Because I’m not merely “tired” when Lyme  gets me in it’s grip, I’m far beyond that. Tired is what happens to well people who overdo. It’s what happens to heroines in Victorian novels who faint on chaises.

Isn’t there a better pronouncement for what happens to people with chronic illness—sometimes even when we do nothing at all?

In my opinion, “chronic fatigue” is so overused it has no meaning. 

Other terms that come to mind are completely inadequate to the task: wiped out, slammed, exhausted, creamed, T-boned, crushed, flat out, pancaked, steamrolled, hit by a Mack truck.

Drained,

trashed,

squashed,

lashed.

Well, all of those together might just begin to get at it…

I’ve been thinking about this because a new friend asked—yes, actually asked!—”If you don’t mind telling me, what do you go through on a bad day?” (One of the KINDEST things anyone has said to me in I don’t know how long.)

First of all, thank you for that, Richard, and for not letting your eyes glaze over like a sleepy frog’s while I tried to explain to you, a Lyme-world newbie, how my illness can make me feel.

Second of all, thank you for asking so respectfully and sincerely instead of running the other way.

There are so many who don’t see my symptoms. My illness is invisible on the surface and they don’t look further. Just a handful of friends—Lucie, Eva, Stevie B., Mickey, Diana, Tracey and more, you know who you are—have truly wanted to know.

They don’t doubt me; this illness definitely clarifies who your true friends are.  Yet I’m certain even these folks have to be puzzled at times, because I often “look fine.“

I think fatigue is one of the most mysterious symptoms for “outsiders.”

Happily, I’m having more and more good days. This morning, though, wipe-out kept me in bed reading for an hour before I mustered the wherewithall to go downstairs and simply eat something.

By then, I wasn’t able to make it back upstairs to look for my second cozy slipper, despite the fact that my thermostat was set on an economical 62 degrees and my bare foot was chilled. Can a well person relate to that?

Then there’s the time I sat on the sofa feeling leaden while my cell phone beckoned from just four feet away on the other side of the coffee table. I absolutely could not get up and get it, even though I desperately wanted to phone a friend for company.

And then there was the night I was lying in bed and my pain spiked to an 8 out of 10—yikes. Yet I couldn’t make my body get up to go fetch my pain meds two rooms away.

Instead, I lingered under my quilt in agony for hours trying to meditate it away with the mantra, This will get better, this will get better. (Note to self: Remember you’re still recovering, so put meds in arm’s reach of the bed in case you need them.)

Some people understand when they see cues like PJs in the daytime, or a cane. Maybe when all-over burning pain renders me beyond exhausted I should borrow my son’s new “Feel the Bern” T-shirt. I’m on a roll: Trumped by fatigue. Climbing the steep hill(ary). Better stop while I’m ahead.

Anyhow, as writing teachers always say, “Show, don’t tell.”

I’ve tried to explain in my own way how the losing energy thing is like “Running on Empty.” Then there’s the fabulous “Spoon Theory” by Christina Miserandino. And now my astute friend and partner in Lyme Christina has brought to my attention “Speed Bumps,” by her friend, blogger AC Hoekwater. Nice one.

Thanks to my docs, I’m pretty sure I’ll soon be living a life in which my tank is mostly full and the speed bumps few.

But as this public health menace spreads, I won’t stop trying to help those not-in-the-know understand what it means to be Lyme “tired.”

Speed bump sign, Tulum, Mexico.
LifeLoveLyme

Got a word or metaphor to add? The “Comments” section awaits you!

A version of this post first appeared on TheMighty.com

Tagged: bedridden, CFS, chronic fatigue, chronic lyme disease, fatigue, friends, herxing, housebound, lyme, tired