Meeting the Challenges of Long-Term Illness

Living Within Limits

By Bruce Campbell

The first challenge of chronic illness is learning how to live within 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.

A common reaction to the experience of restriction is the cycle of push and crash. When symptoms are low, people push to get as much done as they can. But doing too much intensifies their symptoms and they crash. The high level of symptoms leads to rest in the hope of reducing discomfort. This is usually successful, 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. 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.

The Push/Crash Cycle

This article and the next propose an alternative to the cycle of push and crash, a way to bring stability. Instead of fighting against or trying to ignore limits, the two-part strategy of finding and then honoring limits offers a way to gain some control. 

The Energy Envelope

One way to imagine your limits is the idea of the energy envelope. Your envelope is the energy you have available to accomplish things. Depending on the severity of your illness, your envelope might be half or perhaps only a tenth of what it used to be. Compare your current envelope with your expended energy, the energy you lose through physical, mental and emotional exertion. If you expend more energy than you have available, you will intensify your symptoms. This is called living outside the energy envelope, which usually 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. This is an upward spiral.

The Fifty Percent Solution

A second way to think about 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 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.

The Bowl of Marbles

A third idea is to imagine your available energy as a bowl of marbles. 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 do as well. For example, if you feel frustrated about how few marbles you have, the frustration will take some marbles, too. Stress is a big marble-user. Whatever you can do to lessen stress will help preserve your supply of marbles.

Charting Your Limits

The energy envelope, fifty percent solution and bowl of marbles offer ways to think about your limits in a general way. All three ideas suggest that honoring your limits gives you a way to gain some control over your symptoms. But how do you find your limits? The rest of this article outlines several strategies you can use.

You can get an idea of whether your current activity level is appropriate for your limits by spending a few minutes a day for a week charting your limits using the Envelope Log. This form can help you understand the relationship between your limits, your activity level, and your symptoms. 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 you can imagine.

The sample shows a form filled out for three days. Mornings are difficult for this person (symptom ratings usually moderate to severe). The chart also shows a push and crash cycle, with overactivity on Wednesday leading to increased symptoms. (Click on the following link for a printable version of the Envelope Log.) For more on the use record keeping, see “Learn to Predict the ‘Unpredictable’ ”. 

Establishing Limits One Activity At a Time

A technique for determining your 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 faint, you may have exceeded your limit for standing, perhaps because of a low blood pressure condition such as neurally mediated hypotension (NMH). If you are in pain, you may have exceeded your limit for chopping or may have held a tool inappropriately.

Developing a Detailed Understanding

You may be able to gain further control over your illness by developing a detailed understanding of your limits. One way is to read the following paragraphs and fill out the form at the end of the article. While you work through the categories, remember that 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. 

Illness 

To get a general idea of your limits, rate yourself using the CFIDS/Fibromyalgia Rating Scale. If there is a discrepancy between your score based on activity level and that based on symptoms, rate yourself using the severity of symptoms. Most students in our course have rated themselves between 25 and 45, but we have had people across the full range of the scale. Your situation will be more complicated if you have more than one ongoing medical condition. Also, short-term illnesses like colds may intensify CFIDS or fibromyalgia symptoms.

Physical Activity

Physical activity means any activity involving physical exertion. It includes things like housework, shopping, standing, driving, shopping 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. Then estimate how long you can do various specific activities such as housework, shopping, standing up, driving and exercise.

Mental Activity

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. 

Social Activity

Social activity refers to the amount of time we spend interacting with other people, which includes two types: 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 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? 

Finances

Finally, look at the sources of stress in your life, beginning with finances. 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. 

Relationships

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

This aspect include sensitivities to food and other substances, vulnerability to noise and light, and sensitivity to the 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

Long-term illness imposes limits. Fighting against or ignoring those limits usually produces an intensification of symptoms. Finding and honoring limits offers a way to gain some control. In either case, your actions affect your symptoms. The next article discusses pacing as a way to live successfully within limits.

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