A Fibromyalgia Story
Etymology / Etiology
What is the link between naming and causation?
The term fibromyalgia is taken from Latin and Greek words:
Fibra (Latin) means fibrous.Myos (Greek) means muscles.Algos (Greek) means pain.
Merriam Webster says I have "a chronic disorder characterized by widespread pain, tenderness, and stiffness of muscles and associated connective tissue structures that is typically accompanied by fatigue, headache, and sleep disturbances."
How does one begin to explain this? The phrase "needle step days" planted itself in my brain some time ago, in a poem, “i push my skin through needle step days,” but today there’s another layer of complication. A tingling sensation wholly unpleasant and known by anyone who has had their nerves electrically stimulated.
That feeling has come and gone for at least a year, but usually briefly, and when I am standing. Today it’s nearly constant when I am existing. Sometimes it settles only to rear again when I have to raise myself off the couch/bed for whatever task lies ahead. I have yet to give in, I could be in bed in the dark, inviting that shadow to be the loudest voice in the room, but something in me is consumed by an intense drive to do.
Even at my idlest my mind is running wild. Today there are onrushes of exhaustion, again a phrase my head replays—“bone deep weary” because that is where I feel it. The human body has 206 bones, so when every single one of them is besieged by a feeling of extra gravity I become Sisyphus as a regular practice. I feel I will never see the top.
It’s been a consistent two years of forward, then stop, then sideways, then try these, then give up that, then a feeling like when sun rays peek out on cloudy days, then getting smacked in the face by, bone deep weary, needle step, crackling skin, I-want-to-give-in days.
I should print this out, carry it on a laminated card for the doctors, family, friends, lovers, onlookers, witnesses who can’t even see the steel lid I clamp to the top of my stomach to reel the nauseating moments in to the dark recesses of my smile.
An Average Week with Fibromyalgia
I have a mystical experience watching a perfect rainbow arcing over rushing water coming from a waterfall thundering loud & spraying my face. I pay for it with electric shock feelings zapping me from the inside, violent tremors as my limbs respond to their surprise attacks. I cry because I am so angry at this betrayal. My heart is soaring from this hike, my body is anger in motion. My head feels strange & dangerous, I cut short my time at a truly awesome sight.
I didn’t sleep much, the day is already against me. I throw a snowball next to a sun-drenched lake. It’s seventy degrees, the mountains are still slightly snow-capped. I feel peace on a strange beach. I make my way to a million-year-old lake. I am so short of breath I make myself stop and head back for shade. I try again, the sun feels dangerous, I have a sharp pain in my side. I soldier on, this time without crying. None of my photos come out quite right.
It takes eight hours to drive back home. I am doing OK until we hit a line of slow-moving, single lane desert traffic. Every push of the brake is nauseating. This lasts for an hour. Thankfully, I can trade off, lie back as far as I can, shifting as if I can trick the pain away.
I go to another new doctor, I repeat my symptomatic soliloquy, this one really listens. I have my inevitable moment where I remember how bad this is, how uncurable this is, how I am playing a game of side effects. I want to give my friend the best experience of my town that I can, but all I can muster is an hour at the gardens by the sea. Then I crumble, lie in bed all night, crawl my way out to be by her side for a few hours. I take the new medication he prescribed.
I wake up dizzy. The dizzy like if you’ve ever been in an earthquake, not a shake but a swirl. I am nauseated. I am supposed to take my friend to Los Angeles, spend the day at a museum wandering. I take an hour to try to pull myself together, I ask her to drive. We are at the museum and I am feeling steadily worse. I sit and look up these side effects, some people say they never stop. One person calls it whirlybird brain. This is accurate. I join my friend, almost fall walking on a flat surface in a straight line. I am internally terrified. I make it through lunch, I watch the traffic stay terrible. It takes me three hours to get home, I am wrecked. I fall asleep at 7:30.
There is still some latent dizziness. I take a walk in the morning and I can feel moments of spin that stop me in my tracks before I lose my verticality. I will take the pain, please. I spend the rest of my day in bed. I force myself to do yoga. I can’t tell if it helps. My mood starts to blacken, it feels like the walls are pulling down around me. I don’t want to be alive right now.
I wake up, alive, not wanting to be. I spend most of the day like this. That drug really fucked up my brain chemistry. I haven’t felt this awful sad depression haze in at least a month. I thought I was done feeling it. Thankfully, the sun broke through my raining tear clouds. As the darkness left, my familiar aches set in. I welcomed them, they are more manageable. I can’t make myself dinner, I order in. I am asleep by 8:30.
Who do you have to help you at home?
Is this one of those things you can cure or just treat?
Why didn't you tell me sooner?
What side effects are you willing to risk?
Did you know some people think it's all in your head?
If you can't see it, does it exist?
What do you choose to call a gift? How long do you wait before you make the determination? The word gift is defined as "a thing given willingly to someone without payment; a present.” By this standard, a gift has no emotional connotation. It does not have to be received joyfully, or even positively. My body has given me all this pain, I am choosing to take it willingly. It is always present now, and it has done the same for me. I have had to learn to survive this by finding beauty, joy, satisfaction in small things. I’ve given up so many of the large things. I have to hold these contradictions, to give them both a space to be. I will grit my teeth during my widest smile. Sing through tears. Curl up into a ball of happiness.
I think about the chain reaction of my life from the beginnings of this. The relationships I formed, lost, strengthened, maintained. The changes in how I relieve stress, feel connected, make art, relate to the world. I feel fundamentally changed. My identities and selves have had to make way for this, to fight to continue to exist, to step down gracefully, to change. I can’t do the work I once loved. I’ve had to strip myself of the label, the lingering responsibilities, the community, the notoriety, and the certainty. The reality of that is gripping me harder this week than any prior. It’s been six weeks since I walked out of my career, and as I pack my home to embark on an uncertain future, I am cognizant of the safety net it once was. I had a family borne from that identity, I still have them, but I’m no longer blood-related.
What has this pain given me? I’ve grappled so much with what it’s taken. On what it’s given me that I’d pay any price to return. I needed that grief. I had to dive deep in the darkest part of it to really understand. I still don’t. I’ve been careful not to acquiesce, to find a way to take ownership rather than being owned by it. I’m still not convinced it should be called the name I keep being given for it. I like to call it my whatever the fuck. Today, when reading the litany of terrifying side effects for a new drug, it was described as “a condition that causes widespread pain.” I want to know the cause of my condition, not the effects. I don’t think I ever will. It’s likely to not ever get better. It’s getting easier to be at peace with that.