2) Make Mental
Adjustments
Many of the coping
techniques that help limit relapses require new habits and behaviors,
but their foundation seems to lie in having new expectations for oneself
based on acceptance of the limits imposed by illness. Here’s what
several students have said about mental adjustments they have made.
It has been
important for me to accept my new life with CFS, move on, and realize I
will not return to my former self. I've needed to redefine expectations
of myself based on the new me. Lowering my standards and trying to break
free from perfectionism has been a large part of this.
I’ve decided
it's all right to take care of myself for a change, just like I would
take care of someone else.
I have accepted
that I will probably never fully recover and in acknowledging that I am
discovering better ways to co-habitat with the illnesses.
3) Pace
Yourself
Pacing is a favorite
strategy for bringing stability to life and preventing setbacks. The
term covers a variety of strategies. At minimum, pacing means adjusting
activity to the limits imposed by illness and by circumstances as shown
in the following quote: “I've cut back my activity level substantially
overall, and when I feel tired I cut it back even more.”
Pacing may also
involve having short activity periods. Particularly with tasks that
involve repetitive motions such as food preparation, you may avoid
symptoms by breaking a task down into five or ten minute segments with a
rest in between. The same principle applies to mental work as well, as
suggested by one student: “I do stressful things like taxes in small
bites. Just letting them pile up just adds more stress.”
You may be able to
avoid an increase in symptoms by shifting among different activities and
by including healthy activities in your day. “What helps me is to have
a balance of physical and mental activities, interspersed with frequent
rests. I have recently introduced a checklist system to remind me about
activities that are good for me such as walking, exercises, relaxing and
hobbies.”
Lastly, you may add
stability to your life by living according to a realistic schedule. This
involves both scheduling an appropriate number of activities and
allowing plenty of time between activities, not pushing to squeeze in
too much. One student explained that she implemented scheduling by
setting priorities for herself: “It definitely helps me to make a list
of weekly and daily activities so that I can prioritize them. I know how
much physical activity I can handle in a day, so I remember this and
make my list accordingly. I always allow at least an hour's rest in the
afternoon so this is a given on my daily list.”
Some patients have
found great benefit from having a daily routine. Living your life in a
planned and predictable way can help reduce relapses for two reasons.
First, routine is less stressful than novelty. And, second, having a
predictable life increases the likelihood that you will live 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. If you can lead a consistent life,
you are much more likely to gain some control over your relapses and to
have fewer surprises demanding your energy.
Some people have had
success using very detailed and individualized rules they created for
themselves. One student in our program developed three rules for
herself: no driving beyond 12 miles from home, no more than three trips
outside the house per week, and no talking on the phone for periods
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 to-do list. Some people with
severe brain fog have found it useful to tape a set of instructions for
themselves in some prominent place like the refrigerator.
Another similar
strategy is to have a series of rules for specific circumstances. For
example, some people set a limit on how long they will spend with
relatives at the holidays. People whose CFIDS or fibromyalgia symptoms
are intensified by secondary illness sometimes program extra rest for
several days to a week after symptoms from the secondary illness ends.
If you develop specific guidelines 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?
4) Rest
Scheduled rests done
on a regular basis can prevent relapses. Also, taking extra rest before,
during and after special events like vacations and the holidays or after
a secondary illness can help you avoid setbacks or limit their severity.
Here’s what two people in our program say about the value of rest.
I think my two
daily fifteen-minute rests were the most important thing I did to aid my
recovery.
I can never get
enough rest! The more I'm able to incorporate quality rest, even little
bits and pieces, into my day, the better off I am.
If you know a time
of unusual exertion is coming, something like a trip or a special family
gathering, you may be able to reduce its negative effects by taking more
rest than usual for several days ahead of time, then having extra rest
during the event and after as well. A woman in one of our groups adopted
this approach to attend a family wedding. For two days before the
wedding, she had extra long naps and limited her activity. She arrived
early at the wedding, having arranged ahead of time for a place she
could nap after the ceremony. In the week after the wedding, she also
took longer naps than usual and limited her activity. Although she experienced some intensification of symptoms in
the wake of the wedding, she did not “crash.” She called the
experience a double success, since she both enjoyed the wedding and
limited the price she paid.
5) Keep
Records
Having a health log
can reduce relapses in two ways. First, records help you define your energy
envelope, giving you a detailed understanding of your limits.
Logging can enable you to answer questions like: how many hours a day
can I be active without intensifying my symptoms? how much sleep do I
need? how consistently do I stay within my limits? what are the effects
of stressful events? what are my relapse triggers?
Second, records can
serve as a source of motivation. Seeing evidence of a connection between
overactivity and increased symptoms can help you hold yourself
accountable for your actions. Also, graphing your records can offer a
powerful visual reinforcement of your successes and thus a motivation
toward improvement. CFIDS patient JoWynn Johns wrote: “I graph[ed] my
monthly percentages of good days and nights....I needed to make this
information visible to prove to myself the effects of mental and
emotional exertion, as well as physical activity.
I 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.” (Quoted from “
Living Within My Envelope: A How-To Story ”.)
Summary
Relapses are an
inevitable part of chronic illness, but their causes can be understood,
and their frequency and severity reduced through the use of self-help
strategies.
(Article adapted
from The Patient's Guide to Chronic
Fatigue Syndrome and Fibromyalgia, the text for the CFIDS/Fibromyalgia Self-Help
course.)
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