Chronic Fatigue Lesson 1: You Just Don't Get It!

[Guest guest]

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 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 ’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 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 ’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