Finding Your Limits
By Bruce Campbell
Pacing, which involves understanding your limits and adapting your life to them, is widely recommended as perhaps the most effective treatment for Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM). This series describes how to define your limits and shows you practical strategies for successful adaptation.
Pacing vs. Push and Crash
Pacing is a contrast to another way of living with CFS and FM: the cycle of push and crash. Many people with CFS and FM feel 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, retiring to bed to recover. Rest relieves symptoms, but then, feeling frustrated at all they didn't accomplish while resting, they overdo again, repeating the cycle of push and crash.
The Push/Crash Cycle
Pacing offers an alternative to push and crash, a way to flatten out the roller coaster. With pacing, you can live your life according to a plan, rather than in response to symptoms, so you have a sense of managing the illness, rather than the illness controlling you. Pacing offers the possibility of a more stable and predictable life.
The Energy Envelope
We will discuss limits using the term the energy envelope. Your energy envelope is the energy you have available for physical, mental and emotional effort. It is limited and replenished by food and rest. CFS and FM typically reduce energy levels by half or more.
Your energy level can be understood in relation to two other elements: your expended energy and your symptoms. Expended energy is the energy you use in physical and mental activity, and lose through worry. If you expend more energy than you have available, you will intensify your symptoms. We call this living outside the energy envelope.
Pacing means to learn how to live inside the energy envelope by keeping your expended energy within the limits of your available energy. Pacing offers a way to control symptoms and may lead to an expansion of the envelope.
Finding Limits: A Quick Answer
To get a general idea of the size of your energy envelope, rate yourself on the ME/CFS & Fibromyalgia Rating Scale. (If there is a discrepancy between your score based on activity level and your score based on symptoms, rate yourself using the severity of your symptoms.)
Your rating gives you an idea of how much activity your body can tolerate. The rating also suggests how extensively you will have to adjust your life. If you rate yourself 30 or lower, you have a severe case of CFS and/or FM. You can probably be active two hours a day or less. You face significant adjustments.
If you rate yourself between 35 and about 60, you can be active three to seven hours a day. You have a moderate case. Some people with moderate cases can work on a part time basis. If you rate yourself above 60, you have a mild case. You may be able to work full time, likely with some limits and some adaptation of your life.
Developing a Detailed Understanding
You can gain a deeper understanding of your envelope by defining your limits in different parts of your life. Such an understanding can give you a thorough knowledge about what you have to do to minimize symptoms and increase your chances for improvement. Why do this?
You will likely find that your limits vary from one part of your life to another. When I thought I had recovered overall to about 75% of normal, my exercise ability was about 35%.
Developing a detailed description of your limits is a long-term project. It may take months, a year or even longer. It's fine to begin by estimating your limits in different areas. Over time, you can replace estimates with more accurate figures by using record keeping, as described at the end of this article.
One system for defining limits is the Energy Envelope form. (For a sample using an earlier version of the form, see our self-help book in Online Books.) The form asks you to describe yourself in four different areas:
- Illness
- Activity
- Sleep and Rest
- Stress
- Illness
What medical conditions do you have? Most people diagnosed initially with CFS or FM are later diagnosed with the other. People with either condition often have additional medical issues as well. Having multiple medical problems complicates living with CFS or fibromyalgia, but treating other conditions often lessens CFS/FM symptoms.
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.
Illness
CFS / FM
Other chronic illness
Acute illnesses
Physical, Mental and Social Activity
Activity refers to how much you can do without making yourself more symptomatic. Assess yourself for each of three types of activity: 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.
Physical Activity
Number of hours per day (overall)
Good/bad times of day
Housework
Shopping
Standing
Driving
Exercise
Mental activity means activities requiring concentration, like reading or working on the computer. 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? You may be more productive at mental tasks if you have two or more brief sessions a day rather than one long one or if you do mental only during your good hours.
Mental Activity
Total time per day
Time per session
Best time
Social activity refers to the amount of time you spend interacting with other people, either in person or on the 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.
Social Activity
In person limit per day & per week
Limits on setting
Limits on size of group
People I enjoy
People I find difficult
Phone time limit per day
Phone time limit per call
Sleep and Rest
This factor refers to the quantity and quality of both sleep at night and rest during the day. To understand your sleep limitations, ask:
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? Rest means lying down with eyes closed in a quiet environment. (Read more on rest in the third article in this series.) Ask yourself how much time you spend resting, how many rest periods you have and the effects of rest.
Sleep and Rest
Hours of sleep
Bed time / Rising time
Sleep quality
Number and length of daytime rests
Stress
CFS and FM add new stresses to life and make people more sensitive to stress. This last area asks you to rate your overall stress level (1=no stress, 10=most stress I can imagine) and your vulnerability in three areas: money, relationships and physical sensitivities. The last includes sensitivity to food and other substances, vulnerability to noise and light or to sense input from multiple sources, and sensitivity to weather.
Stress
Overall stress level
Money
Relationships
Sensitivities: Food/Noise/Light/Weather
Establishing Limits One Activity at a Time
To find your limits in each area, 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 (often the effects of activity are delayed). 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 (and may have discovered another medical issue: orthostatic intolerance). If you are in pain, you may have exceeded your limit for repetitive motion or may have held a tool inappropriately.
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