Reframing Ehlers-Danlos Syndrome The Chronic Illness : When My Body Wrote Me a Love Letter

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aid4578457-728px-Take-Action-to-Help-Stop-Human-Rights-Violations-Step-6Pain. Insidious. Fatigue. Intolerable. Thirst. Unquenchable. So dizzy, I walk like I’m on a ship listing to the right.

This is my body writing me a love letter, although that is not what I told myself or anyone else for a very long time.

My body is betraying me, I said.

Out loud.

Numerous times before, I realized that declaring a civil war on myself was not the best idea.

But that’s what it felt like: my body wasn’t working, cooperating, getting better.

It felt like all of my doctoring and researching and medicating and supplementing had turned out to be an expensive, exhausting, cruel game — one I didn’t know how to win.

I collected a bevy of specialists, and they were mine, mine, all mine. My cardiologist, my neurologist, my electrophysiologist. As if I owned them.

Lots of testing. Innumerable vials of blood.

I grew to love the cozy enclave of the MRI’s, with their whirling magnetic jackhammers serenading me.

My pain doctor scans the results. “You’ve got a lot going on. Your hip hurts because you have a labral tear. Did you have an accident?”

“Well, sort of…”

“What kind?”

“Fat ex-husband,” I say with a wry smile.

A week later, my neurologist regrets to inform me that I have failed the tilt-table test. It seems I have a severe case of orthostatic intolerance, or a body “allergic to standing.” She doesn’t like it. She wants to sit or lie down, even in the middle of the grocery store. She becomes muddled, incoherent, slurs her words.

They call EMS while I am sprawled out in the cereal aisle, boxes of Lucky Charms mocking me from the shelves above. The paramedics arrive; they shine lights in my eyes and ask me who the president is. I beg for saline as they load me into the ambulance. I notice the EMT giving me oxygen looks familiar.

“You look like Channing Tatum,” I breathe into the oxygen mask. He looks delicious. “Are you married?”

“Are you drunk?” he asks sternly.

“No! It’s 3 o’clock in the afternoon.” Damn EMT’s. Stop looking so good when my social inhibitions are gone.

I collect diagnoses that I have to explain, even to doctors. I say Ehlers-Danlos Syndrome (EDS) and they look at me quizzically.

Even though my body is staging a revolution, I look fine on the outside. This confuses everyone.

The ER becomes my best friend and my worst nightmare. I make frequent trips there in the middle of the night. They give me the ultimate trifecta: morphine, saline and potassium, singing the chorus of “Follow Up with Your Primary Care Doc Tomorrow,” as they make me sign discharge papers and shove me out the door before sunrise.

My scripts for opiates prove useless. They do almost nothing until they start to wear off, and then the pain ratchets up. I pass the “pain pop quiz,” scoring a spectacular 12 on a 10 point scale.

During the sleep study they torture me by putting electrodes, cords and wires over every inch of my body, keeping the hallways lights on super bright, and then telling me repeatedly to go to sleep.

I graduate summa cum laude with honors. Three sleep disorders and exactly zero minutes of REM sleep. Bravo!

My nightstand is filled with plastic bottles of pills. Some make me tired, some keep me awake. Some boost my blood pressure so I can stand up without passing out, but also make me itch like a kid with chicken pox, so I take another pill to stop the itching.

There is no “Plan B” for my body. Only Plan A.

Plan A: come on already!

I don’t have time to be sick. I’ve got bills to pay. Places to go and people to see, but I am too ill to go and see anything.

My hematologist gives me IV infusions of iron.

My neurologist gives me Adderall and sleeping pills. She suggests drugging myself to be less tired in the morning and more tired at night might be counterproductive. I nod.

My therapist tells me that I have to make peace with being ill. In my head, I give him the finger for a very long time.

My insomnia transforms into torturous hours filled with “pain-somnia,” and I discover that taping my pain pills to the center of my headboard is better than the 20 minutes of agony it used to take just to reach over to the nightstand.

This is my body betraying me.

No, this is my body writing me a love letter.

It’s telling me to slow down.

It’s telling me not to take it, or anything else, for granted.

It’s telling me that stress and unnecessary anxiety are best avoided.

It tells me I’m resilient, but not indestructible.

It tells me to rest when I am tired, to stop pushing through life as if it’s an endless ultra-marathon.

It tells me to stop obsessing about the future and all the great things that are going to happen “there.”

It tells me to be here now.

To be fully present.

To be right where I am, and to stop wishing I were somewhere else.

It tells me that this moment is crystalline in its simplicity.

Stunning in its absolute compression.

The gumball machine of my life is now spitting out moments instead of decades (or, at least, the illusion of decades).

This is my body writing me a love letter.

Your body is writing you a love letter, too.

 

Source: themighty.com

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