I wrote this because the pain kept me from sleep. Me and the light of my laptop screen in my darkened bedroom trying to sort out a night of tossing, turning and crying. It is jumbled, it is sour, it is bleak. Just like my state of mind at that time. It isn't particularly uplifting or fun, but it is truthful and I needed to write it.
It’s six a.m. and I haven’t slept. The pain in my leg keeps me from one position longer than a few minutes and then the pain in my dislocated ribs make it even more difficult. Sleeping on my back is out of the question because of the ribs, but my right shoulder has been subluxated off and on over the past week so sleeping on my right side isn’t an option either. The left side is my leg and ribs. So I just lie here and cry. Then scold myself for crying. I shouldn’t be crying, I should be sleeping. I should have taken a pill. But I rationalized not taking another pain pill today because the few days that I gave in and took them I stopped pooping for three days after. Since I FINALLY pooped today I don’t want to start that all over again, but it is starting all over again. The pain. It won’t leave me alone. On Twitter I see chronic pain sufferers use hashtags like #spoonie or #chronicpain on their tweets to document their daily triumphs. I can see other people that struggle and suffer as triumphant and brave and that really really need to share every ounce of agony. But even when I’m alone, in the dark, crying, in so much pain I can’t believe it, something stops me. I can’t do it. It’s my burden.
I used to get mad, about the pain. Which was the overwhelming sadness on delay. I’d be mad that pain kept me from what I thought my life SHOULD be. Embarrassed about cancelling plans, again. These are not new concepts to anyone in or around chronic illness or pain. Which is why I always felt indulgent, selfish, redundant, whiny and even silly for talking about it.
I tried to share my EDS chronic pain story in the past, unsuccessfully. In passive, maybe more aggressive than I meant originally, ways. This illness, this painful body, is my story to tell. I need to learn how to tell it. Crying face down into the new bed your parents bought you so you could sleep better and not have pain all night long, is a story. It isn’t a happy smiling selfie or a funny cat meme to share on social media to go along with the day of the week; it is part of my story. Trouble is, my story is painful to live, so it will be painful to read.
Maybe with a few fart jokes.