Names have power, right? (A Wizard of Earthesea taught me that. Hermione taught us that fearing a name increases fear of the thing itself… )
I have the name. Fibromyalgia. I don’t have any more power over it than I did six years ago. I don’t have any fear of it. Because of it? sure. But of it? no.
I read once that fibro was described as different types and levels of pain affecting 100% of the body 100% of the time.
I don’t think I’ve read a truer statement. There are good days, where pain is ignore-able for the most part. There are bad days where the pain demands to be felt and there are flare up days where pain courses over bones, nestling in joints, burning through muscles non-stop. Everything around me gets lost in a constant haze of pain. That conversation we had, you remember don’t you? I don’t. That tv show, the major plot twist, what was it again?
Those notes I don’t recall writing about that stuff for the exam… forget it. Wait, I already have.
Pain is so isolating. Who else feels it like me? No one. My pain is my own. Every excruciating step, every pill popped in a desperate attempt at relief, every sharp stab or burning sensation or bone deep ache is mine. I have no scars to show for this battle. I have no wounds that bleed with every movement. I have nothing to let you see, what this pain is doing to me. Nothing except the tears on my face, when I finally let them fall. Nothing but the smile I wear over it all.
There’s a quote from a famous rugby player, Richie McCaw: “pain is temporary, pride is permanent“. I laughed when I first heard that. He has no idea. Try living with constant, ever-changing, ever-increasing, ever-nauseating pain every single day and night for six years, and counting, when you’ve done that let me know if you still think pain is temporary.
And pride doesn’t even come into it. I don’t care what you think of me, I don’t care what judgements you make because of how I ‘don’t look sick’, or because my body is doing something embarrassing in public. I don’t care. I have no pride in what my body does.
I take pride in what I accomplish, what I do with this useless pain filled shell of a body. It’s not much, some days it’s only making it into the shower. Or making a cup of tea. Other days it’s passing a uni assessment, or making a dessert, or going out to see a friend.
Finding something to proud of each day is hard. It’s the hardest thing to find small accomplishments but you can find them in most days. Sometimes the biggest accomplishment is making it through the day and to tomorrow.