Managing Your Energy Envelope
[Note: This article was originally published in the CFIDS Chronicle, the magazine of the CFIDS Association of America and later featured on their website.]
By Bruce Campbell
When I was first ill with CFS, I experienced frustrating cycles of push and crash. I was active when my symptoms were low and then retreated to bed when they became intense. Living in response to symptoms, I felt my life was beyond my control.
Eventually, however, I found a way to bring stability to my life by determining my energy profile and pacing myself accordingly. To me, pacing means understanding my limits and then adapting to them. By staying within my limits, I reduced my symptoms, gained stability, and started a gradual upward spiral that led to recovery.
Over time I developed my understanding of pacing and put together a self-help course that uses an approach similar to one I learned at the Stanford Medical School.
In the process of conducting 250 self-help groups over the last decade [over 600 by 2018], I've seen the difference pacing strategies make for people with CFS and have some clear ideas have evolved about how to create a personalized pacing program. Here are some of the key concepts.
Finding Your Limits One Area at a Time
There is a wide range of energy levels among people with CFS. We use the term "energy envelope" to refer to the limits imposed on an individual by illness. Other terms for the same thing include the "energy bank account," or a limited "bowl of marbles" or "set of spoons."
Seeing your energy as a limited supply provides a motivation to set priorities and to make informed decisions about how to spend a precious resource. One person in our program says every day she faces the challenge of "how to spend my energy chits."
The average person in our self-help courses has an energy envelope of around three hours a day. To get an idea of your envelope, estimate how many hours a day you can be active without intensifying your symptoms. (One tool for doing this is the ME/CFS & Fibromyalgia Rating Scale.)
But it's also helpful to understand your energy profile and limits in more detail. Just as activities come in many forms-from walking to reading to phone conversations-so, too, do our tolerance limits for each. By zeroing in on each type of activity and asking yourself a few questions, you can begin to build a detailed profile of your energy envelope.
Physical activity: We all have limits for various activities, such as housework, shopping, driving, standing and exercise. You can determine your envelope for each by focusing on one activity at a time.
For example, if you think your envelope for housework is 10 minutes, try that much and then ask yourself how you are feeling. If you feel OK, you may be able to do more (but increase slowly!). If worse, try less. Soon you'll get picture of how much of your primary physical activities you can do without making your CFS worse.
Keep in mind that your limits will likely vary from activity to activity. For example, when I had recovered to about 75% of my pre-CFS activity level overall, my exercise ability was only about 30% of what it had been before I became ill.
Mental activity: Activities requiring concentration, like reading, working on the computer or balancing a checkbook also make demands on our energy.
Questions to ask to find your mental envelope include: How many hours per day can I spend on mental activity without making my CFS symptoms worse? How long can I spend in a single session? What is my best time of day for mental work? Do I have different limits for different mental activities (reading vs. computer work)?
Social activity: Consider the time you spend interacting with other people, either in person or on the phone and assess that energy toll.
Ask yourself: How much time can I spend with people without making my symptoms worse? Is the amount of time dependent on the specific people involved? You may tolerate only a short time with some people, but can spend more time with others.
How long can I talk on the phone without making my symptoms worse? For in-person meetings, you might also ask yourself whether the setting makes a difference. Meeting in a public place or with a large group may intensify your symptoms, but meeting privately or with a small group may be OK.
Physical sensitivities: It also helps to determine if you have sensitivity to food and other substances, vulnerability to noise and light, and sensitivity to weather and the seasons. Questions in this area are: Do I have allergic reactions to food? Am I chemically sensitive?
Am I susceptible to sensory overload: noise, light, or stimulation coming from several sources at the same time (for example, trying to have a conversation with music playing in the background)?
Am I affected by the seasons or changes in the weather? A deeper understanding of these environmental elements can help you make better decisions about managing your energy.
Finally, many people with CFS experience additional medical issues, which impose further limits. Successful treatment of other problems often eases the symptoms of CFS, effectively expanding the envelope.
9 Strategies to Manage the Energy You Have
Once you know your limits, your next challenge is to adapt to them. This is a gradual process, usually taking a period of years and involving the use of multiple strategies. Here are nine techniques often used by people in our classes.
1. Reduce Overall Activity Level: The primary strategy for adjusting to energy limits is to reduce your overall 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, hire a cleaning service or have family members do the grocery shopping.
Simplifying means continuing to do something, but in a less elaborate way, such as cleaning house less often or cooking less complicated meals. Finally, you may decide to eliminate some activities altogether.
2. Take Scheduled Rests: Taking planned rests every day can help you reduce your symptoms, gain stability and reduce your total rest time. (Note: "Rest" means lying down with your eyes closed in a quiet place. Watching TV, reading or talking on the phone are low-level activities, not rest.)
The optimal length of the rest period and the number of rests per day vary from person to person. Many people take one or two rest breaks a day of 15 minutes to half an hour each. To quiet their minds, some people use a relaxation procedure or listen to music while resting.
Scheduled rest is popular because it's easy to use and brings immediate benefits. One person wrote, "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."
Planned rest periods can be useful even for people with severe CFS. One bedbound person with CFS wrote us that before she took our self-help course she thought she was nearly always resting because she spent most of her time lying down.
Through the class, she realized that she was actually quite active, talking to people, working on the computer, etc. She reported about her adoption of frequent rest periods:
"The effects have been instant and quite phenomenal. It's turning out to be the best treatment I've ever tried. And it's free!!!"
3. Set Limits for Individual Activities: To translate activity limits into practice, many people set limits on particular activities. For example, they limit how long or how far they drive, how long they spend on the computer or the phone, the time they spend socializing or how long they spend doing housework.
You can find your limits by experimenting, as described above. Some people enforce their limits by using a timer.
4. Use Short Activity Periods: 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.
One person in our program does ten minutes of housecleaning, rests for five minutes, then does another ten minutes of cleaning.
For the people who use this strategy, alternating periods of activity and rest seem to expand their functional capacity, allowing them to accomplish more of the tasks they set out to do.
5. Practice Activity Shifting: Another strategy for getting more done is to shift frequently from one activity to another, for example switching between physical, mental and social activities.
For example, if you find yourself tired or confused after working on the computer for a while, you might stop and call a friend or do something physical like fixing a meal.
Another way to use task switching is to divide your activities into different categories of difficulty (light, moderate and heavy), switch frequently among different types and schedule only a few of the most taxing activities each day.
6. Pay Attention to Time of Day: Most people with CFS 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.
A woman in one of our groups found her best time of day for mental activity was in the afternoon. If she studied then, she could read for twice as long as in the morning, with a higher level of understanding.
7. Keep a Health Log: A few minutes a day of record keeping can give you get a clearer picture of your limits and reveal the connections between what you do and your symptoms.
Also, a health log can help you hold yourself accountable for your actions by documenting their effects on your health and symptoms. Third, records can motivate you by showing you that staying inside your limits pays off in lower symptoms and a more stable life.
8. Develop Personal Rules: Some people with CFS have had success using very detailed and individualized rules to protect them from doing too much.
For example, one person with severe CFS has three rules: no more than three trips outside the house per week, no driving beyond 12 miles from home, and no phone conversations longer than 20 minutes.
Other people develop rules for specific circumstances. For example, they might limit themselves to 15 minutes on the computer or two hours socializing.
If you develop specific rules for yourself, you can simplify your illness management program and counteract brain fog into asking yourself two questions: What situation am I in right now? What is my rule for this situation?
9. Make Mental Adjustments: Pacing means adopting new habits, but it also requires making psychological adjustments rooted in an acceptance that life has changed. Acceptance is not resignation, but rather an acknowledgment of the need to live a different kind of life.
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 or self-talk, so that it supports 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."
Pacing is not a quick fix or a panacea. It requires many small adjustments in how you live your daily life. It is not a single action or strategy, but rather a way of living with CFS. But the rewards of pacing, used consistently, are greater control, lower symptoms and, for some, expansion of the energy envelope and even recovery.