I had a fibro flare (or something) the week before Thanksgiving. Then on the Tuesday before Thanksgiving, I fell. I smacked the back of my head on the hardwood floor in the bedroom and landed rather spectacularly on my left elbow.
Then on the Friday after Thanksgiving I had a mild fever and was achy all over. Today, I have a sore throat, plugged ears, a runny and sneezy nose, and continued aches in addition to my usual chronic pain.
I’m grumpy, but Boomer seems to feel sorry for me and has taken to snuggling me more than usual.
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While my parents were here for the holiday, my mom helped by shopping for and assembling our pre-lit Christmas tree. We also have fake candles in our front windows, and snowmen on top of our upright piano. It’s a cozy time to feel sick, at least. There’s more decorating that could be done, but will only happen if I’m feeling up to it. Fingers crossed.
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.
A puffy-faced, make up-less (but smiling!) Emily at WILL Radio this morning.
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:
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.)
Because they are so closely related to today’s prompt, you might want to read them too…or first…or something.
Here we go.
Dear 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.
The first rule of blogging is there are no rules of blogging. At least not here. So I do what I want.
Even when I was younger and perfectly healthy, I had trouble sticking with my personal blogging commitments. A decade ago my grand idea of posting every day morphed into a reluctant acceptance that life is just too complicated.
Maybe just three times a week, I thought to myself.
And here I am ten years, five blogs, four jobs, and one chronic illness later finally accepting that all I can do is write when I’m feeling up to it. Hell, I might not even be able to complete this 30-day challenge.
I’m nowhere near as prolific as I used to be. In my twenties, I’d go from writing a term paper for my Organizing for Social Action class to drafting website content about funeral customs to writing a magazine article for nine-year-old kids to blogging about the funny, if inconsequential, things that happened to me.
Today I write for my 9 to 5, and then write a few blog posts a week—depending on how badly I need to access my “outlet” and how much energy I have left. I haven’t done any freelance work for well over a year, though God knows the extra income would be nice. And even at this modest pace I often feel like I’m stretching myself too thin, egging on my next flare.
The perfectionist inside me (the oblivious twenty-something that would read a post thirty or more times before hitting publish and want to just fucking die upon realizing a week after posting that she’d still missed a typo) hasn’t completely died. She spits and sputters to life occasionally.
I’m learning to embrace errors the same way I learned to embrace my shower chair and walking cane—slowly and stubbornly with lots of internal melodrama, until forced to admit there isn’t another way forward right now.
I guess overall my goal is to approach this blog as an act of self-care. That means no rules, no scheduled posts, no trying to drum up more traffic, and no feeling like a failure for posting a dud or going long stretches without writing.
I do what I want.
This post is part of the Health Activist Writers Month Challenge (#HAWMC).
Prompt 2: What’s the blogging process look like for you?
Last month marked the second anniversary of my fibromyalgia diagnosis. And even though the ICD code has been following me around for a while, I’m still having a hard time pinning down what that means for me, exactly. What does patient advocacy look like for me?
I haven’t yet developed an elevator pitch for talking about my fibromyalgia because it’s just too damn complicated to sum up. The next best thing, it seems, is to just blog about whatever I need to put “out there” whenever I’m able and inspired.
Writing about my condition and my day-to-day happenings helps me sort out my own thoughts and feelings while giving me an opportunity to honestly answer a question I get asked all the time.
How are you doing?
Though the words that come out of my mouth might say otherwise, the reality is that I am never OK. There’s always a caveat. This is where I get to talk about the caveats.
Blogging has other advantages too. It lets me vent about what’s wrong while giving my husband a break from the sometimes hourly updates about what hurts and what is and isn’t working right. (Why is no one ever as excited as we are to have a good poop?)
It serves as a sort of patient log, helping me identify patterns and theorize about the cause of my flares. And sometimes it helps me accept that there is no pattern or discernible cause, that my condition just is.
My blog connects me to a large support group of other Spoonies and fibromyalgia patients, giving us opportunities to discuss what helps. Because, let’s face it, chronic patients are perpetual targets for anyone with a pill, a book, or a scented candle to sell. We have to look out for each other.
And it’s that “looking out for each other” thing that really motivates me to write candidly about my experiences. (Yes, even about medical marijuana and IBS.) Don’t get me wrong, this blog is for me, first and foremost. But I also want it to help other patients find ways to talk with their friends, family, doctors, and coworkers about stuff that’s next to impossible to put into words.
I want these conversations to meaningfully change our healthcare system, change the way we view and accommodate disabilities, and improve the lives of every patient with chronic illness.
Because laughter is cool and all, but empowerment is the best medicine.
This post is part of the Health Activist Writers Month Challenge (#HAWMC).
Prompt 1: What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism?
