To the Friend Who Asked What I Go Through on a Bad Day With Chronic Fatigue

I’m not merely “fatigued” when Lyme disease gets me in its grip. I’m far beyond that. “Tired” is what happens to well people who overdo. It’s what happens to women in Victorian novels who faint on couches.

Is there a better pronouncement for what happens to people with chronic illness, sometimes even when they 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.

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?”

This is 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. Just a handful of friends 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 to “outsiders.”

Happily, I’m having more and more good days. This morning, though, fatigue 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.

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.

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

Instead, I felt trapped under my quilt. In agony for hours, I tried to meditate the pain 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’re too “fatigued” to get up.)

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 has brought to my attention “Speed Bumps,” by her friend, blogger AC Hoekwater. Nice one.

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

But I won’t stop trying to help those not-in-the-know understand what it means to feel “fatigued.”

Follow this journey on LifeLoveLyme.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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