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By Bruce Campbell

(First in a four-part series on the use of planning to manage long-term illness.)
 

For people caught in cycles of push and crash, alternating between periods of overdoing and times of forced rest, pacing offers an alternative: a path to predictability and lower symptoms.

 

Pacing often begins with putting limits on individual activities or taking scheduled rests, but over time it can become a lifestyle as you learn to live according to a plan rather than in response to symptoms. Implementing this approach involves planning in advance what you are going to do for a day and a week.

 

The goal is to move gradually toward consistency, doing a similar amount of activity each day and taking similar amounts of rest. To the extent you can live according to your plans, you will achieve a more predictable life, gain an increased sense of control over your illness, and may be able to expand your energy envelope.
 

A good place to start is by planning a day at a time. In the morning or 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. If not, identify items that can be postponed, delegated or eliminated.

 

One person in our program described her planning as follows: "Every evening I list my appointments and possible other activities for the following day. By doing this, I can recognize activities that I really don't have to do, but that can be postponed. This frees up my days for my targeted rest time."

 

As she mentions, scheduled rest periods are an integral part of pacing. They should be integrated into your day as a regular part of your schedule. You will smooth out your life if you make rest consistent, setting aside certain times of day for rests of certain lengths of time. The idea is to rest by plan, rather than in response to symptoms.

 

Ironically, it is likely that you will reduce your rest time by planning your rest. This is because pacing reduces your crashes and crashes produce Post-Exertional Malaise or PEM. PEM is an intensification of symptoms that is out of proportion to overdoing and which requires extended periods of rest to overcome.

 

Toni Bernhard, a person with ME/CFS, offers an example of the cost of Post-Exertional Malaise in the preface to her book How to Be Sick, saying that "some days I would get so involved in a chapter that I'd work too long. The result would be an exacerbation of my symptoms that would leave me unable to write at all for several days or even weeks."

 

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 crash when symptoms intensify.

 

For an example of pacing, see Rosemary Rowland’s success story titled Third Time's a Charm: How I Learned to Pace Myself. Rosemary uses a daily schedule to maintain consistency in her life, with similar amounts of activity and rest each day. She reports that her efforts resulted in an increase in her activity level of about 50% over a two year period and that she now needs less rest.

 

The Daily Schedule worksheet gives you a way to translate your understanding of capabilities and limits into a daily routine of activities and rest. It’s available on our Logs, Forms & Worksheets page.
 

When you feel comfortable planning one day at a time, try moving on to planning longer periods, such as a week. The challenge here is to estimate what level of activity you can sustain over a period of time without worsening your symptoms.

 

“Sustain” is the key word, since the effects of exertion are often delayed by hours or even days and the effects of activity can be cumulative. The latter means that even if it’s possible to be active, say, four hours one day without intensifying symptoms, it may not be possible to maintain that level for a week.

 

You can find your sustainable activity level through experimentation, trying different amounts of activity and noting the results.

 

As mentioned above, Rosemary Rowlands reports that her use of pacing resulted in an increase in her activity level of about 50% over a two year period. She attributes the improvement to a combination of factors that include making detailed daily and weekly schedules, being consistent in her use of the schedules, having several daily rest periods and keeping records.