Author’s note: In England and Scandinavia, the coping technique of pacing is taught to patients, while in America, I feel the concept is often unused or misunderstood. Having used pacing myself for years, I’ve been very pleased with how it has helped me and would like to share what I have learned with other young people.
You wake up one morning knowing it will be a good day. Remembering all the things you were too ill to do last week, you begin at the top of the list. Before evening, you are close to collapse, and you spend the next two days in bed. On your next good day, the story repeats.
Does this sound familiar? Many young persons with CFIDS (YPWCs) push themselves all the time to walk a little farther or get just a little more done. Many of us do it in a desperate attempt to keep up with our friends, but we just end up falling further behind them. We all know this frustrating roller coaster. However, we have a technique called pacing that can flatten out the roller coaster. Pacing is not a cure, and it isn’t easy, but chances are it will improve your quality of life considerably.
Pacing is based on several principals:
Listen to your body.
Alternate rest and activity.
Do one thing at a time.
Choose low-energy activities.
Use energy-saving devices.
Listening to your body
Most of us are familiar with the “I need to lie down FAST” feeling and other near-collapse sensations. If you think back, this feeling usually will have been precipitated by at least one warning sign—for instance, an increase in symptoms. The trick is to stop your activity at the first warning sign. Then after a period of rest you will be able to do something else. Looking at symptoms as warning signs and not just a nuisance may seem weird at first, but when you get used to it, it becomes a reflex.
One Danish YPWC described it this way: “My back begins to hurt after awhile when I sit on a straight-backed chair. Before, I would sit until the pain was so severe I had to lie down, and it would take a long time before the pain went away. Now I lie down immediately when the pain begins. I have less pain, and I don’t have to rest for as long.”
Here’s how you get started: First, establish how long you can perform a particular activity. Forexample, you might try listening to music for 15 minutes. If you feel fine after that, try the same amount of that activity tomorrow and reassess. If you feel worse, 15 minutes was too much, so try just 10 minutes the next day. When you have found out how long you can listen to music without feeling worse and have done that every day for at least a week, you can try increasing the time by five minutes one day. If you feel worse, go back to your previous level. Don’t increase the activity further until you can handle the new level every day without getting worse. And don’t go beyond the time you set. That will just give you a relapse.
This method can be used for any activity. Write down how long you stay at each activity every day and how you feel afterward. This makes it easy to monitor progress. Don’t forget that listening to your body also involves willingness to cut down on activities when you feel worse. It’s better to cancel a bad day and feel better the next than to have many bad days in a row.
Alternating activity and rest
When your body tells you to stop, you must rest. Resting means lying down in a quiet place with your eyes closed. Watching TV, reading and listening to music are activities. Now as a young person, you might find resting boring. This is where alternating activity and rest becomes important. Let’s assume that you can mange an hour of activity every day. If you do that hour all at once, you will be bored stiff for the next 10 hours, probably being really exhausted from the activity. It’s much smarter to do 15 minutes of letter writing, 30 to 60 minutes of resting, 15 minutes of listening to music, rest again, etc. This also gives you the opportunity to assess your energy level on an hour-to-hour basis.
If you are severely ill, your activity periods will be short (perhaps five minutes) and the rest periods in between much longer. As you improve, the activity periods will get longer and the rest periods shorter. Don’t make the rest periods too short, and don’t begin an activity before you feel up to it. Again, breaking your limits is bound to catch up with you.
Doing one thing at a time
My activity level these days is quite high, but I can’t concentrate on something as simple as writing a postcard while I’m listening to music. It seems that doing two things at a time takes up twice as much energy. You will feel worse much faster. Instead, one should listen to music, rest, and then write the postcard. Your energy is precious; if you spread it out evenly over a day, you will enjoy it much more.
Choosing low-energy activities
This part will be hard for many of you, especially if you were very active before your illness. You may no longer be able to participate in competitive sports, but some activities can be continued with a little bit of imagination. I learned roller-skating by rolling slowly a few meters down the parking lot, resting on a fence, then rolling a little again. I did skiing, skating and swimming that way, too. Of course, I couldn’t do it very often, I didn’t get very good at it, and I envied the other kids who could go on for much longer than I could, but I got to try the stuff without severe relapses. Today, at 18, I can look back on 14 years of illness and say I didn’t lose my childhood, it was just different from others.
You might not have the self-control to stop such an activity before a collapse, so you may need to find new hobbies. Try to look at this as an opportunity to learn new things. Choose carefully, though. Some crafts may take you so long to prepare that you are exhausted after five minutes into the actual work. It’s better to find something that can be taken up and put down when you need to.
You might like to do something more serious than a mere pastime. With a language course on tape, you can learn as little as a sentence a day. If you have trouble reading, books on tape are available (see article on page 37). Watching TV and videos for much of the day can be tempting, but my own experiences with these are that they are powerful stimulants. You don’t use your body, but your mind, eyes and ears are constantly at work.
Using energy-saving devices
This is highly individualized. Try having a brainstorming session with someone who knows you well and go through what activities you do each day, what kind of symptoms you get from them, and how those things could be done differently. Remember that some devices may have drawbacks. For instance, a hands-free phone will save your arms, but then you can talk much longer, and talking uses energy, too.
The wheelchair is undoubtedly the most hated and most loved of all energy-saving devices. It takes a lot of courage to get it and use it, but those who have taken the step usually don’t regret it. The wheelchair saves energy because you don’t have to walk. But don’t use that saved energy to push the chair yourself. Your arms will get just as tired as your legs. And a mall or a school is just as noisy in a wheelchair as on foot.
When you get a wheelchair for the first time, try sitting in it at home at first. Then try a 10-minute “walk” outside and assess as described earlier under “Listen to your body.” Using a wheelchair has to be built up slowly like all other activities.
Pacing your schooling
The topic of coping with school is so big it deserves its own article, but the general concepts of pacing apply here, too.
Whether you try homeschooling, home tutoring, or part-time or full-time school, begin at a level you are absolutely sure you can manage. Your school will be much more pleased if you manage to increase your level of schooling rather than get worse and miss lessons.
I hope I’ve been able to give you a few ideas about coping with CFIDS. I have had good results, although progress has been slow. Reports from England suggest that improvement will come faster the shorter you have been ill, but it’s never too late to begin using these coping techniques. Just be patient. Don’t force the tempo, and please don’t expect miracles. If nothing else, pacing improves quality of life by flattening the course of the roller coaster and making it easier to plan ahead.