Fatigue Management Theory

Dec 5, 2024

Hi everyone. HOD patient, HODA Lead Ambassador, blogger when I feel like it (www.myinvisiblebff.com), and blog guest-poster, Erin here! Today, I want to share some tips on managing fatigue.

Today I wanted to share a few ways to describe your fatigue. According to the HODA Patient Registry, 68.6% of participants experience fatigue. That’s a significant number. Fatigue is a symptom not exclusive to brain injury, it also affects many chronic illnesses and disabilities! You are definitely NOT ALONE!

My parents are my full-time caregivers, and my roommates, and we talk a lot. It’s been eight years since my CCM brain bleed/hemorrhagic stroke and resulting HOD, and we are always learning! But about seven years ago, we learned about the Spoon Theory and it became our “go-to” when describing my fatigue/energy levels to family, friends, neighbors, and healthcare professionals!

Let’s talk spoons!

The Spoon Theory was first written by Christine Miserandino in a blog post where she explained what it was like to live with Lupus. She and a friend were eating at a restaurant and Christine grabbed 12 spoons and spread them on the table. She said that people like her started each day with twelve spoons. Every activity of the day takes away 1-4, or more spoons, depending on how tiring the activity is for the person. This continues from morning activities, to nightly bedtime routines. After you go to sleep, you will not necessarily have twelve spoons again; maybe you have more from a very restful sleep, maybe you had a rough night and have less spoons, or maybe you have less spoons due to your disability (HOD)!

Here are some visual examples (I made one a few years ago for my blog readers at myinvisibleBFF.com):

Graphic explaining the Spoon Theory on Fatigue. The background is cornflower blue with cartoon images of spoons, a house with trees, a sheep, and a set of urban dwellings with trees, a street out front, and a moon.

A graphic on spoon theory from Spoonie Day. There are 4 columns: 1 spoon, 2 spoons, 3 spoons and 4 spoons. Each column assigns a value for different activities to explain how energy is spent throughout the day.

A graphic explaining spoon theory.. There are 4 rows: 1 spoon, 2 spoons, 3 spoons and 4 spoons. Each row assigns a value for different activities to explain how energy is spent throughout the day.

How do you use Spoon Theory to explain fatigue?

Some ways we (my loved ones and I) talk about the Spoon Theory:

I’m getting low on spoons, I need to go rest now.
I’m having a low spoons day, I can barely get out of bed! Hoping tomorrow is better.
All my spoons are in the dishwasher, I’m done.
I need to save some spoonsand not X right now.
I need to go rest and see if I can save up some spoons to X later.
I don’t have any more spoons to give! Initiate escape plan!

It’s common jargon to call yourself a “Spoonie” if you identify with the Spoon Theory, and also are disabled and/or have a chronic illness, which includes rare neurological diseases!

So for my first round of OT (occupational therapy) I did a lot of work around pacing and cognitive fatigue, because my Ataxic limbs were much better then, and we didn’t do as many exercises related to that.

Gassing up your fatigue

My therapist taught me about the gas tank analogy. This one is pretty easy to imagine: you have your gas tank with hash marks indicating full, ¾ full, ½ full, ¼ full, to empty. How you might describe it is as follows:

I woke up with a full tank today!
I slept poorly, plus the weather isn’t great and I feel like my symptoms are flaring and I only have a quarter of a tank. Back to bed to rest!
I have half a tank right now, and it’s the afternoon. Maybe I will do that extra thing considering the amount of gas I have left!

A stick figure in front of a vehicle gas gauge, attempting to pull the indicator level to the right.

So that’s the gas tank analogy! It’s pretty straightforward and might be easier to relate to because most people (at least in the USA) have cars and drive them. If you don’t, like many people with HOD, you can probably still remember how the gas tank works from when you did drive.

Finally, Battery Theory to explain fatigue

The final analogy I’m going to write about is the battery theory. This one is like the battery life on your phone…green is good and it means “charged”, while red indicates that you are very close to having a “dead battery”. Like the other two energy symbols, this is based on how much energy you have left to spend, after doing various activities—and because of disability and/or chronic illness, nothing at all! People using this theory might say things like:

Ugh, I have about half a charge today, I can’t spare much time.
Seriously don’t talk to me right now, my battery’s almost dead, I need to lie down now!
I woke up with a full charge today; the world is my oyster!

People who use the battery analogy are called “Chargies”. Here is a visual to help illustrate my point:

A graphic that explains the battery theory. The upper half demonstrates 4 cartoon batteries, and how energy is expended in 'normal' people. The bottom half demonstrates 4 cartoon batteries, and how energy is expended in brain injured people.

A pink and white fuzzy cartoon bunny wearing dark wayfarer sunglasses. the bunny has a base drum strapped to his chest, and an energizer battery in his hip. This is the classic energizer bunny advertisement.

Whatever floats your metaphorical boat, try to educate the ones you love about your energy symbol. Based on my personal experience, in the long run, it will save time explanation, and (you guessed it) —energy— .

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