Tuesday, January 29, 2019

Experiencing an Endometriosis or Fibromyalgia Flare

Allison Jonergin
Guest Blogger

It’s hard to talk about flares. While they’re unfolding, I’m not carving intricate memories, I’m focused on my next breath. Then suddenly they’re over, though full days have passed. It feels insincere to talk about it when it’s not actually happening.

A sufferer of chronic pain, I don’t have pain-free days. Whereas most days press my limits, during flares I occupy the losing side.

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I remember my Dad urging me, “Now’s not the time to be brave,” while waiting to see the doctor in the emergency room. The pain was not nearly as severe as it had been moments prior. It was still the worst pain I’d experienced in my life, but the throbbing wound couldn’t compare to the impact of the bullet. Except it wasn’t a bullet or a visible flesh wound, but internal bleeding caused by lesions of endometrial tissue swelling in unison with my endometrial lining, located in the uterus, growing to receive a fertilized egg. And, when no such egg arrived, it was time to break away and leave my body as my period. Except these endometrial tissues don’t belong outside of the uterus, and they were growing on organs throughout my pelvis and abdomen. Trapped, the tissues bled until fluxes in my hormone levels instructed them to stop. My options were hormone treatments or surgery. I would need several rounds of both.

The doctor didn’t tell me this that night. Like many women, my endometriosis was going undetected. I waited three years after the onset of my first symptoms to be diagnosed.

I’m fortunate to be a success story. Two years after that emergency room visit, I underwent a total hysterectomy, removing also my fallopian tubes and one ovary. While there is no cure for endometriosis, I’m no longer having surgery after surgery to remove endometriosis lesions. I still experience pelvic pain – thanks mostly to scar tissue – especially when my remaining ovary decides to ovulate.

Fibromyalgia, on the other hand, is an ache that runs deep into my muscles; it clenches my bones and joints in vice grips; it sends supercharged shockwaves down my limbs like a rogue sparking electric wire; it lights entire sheets of skin on fire from within; it furnishes my wrists and ankles with cement blocks, exhausting my physical strength.

This sort of suffering doesn’t build character; it breaks it.

In A Farewell to Arms, Ernest Hemingway said, “The world breaks everyone and afterward many are strong at the broken places.”

Broken is exactly how I feel in the midst of a flare. I don’t have the energy to speak, or even to nod or smile. I’m taking shallow breaths because my rib cage feels too heavy to lift. I can’t hold myself upward, the weight of my muscles, organs and fatty tissue slung over my skeleton like a wet towel. None of my movements feel natural, my shirt rubbing like sandpaper against my skin. I’m dragging myself, with not a single muscle cooperating in carrying the load.

I’m tapped out. This must be what dying feels like, I think. But around me, smiling faces are speaking and asking me questions. They don’t see the light leaving my eyes.

Every word my ears involuntarily hear siphons the last drops of energy from my tank.

Hemingway went on to write, “But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially.”

So in my darkest moments, I remember that I have braved long nights before, and I’ve lived to see the sun rise. To break means I am still alive.

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