Does this sound familiar? We all know this frustrating roller coaster. There is, however, a way of stopping it. It is not a cure, and it isn't easy, but chances are it will improve your quality of life considerably. This method is called pacing.
Pacing is based on several principles:
This is perhaps the most important part of pacing. Many young people with ME push themselves all the time. "I just have to walk to the next lamp post." Most of us do it in a desperate attempt to keep up with our friends, but some believe that exercise improves their ME or are scared to become unfit. After a few months or years, we find out that exercise doesn't make us better, on the contrary, it makes us worse. But then what? The doctors can't give us a magic pill, and alternative therapies have few lasting solutions. There are, however, coping techniques that offer relief, and listening to your body is very effective.
Most of you will be familiar with the "I need to lie down FAST" -feeling and other near-collapse sensations. If you think back, this feeling will usually have been precipitated by at least one warning sign - for instance any increase in symptoms. The trick is to stop whichever activity you were at the first warning sign. After a period of rest you will then 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, and it keeps your level of symptoms down to a minimum. A Danish woman with ME wrote: "My back begins to hurt after a while 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 it 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."
In the beginning, you may have trouble reacting to the "small signs" and be unsure about how long you can perform an activity. There is, however, a simple way to find out. First, choose the activity you want to assess. I will use listening to music as an example, as this is something most of us can do. Second, take an objective look at your activity level. Will 15 minutes be too much - or could you manage 30? We decide that 15 minutes is enough, and you listen to music for 15 minutes. How do you feel afterwards? Worse? If you feel fine, try the same amount of time tomorrow and reassess. If you feel worse, 15 minutes was too much. If you feel OK again tomorrow, try it again with just 10 minutes. When you have found out for how long you can listen to music, and have managed that amount without exacerbation every day for at least a week, you can try increasing. Try five minutes more one day. If you feel worse, go back to your previous level, if you feel fine, do it again tomorrow. Don't increase the activity further until you can do it every day without getting worse. And please, don't cheat yourself! That will just give you a relapse.
This method can be used for all activities. Buy a planner and write down how long you stay at each activity every day. This way it's 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 fine again the next than to have many bad days in a row.
Alternating activity and rest
You might have asked yourself: "What do I do when my body tells me to stop whatever I was doing?" Well, you rest. What is rest? Resting is lying down with your eyes closed in a quiet place. Watching TV, reading and listening to music are activities. Now you might think: "But that makes resting BORING!" Well, yes, it does. This is where alternating activity and rest becomes important.
Let's assume that you can manage an hour of activity every day. If you do that hour all at once, you will be bored stiff for the next ten hours, probably being really exhausted from the activity. It's much smarter to do 15 min. of letter writing, 30-60 min. of resting, 15 min. of listening to music, rest again, etc. This also gives you the opportunity of assessing your activity level on an hour-to-hour basis. After 15 min. of an activity, you might like to go on, but after a few minutes of rest you might change your mind and think that resting was an excellent idea.
If you are severely ill, your activity periods will be short (five minutes) and the rest periods in between much longer (60 min. or more). When you improve, the activity periods will be 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, cheating yourself is bound to fall back on you. You might choose to look upon "alternating activity with rest" as "activity as a reward for boredom". The English doctor Darrel Ho-Yen has good experiences with this.
Doing one thing at a time
My activity level is quite high, but I can't concentrate on even writing a postcard when listening to music. One could say that doing two things at a time takes up more than 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, as you have so little of it, and if you spread it out evenly over a day, you will enjoy it much more. This principle of doing one thing at a time can be followed into the extremes. You must choose how rigidly you wish to do it, but it is quite effective, so give it a chance.
Choosing low-energy activities
This part will be hard for many of you, especially if you were very physically active before your illness. How can one play football if one can hardly walk around the block? Some interests can be continued with a little bit of imagination. I learnt roller skating by rolling a few meteres down the parking lot, resting on a fence, then rolling a little again. I did skiing, skating and swimming that way. Of course I couldn't do it very often, I didn't get very good at it, and I of course envied the other kids who could go on for much longer than I, but I got to try the stuff without severe relapses. Today, when I'm 18, I can look back on my 14 years of illness and say that I didn't lose my childhood, it was just different from the others'.
You might not have the guts or self-control to stop sports-like activities before you collapse (or you might be too ill to try them at all). The solution is of course to find new hobbies and interests. Try to look at this as an opportunity to learn new things. When finding new hobbies, it will be a good idea to choose some that can be done for short periods of time. Some crafts may take you so long to prepare that you are exhausted five minutes into the actual work. It's better to find something that can be taken up and put down when you need it. If the activities you choose are low-energy enough, you will still be able to do them, on a smaller scale, if you relapse.
You might like to do something "more serious" than mere pastimes. 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, and you might even be able to get a "tape friend" instead of a pen friend!
Watching TV and videos for much of the day may 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 at the same time. Books on tape stimulate only one sense. Computer games can be dangerous, too, if overused. I once reactivated a virus by playing a computer game too much over four days, and ended up with a nasty rash all over my body. The last spot of rash didn't disappear until several years later! Use your own judgment and most importantly: Listen to your body. It will tell you how much "electronic stimulation" you can handle.
Using energy-saving devices
The point of energy-saving devices is of course to save energy, especially on things you do often. I can only give general advice on this point, as different things help different people. Try having a brainstorming session, alone or with someone who knows you well. Go through what you do each day, what kinds of symptoms you get from it and think of different ways of doing these things. Be creative. Remember that some devices and techniques may have drawbacks. An example is a hands-free phone. It will save your arms, but then you can talk much longer, and talking takes up a lot of energy, too. In cases like this you must use your own judgment. Are you so ill that you can't use a regular phone? Will you be able to control yourself and not talk too long?
There is one particular energy-saving device I would like to mention: The wheelchair. It 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 never regret it. The wheelchair saves energy because you don't have to walk. Don't use that saved energy on pushing the chair yourself! Your arms will get just as tired as your legs. You must also remember that the vibrations from the chair may bother you more than you would first think, and that sitting up in itself requires energy. A mall or a school is just as noisy in a wheelchair.
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 under "Listen to your body". Using a wheelchair has to be built up slowly like all other activities.
The topic of coping with school is so big it deserves it's own article. I know that people from several countries may read this article, so I will just mention a few general principles. Generally speaking, there are three types of school attendance when you have ME:
Some places it is even possible to combine home tuition and part-time school. This would be useful when you have had home tuition for a while, and part-time school seems possible. No matter what you choose to try, it's very important to build it up slowly. Begin at a level you are absolutely sure you can manage. Also, your school will be much more pleased if you manage to increase the amount of lessons instead of getting worse and worse.
Some places it is only possible to get a home tutor for a specific number of lessons per week, for instance five. This may be too much for you. If this is the case, discuss the problem with your home tutor and try to arrange it so that for instance two lessons are just social or with only a few minutes of work. It is very important to have a home tutor you can trust. In my experience, only a few young people with ME are able to go to school full- time. Don't attempt this if you have been away for a while. It is better to go part-time to begin with and then build it up.
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I hope this article has given you some means of coping with your ME. I have personally had very good results using these techniques, although progress has been slow. British experiences with similar techniques seem to indicate that improvement will come faster the shorter you have been ill. This does not mean that there is a limit, a time when you just can't improve. It is never too late to begin using 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. Good luck!
Moss, Jill: "Somebody help ME - a self-help guide for young sufferers from Myalgic Encephalomyelitis, and their families", Sunbow House, 5 Medland, Woughton Park, Milton Keynes, MK6 3BH, England, 1995, ISBN 0 9525783 0 1, Price £14,95
Ho-Yen, Dr. Darrel, "Better recovery from viral illnesses", Dodona books, Scotland, 1994, ISBN 0 951109-03-0 (A new edition has just been published in 1999.)
Collinge, William "Recovering from ME: A Guide to Self-Empowerment", 1993
About the author:
Ingebjørg Midsem Dahl was born in Norway in 1979. She fell acutely ill with ME in early March, 1983. Ingebjørg has worked actively with several ME organisations, particularly on the question of young people with ME. She is currently a part-time language student at the University of Oslo, Norway.
This article is also available in Norwegian and Danish. These versions are available from the author, who can be contacted through the Norwegian ME Association:
Norges ME Forening (The Norwegian ME Association)
Ingebjørg has since suffered a serious relapse