Today, I took a sick day. I called in to work, settled in on the couch and watched movies all day and into the night. I watched three movies: Angela’s Ashes, based on Frank McCourt’s memoir of growing up in poverty-stricken Limerick in the 1940’s; Hunger, a brutally honest drama about Northern Irish prisoners in the Maze prison in Northern Ireland during the Troubles; and, because I felt I needed something lighter after those two heavy-hitters, Love and Other Drugs, a chick flick about a drug rep working in 1990’s Pittsburgh while falling for a girl who just happens to have Parkinson’s disease at age 26.
Out of the three, the last one sounds most lighthearted, am I right?
Well, that’s the one that made me cry.
There’s a scene in the movie where the two MCs have an argument. Jamie comes home and finds that Maggie has had a rough day; she was having issues with her symptoms and couldn’t get meds because the pharmacy was closed, so, as she put it, “No meds for Maggie.” She mixed herself a drink while talking, and after a few snarky comments, the pair slipped into this argument:
J: Do you think maybe you’ve had enough?
M: Nope, I don’t, but you do.
J: Excuse me?
M: Tell me Randall, what exactly is it about me that’s so desirable? There must be 600 girls dying to blow you at this convention.
J: Well, I’m not going to the convention.
M: Why not? Go out with some sexy, limber, ex-cheerleader from Alabama who’s just dying to discuss market projections and sales techniques, or just a hot HMO administrator who likes to bake cookies and rub your head while, while you discuss the evils of generics, or just I don’t know, a normal person, who has energy, and likes to do things, and have fun?
J: Well, I happen to want you.
M: WHY?! Why?! What are you trying to prove? Are you trying to show that you’re not a flake? Are you trying to prove that you can stick with something for once in your life? I mean, you do realise that you are not a good person because you pity fuck the sick girl, right?
He didn’t respond to this; Maggie’s character sneers, then adds that she almost went home with someone from the clinic. It’s the last straw for Jamie and he stands to leave; as the door closes behind him, Maggie starts to snort, a little sneering noise of victory, but her tremors cause her to drop her glass and shatter it. And she screams. Frustration and pain. Starts crying. Jamie, in the hall, hears it, and comes back into the loft instead of leaving her on the floor in tears.
Yep, had tears in my eyes by the end of that. What can I say? I relate, and I guess it hit closer to home, especially because of a lingering suspicion I’ve been harbouring in the privacy of my own mind for quite some time now. The condition I was diagnosed with, known as myofascial pain syndrome or MPS, is similar to fibromyalgia in that it involves persistent and pervasive pain that doesn’t go away with typical forms of treatment like ice, heat, or rest. However, fibromyalgia is usually pain over several if not most areas of the body, whereas MPS is localized, usually to a few areas. MPS is thought to be caused by certain trigger points whereas the causes of fibro are less certain. Additionally, fibro typically has more symptoms associated with it. But MPS can develop into fibro over time, and neither condition has a cure. Treatment usually consists of managing symptoms, finding ways to deal with the pain.
Still with me? All right. Like I said, I was diagnosed with MPS in November of 2011 (and blogged about it). At the time I was also experiencing issues with my shoulders and neck, though not terribly severe, and I’ve had awful ankle and knee muscles for years. Can’t run to save my life. Because I didn’t expect the diagnosis, I hadn’t researched either condition and knew little to nothing about it, so it didn’t occur to me to ask for further clarification as to whether or not that could be related.
But now that I’ve looked into both conditions and have become more aware of the symptoms I experience, I’ve begun to wonder if I don’t have fibromyalgia. Altogether, areas that have been affected by persistent, intractable pain lasting more than 3 months (part of diagnosis criteria) include: back, shoulders, neck, wrists, hands, elbows, knees, ankles, hips. And sometimes I am just sore and achy down to the very core of my being.
I’ve been keeping it quiet though, partially because I’m not sure I’m right, and partially because I’m scared of what I’ll find out. (Oh, and let’s not discount the hassle and general pain in the ass aspect of going to an appointment at campus health, getting a referral to the doctor who diagnosed me, and so on and so fucking forth.)
MPS was a big enough step for me and hard enough to accept, and I’m having enough trouble managing symptoms for that. Mind you, a big chunk of that is due to the fact that I hate taking meds, especially since so many of the ones prescribed for MPS/fibro have a high potential for addiction. Taking painkillers strong enough to completely rid me of pain during a bad flare up could knock out a horse, and they make me silly and stupid throughout the day. Better to be in control and a bit sore than dazed and stupid.
Dealing with fibro would likely almost guarantee my ending up with a prescription for something, which to date I’ve avoided. I don’t like that one bit, especially the fact that antidepressants are often among the prescriptions given. Let me say this quite clearly: I am not fucking depressed. I am by nature a happy, humorous and friendly person who likes to smile and laugh, and I don’t often dwell on my misfortunes. Do I have days when I feel sorry for myself and mope about because of this condition? You’re damn right I do. But I am not taking a steady regime of medication because the condition/disorder/syndrome/whatever the fuck you’d like to call it causes me to occasionally feel like shit. That’s called being human. We all have our blue days. They help us appreciate the good. So screw the medication.
Almost more frightening than the thought of having fibro, though, is the thought of not having it. Because if I don’t, even if I’m stuck with the diagnosis I already have, then what do I do? I’m stuck at a stalemate as it is; I can’t do anything more because of financial and time issues. And yet, something clearly has to be done, because I’m not improving.
Through it all though is the one person I know will always be there for me. (To friends who are reading this, I’m not excluding you and I know you’ll be there too, but just go with it.) The guy I’ve fallen in love with, the one I plan to live the rest of my life and celebrate all its milestones with. He’s incredible, truly he is, and I don’t know what I’d do without him. Not once has he told me to stop complaining or called me annoying or anything of the sort. He listens patiently while I rant about what I can’t change and just need to live with and lets me say whatever I like with no judgement and no impatience.
But even though we’ve known each other for nearly a decade, even though we’ve been together almost two years and have every intention of spending the rest of our lives together, even though he makes me happier than I’ve ever been and I know, dammit, that I make him happy too, sometimes, just like Maggie, I can’t help but wonder: Why does this amazing man, one who’s already done so much with his life and will doubtlessly go on to accomplish whatever he sets his mind to, want me, with my ADHD, my writer’s brain, and the stupid chronic pain condition that I freely admit can turn me into a class-A bitch?
For that, I hate this condition. I hate that it can make me feel like something less, like somehow there was a flaw in my mould when I was created and something didn’t go quite right, didn’t make me quite the same build as the others. Because of MPS, I struggle to open jars and water bottles by myself. Sometimes, living alone, I’ve had to choose to eat something else because I couldn’t open the item I wanted to use. And it’s maddening. The days when everything hurts, when all I want to do is curl up in bed and sleep, I wonder why he even loves me as much as he does, when he could have someone who doesn’t have to sleep a certain way to avoid losing sensation in my limbs, someone who can cuddle in any position they want without needing to worry about causing back pain for the next week.
Why me? I’d love to scream it, love to shake my fist at the universe and demand a good, satisfying answer. But I know that’s foolish, I know that’s just the way it is. And I know damn well that I am no less of a person because of my diagnosis, just like a person is still a person no matter the colour of their skin or the religion they believe in. But on those days when everything aches, when succumbing to painkillers does nothing more than dull the pain to a throbbing ache and turn me into a zombie of myself, sometimes you can’t help a little self-pity, you can’t help but ask why, and in my opinion, no one in their right mind should tell you not to. We’re human, damn it, and we feel–pride to self-pity and everything in between. You can’t change someone’s feelings because you tell them not to feel a certain way.
Why do you want me? I’d also like to ask that question. Just ask it, ask what he sees in me, because you know what, no matter how much effort we put in to set ourselves apart from our conditions, sometimes it’s still cathartic and heartening to hear someone else tell you all the qualities that make you lovable. And I know he’d tell me, if I explained it, but I’m not sure I can. Strange to say after such a long post on the matter, but it’s true.
Either way–no matter the diagnosis, no matter the terrible, unanswerable questions my brain throws at me, I’m determined to enjoy what I have and not focus on what causes me pain.
Chronic pain, be it MPS or fibro or anything else, can suck it. I’m still me, and always will be, no matter what gets thrown at me. And I have someone incredible by my side for the whole thing. So don’t try to placate me or comfort me. We’ll be all right. Don’t tell me everything will be wonderful, because you can’t know that for sure. Just let me be who I am. Let me live the way I choose to live, and let me be what I want to be: happy.