Key 4: Find Your Limits

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By Bruce Campbell

(Note: From the series Ten Keys to Successful Coping: 2005.)

Living with ME/CFS or fibromyalgia can feel like a ride on a roller coaster, as you swing between times of intense symptoms and periods of relief. When symptoms are low, you may push to get as much done as you can.

But doing too much often leads to a crash. If you try to make up for lost time once you feel better, the cycle starts again, leaving you with the feeling that your life is out of control.

This article describes an alternative to this frustrating cycle of push and crash, a way to bring stability and some control to life. By finding and honoring the limits imposed by your illness, you are likely to gain some control over it.

The Energy Envelope

One way to imagine your limits is using 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.

If the energy you expend in physical, mental and emotional exertion is greater than your available energy, 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. This is an upward spiral.

The Fifty Percent Solution & the Bowl of Marbles

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 limit yourself to a safe level of activity. The unexpended energy is a gift of healing that you give your body.

A third idea is to imagine your available energy as a bowl of marbles. You have a limited number of marbles to use each day. The number may vary from day to day. Physical activity uses some, but mental and emotional activity do as well.

With every activity, you take one or more marbles out of the bowl, remembering that stress is a big marble-user and so lessening stress will preserve your supply of marbles for other uses.

The overall idea in all three concepts is that our limits force us to set priorities in order to control symptoms and gain stability. All three concepts allow you to see your situation in a way that gives you permission to do less in order to improve quality of life.

Defining Your Energy Envelope

To get a general idea of your envelope, rate yourself using the ME/CFS & Fibromyalgia Rating Scale. This will give you a quick estimate of how many hours a day of activity you can sustain safely. (By way of comparison, most students in our course have rated themselves between 15 and 45, but we have had people across the full range of the scale.)

If you want a more detailed understanding, ask yourself about three different types of activity: physical, mental and social. You will have unique limits for each and may be less restricted in some areas than in others.

Physical activity means any activity involving physical exertion, including housework, shopping, standing, driving and exercise. You may find it helpful to determine your limits in each of these specific areas.

For example, you might experiment to determine how much exercise you can do or how long you can do housecleaning without making your symptoms worse.

It is also helpful to understand how the effects of exertion can be cumulative over a period of days or a week, and whether some parts of the day are better for you than others.

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?

(You may be able to avoid triggering brain fog or other symptoms if you break up your mental work into two or more sessions a day. This principle also applies to physical tasks like cooking or housecleaning.)

Social activity refers to the amount of time you spend interacting with other people, both in person and by phone. Questions to ask yourself about each type include: How much time with people is safe for me? Is the time dependent on the specific people involved and the situation? Does the setting make a difference (restaurant vs. at home)?

Another key area is rest, which means both sleep and daytime rest. For the former, ask yourself: How much sleep do I need? What is the best time to go to bed and to get up? For daytime rest, ask how much you need in total and how many rest periods.

Everyone's Situation is Unique

Each person's limits are unique, because each person's situation is different. To get a comprehensive understanding our your limits, consider not only the limits discussed above but also your life situation.

Illness will have a different impact depending on such things as your stage in life and your 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.

Support levels 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 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 that are not conducive to getting better. Some people have good friendship networks, others not. So when you are trying to understand your situation, look at the stresses in your life and the quality of your relationships.

Getting Started

If you want to define your energy envelope in detail, you might begin by rating yourself in the 12 areas I describe in Finding Your Energy Envelope, Part 2 or use the concepts offered in the Succes Stories by Dean Anderson and JoWynn Johns.

In any case, the goal is to assemble a detailed understanding of your limits, so you know what you individually have to do to minimize symptoms and increase your chances for improvement. Such a description can also highlight your areas of vulnerability and thus help you set priorities. Whatever your circumstances, taking a systematic approach can help you understand your unique situation.

Learning Through Experiments

One way to understand your envelope is by trying experiments and keeping records. Let me illustrate by describing what I learned from my experience in the area of exercise. By walking at different times of day, I discovered that exercise in the afternoon was much less likely to lead to higher symptoms than exercise in the morning.

The observation helped me to realize that when I did something could be as important as how much. Also, I observed that sometimes when I felt no symptoms during my walk I felt them later, sometimes so strongly that I had to take a nap later in the day.

That experience helped me to realize that the effects of activity might be delayed, so that to understand my limits I had to be attentive to how I felt later as well as during and right after an activity. In all these ways, I learned from my experience.

In Summary

Your Energy Envelope is your unique set of physical, mental and emotional limits. Understanding your limits is one step in learning how to control your symptoms and get off the illness roller coaster.