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Managing Chronic Fatigue Syndrome and Fibromyalgia


10. The Pacing Lifestyle

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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 for a day and 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.


Daily Plans

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, rest breaks 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.


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.


Developing routines is one way to increase consistency. Doing things in a regular and customary way reduces energy expenditure, because you are living by habit rather than continuously confronting new situations. 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.


Your ability to do this depends on your developing a detailed understanding of your limits and then creating a schedule of activity and rest that honors those limits. One person who took our course said, "Developing a routine and sticking to it have been helpful because the familiarity reduces the number of surprises and lowers the attention that I have to spend on unexpected happenings. If I always wash my face after brushing my teeth, then, when I'm done brushing my teeth, I don't have to think about what I'm going to do next." For more on this topic, see the article "Habit Change & Rules: Two Keys to Improvement."


Your ability to stay within your limits is complicated by the fact that your body may not give you a signal when you go outside your limits. You may feel fine even after going beyond your envelope, experiencing increased symptoms only later. Because the effects of overexertion are often delayed, you cannot rely on your body to tell you when to stop. The solution is to find your limits through experimentation and then limit your activity to a length of time your experiments have found to be safe.


The Daily Schedule Worksheet

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. (To get an idea of your limits, place yourself on the Rating Scale in Chapter 2, use the Activity Log from Chapter 30 or fill out the Energy Envelope form in Chapter 8. Any of those methods should give you a sense for how much activity your body can tolerate at the present time.)


Here's how one person made use of the Daily Schedule worksheet. Jane, who is married and in her 50's, contracted FM about 10 years ago and rated herself between 30 and 35 when she started our program, about average for people in our introductory course. She lives with her husband. Her two adult-age daughters live in the same city. Given her self-rating, 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. Her initial priorities were good sleep, eating well 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 items that reflected other things she knows about herself. Taking a bath helps her to relax. She falls asleep more quickly if she spends a few minutes at night making a To Do list for the next day. Having a list reduces her tendency to ruminate. Since morning is usually the time her fibro fog is strongest, she puts her clothes out the night before. All these were included in her bedtime routines.

 

Bedtime Routines

Wind down: No TV, computer or phone calls after 9
Take bath
Make To Do list for tomorrow
Set out clothes for tomorrow
Take evening pills
In bed by 10


She decided that her morning and afternoon routines would focus on eating two healthy meals, stretching and taking pre-emptive rests. Since afternoon is her best time of day, she scheduled her daily outing then. (See the Weekly Schedule below for specifics.) The only thing she asked of herself during the evening was to prepare dinner for her husband and herself. (He gets his own breakfast and buys lunch at work.) 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.

 

Morning Routines

Eat
Take morning meds
Shower & dress
Review & revise To Do list
Stretch
Rest for 20 minutes

Afternoon Routines

Eat
Stretch
Activity for the day (see Weekly Schedule)
Computer for 20 minutes
Rest for 20 minutes

Evening Routines

Fix dinner & eat

 

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 estimate what level of activity you can sustain over a period of time without worsening symptoms. Consistency in activity level brings control. 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 and noting the results.


I strongly recommend keeping written records. 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 logging, see chapter 30.


Weekly Schedule Worksheet

Jane made use of a second planning worksheet: the Weekly 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. She created the following worksheet as a typical week. She knew that if something unexpected came up, she would have to delete one of the items from her schedule.


Because exercise is important to her, she planned to go to the Y for a water exercise program two days a week. She set aside one afternoon for grocery shopping and other errands. Two other events were her weekly cooking, and time for laundry and housecleaning. Finally, she scheduled two afternoons a week for appointments or socializing. Her one evening event was having her daughters over for dinner on Sunday.

My Weekly Schedule

SUN

MON

TUE

WED

THU

FRI

SAT

Morning
             
Afternoon
Weekly
Cooking
Y Pool Appts Y Pool Appts Laundry Cleaning Grocery Errands
Evening
Family
Time
           

 
Jane soon concluded that her weekly schedule was unrealistic. She discovered that if she tried to do something every day, her symptoms were much higher and she had to spend at least one afternoon a week in bed. She decided to schedule two free days a week, with no trips outside the house. She also concluded that she could not both fix dinner and entertain her daughters on Sunday evening. Her body counted that as two events, which was beyond her limit of one per day.


Her experience led her to conclude that her true rating was probably between 25 and 30 on the CFS/FM Rating Scale, not the 30 to 35 she had believed previously. 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. At her request, her husband agreed to do the weekly grocery shopping. He and her daughters agreed to trade off preparing the family dinner on Sunday. Jane decided to free Friday afternoon for rest by spreading her laundry and housecleaning across the week rather than devoting Friday afternoon to them. She recognized that this experiment might not work and decided that her next step would be to ask her husband to help with chores or to hire someone.


Jane's experience is typical of people in our program. Adapting to CFS and FM usually involves experimentation and often tasks are transferred to others.

My Weekly Schedule

SUN

MON

TUE

WED

THU

FRI

SAT

Morning
             
Afternoon
  Y Pool Appts
or rest
Y Pool Appts
or rest
Rest Weekly
Cooking
Evening
Family
Time
           
 
 



9. Pacing Strategies  Up  11. Achieving Consistency