Join The Next Introductory Class

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

 

By Bruce Campbell

 

(Note: One article in the series Pacing: What It Is and How To Do It.)

 

If you live consistently within your envelope, it is often possible to expand it, so that you are able to be more active without intensifying your symptoms. Based on our experience since 1998, we have developed two guidelines for expanding limits.

 

A “little bit” typically means no more than 5% to 10%, often less. The second guideline is based on the recognition that with all experimentation, some attempts work and others don’t, so we need a plan for what to do in the cases where the experiment fails.

In this case, failure means that extending limits resulted in an increase in symptoms. The response is to resume the old, proven-safe activity level.

 

We sometimes phrase this third part of pacing as  “extend your limits, as allowed by the body” or “increase your activity in small increments, as tolerated by the body.”

 

 

To give you an idea of how improvement unfolds, let me tell you the story of Elena Rosen. Elena has ME/CFS but has improved over a number of years from 15% of normal to 98%.

She writes in her article Using Targets to Improve Health and Gain Control that in her first few years with ME/CFS, she “tried to improve by making sweeping changes, an approach that always failed. Then I learned how to set small, realistic goals and that has made all the difference.”

 

One part of her self-management program was to engage in mild exercise, which she decided would be walking. She writes, “With the idea in mind of setting a small, realistic goal, I made it a target to walk 1/16th of a mile every day at a very slow pace.” (That’s about the length of a football field.)

 

Then, once a week, if she was having a good day, she extended the distance by ten or twenty feet, increasing the distance “a little at a time, as long as I experienced no increase in my symptoms.” Over time, “I found that taking a short rest in the middle of my walk allowed me to walk even further.” Eventually, she worked up to walking four miles a day.

 

Her extensions were small, but her envelope for walking is 40 times as far as her initial distance. Her experience is a powerful example of several aspects of pacing. She started by assessing her then-current limit. She extended her limit very gradually, as allowed by her body. And she made use of rest breaks.

 

Let me add some concluding thoughts about exercise and expanding the envelope. First, Elena had cleared an important hurdle before starting her walking program. She had progressed to the point of doing what are called “activities of daily living” (ADLs), such as feeding herself, bathing and dressing, and household chores, without intensifying her symptoms.

Our motto is “all activity is exercise.” The first activity/exercise goal should be doing ADLs without increasing symptoms. Only then was it appropriate for Elena to add a formal exercise program.

Second, progress with pacing is almost always gradual, as Elena’s example illustrates. When people have understood their limits in detail and adapted to them (parts 1 and 2 of pacing), they can then work on expanding their envelope.

A good rate of improvement is about 1% a month. If that rate of progress feels discouraging, we suggest looking at improvement over longer periods of time. One percent a month translates into a 12% improvement over a year and about 25% over two years.  

 

We also suggest working to improve in several areas, not just pacing. Lessening stress is often the second most powerful lever for improvement. Other areas that many people find help them improve include improving sleep, treating other medical issues and improving support

 

Improvement using pacing is usually gradual, measured over months and years, and requiring patience and discipline. This can lead to frustration. One way to respond to frustration is to devote some effort to strategies that produce more immediate results. Here are five to consider.

 

1) Planned Rests
Taking daily planned rests is one of the most popular strategies used by people in our program and something many people try as their first pacing strategy. It is helpful to something like 80% to 90% of people who try it. Here are the thoughts of three people who experimented with planned rest while taking our introductory course.

 

 

 

For more, see an earlier article in this series: Gaining Control with Planned Rest.

 

2) Minding Time of Day 
Most people with ME/CFS and FM have better and worse times of day, so how much you can get done may depend on when you do it. One person in our program found that, because of brain fog, she was not able to retain information if she studied in the morning.

However, if she studied after lunch she could read for two 45-minute sessions with a short break in the middle, and retain the information afterward. By switching her study from morning to afternoon, she more than doubled her envelope for reading.

Other people find that their tolerance for physical activity is greater if they exercise during their best hours of the day.

 

3) Using Devices
You may be able to get more done, avoid symptoms or both by using devices to help you. For those who have limited tolerance for standing, using a stool in the shower or in the kitchen when preparing meals can avoid symptoms. Similarly, using a motorized cart while shopping can greatly reduce the energy expended in that activity.

 

You can use a pedometer to determine your current activity level (your “baseline”) and to stay within your limits. A heart rate monitor with an alarm feature offers a way to avoid relapses by telling you when you are about to exceed your heart rate threshold. Use of a monitor to stay within your heart rate threshold can lead to an expansion of the Energy Envelope.

One person in our program reported, "I've made a lot of progress in the past year, mostly thanks to heart rate monitoring, which trained me to reduce my activity to a level my body can handle. By forcing myself to stay within my limits, I have slowly achieved an increase in what I am able to do."

 

For more, see an earlier article in this series: Devices and Limits on Individual Activities.

 

4) Relaxing 
How we react to events can affect the amount of energy available to us. If we can respond in a relaxed manner to stressful situations, we can preserve energy that might otherwise be dissipated in tension and anxiety.

 

A woman in our program gave a good example. At a birthday party one year, she took on the role of the good hostess, moving about and worrying whether everyone was having a good time. She found herself tired and cranky after an hour.

At a similar party a year later, she decided to imagine herself as a queen who was observing the situation from a throne. Freed from the self-imposed expectation that she should make sure everyone enjoyed themselves, she found herself with good energy for more than two hours. By relaxing, she reduced her worry and extended her energy.

 

Her experience illustrates the idea that mental and emotional activity, not just physical activity, use energy. Stress and any experience that triggers the release of adrenaline are big energy users.

Whatever you can do to lessen stress will also preserve your supply of energy for productive uses. The strategy we recommend as a starting point is a daily relaxation procedure, which can be done during planned rests.

 

5) Using Routine 
Novelty is another source of stress. It takes more energy to respond to a new situation than it does to something familiar. One way to save energy is through making life predictable.

Often this means living life according to a schedule, also known as having a daily plan. Using that approach, you can reduce the surprises and emotional shocks in your life and thereby reduce your stress.

 

Recent research on habits and routines has demonstrated that they use less energy than one-time events. This is because of ‘chunking’. This means that the mind stores habitual routines as a single set of instructions, which are executed automatically as a set if the behavior is triggered.