Ten Keys to Successful Coping
Key 4: Find Your Limits
By Bruce
Campbell
Living with CFIDS or
fibromyalgia can feel like a ride on a roller coaster, as you swing
between times of intense symptoms and periods of relief. When symptoms are low,
you may push to get as much done as you can. But doing too much often
leads to a crash. If you try to make up for lost time once you feel
better, the cycle starts again, leaving you with the feeling that your
life is out of control.
This article describes an alternative to this
frustrating cycle of push and crash, a way to bring stability and some
control to life. By finding and honoring the limits
imposed by your illness, you are likely to gain some control over it.
The Energy Envelope
One way to imagine your
limits is using the idea of the energy envelope. Your envelope is the
energy you have available to accomplish things. Depending on the
severity of your illness, your envelope might be half or perhaps only a
tenth of what it used to be. If the energy you expend in physical,
mental and emotional exertion is greater than your available energy, you
will intensify your symptoms. This is called living outside the
energy envelope. An alternative is living inside the energy
envelope. If you keep your expended energy within the limits of your
available energy, you have a chance to reduce symptoms, and over time
may be able to expand your limits. This is an upward spiral.
The Fifty Percent
Solution & the Bowl of Marbles
A second way to think
about limits is called the Fifty Percent Solution, described by William
Collinge in his book Recovering from Chronic Fatigue Syndrome.
Each day estimate how much you think you can accomplish. Then divide
this in two and aim to do this lesser amount. Rather than challenging
your limits, you limit yourself to a safe level of activity. The
unexpended energy is a gift of healing that you give your body.
A third idea is to
imagine your available energy as a bowl of marbles. You have a limited
number of marbles to use each day. The number may vary from day to day.
Physical activity uses some, but mental and emotional activity do as
well. With every activity, you take one or more marbles out of the bowl,
remembering that stress is a big marble-user and so lessening stress
will preserve your supply of marbles for other uses.
The overall idea in all
three concepts is that our limits force us to set priorities in order to
control symptoms and gain stability. All three concepts allow you to see
your situation in a way that gives you permission to do less in order to
improve quality of life.
Defining Your Energy
Envelope
To get a general idea of
your envelope, rate yourself using the CFIDS/Fibromyalgia
Rating Scale. This will give you a quick estimate of how many hours
a day of activity you can sustain safely. (By way of comparison, most
students in our course have rated themselves between 20 and 45, but we
have had people across the full range of the scale.)
If you want a more
detailed understanding, ask yourself about three different types of
activity: physical, mental and social. You will have unique limits for
each and may be less restricted in some areas than in others.
Physical activity means
any activity involving physical exertion, including housework, shopping,
standing, driving and exercise. You may find it helpful to determine
your limits in each of these specific areas. For example, you might
experiment to determine how much exercise you can do or how long you can
do housecleaning without making your symptoms worse. It is also helpful to understand how
the effects of exertion can be cumulative over a period of days or a
week, and whether some parts of the day are better for you than others.
Mental activity means
activities requiring concentration, like reading, working on the
computer or balancing a checkbook. Two questions to ask in this area
are: How many hours per day can I spend on mental activity? How long can
I spend in a single session? (You may be able to avoid triggering brain
fog or other symptoms if you break up your mental work into two or more
sessions a day. This principle also applies to physical tasks like
cooking or housecleaning.)
Social activity refers to
the amount of time you spend interacting with other people, both in
person and by phone. Questions to ask yourself about each type include:
How much time with people is safe for me? Is the time dependent on the
specific people involved and the situation? Does the setting make a
difference (restaurant vs. at home)?
Another key area is rest,
which means both sleep and daytime rest. For the former, ask yourself:
How much sleep do I need? What is the best time to go to bed and to get
up? For daytime rest, ask how much you need in total and how many rest
periods.
Everyone’s Situation is
Unique
Each person’s limits
are unique, because each person’s situation is different. To get a
comprehensive understanding our your limits, consider not only the
limits discussed above but also your life situation. Illness will have a
different impact depending on such things as your stage in life and your
family situation. In this context, finances and support are particularly
crucial.
Some patients find their
financial situation to be similar to what it was before they became ill.
They may be supported by a spouse or receive disability payments that
replace their previous income. For others, however, financial pressures
can be great, even overwhelming.
Support levels can vary
greatly, also. The term "support" applies to both practical
and emotional help. Practical support may mean assistance with tasks
such as grocery shopping and cleaning. Emotional support means feeling
that someone understands and cares. Some patients have supportive
spouses or other family members, while others may find themselves in
stressful circumstances that are not conducive to getting better. Some
people have good friendship networks, others not. So when you are trying
to understand your situation, look at the stresses in your life and the
quality of your relationships.
Getting Started
If you want to define
your energy envelope in detail, you might begin by rating yourself in
the 12 areas I describe in another article
or use the concepts offered in articles by Dean
Anderson and JoWynn Johns. In
any case, the goal is to assemble a detailed understanding of your
limits, so you know what you individually have to do to minimize
symptoms and increase your chances for improvement. Such a description
can also highlight your areas of vulnerability and thus help you set
priorities. Whatever your circumstances, taking a systematic approach
can help you understand your unique situation.
Learning Through
Experiments
One way to understand
your envelope is by trying experiments and keeping records. Let me
illustrate by describing what I learned from my experience in the area
of exercise. By walking at different times of day, I discovered that
exercise in the afternoon was much less likely to lead to higher
symptoms than exercise in the morning. The observation helped me to
realize that when I did something could be as important as how
much. Also, I observed that sometimes when I felt no symptoms during
my walk I felt them later, sometimes so strongly that I had to take a
nap later in the day. That experience helped me to realize that the
effects of activity might be delayed, so that to understand my limits I
had to be attentive to how I felt later as well as during and right
after an activity. In all these ways, I learned from my experience.
In Summary
Your Energy Envelope is your
unique set of physical, mental and emotional limits. Understanding your limits
is one step in learning how to control your symptoms and get off the illness roller coaster.
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