Pacing:
A Young Person's View
By
Ingebjorg Midsem Dahl
Editor’s Note: The
author was 18 when this article was first published in 1998. Born in
Norway and now living in Denmark, she fell ill with acute-onset CFIDS in
1983, when she was 4. After many years of non-attendance and part-time
attendance in school, she was able to go to school full time, with hopes
to become a musician.
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 persons with CFIDS (PWCs) 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
principles:
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 and helps you keep your symptoms at a minimum
level.
One Danish PWC 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."
In the beginning, you may be
unsure about how long you can perform an activity. The first step is to
choose an activity you want to assess. I will use listening to music, as
that is something most of us can do. Now pick a time or level of
activity. Will 15 minutes be too much, or could you manage 30? Say we
decide 15 minutes is enough, so after 15 minutes of listening to music,
how do you feel? If you feel fine, try the same amount of time tomorrow
and reassess. If you feel worse, 15 minutes was too much. Try just 10
minutes tomorrow. When you have found out how long you can listen to
music without feeling worse and have managed to do that every day for at
least a week, you can try increasing the time. Try five minutes more one
day. If you feel worse, go back to your previous level, but 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 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 fine again 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 with your eyes closed in a
quiet place. 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 than others.
You might not have the
self-control to stop such an activity before a collapse. You may need to
find new hobbies and interests. 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. If the activities you choose are low-energy
enough, you still will be able to do them on a smaller scale if you
relapse.
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, and you might even be able to get
a "tape friend" instead of a pen pal. 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. And computer games
involve the body, too. By contrast, books on tape stimulate only one
sense.
Using energy-saving
devices
This is a highly individualized area. Try having a brainstorming
session with someone who knows you well and go through what you do each
day, what kind of symptoms you get from it, 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 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 at
first, and sitting up in itself requires energy. 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 it’s own
article, but the general concepts of pacing apply here, too. Generally,
you have three choices when you have CFIDS:
