Becoming Aware... of Spoons

May is ME/CFS Awareness Month. I'm sure it's an awareness month for a bunch of other conditions and causes, but this one is extremely personal, so I'm gonna take it and run with it. It seems so strange to talk about awareness for something I’m aware of every waking moment (and sometimes even in sleeping moments; this damn disorder has infiltrated my dreams on more than one occasion). 

But I would guess that is always the way for the person living with the thing for which they are trying to make others aware.

"Aware is half way there," it has been said; yet, I also feel there needs to be so much more than just awareness of any given cause, disorder, disease, injustice, etc., to move the needle on change or to make amends for damage done. (Hold that thought; I'll come back to it in time.)

May 12 in particular is International ME/CFS Awareness Day. Actually, that day isn’t solely about ME/CFS. It’s the International Awareness Day for several disorders that fall under the umbrella of nebulous multi-systemic neurological or immunological conditions—ME and its cousins, like fibromyalgia, multiple chemical sensitivity... These disorders are common, yet so poorly understood, that they get lumped together.

I guess we really do need to focus on awareness.

I wrote a post last year explaining a little bit about what ME/CFS is, so if you're entirely new around here, or want a refresher, pause for a moment and check that out, or check out the CDC's definition.

There are many facets to ME/CFS, too much to focus on in one post. Today, I want to shed some light on the 'fatigue' part. ME/CFS is one of many chronic illnesses that are considered "energy-limiting." Yet, the 'fatigue' part of "Chronic Fatigue Syndrome" has been so misunderstood and misinterpreted. It's not just just that we need a nap, or a couple good nights' sleep. ME/CFS involves mitochondrial dysfunction. You may recall from high school that mitochondria are responsible for making all the energy your body needs and uses. Well, my mitochondria no longer make energy efficiently. So that means it's hard to have the energy I need to do the daily tasks of living, working, and socializing; and, it's hard for my body's internal processes (digestion, cognition, circulation, etc.) to function at full capacity.

Sometimes I've compared my daily experience to that of being an old cell phone with a battery that drains too quickly, and doesn’t seem to charge properly. It’s as if I’m forever closing power-heavy apps, dimming the screen, and enabling low-power mode, just so I can text my friends.

I just finished a book that uses currency to describe the energy you have to "spend" each day (no overdraft or loan or credit card options, by the way).

Others have described it like a vehicle--there is only so much fuel (and there seems to be a leak somewhere).

However, one analogy that seems to have struck a chord in the chronic illness community is “Spoon Theory.” It’s not actually a theory, it’s an analogy, but stick with me. The creator of this analogy uses spoons to represent energy. Essentially:

• Everyone wakes up with a quantity of spoons; healthy people wake up with [a lot] more.

• Every task you do, and every experience you engage in, requires a certain number of spoons (FYI, healthy people use less spoons for the same task as someone with a chronic illness).

• If you run out of spoons before the end of your day, you’re in trouble.

• While most people’s spoons magically replenish in full during sleep, that’s not a guarantee for those with ME/CFS (or other energy-limiting chronic illnesses). It’s more than likely we will replenish some spoons, but the number varies from day to day. Yesterday I woke up with 10; today maybe only 6.

Turns out, this analogy resonated in the chronic illness world, and begat a term for people who have to count their spoons carefully--Spoonies. (I'd seen the term Spoonie used on disability-related social media posts, but never really understood what it meant. And then suddenly I was one.)

As you start—or continue—on your awareness journey with me this month, I invite you to take 5-10 minutes to read more about Spoon Theory by clicking the meme below.*

* This guy on TikTok took the analogy even further. (language warning)