I have fibromyalgia. Do you know what that is? It’s really super lame. I was diagnosed with it at 23 while working in a soul crushing job, pretending I didn’t day dream about JUST HOW BADLY I’d have to get hurt to not have to go to work anymore, but not be like…permanently injured, and watching my body go through a complete and total breakdown. (I’m something of an autoimmune disorder collector – I’ve also got a raging case of the Hashimotos Thyroiditis.)
Blah blah blah, it’s seven years later. My self-care plan includes ignoring the pain, getting shitty sleep, finishing work at 1am and having Taco Bell for dinner, and running around after a toddler while over-extending myself professionally just for kicks. So I’m doing pretty excellent with it.
This morning, I woke up at 5am because I felt like someone was trying to rip my leg from it’s socket. (I swear, this isn’t a wah wah moment, I’m just telling you a story. I’m in a good mood actually.) (But see, that’s the thing about ignoring your Fibromyalgia for seven years. You CAN [sort of] be happy in your head and miserable in your body at the same time! Hooray me!) It’s different than other pain. It’s like a deep, deep, throbbing ache at the core of your bones, or muscles, or whatever it is that’s throbbing. For me, it’s usually my hips or armpits (charming, right?) At one point during my pregnancy it landed me in the hospital the pain got so crazy. And my modus operandii is to ignore it to the best of my ability and go about my day. This is often difficult because the pain is intense, but who has time for limitations these days, right?
This morning as I sat here in my award-winningly comfortable Aeron chair unable to find anything even remotely resembling a modicum of comfort, I had kind of had enough. Recently, I’ve had a series of AHA moments. ”AHA! You can’t care for your toddler by your self and work 60 hours a week! It’s not possible!” “AHA! That cowlic in your hair is from sleeping stupid and if you wear a silk scarf it will go away!” and this morning, it was “AHA! People have limits and life is better when you know what they are!” Wait, I jumped ahead.
Ahem. So. This morning as I sat here in my award-winningly comfortable Aeron chair unable to find anything even remotely resembling a modicum of comfort, I had kind of had enough. Like right now? I might let you amputate my left leg if you asked nicely and had good drugs.
So I asked my twitter friends about a medicine called Lyrica which is meant to treat phantom pain like mine. I got a few answers — mostly negative — but the lovely @badacci responded with a link to a blog she found inspiring, and it’s called…FIBROMYAWESOME. (Actually I think it’s called 25 pills a day, and sub-called Fibromyawesome.)
It’s written by a girl named Mary who gets it in a way that I don’t. Maybe because she’s unfortunately had more practice. I read in awe as Mary talked (hilariously) matter-of-factly about the limitations of Fibromyalgia and Chronic Fatigue syndrome and how she deals with them. But here’s the thing: SHE DOES DEAL WITH THEM.
What she doesn’t do? Is flagellate herself for being a “worthless loser” for having a bad day. As I read about Mary giving herself time to rest and recuperate after what would an active weekend, something might have clicked.
I am a damn fool. Quality of life is about so much more than money or things, but since I lost my job and ran the financial gauntlet I seem to have forgotten that and have let my health and well being fall to the wayside in pursuit of disposable income.
(Also I really don’t ever want to do that unemployment thing again. Scary.)
So it stops here. When I finish my work for the day I’m going to take Delilah to the Zoo and spring for the tram ride. And then, when we get home, I’m going to look into some sort of day-time child care solution. For both our sakes. For all three of our sakes. And for the sake of my poor Dad too, who gets the ass-end of it every time I’m cranky (which is always, because of the chronic pain and exhaustion and stuff) and he asks me about something unpleasant like say…that most recent screenwriting endeavor that fell apart. Sorry Dad. It’s not your fault that I am bad at juggling life. But I’m going to try to engrain this word “limitations” into my mind and try to do better at EVERYTHING by giving myself a break.
P.S. Aren’t the Photojojo iPhone lenses Scott was using at the Christmas Tree lot rad?