Managing Chronic Fatigue Syndrome and Fibromyalgia
9. Pacing Strategies
You found your limits by placing yourself on the Rating Scale and using the techniques outlined in the last chapter. Your next challenge is to adapt yourself to them. This is a gradual process, usually taking a period of years and involving the use of multiple strategies.
Here are ten techniques to consider. Through experimentation, you can find the combination that works for you.
Reduce Activity Level
The primary strategy for adjusting to limits is to reduce your overall activity level. You can think of this as a two-step process. In the first step, you determine how much pruning you will have to do. For example, you can list the activities you do in a typical week, making an estimate of the time each takes.
You then add up the times and compare them with the limits you established by using the Rating Scale or the envelope exercise in the previous chapter. If items on your list take more time than your limits allow (for example, you would like to have six hours a day of activity, but your body allows four), you will have to make some adjustments in order to stay inside your energy envelope.
In step two, you reduce your activity level using some combination of delegating, simplifying and eliminating. Delegating means finding someone else to do a task that you used to do. For example, family members might share in meal preparation or grocery shopping, or a cleaning service could take over housecleaning. Sources of help include family and friends, hiring someone, or using community resources, such as religious groups or service clubs.
Simplifying means continuing to do something, but in a less elaborate or complete way. For example, you might clean house less often or cook less complicated meals. Finally, you may decide to eliminate some activities or relationships. For example, you can bow out of volunteer work or put some friendships on hold.
Take Scheduled Rests
Taking planned rests every day can help you reduce your symptoms, gain stability and reduce your total rest time. In contrast to rest taken as a way to recover from intense symptoms (recuperative rest), scheduled or pre-emptive rest is a strategy for avoiding flare-ups and escaping the cycle of push and crash.
Pre-emptive rest means integrating rest breaks into your daily schedule. The length of the rest period, the number of rests and the way rest is done vary from person to person. Many people take one or two rests of 15 minutes to half an hour each. People with severe CFS or FM may benefit from taking many brief rests a day, for example a 10 to 15 minute rest every hour or two.
You will gain maximum benefit if you are consistent, making rest a part of your daily routine regardless of how you feel. It can be tempting to skip the rest when you are feeling good. At such times, it may be helpful to remind yourself that, by taking scheduled rests, you are avoiding symptoms, and more rest, in the future.
Resting according to a fixed schedule, not just when you feel sick or tired, is part of a shift from living in response to symptoms to living a planned life.
Many people find resting most effective if they lie down with their eyes closed in a quiet place, but others listen to music and/or rest in an easy chair. When you begin using pre-emptive rests, you may find you are distracted by your thoughts. If that occurs, try using a relaxation technique, listening to a CD or possibly reading a book. By focusing your attention on something other than your thoughts, you will relax your mind, making it easier to rest.
Resting by lying down with eyes closed is one of the most popular strategies used by people in our program. The important thing is to take a break from normal activity and to create a quiet place.
Here's what one person in our program said about her experience with rest after taking our course: "Watching TV, talking on the phone, or talking with my family...I learned that these things could actually be quite tiring, even if I was lying down. Resting with eyes closed is completely different and, I found, very helpful. Before the course, I only thought I was resting; now I know that [for me] rest means lying down with my eyes closed (without television or the telephone)."
Scheduled rest is a popular energy management strategy because it is straightforward and brings immediate benefits: greater stability, reduced symptoms and greater stamina.
A woman taking our self-help course told her group, "I decided to incorporate two scheduled rests into my day and the results have been incredible. My symptoms and pain have decreased and I feel more ‘in control'. My sleep has been more refreshing and even my mood has improved."
Another person said, "I have been resting in between activities, sometimes only for five minutes. For the first time in the four and a half years that I have been ill, I feel that it is possible to manage my symptoms and have some predictability in my life."
As noted above, some people find it helpful to take several daily pre-emptive rests every day, rather than one or two. One person who tried this was a woman with severe CFS who became tired with almost any exertion. It was as if her batteries ran down very quickly and needed frequent recharging. She was able to reduce her total rest time dramatically by using frequent short rest periods.
Before taking our course, she spent six hours a day resting, two naps of three hours each. After learning about pre-emptive rest, she decided to break up her day into one- and two-hour blocks, and to take a 10 to 15 minute rest during each block.
Over a period of two months, she reduced her total rest time by an hour and a half. After six months, she had cut her rest time down to three hours a day. By resting in small blocks, she added three hours of activity time to her day without increasing her symptoms.
If you want to try pre-emptive rest, we suggest that you start with lying down in a quiet place. If that doesn't work for you, experiment with other ways of resting. If you fall asleep while resting, it may be a sign that your body requires more rest. You can determine your body's need for rest by keeping a sleep log.
Set Limits for Individual Activities
Another strategy is to set limits on particular activities. This can mean that you stop doing some things entirely or that you reduce the amount of time spent doing something so you stop before your symptoms intensify ("stop before you drop"). An example of the former is given in Eunice Beck's article Making a NOT TO DO List.
Constructing a list of things you no longer want to do gives you permission to take things off your "should do" list, eliminating activities without feeling guilty about it. Having a "not to do" list gives you a justification for taking steps to protect your health. Eunice Beck includes in her list "not volunteering or being manipulated into commitments that I know will be a strain on my energy and pain level."
You can find an example of the power of setting limits on specific activities in Bobbie Brown's article 25 Reasons Why I've Improved. The article describes how she increased her functional level from about 15% of normal to about 35% or 40%. Two items in Bobbie's list refer to medications, but most of her strategies involve changes in her daily habits and routines.
She uses pacing techniques, such as taking regular, scheduled rests and living within limits. In fact, almost half her items are techniques for setting limits on herself, including limits on driving, time on the computer, time on the phone, sensory input, socializing, household responsibilities and travel.
To put limits on individual activities, follow a two-step approach. First, find your limits by experimenting using the technique described in the last chapter.
Then gradually adjust your activities to fit within the limits. For example, you may set limits on how long you stand, how long or how far you drive, how long you spend on the computer or the phone, how long you spend socializing, how far from home you will travel, and how long you spend doing housework (or even which chores you will do). Some people find it helpful to enforce their limits using a timer.
Use Short Activity Periods
In addition to controlling symptoms through limiting your overall activity level, you can affect your symptoms by adjusting how you are active. Two short periods of work with a break in between can produce more and leave you feeling less symptomatic than the same amount of time expended in one block.
Take a task like chopping vegetables. Some people may experience no pain if they stop after ten minutes, but pain that lasts one or two hours if they continue beyond that limit.
The same principle can be applied over longer periods of time. You may find, for example, that your overall symptom level is lower if you spread activities through the week, rather than trying to do many things in one or two days.
It is still possible to accomplish a lot even with very short activity periods, as shown by the experience of another person in our program. This woman, who is severely limited because of CFS, was asked to translate two documents into English. Through experimenting, she found she could work at her computer for only 15 minutes at a time before feeling ill.
She decided to have four work periods a day of 15 minutes each for a total of one hour. She completed her translations in five months. Later, she was able to expand her work periods from four to eight a day.
Use Activity Shifting
Another strategy for getting more done is to shift from one type of activity to another, for example switching between physical, mental and social activities. If you find yourself tired after working on the computer, you might stop and call a friend, or go to the kitchen and prepare dinner.
Another way to use task switching is to divide your activities into different categories of difficulty, and to switch frequently among different types and schedule only a few of the most taxing activities a day.
Here's what one person does: "I divide activities into light, moderate and heavy, and then plan my day to alternate activities in the different categories. By pacing myself in this way, I can do more and minimize my symptoms. In fact, I'm amazed at all I can now do in a day."
Use the Rule of Substitution (Pigs at a Trough)
It's easy to do "just one more thing," but this often leads to higher symptoms. The solution: think of substitution rather than addition. In order to add a new item to your schedule, drop one. For example, if your envelope allows you to leave the house three times a week and something new arises, find a way to postpone one of the usual outings in order to honor your "three times a week" limit.
This approach is sometimes called "pigs at a trough." There is limited space beside a trough. The only way a new pig can get in is to squeeze another pig out.
Pay Attention to Time of Day
Most people with CFS and FM find they have better and worse times of the day. For some, mornings are good, while others perk up later in the day. It's likely you can get more done, without intensifying your symptoms, by changing when you do things, so that you use your best hours for the most important or most demanding tasks.
Probably the most common pattern is a gradual improvement as the day wears on, with a slowing down in the evening. But, for some patients, mornings are the best times of day; for others, evenings. What is important is that you find your best time of day.
One person in our program wrote about exercise, "If I walk in the evening, I can make it around two blocks, but three has me collapsing. Early in the day, I can do three or more. I have a window between 8 and 11 in the morning that is best for most activity, both mental and physical."
Another student was bothered by the effects of brain fog on her ability to read and retain information. Studying in the morning, she was able to read for only a half hour a day and had trouble remembering what she read. But she decided to experiment with studying in the afternoon. She found that she had good mental stamina for several hours if she started the afternoon with a brief rest.
After her rest, she could read for two 30-minute sessions with a short break in the middle and retain the information. Over time, she expanded her study time to a total of two hours a day. Experimenting with time of day enabled her to increase her study time greatly while also increasing her comprehension.
Control Sensory Input
Many people with CFS and FM have an increased sensitivity to sensory information, especially light and sound. They find their concentration is affected by having too much sensory input. If this is true for you, you may be able to get more done and experience a lower symptom level if you focus on one thing and simplify your environment.
For example, you may be able to understand what you read better if you turn off the TV while reading or move to a quiet place. If noisy restaurants bother you, try visiting during non-busy times. If you find large groups difficult, try getting together with only a few people. If media bother you, limit your exposure or have a "media fast," in which you refrain from watching TV or listening to the radio.
Sit When Possible & Use Devices
If you tire or feel faint while standing, consider sitting down whenever possible, for example to prepare meals and while showering (use a plastic stool or chair for the latter). You may be able to get more done, avoid symptoms or both by using devices to help you.
Some people with CFS and FM, who can't stand for long, who are sensitive to sensory input or both find shopping easier if they use a scooter or motorized cart. Many large stores have such devices, which they make available for free.
One person in our program reported dramatic results from using a motorized cart in the supermarket. Prior to using the cart, she would be so tired from her weekly grocery shopping that she would lie down for two hours as soon as she returned from the store. If she shopped with the cart, she didn't need any rest at all after shopping.
Keep Pleasure in Life
Living with a chronic condition means ongoing discomfort and frustration. Pleasurable activities reduce frustration and stress, distract you from your symptoms and give you things to look forward to.
Examples include taking a bath, having a conversation with a friend, listening to or playing music, seeing a movie, spending time in nature and reading. All can be considered pacing strategies because having enjoyable experiences makes it easier to accept and live within limits.
A Note on Accepting Your Limits
Pacing means adopting new habits, but it also requires making mental adjustments rooted in an acceptance that life has changed. This acknowledgment leads to a different relationship to the body, described by one person in our program as "a shift from trying to override your body's signals to paying attention when your body tells you to stop or slow down."
One part of this shift is changing our internal dialogue (self-talk) and expectations, so that they support our efforts to live well with illness rather than generating guilt. For example, one person in our program says that she used to think she was lazy when she took a nap.
Now, when she rests she tells herself, "I am helping myself to be healthy. I am saving energy to spend time with my husband or to baby sit my grandchildren." Another person says, "I now accept the fact that I have a chronic illness and that this condition has, and will continue to, put great constraints on how I live. I now have a ‘half life' but I am going to make it the best ‘half life' that I can."