Practicing the Pacing Lifestyle

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By Bruce Campbell

Over time, you can extend pacing to your whole life, 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 increased sense of control over your illness, and may be able to expand your energy envelope.
 

Daily Plans

You might start 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. Rest should be integrated into your day as a regular part of your schedule, as described in the previous article in this series.

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. While you may be able to expand your activity level, this is usually a gradual process. A good pace of expansion for those able to improve their functional level would be one or two percent a month.

An appropriate short-term goal is to gain stability by having consistency in activity level from one day to the next. By finding an activity level you can sustain from day to day without worsening symptoms, you can mute the swings of push and crash.

Developing routines is one way to increase consistency. Living your life in a predictable way can help reduce relapses, because routine is less stressful than novelty and because it increases your chances for living within your limits.
 

Daily Schedule Worksheet

The Daily Schedule worksheet gives you a way to translate your understanding of your capabilities and limits into a daily routine of activities and rest. (For a printable version of the Daily Schedule Worksheet, see the Logs, Forms and Worksheets page.)

Here's how one person made use of the Daily Schedule worksheet. This women placed herself at 35 on our Rating Scale, right at the average for people in our program. She believed she could be active about three hours a day and could leave the house most days of the week. She wanted to work toward having a detailed schedule, but decided to start with just a few routines, focusing on sleep and exercise.

Since getting good sleep was her highest priority, she began by writing out her bedtime routines. (See box.) Knowing that she has trouble getting to sleep if she is active in the hour before bedtime, her first item specified her "winding down" routine. She also included taking a bath to help her relax and making a To Do list for the next day. Since morning is usually the time her fibro fog is strongest, she puts out her clothes the night before.
 

She decided that her morning and afternoon routines would focus on exercise and rest. Since afternoon is her best time of day, she scheduled her daily outing then. She also allowed herself two brief periods on the Internet each day. The items she put on her schedule were not the only things she did during a day. Rather, they were those things she wanted to focus on at the time she started using the worksheet. As she succeeded with this first set, she added more items.
 

Weekly Plans

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 determine the amount of activity you can sustain over a period of time without worsening symptoms. Consistency in activity level brings control. You can find your limit by trying different amounts of activity and noting the results.

Keeping written records can help. A health diary can reveal the connections between what you do and your symptoms. It also helps you hold yourself accountable for your actions, by showing you the effects of your decisions. And it can motivate you by showing you that staying inside your limits pays off in lower symptoms and a more stable life. (For more on records, see Learn to Predict the "Unpredictable".)
 

Weekly Schedule Worksheet

The woman mentioned earlier used a Weekly Schedule as well as a Daily Schedule. When she filled out the form below, she believed she could have one major activity each day without intensifying her symptoms. Since afternoon is her best time, she scheduled most of her activity for that time, things like household chores, errands, appointments and visits to the Y.

Her one evening event was having her daughters over for dinner on Sunday. She realized the plan left no margin for error. If something unexpected came up, she would have to delete one of the items from her schedule. (For a printable version of the Weekly Schedule Worksheet, see the Logs, Forms and Worksheets page.)

 
She soon concluded that her weekly schedule was unrealistic, even without unexpected events. When she tried doing an outing every day, she was forced to rest most of the afternoon at least one day a week and often two. That experience led her to conclude that her true rating was probably between 25 and 30, not 35.

After thinking more about her limits and talking with her family, she came up with a revised schedule. (See below.) She switched her major weekly cooking from Sunday to Saturday. She freed Friday afternoon for rest by spreading her laundry and housecleaning across the week. She also got her husband to agree to do the weekly grocery shopping. Finally, he and her daughters agreed to trade off preparing the family dinner on Sunday.

The Energy Bank Account

If working out daily and weekly schedules doesn't appeal to you, you might consider using another approach to pacing, either the Energy Bank Account or the Bowl of Marbles. Both involve monitoring yourself and adjusting activity according to your energy level and symptoms.

In the first, you imagine your energy as money in a bank account. The account has a very low balance (you have limited energy). This makes it easy to overdraw your account, which produces a big service charge (intense symptoms). But you can avoid overdrafts if you check your balance frequently and make deposits when the balance gets low (for example, by resting).

Vicki Lockwood explains her use of this approach in her article My Energy Bank Account. She began by assigning a positive or negative number to every part of her life. Things like sleeping, daytime rests and prayer, add to her energy and get positive numbers.

Most activities reduce her energy and get negative numbers. Each morning, she gives herself a starting balance based on how well she has slept. She deducts for each activity. When her balance puts her close to a flare, she stops and makes a deposit.
 

The Bowl of Marbles

A similar idea with a different image is the Bowl of Marbles. In this approach, you imagine your available energy as a bowl of marbles. Each marble represents a small amount of energy. Estimate your energy level each morning and put an appropriate number of marbles in a bowl. (Some people in our program have taken this idea literally, using marbles or coins stored in a bowl. Other people do calculations in their head.)
 

With every activity, you take one or more marbles out of the bowl: one for showering, one for dressing, etc. Some projects take more marbles than others. Also, the same task may require more marbles on some days than on others. Physical activity uses up your supply, but mental and emotional activity consume marbles as well.

For example, if you feel frustrated about how few marbles you have, your frustration will use up some of your marbles. Stress, tension and fear are all big marble-users. Whatever you do to lessen them will preserve your supply of marbles for other uses.

The bowl of marbles is similar to another way to understand chronic illness, the Spoon Theory. The latter is often used to educate others about illness or disability and tells how the author taught a friend about Lupus by asking her how to get through a day with a limited supply of energy, visualized as spoons.