The CFIDS & Fibromyalgia Self-Help Book By Bruce Campbell, Ph.D. Director of the CFIDS/Fibromyalgia Self-Help Program Reprinted with permission from the CFIDS/Fibromyalgia Self-Help Program: CFIDSselfhelp.org.
Chapter 5: The Energy Envelope
Many people with CFIDS and fibromyalgia feel 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. 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; rest reduces their pain, fatigue and other symptoms. But then another cycle begins. 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 CFIDS 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 the illness.
The Push/Crash Cycle Living Within Limits This chapter proposes an alternative to the cycle of push and crash, a way to bring stability to a life with chronic illness. This alternative is based on the idea that illness imposes limits. People with CFIDS 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. 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. The key concept is that what you do has an effect on your symptoms, reducing them if you honor the limits or intensifying them if you don’t. You can imagine your limits using a variety of ideas. In our class, we use the concept of the energy envelope. I’ll explain it and also describe three other ways to think about limits.
The Energy Envelope You can think of your situation as having three elements. Your available energy is the energy you have to accomplish things. This is your energy envelope. 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. 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 think of their life using 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 and also imply the possibility of control. If you can live differently, you may be able to control your symptoms.
The Fifty Percent Solution A second way to honor limits is called the Fifty Percent Solution, described by William Collinge. Each day estimate how much you think you can accomplish. Then divide this in two and aim to do this 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.
Your Energy Bank Account A third way to think about limits is to imagine your energy as money. Imagine that your energy is stored in an energy bank account, which 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 thus “overdraw” your account. There is often a big “service charge” in terms 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 to control how much energy you spend, you can save some energy for healing.
The Bowl of Marbles The fourth approach is to imagine your available energy as a bowl of marbles. (See Linda Jean Frame’s discussion in the Arthritis Foundation book mentioned in the references.) This image may be helpful if you like the idea of visualizing your limits. If so, imagine your available energy as marbles in a bowl. The number may vary from day to day, but for each day you have a limited number of marbles to use. With every activity, you mentally take one or more marbles out of the bowl. 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 use them up also. For example, if you feel frustrated about how few marbles you have, the frustration will take some marbles, too. So if you can reduce your frustration, you will save some marbles for other uses. Stress is a big marble-user. Whatever you can do to lessen stress will preserve your supply of marbles. 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. Also, some days are more draining than others. Visualizing an empty bowl may help you give yourself permission to take some time off.
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 having a general idea of limits, you might skip on to the next chapter, which describes strategies for getting off the roller coaster. If you are looking for ways to understand your envelope in detail, read on.
Charting Your Envelope You can get a general 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. Scale: 1 = no energy, no activity or no symptoms 10 = energy of healthy person, high activity level or worst symptoms imaginable 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 you had when healthy, 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. Most days the “am” reading for symptom level was moderate to severe. It 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.” 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 determining 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.
Establishing Overall Activity Limits 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. It helps you recognize linkages between activity level and symptoms. We will look at logging in detail in Chapter 7. For now, I’d like to make some general comments. Record keeping 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 cumulative over several days or a week, and whether there is a delay between when you do something and the time you feel the effects. Also, 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. In short, record keeping can help you understand the many factors that contribute to your symptoms. Self-observation can also help you become aware of the effects of mental and emotional events, as well as physical activities. Many people with CFIDS and fibromyalgia find themselves easily tired by activities that require concentration, like balancing a checkbook, reading or working on the computer. Emotional events 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 sleep poorly at night. This is the opposite of what might have been true before they became ill, when lots of activity could produce a fatigue which led to a good night’s rest. Counterintuitive realizations like this often come to light only through careful observation.
Developing a Detailed Understanding While the general idea of honoring limits can be helpful, you may be able to 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 your 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 step you take 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 ask yourself the questions in the next several sections. (You can record your answers on the Energy Envelope form, available for printing in pdf form.) What you find 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. Then you could focus on getting good rest, in the hope that it could help you control your symptoms. Or you might find that a stressful relationship needs attention. In any case, the idea is to begin a process that will lead eventually to an answer to the question: What can I do without intensifying my symptoms? 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, limits in some areas of your life will probably be less strict than those in other areas. And 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.
We will look at limits as a combination of five factors: Illness Activity Sleep and rest Feelings and Moods Stressors
Illness This factor refers primarily to the severity of your chronic illness or illnesses. The pattern and strength of your CFIDS 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 CFIDS/Fibromyalgia Rating Scale. As a reality check, you might ask someone who knows you well to rate you, too, and compare the two ratings. The illness factor also refers to the presence of other illnesses and to the interactions between your CFIDS or fibromyalgia and other illnesses. Having multiple medical problems complicates living with CFIDS or fibromyalgia. If you have other ongoing illnesses besides CFIDS and/or fibromyalgia, record them on the form, too. Also, short-term illnesses may interact with CFIDS and fibromyalgia. One common pattern is for symptoms to be intensified by other illnesses, although sometimes there is a delay, so that CFIDS 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. Two 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? 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 able to avoid triggering brain fog or other symptoms if they have two or more brief sessions a day rather than one long one. Social activity refers to the amount of time you spend interacting with other people. We suggest you think of social activity in two forms: in person and by phone. 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. In terms of sleep, it is the answer to 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 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. In sum, 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 in one or two sentences 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/Fibromyalgia Self-Help website: See two-part article “Finding Your Energy Envelope.” King, Caroline, Leonard Jason, et al.. “Think Inside the Envelope,” CFIDS Chronicle 10 (Fall, 1997) pages 10-14. Collinge, William. Recovering from Chronic Fatigue Syndrome. New York: Perigree, 1993. *Envelope Log available here: http://www.cfidsselfhelp.org/envelope_log.pdf (c) Bruce Campbell. All rights reserved. Reprinted with permission.