagine your available energy as marbles in a bowl. (Some people in our program have taken this idea literally, buying marbles and putting them in a bowl.) Each marble represents a small amount of expendable energy. Estimate your energy level each day and put an appropriate number of marbles in the bowl. The number will vary from day to day, but is always limited.

With every activity, you take one or more marbles out of the bowl: one for showering, one for dressing, etc. Some projects take more marbles than others. Also, the same task may require more marbles on bad days than on good days. Physical activity uses up your supply, but mental and emotional activity consume marbles as well. For example, if you feel frustrated about how few marbles you have, your frustration will use up some of your marbles. Stress, tension and fear are all big marble-users. Whatever you can do to lessen them will preserve your supply of marbles for other uses.

Visualizing your available energy as a bowl of marbles can help you set priorities. You probably don’t have enough marbles to do everything you want to do. Seeing the limited number in the bowl can motivate you to prioritize, choosing to do those things that are most important to you. Also, some days are more draining than others. If your bowl is empty, it’s probably time to rest.

Finding Limits

The rest of the chapter offers a variety of tools you can use to define your unique limits. If you are satisfied for now to have a general idea about limits, you might skip on to the next chapter, which describes strategies for gaining control by pacing. If you are looking for ways to understand your limits in detail, read on.

Charting Your Envelope
You can get an idea of whether your current activity level is appropriate by spending a few minutes a day for a week charting your limits using the Envelope Log. This simple form can help you understand the relationship between your limits, your activity level and your symptoms. (See the sample below. For a printable version of this form, go to the Envelope Log page.)

To use the form, rate yourself on a scale of 1 to 10 for three elements:

            a) Energy level (available energy)

            b) Activity level (expended energy)

            c) Symptom level

On this scale, 1 represents, respectively, no energy, no activity or no symptoms, and 10 represents the energy of a healthy person of your age, a high activity level or the worst symptoms imaginable.

You can fill this out once a day or more frequently. Using it three times a day can help you see variations in your energy level and symptom level. You might find, for example, that your energy improves and your symptoms decline as the day goes on or vice versa.

The sample shows the form filled out for three days. Mornings are difficult for this person. On Monday and Tuesday the “am” reading for symptom level was moderate to severe. The sample also shows the push and crash pattern. On the first two days, the person kept her activity level within the limits of her available energy. Her symptom level dropped as the day progressed. Feeling good on Wednesday morning, she tried to make up for the days spent resting by “catching up” (activity level of 5). The result of her overactivity was a severe level of symptoms, starting in the afternoon.

Establishing Limits One Activity at a Time
Another technique for discovering activity limits is to establish your limits one activity at a time. You may know that you get tired if you spend too long fixing meals, for example, or after doing errands or housework, or after talking to people. But you may not know when "too much" arrives. A way to answer the question is to focus on one activity at a time, keeping a simple record of time spent and symptoms.

For example, you may believe you can stand in the kitchen for 10 minutes while fixing meals. To test this idea, note your starting and ending time while preparing food, and how you feel during and after. If you find you are worse, 10 minutes may be too much. If you feel OK, you may be able to extend the time.

If you feel worse, it’s important to understand why. If you are feeling weak or lightheaded, you may have orthostatic intolerance, a condition that often accompanies CFS and fibromyalgia. If you are in pain, you may have exceeded your limit for repetitive motion or may have held a tool inappropriately.

Discovering Limits with Logging
A good strategy for determining your overall activity limits is to keep a health diary or log. Record keeping gives you a way to record what you do from day to day and to see the consequences. A log helps you recognize linkages between activity level and symptoms. You can find a detailed discussion of logging in Chapter 7. In this chapter, I’d like to make some general comments about record keeping.

Keeping written records can help you in various ways. A simple diary can show you how many hours of activity and what types of activity you can do safely in a day. It can help you determine whether the effects of your activity are delayed and whether there are cumulative effects over several days or a week. For example, record keeping helped me to recognize that I often experienced delayed effects from exercise. I would feel no increase in my symptoms during exercise if I walked more than usual, but I had a higher than normal level of symptoms later in the day or even the next day. The experience taught me that I could not trust my body to send a signal when I was doing too much; I felt the effects of overexertion only later. I also learned from experience that if I went slightly outside my energy envelope for several days in a row, I would experience higher symptoms only at the end of that period.

Records can help you determine whether some activities are more tiring than others. Some patients, for example, have difficulty with exercise, while others become nauseous after a short time on the computer, and still others become ill if they drive more than short distances. Your limits will be tighter in some areas and looser in others; also, your pattern of limits will be different from that of another patient.

Self-observation can also help you become aware of the effects of mental and emotional events, as well as physical activities. Many people with CFS and fibromyalgia find themselves easily tired by activities that require concentration, like balancing a checkbook, reading or working on the computer. Emotional events, such as worry, anger, conflict with others and depression, can be especially tiring.

Record keeping can help you recognize subtle links as well. For example, some patients have observed a surprising connection between their activity level and sleep. They find that if they are too active during the day, they become hyper-alert (“wired”) and can’t fall asleep. This is the opposite of what might have been true before they became ill, when lots of activity produced fatigue and a good night’s rest.

Counterintuitive realizations like this often come to light only through detailed records.

Developing a Detailed Understanding

You can gain further control over your illness by developing a detailed understanding of your limits. Such an understanding can give you a thorough knowledge about what you have to do to minimize symptoms and increase your chances for improvement. It can also highlight your areas of greatest vulnerability, and thus help you set priorities for change. You may discover, for example, that good sleep is crucial to controlling symptoms or that minimizing stress has a dramatic effect on how you feel. Whatever the specific factors in your situation, this approach can help you recognize them. You can use the detailed understanding of your unique limits to improve your quality of life.

Developing a fully detailed description of your limits is a gradual process. It may take months, a year or even longer. But every discovery you make will be useful; any understanding you develop can help you feel better now. And that is the goal: to improve your quality of life now.

One way to understand your unique limits is to fill out the Energy Envelope form after asking yourself the questions in the rest of this section. You will find a sample form and a blank form at the end of the chapter. Also, printable copies of the Envelope form and all our other forms and worksheets are available on our website. See the instructions in References at the end of the chapter.

What you learn from filling out the Envelope form can give you a fresh perspective on your illness. You might discover, for example, how many hours a day of activity you can tolerate or how many times a week you can leave the house safely. Alternatively, you might use your answers to help you set new priorities. You might decide that poor sleep was the crucial issue for you. In that case, you could focus on getting good rest. Or, you might find that a stressful relationship needs to be addressed.

Everyone has a different set of limits, one that depends on their unique medical circumstances and their individual life situation. The limits you experience will be different from those of other people with your illness. Also, your limits will probably be tighter in some areas and less strict in others. For example, when I had recovered to about 75% of normal overall, my exercise ability was about 35% of what it had been before I became ill.

Also, your cushion may vary from one area to another. “Cushion” is the margin of error we have. Some people find that even small mistakes in some areas of their lives bring on a severe, disproportionate intensification of symptoms. For example, if they stay up an hour later than usual, they are wiped out the next day. Dean Anderson reported that, during his recovery from CFS, he carefully calibrated how much exercise was safe. If he did more than that, he experienced a relapse that started a day later and lasted a week or more. He said that one time he took a hike and “the penalty was a relapse of several months.”

We will look at limits as a combination of five factors:

Illness
This factor refers primarily to the severity of your chronic illness or illnesses. The pattern and strength of your CFS and/or fibromyalgia symptoms determine your safe level of activity. To get a good initial idea of a safe activity level, place yourself on the CFS/FM Rating Scale. As a reality check, you might ask someone who knows you well to rate you, too, and compare the two ratings. We have found that, on average, patients rate themselves five to ten points higher than other people rate them.

The illness factor also refers to the presence of other illnesses and to the interactions between your CFS or fibromyalgia and other illnesses. Having multiple medical problems complicates living with CFS or fibromyalgia. If you have other ongoing illnesses besides CFS and/or fibromyalgia, record them on the form, too. Also, short-term illnesses may interact with CFS and fibromyalgia. One common pattern is for CFS and FM symptoms to be intensified by acute illness, although sometimes there is a delay, so that CFS or fibromyalgia symptoms flare up as the acute illness is waning.

Activity
This factor refers to how much you can do without making yourself more symptomatic. We will discuss activity in three areas: physical, mental and social.

Physical activity means any activity involving physical exertion. It includes things like housework, shopping, standing, driving and exercise. To define your limits in this area, estimate how many hours a day in total you can spend in physical activity without intensifying your symptoms. Because the effects of exertion can be cumulative, you might ask yourself how many hours a day you could sustain over a week without worsening symptoms. Also, you can note whether some parts of the day are better than others. Some people find activity may be safe during “good” hours of the day, but produce symptoms at other times. Then, estimate how long you can do various specific activities such as housework, shopping, standing up, driving and exercise.

Mental activity means activities requiring concentration, like reading, working on the computer or balancing a checkbook. Three questions to ask in this area are: How many hours per day can I spend on mental activity? How long can I spend in a single session? What is my best time of day for mental work? Some people, for example, find they can work at the computer for 15 minutes or half an hour without problem, but that they experience symptoms if they work longer. They may be more productive at some times of the day than at others. These people may be able to avoid triggering brain fog or other symptoms if they have two or more brief sessions a day rather than one long one or if they work on the computer only certain times of the day.

Social activity refers to the amount of time you spend interacting with other people. I suggest you think of social activity in two forms: in person and other (e.g. phone and email). Questions to ask yourself about each type include: How much time with people is safe for me in a day? In a week? Is the amount of time dependent on the specific people involved and the situation? (You may tolerate only a short time with some people, but feel relaxed around others.) For in-person meetings, you might also ask yourself whether the setting makes a difference. Meeting in a public place or with a large group may be stressful, but meeting privately or with a small group may be OK.

Sleep and Rest
This factor refers to the quantity and quality of both sleep at night and rest during the day. To understand how you’re doing in this area, ask questions like: How many hours of sleep do I need? What is the best time for me to go to bed and to get up? How refreshing is my sleep?

Daytime rest means lying down with eyes closed in a quiet environment. Questions in this area include: How many hours of daytime rest do I need? How many rest periods do I have? How refreshing are my rests?

Feelings & Moods
This factor refers to the emotions we feel, especially worry, depression, anger, and grief. Questions in this area include: What emotions are important in my life right now and how intense are they? This factor also refers to the sensitivity we have to emotionally charged events and people. Some situations may trigger stronger reactions in us now than when we were healthy. These reactions may intensify symptoms because emotionally charged events can trigger the release of adrenaline, which often worsens symptoms.

Stressors
This category refers to the sources of stress in our lives. Three are crucial: finances, relationships, and physical sensitivities.

The financial situations of CFS and fibromyalgia patients vary enormously. Some find their financial situation to be similar to what it was before becoming ill. For them, money may not be a stressor. For others, however, financial pressures can be great, even overwhelming. Some may live alone with little income. Getting disability insurance may be a long and stressful ordeal. Even those who succeed worry about losing it. Others feel forced to work when their bodies are asking for rest.

Having a chronic illness changes relationships, creating new obligations and also new strains and frustrations. Your family and friends may or may not understand you. Relationships can be great sources of support and help, sources of stress, or both.

Physical sensitivities include sensitivity to food and other substances, vulnerability to noise and light, and sensitivity to weather and the seasons. Questions in this area are: Do I have allergic reactions to food? Am I chemically sensitive? Am I sensitive to sensory overload: noises, light, or stimulation coming from several sources at the same time (for example, trying to have a conversation with music playing in the background)? Am I affected by the seasons or changes in the weather?

Summary, Vulnerabilities and Goals
You will find at the end of the Energy Envelope form three sections that can help you pull together what you have learned and plan for the future. The first, titled Summary, gives you a space to summarize briefly how you are doing at present.

The second, Vulnerabilities, asks you to focus on the factors that make your symptoms worse and those that trigger relapses. When we do this exercise in class, we often get answers like the following: doing too much, poor sleep, financial problems, stressful relationships, uncertainty about the future, food and chemical allergies, sensory overload, time with people, family responsibilities, travel, and other illnesses.

The third section, Goals, gives you a place to identify the areas you intend to work on in the near future.

References

Arthritis Foundation. Your Personal Guide to Living Well with Fibromyalgia. Marietta, Ga: Longstreet Press, 1997.

CFIDS and Fibromyalgia Self-Help website: See article “Finding Your Energy Envelope.” 

Collinge, William. Recovering from Chronic Fatigue Syndrome. New York: Perigree, 1993.

King, Caroline, Leonard Jason, and others. “Think Inside the Envelope,” CFIDS Chronicle 10 (Fall, 1997): 10-14.