Fibromyalgia

A Letter to Myself about the F-Word

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A puffy-faced, make up-less (but smiling!) Emily at WILL Radio this morning.

I had a big day today. I left the house this morning to record a radio interview. It wasn’t easy, but it was worth the extra effort to put on real pants and comb my hair and talk about what it’s like to be me—a Spoonie with fibromyalgia.

I got home, did some stuff for work, attended my first virtual meeting of the day, and then had to embarrassingly drop out of my second work meeting to devote my full attention to being sick.

But I’m feeling slightly better now, so I wanted to see if I had it in me to bang out my post for today’s #HAWMC prompt.

Two things you should know:

  1. I dug up some angry, rage-fueled posts from a blog I deleted, and then I control-veed my way to re-publishing them here and here (under their original published-on dates.)
  2. Because they are so closely related to today’s prompt, you might want to read them too…or first…or something.

Here we go.

Day 4 HAWMC.jpgDear Emily,

The guy who’s about to diagnose you is a real prick. He’s going to drop the fibromyalgia bomb on you after a trigger point exam that leaves you reeling in pain. Then he’ll hand you a brochure printed by a drug company, and walk out of the room for a few minutes to do god-only-knows-what.

Girl, this is your red flag. Drop this doctor like a hot potato and never, ever look back.

If you don’t fire him, he’s going to write you a prescription for Cymbalta without telling you that the withdrawal symptoms will make you wish you were dead—you’ll be sick, dizzy, and riddled with anxiety for weeks after you quit taking it.

Trust me. Cymbalta’s just not going to help you, and you’ll never be sure if what happened to your body in those six months was a result of the drug’s side effects or simply it’s failure to keep your condition under control. Don’t take it. It’s expensive. It will take your nerves completely offline and everything will be numb. You will feel like the shell a brave woman used to live in.

You’ll find better doctors. They’ll be booked out for months, and you’ll wait in the exam room for a long time before they finally knock on the door and walk in. But they will try. And they will listen. And it will be worth the wait. They won’t really know how to help you, but you’ll be confident that they want you to feel better. You won’t be fighting your body and the healthcare system and your doctors.

That’s something to hold on to on the dark days.

Don’t bother to go gluten free for eight weeks. It will seem like it’s helping, and then when you flare again your heart will break from the disappointment. And in the meantime you’ll eat sad, flavorless bread that molds unnaturally fast.

Go through all the tests—the hydrogen breath tests, the blood tests, the heart stress test, the x-rays, the ECG, the endoscopy. They’re all going to come back negative. You’ll be stuck with your crappy fibromyalgia diagnosis, but you’ll know your heart’s fine, you’ll know you don’t have food sensitivities, you’ll know you’re not suffering from RA, celiac disease, or cancer. Those are not bad things to be certain of.

Try the marijuana. It’s going to dehydrate you and turn up the dizzy dial like everything else does, but you will from time to time experience moments that are painless. You’ll sing random shit that makes Dan laugh, and the sound of him laughing will make you want to sing more random shit. You’ll love the world and everyone that’s in it. And sometimes you’ll fall into blissful sleep.

I know, I know. When you see what it takes to get your medical cannabis card, you’ll freak out and stress about the money before it’s even spent. You’ll wonder if it’s worth paying so much money for the privilege of fighting the State of Illinois’ unhelpful bureaucracy. But holy shit! Your friends will donate to a Go Fund Me campaign that pays for your card application and pays for an outreach group to help you cut past the red tape. You’ll be overwhelmed by the support.

When things get rough, you’ll remember that your parents helped you get a house without stairs. You’ll remember how your husband said, “Don’t ever hesitate to ask me for help.” You’ll remember how your friends and family encouraged you every time you were bold enough to share your story.

And you’ll go to bed with the hope that tomorrow will be better, and the assurance that if it’s not there we be people there to prop you up.

Love,
Your Future Self

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3 thoughts on “A Letter to Myself about the F-Word

  1. Emily, I think you did a wonderful job on the radio show. It takes a lot of courage to speak to others about this especially when you know there will be skeptics! It’s not an easy thing to explain no matter who you’re talking to as I’ve come to realize. 🙂

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