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Many people with CFS and fibromyalgia feel caught in repeated cycles of push and crash. 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 and they overdo.

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 overdo again. Feeling frustrated at all they didn't do 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.

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 people with CFS because they often find that even small amounts of activity trigger a disproportionate increase in symptoms.

The Push/Crash Cycle

There is an alternative to repeated cycles of push and crash: pacing. Pacing involves understanding your limits and adapting to them. Pacing offers the possibility of a more stable and predictable life. With pacing, you can live your life according to a plan, rather than in response to symptoms, giving you a sense of managing the illness, rather than the illness controlling you.

This chapter describes the first of two steps to getting off the roller coaster: finding your limits. The next several chapters show you practical strategies for adjusting successfully to those limits.

Five Ways to Think About Limits

You can think of limits and living within them using a variety of images, metaphors and ideas. Here are five that people with CFS and FM have found useful.

The Energy Envelope

Imagine 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 element 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. This is called living outside the energy envelope. This approach commonly leads to the cycle of push and crash. Pacing, which offers an alternative, means to learn how to live inside the energy envelope by keeping your expended energy within the limits of your available energy. Of the five ideas, this one is our favorite.

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. He suggests you estimate how much you think you can accomplish each day, then divide that in two and aim to do the lesser amount.

Rather than challenging your limits, you keep your activity to a safe level. The unexpended energy is a gift of healing that you give your body. Collinge's idea is a clever way of addressing our tendency to overestimate what we can accomplish. Another benefit is that it gives you permission to take care of yourself.

The Energy Bank Account

A third way to think about limits is to imagine your energy as money stored in a bank account. Because of your CFS or FM, your account 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 CFS or FM may get only a few hours of energy from a night's rest.

The small amount of energy available makes it easy to spend more energy than you have and overdraw your account. There is often a big service charge (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. Vicki Lockwood explains how she uses this approach in her life in the article My Energy Bank Account.

The Bowl of Marbles

The bowl of marbles approach offers a similar idea with a different image. In this approach, you imagine your available energy as marbles in a bowl. Each marble represents a small amount of energy. You estimate your energy level each morning and put an appropriate number of marbles in the bowl. (Some people in our program have taken this idea literally, using marbles or coins stored in a bowl. Other people do calculations in their head.)

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.

The Spoon Theory

Another way to think about limits, and to explain the idea of limits to others, is called the Spoon Theory. It is described in an article by that title written by Christine Miserandino, a woman with Lupus. (A pdf of the article is available here.) She describes how she once explained to a friend what it is like to have a serious illness using spoons to symbolize available energy.

She gave the friend 12 spoons to symbolize her energy allotment for the day. With each task the friend imagined doing, Christine took away one or more spoons. The friend used half her spoons just getting ready to go to work. Her friend "was forced to make choices and think about things differently."

Christine contrasts her life to the life of healthy people. "When other people can simply do things,...I have to make a plan...Once people understand the spoon theory, they seem to understand me better."

Finding Limits

There are a variety of tools you can use to understand your limits. You'll find three below. If you are satisfied for now to have a general idea about limits, you can skip on to the next several chapters, 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 exceeded your limit for standing. In that case, you have learned something important that applies to many situations. 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.

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. 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.

Seeing that the effects of exertion were delayed taught me that I could not trust my body to send a signal at the time I went over my limit. This recognition also motivated me to use logging to define how much exercise I could do safely, so I could avoid symptoms by stopping when I had reached my limit.

Records can help you determine the varying effects of different activities. Some people with CFS or FM, 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 may be more restrictive in some areas than in others. Also, your pattern of limits will be different from that of someone else with CFS or FM.

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 people with CFS and FM 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

While it's useful to think of your limits in general and call that your "energy envelope," in fact you have many "envelopes," one for each part of your life. You can gain further control over your illness by defining your limit in each area. 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.

Your limits will be different from those of other people with your illness. Also, your limits will probably be tighter in some areas and less restrictive in others. For example, when I had recovered back to about 75% of normal overall, my exercise ability was about 35% of what it had been before I became ill.

Also, your cushion or margin of error may vary from one area to another. 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 especially tired the next day.

One way to understand your unique set of limits is to fill out the Energy Envelope form, which you can do after answering the questions in the rest of this chapter. You will find a sample form and a blank form at the end of the chapter. Printable copies of the Envelope form and all our other forms and worksheets are available on the Logs, Forms & Worksheets page in the Library.

The Energy Envelope form has five major sections.
 

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 Rating Scale in Chapter 2.

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, people with CFS and FM 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 other illnesses, 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 examine 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? And 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. If these ideas are true for you, you may be able to avoid triggering brain fog or other symptoms if you have two or more brief sessions a day rather than one long one or if you 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 (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.

Stress & Physical Sensitivities

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

The financial situations of people with CFS and fibromyalgia 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 payments from disability insurance may be a long and stressful ordeal. Those who succeed often worry that their disability status will be taken away. Others feel forced to work when their bodies are asking for rest.

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

The end of the Energy Envelope form consists of 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. Explains the bowl of marbles.

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

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9. Pacing Strategies

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