The Patient's Guide to Chronic Fatigue Syndrome & Fibromyalgia
The last chapter outlined several ways to define the limits imposed by your illness. This chapter, which is based on the idea that you can improve your life if you adjust to your limits, describes many different strategies for successful adaptation. They all come under the idea of pacing.
Pacing offers the possibility of a more stable and predictable life. With pacing, you can 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.
The first pacing strategy is priority setting. Having a serious illness means that you can't do everything you would like to do. How do you decide what to do when you can't do it all? One way is by setting priorities. There are many systems for establishing priorities. I'll outline two, but you might feel more comfortable with another approach.
In any case, I suggest that you consider going through some explicit process of deciding what's important to you. An exercise forces you to make choices and you are likely to be more satisfied with your life if you use your time in a way that reflects your values.
Here's one way to set priorities. First, list the activities you do in a typical week, making an estimate of the time each takes. Second, add up the times and compare them with the limits you established by using the CFS & Fibromyalgia Rating Scale or the envelope exercise in the previous chapter.
If the 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. 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 eliminate others.
Another way to set priorities is to keep a chart for a week of how you use your time. For each hour of the day, jot down one or a few words to describe how you spend your time, using categories that are meaningful to you.
Here's one list: work, housework, family, spouse/partner, friends, exercise, hobbies, TV/entertainment, time alone, rest and sleep. At the end of the week, analyze to see if your use of time is consistent with your values by rating each as "OK," "+" (want to do more) or "-" (want to do less).
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 clean your house. 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. Perhaps you can suspend your volunteer work or put some friendships on hold.
Another part of pacing is setting limits. Limit setting means that you stop doing some things entirely and reduce the amount or time spent on others. An example of the former is given in Eunice Beck's article, titled 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." She also lists putting the needs of others before her own.
You can find an example of the power of setting time limits on activity in Bobbie Brown's article, titled 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:
- Computer and phone time
- Stress and sensory input
- Travel and time outside the house
- Household and family responsibilities
In addition to controlling symptoms through limiting your overall activity level, you can affect your symptoms by adjusting how you are active. Here are several techniques our students have found useful.
Short Activity Periods & Spreading 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 on her sense of accomplishment:
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 reward in symptom avoidance can be great, too. 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 days if they continue for half an hour.
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 from Chinese into English.
Through experimentation, 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, 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.
Another strategy for getting more done is activity shifting. Some patients use this idea to move 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 some food.
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, 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.
Time of Day
You may be able to increase the amount you get done, without spending more time or intensifying your symptoms, by changing 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. Here's what one student has discovered:
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.
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. 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.
Controlling Symptoms with Rest
Integrating scheduled rest into your life is another way to control symptoms and to bring greater predictability. Scheduled rest is something different from rest used to recover from overactivity. We call resting in response to symptoms recuperative rest. That use of rest is an effective strategy for recovering from relapses.
The rest I will discuss in this section is a preventive measure. By taking daily, planned rests you may be able to avoid flare-ups and escape the cycle of push and crash. We call planned rests of this sort pre-emptive rest.
Defining Rest: Lying Down, Eyes Closed
We use the term "rest" in a special way in our program. For us, 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 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 rest means lying down with my eyes closed (without television or the telephone)."
Pre-emptive rest means resting daily according to a planned schedule. The length of the rest period and the number of rests per day vary from person to person. For those people in our program who have used it, pre-emptive rest has usually meant taking one or two rest breaks a day of 15 minutes to half an hour each. The benefits of such rest are greater stability, reduced symptoms and greater stamina. Here's what some of our students have said about their experience with pre-emptive rest.
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.
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, 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.
Resting the Mind
When you begin using pre-emptive rests, you may find you are distracted by your thoughts. If that occurs, try using a relaxation technique or meditation practice during your rest. By focusing your attention on something other than your thoughts, you will relax your mind, making it easier to rest. (See step-by-step instructions for several relaxation procedures in Chapter 13.)
Frequent Short Rests
As the last 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 our 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.
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.
Consistency and Planning
Pacing means finding the right balance of activity and rest for your unique situation. Over time, you can extend pacing to your whole life, living your life according to a schedule in which activity and rest are consistent and planned. Implementing 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 increased 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. For more on setting up a daily plan, see the Daily Schedule section in Chapter 7.
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.
Developing routines is one way to increase consistency. 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.
I recommend that you establish time limits for each activity, because your body may not give you a signal at the time you have gone outside your limit. You may feel fine right after going outside your envelope, experiencing increased symptoms only later.
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 limiting your activity to 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. For more, see the Weekly Schedule section of Chapter 7.
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. (Chapter 7 discusses logging in detail.)
How to Succeed at Pacing
Dean Anderson wrote that living successfully with Chronic Fatigue Syndrome required that he adhere to a strict regimen "without periodically lapsing." While most people understand that staying within their energy envelope would bring a higher quality of life, many find it difficult to do. If you are in that situation, what can you do to increase your consistency in living within your limits? When we ask people who have been successful at pacing, they make the following suggestions.
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." For guidelines and sample daily and weekly schedules, see Chapter 7. A related idea is the development of new habits.
While pacing may seem daunting at first, it can become second nature over time as one's daily habits are altered. Bobbie Brown was able to do this, as described earlier in the chapter. She first learned her limits for activities such as driving, time on the computer and phone, and socializing. Then, she gradually altered her life to fit within the limits she had discovered.
One way that people get pulled outside their limits is by giving in to the temptation of doing something that seems appealing at the moment. A way to avoid such lapses is to stop and visualize how you will feel if you go outside your envelope.
One person said, "Imagining 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 that, when she is tempted to go outside her envelope, she reminds herself that all her actions have consequences and asks herself, "Can I live with the payoff...is this activity worth the payoff?"
Develop Personal Rules
Living by a set of personal rules means not having to think and also reduces the power of spontaneity to overwhelm good judgment. Some people have had success using very detailed and individualized rules to protect them from doing too much.
One person with a severe case of CFS 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. If you are bothered by brain fog, you might consider taping rules 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?
A related approach is, quoting the title of an article on our website, to develop a set of overall "Personal Guidelines for Managing Chronic Illness." The idea here is to have a few rules to guide your journey with chronic illness, a list you can turn to in times of confusion to guide you to a healthy decision.
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 makes a difference. For more on this topic, including sample health logs, see Chapter 7.
Heed the Body's Messages
Learn to listen to your body. You can gradually retrain yourself to respond differently to the signals sent by your body. Instead of forging ahead when you feel tired or in pain, you can learn to see symptoms as signals that it is time to rest. For more on spotting and heeding relapse warning signs, see the Relapse Worksheets section in Chapter 7.
Forgive yourself. No one stays in her envelope all of the time. Also, life has its ups and downs; some times are more stressful than others. Instead of beating yourself up when you slip or circumstances overwhelm you, it's better just to ask, "What can I learn from this experience?" and move on.
Limits and Work
What should you do if there is a conflict between work and your limits? Should you stay in your current job despite the suffering or should you make some kind of change? Work issues can be among the most difficult to sort out. There are major financial consequences to reducing your hours or leaving the workforce. Also, work provides social contact and is a big part of most people's identity.
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 CFS or fibromyalgia may be able to continue working full-time, accommodating to their illness by resting on weekends or reducing their social life.
On the other end, some people are so severely ill that they cannot work. 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.
Get Work Accommodations
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 applying for disability payments or opting for one of the alternatives described in the next three paragraphs.
Shift to Part-Time Work
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.
Take a Leave of Absence
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.
Note on Disability
Deciding when to apply for disability is complicated. If you work part-time over an extended period before applying for disability, you may lower how much you will receive under disability, since the amount of payment is based in part on earnings. If part-time work does not reduce your symptoms, it may be better to apply for disability quickly, rather than waiting. Eligibility for disability is based on recent earnings, so waiting to apply can create a complication.
One Person's Solution
For a discussion of how one person resolved her dilemmas about work, read Kristin Scherger's article on our site titled Expanding My Envelope: How I Balanced Work and CFIDS." After coming down with CFIDS (her term for Chronic Fatigue Syndrome), Kristin, an occupational therapist, first switched from full-time to part-time.
That solution didn't work; she still experienced high symptoms and her life felt out of control. Through counseling, she recognized that she wasn't improving and that CFIDS was an ongoing, not a temporary, part of her life.
Logging convinced her that she was outside her energy envelope. She rated herself about 30 on our scale on days she worked, but 45 when not working. She decided that if she didn't change careers, "I would never get off the roller coaster."
Her switch to an administrative position enabled her to achieve stability and expand her energy envelope. She wrote about her new life: "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.
Kristin's story illustrates two common experiences of patients' struggle to balance illness and work. First, finding a long-term solution often takes some time. Kristin tried several arrangements before finding one that worked for her. Second, the eventual solution usually respects illness limits. Kristin's attempts failed until she found a situation her body could tolerate. Once the strain was removed, her body was able to heal enough to expand her limits.
Vacations, Holidays and Other Special Events
Special events, such as vacations and family holidays, present a double challenge to people with chronic illness. Non-routine events require more energy than everyday life, temporarily shrinking your energy envelope. If you don't decrease your activity level to match your temporarily smaller envelope, the event will intensify your symptoms.
At the same time, you may want to be more active than usual or feel pressured by others to be more active, a second potential cause for a relapse. So, a special event shrinks your envelope at a time you are tempted to do more than usual. How can you respond to this dilemma in a way that allows you to enjoy the event without paying too heavy a price? Students in our groups have suggested several strategies.
The most common strategy is to rest before, during and after the event. Store up energy by taking extra rest before the event; limit symptoms by taking extra rest during; 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 person 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 plan your trip in great detail. 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 talking about your limits to the other people involved in the event. After you have decided your level of participation, tell them 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.
Because special events are anticipated, you can plan for them. One planning technique is the Special Event Worksheet, which is described in Chapter 7. This form helps you to decide how you will use your time during the event and also the actions you can take in the period leading up to the event and the time after the event.
Other Tips and Techniques
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 while reading or move to a quieter place. If noisy restaurants bother you, try visiting during slack times. If you find large groups difficult, try getting together with only a few people. If media bother you, limit your exposure, especially to movies and TV.
Patients with neurally mediated hypotension (NMH) are sensitive to standing, since they are subject to sudden drops in blood pressure that leave them feeling faint. An energy saving technique (and safety measure) 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 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. With the cart, she didn't need any rest at all 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. 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.
Two Success Stories
To give you an idea of what can be accomplished through pacing, I will describe the experience of two people with Chronic Fatigue Syndrome: JoWynn Johns and Dean Anderson. JoWynn was severely restricted by her illness, but improved over a period of years by living within her energy envelope.
Dean functioned at a higher level initially and eventually recovered. (Both wrote articles for the CFIDS Chronicle, the magazine of the CFIDS Association of America. We have posted the articles in the Success Stories section of our website.)
Learning to Control Symptoms
After a career as a corporate executive and management consultant, JoWynn Johns developed symptoms of CFS in 1991. She divides her response to CFS into five phases. In the first two years, a period that she calls "keeping on with my life," she continued to live a busy life "despite feeling awful."
From 1993 to 1997, a time she calls "all-out effort to get well," she experienced a collapse and responded by trying many different approaches, including exercise, yoga, meditation, homeopathy, special diets, medications and supplements.
None of the strategies she tried helped her and she experienced repeated cycles of push and crash. Two changes occurred during this period that pointed her in a more productive direction. 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.
In the third phase, "learning from my own body and experience," JoWynn aimed to determine what she had to do to feel better. She began by asking herself what it would mean to have a "good day." She decided that a good day meant a day with no minor symptoms and a minimal level of 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.
She then asked, "What do I have to do to have good days and good nights?" After studying her journal and notes, she concluded that she could have good days if she met 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.
This was her energy envelope, her set of limits. Staying within them offered her a way to feel "as good as possible." (Her limits were quite restrictive, corresponding to a score around 20 on our Rating Scale. Your limits are likely to be different.)
In the next period, which she called "developing a feedback system," JoWynn focused on developing a record keeping system. It included a monthly calendar, on which she noted her activities and symptoms for each day, with grades for each day and night as good or bad.
She used color coding so she could see at a glance how she was doing, saying "I find this kind of visible feedback motivating." 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 stress provoked symptoms just as much as physical activities. Explaining the motivation for her elaborate scheme, she said:
I needed to make this information visible to prove to myself the effects of mental and emotional exertion, as well as physical activity. I also wanted concrete evidence of the effects of staying inside my envelope. Because limiting my life in this way is so very hard for me to do, I had to show myself that it was worth it.
She called the last phase "accepting my envelope." Living within her limits, JoWynn was able to greatly reduce her fatigue and other symptoms. 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."
Updating her situation in 2006, she wrote, "I have adapted to CFS. It's been many years since I've been as sick as I was early on." Also, she reported some improvements in her condition. She had not experienced IBS for two years and her sleep was noticeably better.
Also, she reiterated her belief in the value of a self-management approach, saying "Over the years I've experimented with various treatments, remedies, regimens, supplements, and even, briefly and with bad results, some medications. None has made the slightest difference in my well-being. The only things that make me feel better and keep me relatively stabilized and able to achieve my priorities are scheduled resting and pacing."
A Recovery Story
Dean Anderson's experience was different from JoWynn's in some respects, but similar in others. His starting point was higher; he functioned at about 60 percent of normal in the early years of his illness. His final outcome differed as well; he was able to recover and return to full-time work, travel and an active social life. But even if his starting and ending points were different from hers, his approach was quite similar.
Writing nine years after the onset of CFS, he reported that most of his recovery occurred after his fifth year of illness. He found that both attitude and actions were crucial to his improvement. To explain the former, he wrote that his approach to CFS had changed over time. Initially, he believed that he could recover through determination and hard work, through trying to get well. Using this approach, he experienced some improvement, but he found himself devastated by relapses, which he viewed as signs of a failure of will power.
Over time, he came to believe that the key to his recovery was to adopt a different attitude, which he called a particular 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 explained:
The "effort" required to recover from CFIDS is an exercise in discipline and hopefulness, not determination and striving. The discipline required is exactly the opposite of the discipline so valued in the scholar, professional or athlete. It is the discipline to recognize and adhere to one's known limitations and to follow a strict regimen without periodically lapsing. It is the discipline not to succumb to family or societal pressures to get back into the rat-race. It is the will to protect oneself, to not over-do and to find ways to be productive and find fulfillment under unfamiliar and difficult circumstances.
His is not the attitude of conquering illness, but rather one of listening, understanding and adapting to it. He emphasized living within limits in a disciplined and consistent way, staying true to what his body required, and looking for ways to find meaning in a different kind of life.
He wrote that he enjoyed a good relationship with his physician, but experienced no benefit from visits with a chiropractor, a homeopathic doctor and an acupuncturist. He also tried various alternative treatments, but concluded that none of "the remedies, medicines or food supplements I tried helped me one bit." He came to believe that recovery would depend solely on his efforts and, with that belief, formulated a "recovery strategy."
A central element was defining a safe level of work. Through experimentation, he concluded that he could work six hours a day without intensifying his symptoms or jeopardizing his recovery. He sought out assignments away from the home office of his company, so that he could have better control over his daily schedule.
Although he continued to be quite symptomatic, he was successful in working at that level while improving very gradually. He used the hours freed up by his part-time schedule for self-care. He got out of the office for lunch and spent part of his lunch period resting. Also, he took an hour-long nap and did 20 minutes of visualization after he got home each day.
He had other routines and limits as well. On business trips, he refused to take overnight flights, took naps after arriving at his destination and declined many dinner invitations. Summarizing his strategy, he said, "I gradually learned to pace myself to stay within my limits."
He also exercised on a regular basis, experimenting to find his limits in that part of his life, just as he had with work. He used a heart-rate monitor to assess the intensity of his workouts and kept records of "exercise duration and how I felt before, during and after each workout, and especially how I felt the next day."
He found his best time for exercise (late afternoon or early evening, after a nap) and the "right kind, intensity and duration of exercise for me." He alternated aerobic exercise and strength training. More importantly, he developed a new attitude toward exercise. A recovered "exercise junkie," he trained himself to enjoy exercise for its immediate benefits, without having any goal of progressing.
As he improved, he gradually expanded his work day, with much of his improvement coming after his fifth year of illness. He summarized his advice to other patients using the words acceptance, discipline and hope. He believes that what CFS 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 Fatigue Syndrome. 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.
Both had a flexible approach, in which they continually reflected on and learned from their experience. And they both found the key to improvement lay in disciplining themselves to live consistently within the limits of their illness.
Their experiences suggest that patients may be able to exert significant influence on their symptoms and quality of life using pacing, although each person's illness may set a different ceiling on the extent of improvement possible in activity level.
CFIDS and Fibromyalgia Self-Help website: In the Library section, see Success Stories for articles by Dean Anderson, Bobbie Brown, JoWynn Johns and Kristin Scherger. See Coping Strategies for the article on personal guidelines.