More Strategies for Special Events

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By Bruce Campbell

The previous article outlined three pacing strategies you can use during special events to avoid triggering a relapse. This article explains the strategies in more detail.

Take Extra Rest: Before, During and After the Event

If you have experienced the push-crash cycle and post-exertional malaise, you are familiar with one use for rest: to recover from relapses. But there is another way you can use rest: to prevent problems.

Taking planned rests on a daily basis can help you reduce your symptoms, gain stability and, ironically, reduce your total rest time. We call this practice pre-emptive rest or PER.

The idea of setting aside time every day for rest may seem counter-intuitive. You may think "But I already rest so much, why should I do more," or "Why should I rest even if I feel OK? Isn't that giving in to my illness?"

The answer is that by stopping before you fall over the cliff, you can gain control and bring predictability to your life. You use PER to avoid PEM (Post-Exertional Malaise)..

"Rest" means lying down with your eyes closed in a quiet place. The optimal length of the rest period and the number of rests per day vary from person to person. Many people take one or two rest breaks a day of 15 minutes to half an hour each. To quiet their minds, some people use a relaxation procedure or listen to music while resting.

Rest can also be effective if it is taken as soon as symptoms appear. A person in our program was cooking a big pot of chili one day and became very weak and tired. He was close to finishing and his first thought was "Finish the job; it will only take another 10 minutes."

Then he remembered similar episodes when he ignored the signal and ended up needing to rest for two or three hours. So he turned off the heat under the chili, lay down for 15 minutes.

When he got up, he felt fine and needed no more rest that day. Fifteen minutes of rest taken in response to listening to his body enabled him to avoid two or three hours of rest later.

Plan the Event in Detail

The second strategy for mastering special events is detailed planning. You might apply this to the holidays in five steps.

1) Make a List: List everything special you would like to do between Thanksgiving and New Year's: shopping, decorating, cooking/baking, writing and mailing cards, attending parties and services, entertaining. For each item, include an estimate of the time it will take.

For example, you might estimate that it will take 10 hours to send out holiday cards, including buying the cards and stamps, writing notes in some or all of the cards, stamping and addressing the envelopes, and mailing.

Breaking each task into sub-tasks can help you to be more accurate in your time estimates and also suggests a strategy for minimizing the possibility that an activity will cause a relapse: divide a job into a series of small steps.

2) Prioritize: Once you have the list, prioritize the items from those that are most important to you to those that are least important. You can use numbers (from 1 to 20, say) or letters (A, B, C, etc.)

3) Define Your Limits: To help you decide how much of your list is reasonable, determine how active you can be without intensifying your symptoms. (One way to do this is to place yourself on the ME/CFS & Fibromyalgia Rating Scale.) For example, if your limit is three hours a day and you would like to use 1/4 of your time on holiday activities, that would mean about 5 hours a week.

4) Adapt Your List to Your Limits: If your wish list is beyond your limits, reduce it using a combination of delegating, simplifying, substituting and eliminating. Delegating means finding someone else to do a task.

For example, a spouse, child or friend might do some of the shopping. The family could put up decorations while you "supervise." Or you can organize holiday meals in different ways, for example by having someone else prepare them, having a potluck or going out to eat.

Substituting can involve dropping one activity for every added activity (pigs at a trough). For example, if you can get out of the house three times a week, you may be able to do a holiday-related activity if you postpone something else. Another form of substitution is to use devices, for example shopping online rather than in person, using a scooter rather than walking around stores or having a handicap parking tag.

Simplifying means continuing to do something, but in a less elaborate way. For example, have less elaborate meals or (overlapping with the next item) define your holidays as involving fewer events. Finally, eliminating means not doing something. If the time needed to do all the items on your list is greater than your envelope, this last strategy will be a central part of your planning.

5) Create Your Plan B: Lastly, think about how you will handle a relapse if you experience one part-way through the holidays. The two most used strategies are increased rest and the elimination of activities. One way to implement that a back-up plan is to alternate busy days with rest days.

Discuss Plans with Others

The last strategy for special events is to involve others and gain their acceptance for your plans.

This often involves educating others about ME/CFS and FM, a task that can take some time and is not always successful. One person in our program gave copies of a brochure about ME/CFS to her husband and adult children, asking that they read it as their birthday present to her one year. Although the process took a year, one by one her family members came to accept her ME/CFS.

Another person reported that he has come to accept that he must give frequent reminders to his family about his limits. And a third person commented that learning assertiveness has been crucial to her family's acceptance of her FM.

She explains that "for a long time, I told my family that I had a serious condition, but I also always said Yes to their requests. They didn't start to honor my limits until I put limits on what I would do for them."

The last comment suggests that pacing means not just altering what we do, but also how we think. We have to make mental adjustments in how we understand ourselves and then translate those into action. One adjustment is to find an appropriate standard to compare yourself to.

One person reported that he felt guilty about how little he got done in comparison to healthy people. Reading about koala bears, he learned that "they spend 16 to 18 hours a day in a motionless stupor" and concluded "from now on, I'm going to look to koalas to see how I'm measuring up in the productivity department."

Other people in our program reported changing their self-talk (the things we say to ourselves silently). One person reported that she grew up with a message in her head that said "I always finish anything I start."

Once she had ME/CFS, doing that created relapses and that led her to replace "work until done" with "I rest when tired." Another person used to tell herself she was weak if needed to take a rest. Now she says "rest gives me quality time with my husband and grandchildren."