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(From the series Pacing: What It Is and How To Do It.)

 

While many people with ME/CFS and FM understand that staying inside their Energy Envelope would bring a higher quality of life, many find it difficult to do consistently. This article and the next one outline 12 strategies that can promote consistency in pacing.

 

 

You may feel overwhelmed when you think of all the adjustments you have to make to live well with ME/CFS or FM. The solution we suggest: focus on one thing at a time.

 

Just as many people use a combination of pacing strategies, as outlined in earlier articles, most people use a combination of approaches in their efforts to be consistent in pacing, adding one at a time over a period of time. Each requires discipline, patience and courage, but over time they can be transforming.

 

One person described how she changed by saying, “The transformation into a more disciplined person was a long-term process. The changes have been introduced gradually over time. And I make sure I find the right one before I move on to adding the next.”

Develop Personal Rules

 

One strategy for improving consistency is to use very detailed and individualized rules.

 

Rules describe what you will do in a given situation. For example, you might establish rules for how long to stay on the computer, how much exercise to do, how far to drive, when to go to bed at night, when and how long to rest during the day, how much media exposure to have, and how long to spend in social situations.

 

Personal rules have an If/Then structure. For example: 

 

Rules are planned responses, which you use as a substitute for old habitual behaviors. Over time, the new behavior becomes a habit. Living by a set of personal rules means not having to think and also reduces the power of spontaneity to overwhelm good judgment.

 

Some people have just a few general rules to guide them. For example, one person with a severe case of ME/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.

 

Others develop specific rules for different situations. They simplify illness management by asking themselves two questions: What situation am I in right now? What is my rule for this situation?

 

One person uses this approach to plan how she will respond to symptom flares. Some of her rules are:

 

If you are attracted to this strategy but worried that brain fog will undermine your ability to use it, you might consider taping rules in some prominent place, like the refrigerator, the bathroom mirror or your computer. The overall idea is to use rules as a bridge between old behaviors and new habits.

Think "Sustainability"

 

A key strategy for escaping push and crash is to find what level of activity you can sustain over a period of time without worsening your symptoms. For many people, just asking the question “What level of activity can I sustain for a week?” leads them to reduce the amount of activity they do on any single day, a significant step away from a push and crash life.

You can find your sustainable activity level through experimentation. Maybe you can be active for two hours a day, four hours or even fourteen. The way to determine your limit is by trying different amounts of activity, each amount for several days to a week, and noting the results.

If you can sustain a consistent activity level for a week without intensifying your symptoms, congratulations; you are living within your Energy Envelope!

 

 

Keeping a health log, which need not take more than a few minutes a day, can help you gain consistency in pacing in at least three ways.

First, records can help you get a clearer picture of your limits and reveal the connections between what you do and your symptoms. Using records, you can see how much activity you can do safely in a day and a week, and whether there are delayed effects. Also, a log can show the effects of mental and emotional events, as well as physical activity.

 

Second, a log can help you hold yourself accountable by documenting the effects of your actions. Reviewing your records can be like looking at yourself in a mirror.

As one person in our program said, “Logging brings home to me the reality of my illness. Before logging, I didn’t realize that most of my time is spent on or below about 35% functionality. This false perception that I was better than I am led me to overdo things, but now I am less ambitious.”

 

Third, records can motivate you by showing you that staying inside your limits pays off in lower symptoms and a more stable life. Records of progress can provide hope.

 

There are many ways to track your life using written records. In all cases, work with a log occurs in three steps, summarized in the words: write, analyze, and act.

• Write: Make entries in a log
   
• Analyze: Review the log to gain insights
   
• Act: Make changes using your insights (the big challenge!)

You make daily entries, usually taking no more than a few minutes. Periodically, say every few weeks, you go over your records to learn about your limits. Then, you use strategies such as those in this and the previous chapter to change how you live (the hard part!).
 

For more on logging, see the article Health Logs: Big Payoff on a Small Investment.

Plan Your Life and Live Your Plan

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.

The goal is to move gradually toward consistency in both activity and rest, doing a similar amount of activity each day and also taking similar amounts of rest. Implementing this approach involves planning in advance what you are going to do, first for a day and later a week.

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."

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.

The Daily Schedule worksheet gives you a way to translate your understanding of capabilities and limits into a daily routine of activities and rest. Adhering to the schedule offers a way to control symptoms and bring some stability to your life. The worksheet and all our other forms are available to download and print on the Logs, Forms and Worksheets page.

(The next article in this series describes seven more strategies for consistency.)