Staging Your Fibro
Order May Vary
How cool is it that Fibromyalgia Awareness Day falls on a Friday this year? (May 12th—next week!) And I have big plans to mark the occasion. But, as always, I am also here for Fibromyalgia Awareness Month.
I see you, my fellow Fibro Warriors! 𐀔
“I just didn’t sleep well.”
“There’s a weather front moving through.”
“Have you seen how many hours I’ve been working lately?”
“I slept funny last night.”
“I am getting older.” (Stated in the most grudging tone, complete with a glower and clenched fists)
The excuses tripped from my lips with ease to explain away the sudden phantom pains appearing throughout my body. Accompanied by light, dismissive laughter and a delicate wave of my fingers—shooing away the concerns of whoever felt the need to point out a potential medical reason for the breakdown of what should have been a fully-functioning body. I kept a store of reasons squirreled away in my brain.
And I fed them to myself as easily as I did the family and friends eager to notice the winces, limps, and stumbles.
I was 22. Maybe I’d fallen over the imaginary line of pinnacle greatness where you were utterly invincible and capable of anything you dreamed, but there was nothing wrong with me. I still had at least eight good years before the wheels came off (according to societal wisdom). I was fine.
I was FINE.
Insert suitable excuse here and move on. Tomorrow would always be another day. With luck, one where the bone-deep bruising wouldn’t rear its ugly head.
“I need to stop picking up these extra shifts all the time. Can’t someone else work for once?”
“Did they make this mattress out of steel and granite? It’s the worst place I’ve ever slept!”
“Can’t we have one weekend where we don’t do anything? Why does everyone always insist on going everywhere?”
“You’re walking too fast!”
“The problem is I never get any time to myself anymore.”
There was no connection between the increased frequency of my misfiring nerves and the fraying of my temper. (Correction: The connection involved my disintegrating brain capacity. It was simply easier to overlook and claim I saw no correlation) The piling expectations of adulthood were to blame for my lack of energy, the constant low-level irritation beneath my skin. Without the blissful ignorance of responsibility of my college years, I was trapped in a cycle of obligation. And the screaming demands of my calendar had translated into stinging electrical pulses down my arms and legs.
The world had wrought the torture upon me.
Thriftily saved from my teen years, I rebelled against the strictures. I told myself I was overdue for a dramatic fit aimed toward authority figures. They had created the weighty mess of bills, appointments, assignments, and dates that left me running from sunup to sundown every day. My throbbing leg muscles belonged to the adultier adults in my life, looking down on me from supervisory positions. And prickly with sudden rashes of heat (or cold, depending on what was more inconvenient), I turned on them.
My muscles clenched and rolled through behavior assessments and mandatory discussions on my attitude. The world, it seemed, disagreed with my assessment of where the blame lay for my pains.
And my body—fickle bitch that it was—took their side.
Let me sleep for three hours, and I promise to nap in the afternoon.
Just one walk through the park.
Please—let me remember the word I need. I won’t sit up reading all night.
If you get me through this date tonight, I won’t do anything the rest of the weekend.
I can’t put a sweater on yet, but if you stop shivering, I’ll buy that fleece blanket on the way home.
Pain, fatigue, fog—this horrific beast clung to me like a sticky ooze. The harder I tried to peel it away, the more it entangled around, through, within me. A parasitic monster, minus the jocular sense of humor and craving for brains and chocolate. (Okay, only the craving for brains) Every breath settled it deeper into my bones, my muscles, my nerves. My body proved a comfortable host. Unfit for human companionship, courtesy of my abrasive personality, I was desperately wanted by an invisible creature.
In rare moments, I felt flattered.
I sought every shiny bauble I could find to distract it from gnawing at my joints. A parent desperately trying to lead their child away from coloring on the walls with permanent marker. (Fine, use the crayon; at least it’s washable) Learning where to give in and when to stand my ground. Laughably thinking I was the one in charge.
How to explain to friends and family my new invisible companion? The presence I’d spent so many years denying so vehemently? Better to continue the charade, placating my exhaustion with half-sworn promises of stolen naps and drifting thoughts. I assured myself I could pay the debt.
Never looking at the ledger helped.
“I don’t understand why I’m so tired.”
“It’s only a mile; I could hike twice as far before.”
“I’m smart, I promise. I’ve been an honor student my entire life.”
“I love you, I do, but you can’t touch me.”
“Why can’t they find the source of the pain?”
How did something I could not see, could not smell, could not taste, could not hear, weigh so heavily on my entire body? I felt it in the strands of my hair—an impossible pain that made me laugh as tears gathered in my eyes. It plucked muscles in my legs, my back, my neck, my fingers, and my jaw I swore I’d never moved throughout my existence. Determined to thwart its game, I lay perfectly still on absurdly comfortable mattresses and blankets, only to feel a dagger stab through the region of my left kidney. My stomach. My lower right colon. Deprived of movement, it burrowed into my organs and circulatory system to find a way to make its presence known.
Doctors shook their heads over an increasing stack of lab and imaging reports. The quiet sympathy of their profession left their eyes. (And the constant bombardment of radiation failed to awaken any latent superpowers) I arrived on their doorstep too often, crossing the threshold from patient in pain to suspicious female searching for sympathy, attention, drugs, or some potent combination thereof. They dismissed me with damning diagnoses of depression, anxiety, and hysteria.
Had I considered speaking with a professional white man about why I was a screwed-up female?
Unable to stand upright, or recall the proper spelling of my name, or walk from one end of my apartment to the other, I questioned the sanity and validity of my claims. Medical science declared me fit and healthy. Who was I to say otherwise? I had insisted the very same for so many years.
Who was I to say any differently now?
Staring at my reflection in the mirror, I conceded I had earned precisely what I deserved. My just rewards for a decade of juvenile nonsense.
“I need to take a break.”
“Today is a low-spoon day.”
“The word is right there, but I can’t think of it.”
“Can you please help me get dressed?”
“I have fibromyalgia.”
I play host to a cryptid of the medical community. No physical evidence, no proof of existence (not even a blurry photograph or scratchy recording), yet accepted as real by most of the scientific population. Denied by a few outliers who should know better. Scorned by those who want to see it living and breathing in front of them on a microscope slide before they buy into the hype.
Honestly, I’m not always convinced I’m not an eyewitness functioning on five minutes of sleep and drunk on moonshine.
The words continue to stick in my mouth, caught on two decades of struggling to accept the presence of a foreign invader within my body and brain. Acknowledging the diagnosis brings no peace, no resolution to the battle. There is no signed treaty that allows the two of us to part as reasonable acquaintances. Assigning a label to the constant torment did nothing more than give me a name to curse. There was no relief from the pain or exhaustion, no lessening of the fragmenting of my brain.
I am still broken.
But I (resignedly) admit that there is something wrong with me. An invisible thing that inserted itself into my genetic code. Not a punishment handed down from someone else. And not something I created myself.
Doesn’t mean I have to like it very much.