The CFIDS & Fibromyalgia Self-Help Book

Chapter 6: Pacing

The push and crash cycle described in the last chapter can be demoralizing. You can easily feel frustrated and depressed by the thought that you are caught in a closed loop, cycling helplessly between overactivity and rest. But there is another way to live with chronic illness. You can lead a more stable and predictable life by pacing yourself.

Pacing means finding the right balance of activity and rest for your unique situation. With pacing, you can learn to live your life according to a plan rather than in response to symptoms, so you have a sense of managing the illness rather than the illness controlling you. Pacing offers an alternative to the repeated cycles of push and crash, a way to flatten out the chronic illness roller coaster.

Living within limits means not being able to do everything you want to do. To help you decide how to use your available energy, it helps to set priorities. Priorities give you a way to decide what to do when you can’t do it all. There are many systems for determining what is most important to you. I’ll suggest a three-step approach below, but you might feel more comfortable with another system. The important thing is to recognize that limits force you to make choices.

Here’s one way to set priorities. First, list the activities you do in a typical week, making note of the time each takes. Second, compare the times with the limits you established by using the Rating Scale in Chapter 1 or the energy envelope exercise in Chapter 5. If items on your list take more time than your limits allow, you will have to make some adjustments in order to stay inside your energy envelope. Third, decide what activities you will keep and which ones will be modified or dropped. To help you decide, you might give your activities different priorities such as A, B and C. You will keep those that are most important to you, but may have to modify or drop others.

For those items that you can’t do or can’t do in the same way as before, try thinking in terms 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 elaborate meals. Finally, you may decide to eliminate some activities or relationships. Perhaps you can suspend your volunteer work or drop some friendships. Setting priorities involves making mental adjustments. Accepting that you can’t do everything that you did before is part of coming to terms with loss. (See Chapter 13 for ideas about managing loss.)

One clever approach to setting priorities is to make a “not to do” list. Eunice Beck describes this strategy in an article reposted on our website. 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.” She also lists putting the needs of others before her own.

You may be familiar with rest as a means to recover from overactivity. That use of rest is a common reaction to intense symptoms and an effective strategy for recovering from periods of doing too much. We call resting in response to symptoms recuperative rest. But rest can be used in another way as well, as a preventive measure. By taking planned rests on a regular basis, you may be able to prevent flare-ups or reduce their intensity. For some people, rest can even promote recovery. We call this approach pre-emptive rest.

If you ask people who have taken our course what one idea they found most valuable, many would answer pre-emptive rest. Such rest has been very important in my life, too. I believe that daily scheduled rests, taken no matter how good I felt, were perhaps the single most helpful tool in my recovery. Taking short morning and afternoon rests made a dramatic difference, stabilizing my life, increasing my stamina and reducing my symptom level. Resting on a fixed schedule, not just when I felt sick or tired, was crucial to shifting from living in response to symptoms to living a planned life.

Before discussing how you might use planned periods of rest, let me explain what I mean by the term “rest.” In our program, rest means lying down with your eyes closed in a quiet place. We do not consider such things as watching TV or reading to be rest. We view them as activities. They may require less energy than housework, errands, or paid work, but they are activities nonetheless.

Here’s what one student said about rest after taking the 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 rest means lying down with my eyes closed (without television or the telephone).”

Pre-emptive rest (lying down according to a planned schedule) is a time you set aside to nurture yourself. 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 resting now you are avoiding symptoms in the future.

As mentioned earlier, scheduled rests have been one of the most frequently used strategies among people who have taken our course. Although the length of rest varies from person to person, for most people pre-emptive rest has meant taking one or two rest breaks a day of 15 minutes to half an hour each. Here’s what some people from our groups have said about the effects.

Making sure I have a short break or two in the day where my body and mind are completely relaxed and at ease is really beneficial for increasing the amount of activity I can tolerate and how I feel.

[Right after starting the class,] 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.

Since I’ve been forcing myself to rest every day, I have found I have more stamina. And I’ve noticed the graph of my days doesn’t dip and rise so steeply.

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.

When you begin using pre-emptive rests, you may discover that your mind is pre-occupied with worries. Lying down may not feel restful if your mind is full of anxiety. A solution is to use a relaxation technique or meditation practice during your rest. (See Chapter 9 for specific procedures.) Most people who have done this have found that combining mental with physical relaxation deepens the restorative power of rest.

You may want to experiment to see what works best in your situation. As one quotation above suggests, some people find it helpful to take several daily pre-emptive rests, rather than one or two. One person who tried this was a woman 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.

At the beginning of the course, she was resting six hours during the day, taking 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. By doing so, she reduced her total rest time by an hour and a half over a period of two months, and after six months 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.

Another pacing strategy is activity scheduling. Just as scheduled rests may help you, you may be able to accomplish more without intensifying your symptoms by planning your activities. Here are several techniques our students have found useful.

Just as you may benefit from breaking up your rest time, you may be able to control your symptom level if you break up your activity. 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 student reported:

Even though I have reduced the amount of time that I allow myself to do a task (kitchen 10 minutes, computer/reading 15-30 minutes), I am amazed at the end of the day how much I have actually done.

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 out activities through the week, rather than trying to do many things in one or two days.

One student proved that you can still get a lot done even if you break up your activity periods into very small units. She had a goal of translating 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 was pleased when she completed her translations in five months. An hour a day of work produced a big result. After that experience, she expanded her activity further. Over a period of months, she increased her work periods from four to eight a day.

Another strategy for getting more done is activity shifting. Some patients use this idea to move from one type of activity to another, switching between physical, mental and social activities. If you get tired working on the computer, for example, you may be able to call someone or prepare part of dinner.

Other patients divide their activities into different categories of difficulty. They schedule only a certain number of the most taxing activities a day and make sure to switch frequently among different types. Here’s what one student does:

I divide activities into light, moderate and heavy, 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.

You may be able to increase the amount you get done without spending more time or intensifying symptoms by experimenting with when you do things. Many patients find they have better and worse times of the day. 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.

This principle applies to both physical and mental activity. One student reported on her experience with 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 reported on her experiments with time of day and mental activity. She was bothered by the effects of brain fog on her ability to read and retain information. She was concerned because she was able to read for only a half hour a day, and had trouble remembering what she read. She had been reading in the morning, because she thought it was her best time of day. But she decided to experiment with studying in the afternoon. She found that if she started the afternoon with a brief rest, she had good mental stamina from mid-afternoon through most of the evening. If she studied during that time, she could read for two 30-minute sessions with a short break in the middle, and retain the information afterward. Experimenting with time of day enabled her to double her study time and increase her comprehension.

Planning

Pacing means finding the right balance of activity and rest for your unique situation. Over time, you can extend your pacing by living your life according to a schedule of activity and rest, making activity and rest consistent and planned. To implement this approach involves planning in advance what you are going to do for a day and a week, and then sticking to it as much as possible. 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. To the extent you can live according to your plans rather than in response to symptoms, you will achieve a more predictable life, gain an increasing sense of control over your illness, and may be able to expand your energy envelope.

You might start by planning a day at a time. In the morning or, even better, 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.

Be sure to include rest in your plan. As described in the section on rest above, rest 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. Here’s how one student described her planning.

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.

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.

I recommend that you set your activity level in terms of time, rather than waiting until your body tells you with higher symptoms that you have done too much. Often the body gives misleading signals. You may feel fine even after you have gone outside your envelope. The effects of overexertion are often delayed, so that you cannot rely on your body telling you when to stop. If you find your limits through experimentation, you can avoid crashing by being active for a length of time you have found to be safe.

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 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. (Logging is discussed in detail in the next chapter.)

Developing routines is a helpful way to live consistently. 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.

Here’s what one student reported:

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.

Some people have had success using very detailed and individualized rules to protect themselves from doing too much. One person with a severe case of CFIDS developed three rules for herself: 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. Having these rules helped her keep a focus on long-term goals when she was tempted to act in the moment. A variant on this strategy is to write out a daily schedule. If you are bothered by brain fog, you might consider taping a schedule in some prominent place like the refrigerator.

Some people create a series of rules for specific circumstances. For example, one person noticed that he often returns to a normal activity level too soon after a cold or flu. He made a rule to take extra daily rest for at least a week after symptoms from the secondary illness had ended. If you develop specific rules for yourself, you can simplify your illness management program into asking yourself two questions: What situation am I in right now? What is my rule for this situation?

The Psychology Of Pacing

People in our groups often struggle with pacing. They believe it would be helpful, but they find it difficult to do consistently. If you are in that situation, what can you do to increase your consistency in living within your energy envelope? When we ask people who have been successful at pacing, they report using the following strategies.

The first is to visualize consequences. One way that people get pulled outside their limits is by giving in to the temptation to do too much. A way to avoid such lapses is to visualize how you would feel if you go outside your envelope. One person said: “Feeling the fatigue and brain fog provides a counterweight to the immediate pleasure I anticipate from doing something that takes me beyond my limit.” Another person said she imagines that she is coming to a fork in the road and visualizes the experience she would have going down each path.

The second is to use routine. Having a regular daily schedule eliminates a lot of decision-making. One student said: “Instead of having to ask whether something is or is not within my envelope, I have tried to stick to a schedule I know is safe.”

The third is to develop personal rules for specific situations, as described in the last section. Living by a set of personal rules means not having to think and also reduces the power of spontaneity to overwhelm good judgment.

Another technique is to keep records. A health log can be a mirror you hold up to yourself, providing both positive and negative motivation. Having written proof of the effects of your actions can help you to hold yourself accountable for your actions. Also, you can use your health log as a positive motivator, providing proof that staying inside your limits pays.

Also, you can retrain yourself to listen to your body. You can gradually retrain yourself to respond differently to the signals sent by your body. Instead of “pushing through” when you feel tired or in pain, you can learn to see symptoms as signals that it is time to rest.

Last, learn to forgive yourself. No one stays in her envelope all of the time. Instead of beating yourself up when you slip, it’s better just to ask: “What can I learn from this experience?” and move on.

Should you continue working? If so, can you stay in your current job or should you make some kind of change? Work issues are among the most difficult to sort out. There are major financial consequences to reducing your hours or leaving the workforce. Also, work involves self-esteem, provides social contact and holds many of our dreams for the future.

If you are on either end of the spectrum in terms of the severity of your illness, the answer may be obvious. Those who are minimally affected by CFIDS or fibromyalgia may be able to continue working full-time, accommodating to their illness through such strategies as rest on weekends or a reduced social life. On the other end, some people are so severely ill that they must stop working. For them, pursuing private disability payments through their employer, government benefits from Social Security or both may be the best course.

For those in between, here are four options to consider.

According to the Americans with Disabilities Act, employers are obligated to make “reasonable accommodations” for people with disabilities. Such accommodations may include making changes in work schedule such as using flextime, getting an ergonomically appropriate chair or changing job responsibilities. Utilizing accommodations can be a way to test whether work is feasible. If you are unsuccessful in your efforts to shape your work to your limitations, you may want to consider disability or some of the options below.

Some patients respond to their limitations by changing from full-time to part-time work. Working 15 or 30 hours a week is less taxing than having a full-time job, allowing for a less hectic pace of life and more time for rest. It may also allow for a more flexible schedule. Reductions in hours can also be accompanied by a change of work, to a position with less responsibility. Like reducing hours, changing positions can free energy for other purposes, although such a change requires some emotional as well as financial adjustments.

Some companies allow employees to take a leave of absence for periods up to several months. Being off work can allow you to focus on healing and may help you clarify whether you can work and, if so, how much.

Lastly, you might consider changing careers to pursue work that is consistent with the limits imposed by your illness. People in our program have made changes to positions with less responsibility, to jobs that were less taxing emotionally and to work that was less physically demanding. Some have developed home-based businesses, especially ones that allowed them flexible schedules to accommodate the ups and downs of their illness.

Let’s look at career dilemmas through the lens of one person’s experience. Kristin Scherger is a CFIDS patient who has gone through a career change in recent years. She wrote about it in an article posted elsewhere on this site. Her experience illustrates many of the problems and dilemmas of trying to combine work and chronic illness.

Kristin became ill with CFIDS about a year into a career as an occupational therapist. She describes her life at that time as “like riding on a roller coaster.” She alternated between periods of work and times when she collapsed in bed. She wondered whether she might have to give up her “dream career.”

Her first attempt to solve her career dilemma was to go part-time. Working in the morning allowed her to rest in the afternoon and evening, but she found that she couldn’t improve even with this arrangement. She then tried working as an “on-call” occupational therapist, working when a hospital needed extra staff. This didn’t work out any better, probably because of the unpredictability of the work.

Two things pointed her in a new direction. First, through counseling she recognized and acknowledged that she wasn’t getting better. Instead of seeing CFIDS as a temporary problem, she came to accept that CFIDS was a central, ongoing part of her life. Second, she used logging and the idea of the energy envelope to make sense of her work experience. Through logging, she saw “an obvious connection between a day of work, and a severe spike in my symptoms.” She came to believe that her life was an example of an individual living outside her energy envelope.

She writes: “Logging convinced me that I had to change careers. My records showed clearly that during weeks I worked, my symptoms were high and I was not able to do much beyond going to work, resting up for work, or recuperating after work.” She placed herself between 20 and 40 on our Rating Scale for these times. Her life was quite different when she didn’t work. She had much lower symptoms and rated herself between 40 and 50. “I concluded that I needed to leave my career as an occupational therapist and find work that was within my energy envelope. If I did not do this, I would never get off the roller coaster.”

After applying for various jobs, she was offered a temporary position with a local park district. The job led to a permanent position. More importantly, her career change enabled her to achieve stability and expand her energy envelope. “My activity level and symptom level are now even better than those times a few years ago when I was not working at all.” She rates herself at 60 most of the time and sometimes higher.

Non-routine times like vacations and the holidays present special challenges to people with chronic illness. Expectations, both from self and others, are strong. It is tempting to pretend we can do everything we did when well, but this usually leads to a flare-up. On the other hand, you don’t want to eliminate the good times altogether. How can you handle special events in a way that allows you to enjoy them, but without paying too heavy a price? Students in our groups have suggested the following strategies.

The most common strategy is to rest before, during and after a special event. Store up energy by taking extra rest before the event; limit symptoms by taking extra rest during it; and take whatever extra rest is needed afterwards. A member of one of our groups gave an example. If she is going on a one-week vacation, she plans for a two-week period. She makes sure that she doesn’t take on any extra activities for a few days before and a few days after her trip. She also makes sure that she paces herself carefully during the trip, resting during her non-active times. After returning, she continues to take extra rest. Another student reported a similar strategy.

It took me quite a while, but I finally realized the toll that travel and driving have on me. I accommodated by adding more rest: before, during and after trips. For a week or so before, I double my normal daily rest time. I spend more than usual amounts of time resting while on vacation, and extend the practice for several days after returning. Also, I have had good success in reducing the effects of driving if I stop every two hours, tilt the seat back and snooze for 10 to 15 minutes.

Another strategy is to do detailed planning before a trip. Be scrupulous about deciding what to take, especially those things you will need for rest. Find out the schedule of events ahead of time and decide how much activity you will have. Here’s one student’s description.

Making a commitment to myself to stay within a safe activity level has helped me resist the temptation to do too much when on the road. I can say to myself: “I know you want to do this and people are pressuring you, but you decided before you came that this wouldn’t fit into your envelope.”

A third technique is to set limits with others. After you have decided your level of participation, communicate with others so they know what to expect from you. If you discuss your limits with others ahead of time, you can reduce the chances for surprise or disappointment. Consider staying in a hotel instead of with relatives for privacy and easier control over your activity level.

You may also make your special event easier if you delegate. One way to enjoy a trip or special event is by passing tasks on to others. If you are accustomed to doing all the cooking for a holiday celebration, ask family members to each bring a dish. While traveling, allow others to drive.

Finally, adjust your expectations. Instead of resenting all you are not able to do, focus on what you can do. Here’s what one person said.

I have benefited from the idea that half a loaf is better than nothing...both for me and for others. Even if I haven’t been able to do everything I did before becoming ill, making compromises has enabled me to participate at times somewhat outside my envelope so that I increased my symptoms somewhat but didn’t suffer a bad flare-up.

Many patients have an increased sensitivity to light and sound. They find their concentration is affected by having too much sensory information. 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. Or you may function well in a group of two or three, but feel overwhelmed by a group of ten. Also, some people find it helpful to limit their exposure to media, especially movies and TV.

Patients with orthostatic intolerance are sensitive to standing. An energy saving technique is to sit down to prepare meals and to use a plastic stool or chair while showering.

You may be able to get more done, avoid symptoms or both by using devices to help you. Some patients whose tolerance for standing is low, who are sensitive to sensory input or both find shopping easier if they use a wheelchair or motorized cart. Many large stores have such devices they make available for free.

One student reported dramatic results when she began using a motorized cart in the grocery store. She used to rest for two hours after buying her weekly groceries. She resisted using a cart for several years because she thought she would be embarrassed and because using a cart would be an acknowledgment of the severity of her illness. When she tried a cart, she found that she didn’t need to rest after grocery shopping.

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. By relaxing, you may be able to limit the production of adrenaline, preserving your free energy for other uses.

A student in one of our classes 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, a sign that she had overdone it. At a similar party a year later, she created different expectations for herself by imagining that she was a queen who was observing the situation from a throne. Freed from her 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.

To give you an idea of what can be accomplished through pacing, we are going to look at the experience of two CFIDS patients. One had been severely restricted by her illness, but improved over a period of years. The other was less restricted initially and experienced a recovery. Both improved by finding and honoring the limits imposed by their illness. Both wrote about their experiences in the CFIDS Chronicle, the magazine of the CFIDS Association of America. We have posted their articles in the Success Stories section of our website. 

The first patient is JoWynn Johns who contracted CFIDS in 1993 and was gradually rendered housebound after ignoring her illness for several years. Then she made many unsuccessful attempts to recover, trying exercise, yoga, meditation, homeopathy, special diets, medications and supplements. Finally, two shifts pointed her toward pacing. First, she began to listen to her body, asking what it needed. Second, she changed her goal. Letting go of the idea of recovery, she decided to focus on feeling better.

The first step in finding what could make her feel better was to define a good day. After some thought, she decided that a good day meant a day with no minor symptoms and minimal fatigue or other major symptoms. A good day also included being able to take a walk and do artwork. Because she found a strong connection between troubled sleep and bad days, she also developed a definition of a good night: sleeping at least seven hours and waking refreshed.

Her second step was to understand her illness through keeping health diaries. JoWynn used a record keeping system that included calendars, graphs and charts. Over time, she was able to see patterns. Predictably, poor sleep was associated with bad days. But she also found that mental exertion and emotional stresses provoked symptoms just as much as physical activities. Recording her experiences was crucial to recognizing some of the associations. She wrote: “I needed to make this information visible to prove to myself the effects of mental and emotional exertion, as well as physical activity.”

Her record keeping had another purpose as well. Not only did it help her recognize patterns between symptoms and events in her life, it also motivated her. “I also wanted concrete evidence of the effects of staying inside my envelope.... I had to show myself that it was worth it.”

The third step was to discover those things that made her feel better. She asked: “What do I have to do to have good days and good nights?” Using her records, she concluded that she could have good days if she met the following six conditions: spending 12 hours a day in bed, getting seven hours of sleep, staying at home, restricting her daily activity, working on the computer no more than an hour at a time and having no visitors or long phone conversations.

Living within these restrictions, JoWynn was able to limit significantly the fatigue and other symptoms she experienced. Over time, she significantly increased the percentage of good days in each month from about 35% in 1996 to 80% and more in 1999.

Updating her story at the end of 2002, she wrote: “I now have nearly 100% symptom-free good days. What a difference that makes! For me, having CFS is like having diabetes: it’s a chronic condition that can be managed and that requires lifestyle adaptations.”

A Story of Recovery

In describing his experience with CFIDS, Dean Anderson reported that he functioned at about 60 percent of normal in the early years of his illness. He was able to work part time for several years, gradually returning to full time. Writing nine years after the onset of CFIDS, he reported that he considered himself to be substantially recovered and had returned to a full life, including an activity level similar to that of other healthy people in their 50’s. He was studying for a Ph.D. and writing a book at the time his article was published. Most of his recovery occurred after his fifth year of illness.

When he first became ill, Dean believed that he could recover through determination and hard work. He was partially successful and experienced some periods of remission, but found himself devastated by relapses, viewing them as signs of the failure of will power. Over time, he came to believe that the key to his recovery was a certain kind of acceptance. He described it not as resignation, but rather “an acceptance of the reality of the illness and of the need to lead a different kind of life, perhaps for the rest of my life.”

He went on to say that “the 'effort' required to recover from CFIDS is an exercise in discipline and hopefulness, not determination and striving.” For him, discipline meant recognizing and adhering to his limits and following “a strict regimen without periodically lapsing.”

While he valued the medical help and support offered by his physician, Dr. Daniel Peterson, Dean came to believe that recovery “might depend solely on my efforts.” His “recovery strategy” had several elements in common with JoWynn’s approach to CFIDS. First, he too defined his activity limits and then adjusted his life to them. By experimenting he determined that he could work six hours a day without jeopardizing his recovery. Although he continued to be quite symptomatic, he was successful in working at that level while improving very gradually.

Second, he learned to stay within his limits by alternating periods of activity with times of rest. He reports that he used his lunch times for rest, left work promptly at the end of his six-hour day, and took an hour-long nap and did 20 minutes of visualization after he got home.

Third, he also used record keeping. He describes keeping a journal of “the substances and activities that seemed, no matter how subtly, to contribute either to remission or relapse.” He found, for example, that the time of day at which he exercised was important.

He summarized his approach using three terms: acceptance, discipline and hope. He believes that what CFIDS patients need is the strength to accept their condition even if others refuse to, the discipline to do consistently the things that promote improvement, and an attitude of hope.

Both JoWynn and Dean used similar strategies in responding to chronic illness. They began their quest for improvement by accepting the reality of the illness and the need to lead a different kind of life. They found their limits by listening to their bodies, by experimenting with different activity levels, and by keeping detailed records. They discovered that alternating scheduled rests with periods of activity helped them control symptoms. And both had a flexible approach, in which they were continually reflecting on and learning from their experience.

Both reduced their symptoms significantly through this approach. Their levels of functioning, however, are quite different. Dean has returned to a nearly normal life while JoWynn still lives a mainly home-centered life, though with minimal symptoms much of the time.

Both Dean and JoWynn found the key to improvement lay in accepting the illness and disciplining themselves to live within the limits it imposes. Their different experiences suggest that patients may be able to exert significant influence on their symptoms and quality of life using pacing, although illness may set a ceiling on how far each person can increase his or her activity level.