Join The Next Introductory Class

Register now for classes that begin on July 1, 2024. Registration closes on June 24, 2024. Cost: $20.00.

 

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

 

The previous two articles introduced you to three pacing strategies: planned rest, the use of devices and activity limits. This article describes nine more.

 

 

You can affect your symptoms by adjusting the length of time 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. You can determine your own individual limits by experimenting. Try doing a task for different lengths of time (say five, ten or fifteen minutes) and note your symptom level after each.

 

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. One person in our program, who is severely limited because of ME/CFS, was asked to translate two documents from Chinese 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. As she improved, she was able to expand her work periods from four to eight a day.

 

 

Another activity-related strategy for getting more done without intensifying symptoms is to shift from one type of activity to another, for example switching among physical, mental and social activities. For example, when you find yourself tired after working on the computer, you might stop and call a friend, or go to the kitchen and do some meal preparation.

 

Another way to use task switching is to divide your activities into different categories of difficulty and to switch among different types, scheduling only a few of the most taxing activities a day.

 

Here's what one person says: "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."

Minding Time of Day

 

Most people with ME/CFS and FM find they have better and worse times of the day. You may be able to increase how much you get more done, without spending more time or intensifying your symptoms, by changing when you do things, so that you use your best hours for the most important or most demanding tasks.

For some people, mornings are the best times of day; for others, afternoons and for some evenings. What is important is that you find your best time.

 

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."

 

Time of day applies to mental activity as well. A woman in our program 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.

 

Then she decided to experiment with studying in the afternoon. She found that she had good mental stamina for several hours if she studied in the early afternoon after taking a brief rest. Using that strategy, 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.

 

 

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.

Controlling Sensory Input

 

Many people with ME/CFS and FM have an increased sensitivity to sensory information, including light, sound and touch, and also may experience allergic reactions to various substances.

 

If you find your concentration is affected by having too much sensory input, 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 when they aren't busy. 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.

 

Allergic reactions to various substances range from mild annoyance to serious threat. Those on the far end of the spectrum may be housebound because of their sensitivities. Sensitivities to mold, dust mites and grasses are common. People also react to perfumes, scented products, cigarette smoke, household chemicals, car exhaust and diesel fumes, glues, inks and dyes.

 

Symptoms include headaches, dizziness, faintness and nausea. (Because many patients are chemically sensitive, most ME/CFS and FM support groups ask people to come "fragrance free.") The most useful coping strategy is avoidance, which includes eliminating offending substances from the home and limiting exposure to them while outside the house.

 

For more on controlling sensory input, see the article Sensory Overload: Sources and Strategies.

 

In big picture terms, 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 Energy Envelope form. 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, put some friendships on hold, reduce the hours you work or stop working.

 

 

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.

 

One of the key ideas for successful coping is to see your life with ME/CFS or FM as a series of experiments. In searching for medications to help you control symptoms, you will probably have to try several to find one that is helpful and may have to adjust dosage levels. The same approach applies to lifestyle adjustments: trying different strategies to find what works for you.

 

We call this approach being your own ME/CFS or fibromyalgia scientist, a process in which you are both a researcher and your own research subject.

Given the tremendous variation in symptoms and severity among people with the two conditions, developing an individualized approach to your illness, one based on your unique circumstances, offers the best chance for improvement.

Making Mental Adjustments

 

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 babysit my grandchildren."

 

Adjusting our thinking provides the mental foundation for working at pacing. For more, see parts four and five in the Self-Management Skills series.