Meeting the Challenges of Long-Term Illness

Pacing: An Alternative to Push and Crash

By Bruce Campbell

The push and crash cycle described in the last article can be demoralizing. It’s frustrating and depressing to feel caught in a closed loop, cycling helplessly between overactivity and rest. But there is another way to live with chronic illness. You can lead a more stable and predictable life by pacing yourself.

Pacing means finding the right balance of activity and rest for your unique situation. With pacing, you can learn to 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 an alternative to the repeated cycles of push and crash, a way to flatten out the chronic illness roller coaster.

Scheduled Rest (Pre-emptive Resting)

Let’s begin with the rest part of the activity and rest equation. You are probably familiar with using rest as a way to recover from overactivity. But rest can be used in another way as well, as a preventive measure and a way to help you gain control. By taking planned rests on a regular basis, you may be able to prevent flare-ups or reduce their intensity. For some people, rest can even promote recovery. We call taking scheduled rests on a regular basis pre-emptive resting.

By rest I mean lying down with your eyes closed in a quiet place. This is different from watching TV or reading, which are low-level activities. They may require less energy than housework, errands, or paid work, but they are activities nonetheless.

Pre-emptive rest means setting aside time on a regular basis to lie down, in contrast to resting in reaction to symptoms. This type of rest is done as part of a daily routine, a time you set aside to nurture yourself. You will gain maximum benefit if you are consistent, making rest a part of your day routine regardless of how you feel. It can be tempting to skip the rest when you are feeling good. At such times, it may be helpful to remind yourself that by resting now you are avoiding symptoms in the future.

Scheduled rests have been one of the most frequently used strategies among people who have taken our course. Although the length of rest varies from person to person, for most people pre-emptive rests means taking one or two rest breaks a day of 15 minutes to half an hour. Some students take brief rests every few hours during the day.

If you find that your mind is active while you lie down, you might consider using a relaxation technique or meditation practice during your rest. Most people who have done this have found that combining mental with physical relaxation deepens the restorative power of rest. (Several relaxation techniques will be described in a future article in this series.)

Activity Scheduling

Another pacing strategy is activity scheduling. Just as you may be helped by scheduled rests, you may be able to accomplish more without intensifying your symptoms by planning your activities. Here are several techniques our students have found useful.

Short Activity Periods & Spreading Activity

You may be gain better control your symptom level if you break up your activity. 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. The same principle can be applied over longer periods of time. You may find that your overall symptom level is lower if you spread out activities through the week, rather than trying to do many things in one or two days.

Activity Shifting

Another strategy for getting more done is activity shifting. Some patients use this idea to move from one type of activity to another, switching between physical, mental and social activities. If you get tired working on the computer, for example, you may be able to call someone or prepare part of dinner.

Other patients divide their activities into different categories of difficulty: light, moderate and heavy. They schedule only a certain number of the most taxing activities a day and make sure to switch frequently among the three different types. One student says: “I plan my day to alternative 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.”

Time of Day

You may be able to increase the amount you get done without spending more time or intensifying symptoms by experimenting with when you do things. Many patients find they have better and worse times of the day. Probably the most common pattern is a gradual improvement as the day wears on, with a slowing down in the evening. But for some patients mornings are the best times of day, for others evenings. What is important is that you find your best time of day.

This principle applies to both physical and mental activity. One student reported on her experience with exercise: “If I walk in the evening, I can make it around two blocks, but three has me collapsing. Early in the day, I can do three or more. I have a window between 8 and 11 in the morning that is best for most activity.”

Another student reported on her experiments with time of day and mental activity. This person was bothered by the effects of brain fog on her ability to read and retain information. When she read in the morning, she lasted for only half an hour and she had trouble remembering what she read. Then she decided to begin her afternoons with a brief rest, finding she had good mental stamina from mid-afternoon through most of the evening. If she studied during that time, she could read for two 30-minute sessions with a short break in the middle, and retain the information afterward. Experimenting with time of day enabled her to double her study time and increase her comprehension.

Planning

Over time, you can extend pacing from individual activities to your whole lifestyle, by living your life according to a schedule of activity and rest. To implement this approach involves planning in advance what you are going to do for a day and a week, and then sticking to it as much as possible. The goal is to move over time toward consistency in both activity and rest: doing a similar amount of activity each day and also taking similar amounts of rest. To the extent you can live according to your plans rather than in response to symptoms, you will achieve a more predictable life, gain an increasing sense of control over your illness, and may be able to expand your energy envelope.

You might start by planning a day at a time. This involves setting priorities. Priorities give you a way to decide what to do when you can’t do it all. In the morning or, even better, the night before, list possible activities for the day. Then evaluate your list, asking whether you will be able to do everything on it without intensifying your symptoms. For those items that you can’t do or can’t do in the same way as before, try thinking in terms 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. 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 elaborate meals. Finally, you may decide to eliminate some activities or relationships. Perhaps you can suspend your volunteer work or drop some friendships.

When you plan your day and live your plan, your symptoms are likely to come under better control and you may be tempted to do more. This temptation is part of the push and crash cycle that you are trying to break. Remember that the goal is to have a consistent level of activity, rather than to push hard when feeling well, then crashing when symptoms intensify.

I recommend that you set your activity level in terms of time, rather than waiting until your body tells you with higher symptoms that you have done too much. Often the body gives misleading signals. You may feel fine even after you have gone outside your envelope. The effects of overexertion are often delayed, so that you cannot rely on your body telling you when to stop. If you find your limits through experimentation, you can avoid crashing by being active for a length of time you have found to be safe.

The Psychology of Pacing

The idea of pacing is easy to agree with, but pacing can be hard to practice. What can you do to increase your chances of living consistently within your energy envelope, if you believe pacing is desirable but have trouble doing it consistently? When we ask people who have been successful at pacing, they report using the following strategies.

Visualize Consequences: One way that people get pulled outside their limits is by giving in to the temptation to do too much. A way to avoid such lapses is to visualize how you would feel if you go outside your envelope. One person said: “Feeling the fatigue and brain fog provides a counterweight to the immediate pleasure I anticipate from doing something that takes me beyond my limit.” 

Schedule and Routine: Having a regular daily schedule has eliminates a lot of decision making. One student said: “Instead of having to ask whether something is or is not within my envelope, I have tried to stick to a schedule I know is safe.” 

Personal Rules: Some people develop individualized  rules for specific situations. One person in our groups reported setting several rules for herself: no more than three trips outside house per week, no driving beyond 12 miles from her house, and no phone calls longer than 20 minutes. Rules means not having to think and also reduces the power of spontaneity to overwhelm good judgment.

Keep Records: A health log can be a mirror you hold up to yourself, providing both positive and negative motivation. Having written proof of the effects of your actions can help you to hold yourself accountable for your actions. Also, you can use your health log as a positive motivator, providing proof that staying inside your limits pays.

Listen to Body: You can gradually retrain yourself to respond differently to the signals sent by your body. Instead of “pushing through” when you feel tired or in pain, you can learn to see symptoms as signals that it is time to rest.

Forgive Yourself: No one stays in her envelope all of the time. Instead of beating yourself up when you slip, it's better to just to say "what can I learn from this experience" and move on.

Non-Routine Events

Non-routine times like vacations and the holidays present special challenges to people with chronic illness. It can be tempting to do everything you did when well, but this usually leads to a flare-up. On the other hand, you don’t want to eliminate the good times altogether. How can you handle special events in a way that allows you to enjoy them, but without paying too heavy a price? When we have discussed this issue in our groups, we have heard the following strategies.

Take Extra Rest: The most common strategy is to rest before, during and after a special event. Store up energy by taking extra rest before the trip or event; limit symptoms by taking extra rest during; and take whatever extra rest is needed after.

Set Limits with Others: After you have decided your level of participation, communicate with others so they know what to expect from you. If you discuss your limits with others ahead of time, you can reduce the chances for surprise or disappointment. Consider staying in a hotel instead of with relatives for privacy and easier control over your activity level.

Delegate: One way to enjoy a trip or special event is by passing tasks on to others. If you are accustomed to doing all the cooking for a holiday celebration, ask family members to each bring a dish. While traveling, allow others to drive.

Adjust Your Expectations: Replace resentment about not being able to do all that you want by focusing on what you can do. One student said: “I have benefited from the idea that half a loaf is better than nothing.” 

Summary

Pacing by balancing activity and rest offers a way to manage your illness so that you lead a more stable and predictable life.

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