Learning Pacing Strategies
By Bruce Campbell
There are many ways to adapt to the limits imposed by illness. Here are nine to consider.
Reducing Overall Activity Level
The primary strategy for adjusting to limits is to reduce your overall activity level. For example, if you assess yourself as 30 on our Rating Scale (about the average for people who have taken our class), your activity limit is about three hours a day.
To keep your activity level within your limit, consider using a combination of delegating, simplifying and eliminating. Delegating means finding someone else to do a task that you used to do.
For example, family members might share in meal preparation or grocery shopping, or a cleaning service could take over housecleaning. Sources of help include family and friends, hiring someone, or using community resources, such as religious groups or service clubs.
Simplifying means continuing to do something, but in a less elaborate or complete way. For example, you might clean house less often or cook less complicated meals. Finally, you may decide to eliminate some activities or relationships.
For some people, this might involve adjustments like suspending your volunteer work or putting some friendships on hold. For others, there might be more far-reaching changes, such as reducing hours, leaving work entirely or taking early retirement.
Setting Limits
To translate activity limits into practice, many people set limits on particular activities. As noted above, this can mean that you stop doing some things entirely and reduce the amount of time spent on others.
An example of the former is given in Eunice Beck's article Making a NOT TO DO List. Constructing a list of things you no longer want to do gives you permission to take things off your "should do" list, eliminating activities without feeling guilty about it. Having a "not to do" list gives you a justification for taking steps to protect your health.
Eunice Beck includes in her list "not volunteering or being manipulated into commitments that I know will be a strain on my energy and pain level." She also lists putting the needs of others before her own.
Another article shows the power of setting time limits on individual activities. Bobbie Brown's 25 Reasons Why I've Improved describes how she increased her functional level from about 15% of normal to about 35% or 40%. Two items in Bobbie's list refer to medications, but most of her strategies involve changes in her daily habits and routines.
She uses pacing techniques, such as taking regular, scheduled rests and living within limits. Almost half her items are techniques for setting limits on herself, including limits on: driving, computer and phone time, stress and sensory input, socializing, travel, household and family responsibilities.
Short Activity Periods
In addition to controlling symptoms through limiting your overall activity level, you can affect your symptoms by adjusting how you are active. For example, two short periods of work with a break in between can produce more and leave you feeling less symptomatic than the same amount of time expended in one block.
For example, if you want to chop vegetables, you might experience no pain if you stop after ten minutes, but pain that lasts for hours if you continue for 30 minutes. You can determine your own individual limits by experimenting. Try doing a task for different lengths of time (say five, ten or fifteen minutes) and note your symptom level after each.
The same principle can be applied over longer periods of time. You may find, for example, that your overall symptom level is lower if you spread activities through the week, rather than trying to do many things in one or two days.
It is still possible to accomplish a lot even with very short activity periods, as shown by the experience of one person with strict limits. Through experimenting, she found she could work at her computer for only 15 minutes at a time before feeling ill.
She decided to have four work periods a day of 15 minutes each for a total of one hour. By working steadily in this way, she avoided the push/crash cycle and completed the translation of two documents from Chinese into English. Later, she was able to expand her work periods from four to eight a day.
Activity Shifting
Another strategy for getting more done is to shift frequently from one activity to another, for example switching between physical, mental and social activities. For example, if you find yourself tired or confused after working on the computer for a while, you might stop and call a friend, or go to the kitchen and start fixing dinner.
Another way to use task switching is to divide your activities into different categories of difficulty, switch frequently among different types and schedule only a few of the most taxing activities each day. Here's what one student does:
I divide activities into light, moderate and heavy, and then plan my day to alternate activities in the different categories. By pacing myself in this way, I can do more and minimize my symptoms. In fact, I'm amazed at all I can now do in a day.
Honoring Time of Day
You may be able to increase the amount you get done, without spending more time or intensifying your symptoms, by changing when you do things so that you use your best hours for the most important or most demanding tasks. Most people with ME/CFS and FM find they have better and worse times of the day.
Some people start the day slowly; they are at their best in the afternoon. For others, morning is the best time. One person in our program reported that her best time is early in the day. She said, "I have a window between 8 and 11 in the morning that is best for most activity, both mental and physical."
Another person, who was bothered by the effects of brain fog on her ability to read, found her best time of day for mental activity was in the afternoon. If she studied then, she could read for twice as long as in the morning, with a higher level of understanding.
Setting & Sense Overload
Many patients have an increased sensitivity to sensory information, especially light and sound. They find their concentration is affected by having too much sensory input. If this is true for you, you may be able to get more done and experience a lower symptom level if you focus on one thing and simplify your environment.
For example, you may be able to understand what you read better if you turn off the TV while reading or move to a quiet place. If noisy restaurants bother you, try visiting during slack times. If you find large groups difficult, try getting together with only a few people. If media bother you, limit your exposure, especially to movies and TV.
Sitting & Using Devices
If you tire or feel faint while standing, consider sitting down whenever possible, for example to prepare meals and while showering (use a plastic stool or chair for the latter).
You may be able to get more done, avoid symptoms or both by using devices to help you. Some patients whose tolerance for standing is low, who are sensitive to sensory input or both find shopping easier if they use a scooter or motorized cart. Many large stores have such devices, which they make available for free.
One person in our program reported that using a motorized cart made a big difference for her. Before using the cart, she would be so tired from her weekly grocery shopping that she would lie down for two hours as soon as she returned from the store. When she used the cart, she didn't need any rest at all after grocery shopping.
Experimentation: The ME/CFS/FM Scientist
One of the key ideas for successful coping is to see your life with ME/CFS or FM as a series of experiments. In searching for medications to help you control symptoms, you will probably have to try several to find one that is helpful and may have to adjust dosage levels. The same approach applies to lifestyle adjustments: trying different things to find what works for you.
We call this strategy being your own ME/CFS or fibromyalgia scientist, a process in which you are both a researcher and your own research subject. Given the tremendous variation in symptoms and severity among ME/CFS and fibromyalgia patients, developing an individualized approach to your illness, one based on your unique circumstances, offers the best chance for improvement.
Keeping Pleasure in Life
Be sure to include pleasure in your list of activities. Living with a chronic condition means ongoing discomfort and frustration. Pleasurable activities reduce frustration and stress, distract you from your symptoms and undermine the thought that illness brings only suffering. For all these reasons, enjoyable experiences make it easier to live within your limits.
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