A common phrase I often hear from my wife is “you just don’t get it”. This
normally occurs after I’ve asked something of her without the regard that she
has Chronic Fatigue Syndrome.
In essence, she’s saying, “Sam, I don’t have the energy that a
‘normal’ person has. I haven’t had it for twenty years, so why do you
keep acting like I do? I take naps every day, I stay home from social
functions, sometimes I’m too tired to utter a word, I can’t think
clearly, so what part of this don’t you understand after twenty years?”

This may be a common response for those suffering from Chronic Fatigue Syndrome,
Fibromyalgia or similar chronic illness.
In defense of the caregiver, spouse, friend, let me say this:
Of course, as her husband, I realize Cindy has Chronic Fatigue Syndrome and that
it won’t disappear in a few days or weeks. Of course I realize
she takes naps on a daily basis and struggles with energy to complete
simple tasks.

However, with all of that knowledge and first-hand experience, at
times, I let my human nature take over and expect her to be ‘normal’,
from an energy perspective. I see those days when she plays with the
kids on the trampoline, talks to a neighbor or cleans the house, making
it easy for me to assume she has plenty of energy.
Wouldn’t it be great if a device were invented that measured energy
level? There are devices that measure heart rate, blood pressure or
insulin level for those suffering with illnesses such as heart disease,
high blood pressure or diabetes. Yet, there’s no such device to measure
one’s energy level for those suffering from Chronic Fatigue or Fibromyalgia.
So what’s the answer? How do I, as a caregiver, know how to gauge Cindy’s energy
level on a given day or in a given moment? Observe. Communicate.

Observe: Realize that a ‘good’ day is usually followed by a few
‘bad’ days. I know from experience that Cindy will have low energy on
the days following a high-energy day. If she cleans the house, works in
the yard, plays with the kids all in the same day, it’s very likely
that she’ll need a day or two to recover.

Communicate: We all have a tendency to make assumptions rather than
ask a simple question such as, “how do you feel today?” Or, “are you up
to grocery shopping today?” Don’t assume anything. Just ask.
With chronic illness, each day is unique and brings its own set of challenges.
As Cindy’s husband and caregiver,
I love those days she feels well and can express her vibrant
personality. I also temper that somewhat, knowing the energy will only
last a day or two.

Treasure the good days and hang tough in the rest. And as a caregiver, realize
that you will never fully “get it”.

Sam Fowler
http://www.chroniclessons.com





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