Aids to Pacing, Part 1

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By Bruce Campbell

Note: First of two articles.

Pacing is widely acknowledged as an effective way to live with CFS and FM, but many people find it difficult to do. This series will examine things you can do and devices you can use to improve your ability to pace yourself.

Rules

Some people with CFS and FM have had success using very detailed and individualized rules to protect them from doing too much. Living by a set of personal rules means not having to think and also reduces the power of spontaneity to overwhelm good judgment.

Rules are planned responses, which you use as a substitute for old habitual behaviors. Over time, the new behavior becomes a habit. If you like the idea of using rules but are bothered by brain fog, you might consider taping rules in some prominent place, like the refrigerator, bathroom mirror or computer.

Personalized rules can take three forms.

First, you might state a few rules crucial to controlling symptoms. One person with a severe case of CFS has three rules for herself: no more than three trips outside the house per week, no driving beyond 12 miles from home, and no phone conversations longer than 20 minutes.

Another person has three rules: a) turn off the TV and the computer at 9 pm (to wind down gradually for better sleep), b) take two 15-minute rest breaks daily, in late morning and mid-afternoon, and c) take extra rest for two days after apparently recovering from the secondary illness (to avoid a double dip).

Second, you can develop rules for specific circumstances. For example, after you have defined your limits, you can establish rules for how long you stay on the computer, how long you talk on the phone, how much exercise you do, how far you drive, when you go to bed at night and get up in the morning, when you rest during the day, how long you spend in social situations and so on.

Such personal rules have an If/Then structure. For example:

If I've been on the computer for 20 minutes, then it's time to take a break.
If it's 11 am, then it's time for my morning rest.
If it's 9 pm, then it's time to start getting ready for bed.

If you have rules of this sort, you can simplify your illness management program into asking yourself two questions: What situation am I in right now? What is my rule for this situation?

Third, you might write down your strategies for managing specific symptoms. For example, for managing fatigue, people in our program often mention taking daily rests, getting enough sleep, limiting the number of times they leave the house each week, breaking up tasks into small chunks and limiting the time spent standing up.

Personal Guidelines

A variant on rules is personal guidelines. The goal with this approach is to state a few principles to guide your life with chronic illness and to be a reference in times of confusion.

The idea came from an experience I had one day early on in my time with CFS. I found myself in a deep fatigue with severe brain fog. The fog made me so confused I didn't know what I should do next. "If only," I said to myself, "I had a few simple directions on a small card, I could know what to do right now." So I decided to create them. I sat down and wrote out just a few guidelines that I could turn to for direction in times of confusion.

Here's what I came up with for myself. The words in italics went on a 3x5 card for quick reference; I printed the full text on a sheet of paper.

Live within my energy envelope
I believe I can reduce symptoms and regain control by living within my limits. For me, this means taking scheduled rests daily, keeping a daily log, returning only gradually to my normal routine after a relapse or illness and avoiding stressful people and situations.
Extend the envelope gradually
Recognizing that CFS controls the timetable and extent of my improvement, I will experiment occasionally to expand my activity level, but not more than 5% to 10% at a time. I recognize that not all my experiments will work. If an experiment produces greater symptoms, I will return to my previous level.
When all else fails, go to bed
There are times when the best course is to surrender to the illness. This guideline gives me permission to acknowledge that at times I am powerless over the disease and the smartest course is to give in to it.
Accept that I may not recover
I believe I can create the conditions for recovery but can't control whether I recover. Thus, I try to focus on feeling better, which I believe is under my control to some degree.

From time to time, we have asked members of our classes to write their own guidelines. Their responses have combined practical coping techniques with ideas that promote psychological adjustment. Here's one from Fall, 2009.

Limit stress in my life
Use moderate exercise and movement to keep my body healthy and reduce symptoms
Practice living with an attitude of gratitude instead of self-pity
Go to bed when symptoms are high

You can see some further examples in the article Personal Guidelines For Managing Chronic Illness.