*This is a post about some of my medical issues: PCOS (polycystic ovarian syndrome) and Endometriosis. I’ve been dealing with them for nearly 15 years and they will never go away. I’ve tried nearly everything except one (the big surgery). And it may just be time to do that. So if you’re squeamish, especially about female-bodied stuff (although some male-bodied people get these, too), then I suggest you stop reading. And if you have either of these conditions and suffer from them, then I’m sure you completely understand and a big hug to you. If you know anyone suffering from them, for the love of god give them some chocolate.
It sneaks up on me. It always does. I never know when it’s coming. I never know how long it’s going to last. All I know is that it is complete and total, taking over every system inside and ripping me apart. It might start in my hands, or in my back, or in my mind. I get a little clumsier, I can’t focus as well, I forget simple things, every smell is amplified, and every little thing suddenly gets on my nerves. The twinges of pain start, random and sharp, in my ribs, my abdomen, my hips.
Over the next few days I feel like I am going insane as the pain spreads through my back, my legs, my belly. My spine sets itself on fire as if I am being flayed alive by Ramsey himself. My mind fogs further, as if so much of its energy is taken up by the pain that it can’t spare much for anything else. My uterus feels heavy, like a bowling ball dragging me down. It swells and I sometimes feel like it’s going to burst out of me like an alien (you already know which one). My hips, my ovaries ache as if under extreme pressure. I feel as if someone is stabbing my bladder and my rectum from the inside, just for the fun of it. The pain runs into my hands, my ass, and down my legs, every movement bringing more pain.
And then it gets worse. On top of the flayed back, the pain from hip to hip intensifies, and sharpens on top of the dull throb of the organ behind it all. It’s as if the surgical knife is cutting into me all over again. Yes, again. I have battled this beast before. Twice I’ve gone under the knife to cut out the blood that shouldn’t be there, to try in vain to repair the damage caused by long strings of tissue tying my organs to one another, to try to place everything back in its rightful place. And like some weed, it just keeps coming back.
Medication may take the edge off of it, but that’s all it does. My mind still rails against me, still able to know exactly how much the rest of my body is hurting. The medicine does nothing for the anxiety and depression that comes with it. It doesn’t fix the fluctuating blood sugar that I have to watch out for (and sometimes pass out from if it gets too low). It doesn’t take away the sudden spike in testosterone and hunger. Oh the hunger. And that doesn’t even cover the horrible bleeding, the migraines, or the way people look at you when you are the living confirmation that women “on the rag” are insane and emotional (despite the fact that you may not even menstruate, don’t even get me started on that! But seriously, I do think that’s how the rumors first started. Some women with PCOS and/or endo were suffering and everyone just assumed that all women were just nuts). I took to thinking of myself as a vampire whenever this beast struck me. I imagined my irrational anger and impossible hunger were simply factors of my hunter nature.
It’s interesting what the brain will come up with to distract itself from the pain. Like the narrator in Fight Club, I went within and found my power animal. In this way, Queen Aeryn was born. I gathered that pain, that messed up state of mind, and those fears and dumped them into different characters. Queen Aeryn got most of the rage, that weird tick that makes you feel homicidal for no reason at all. She also received a lot of the hunger, that feeling that no amount of food is enough (because your body is actually not getting the nutrients it needs and the pancreas is just like, “Whatever”).
And Isabelle, poor Isabelle, why she has the exact same illness I do. She’ll suffer from the same dizziness, clumsiness, dietary restrictions, pain, and lowered productivity that I do from time to time. Fortunately for her, she knows what it is that weakens her. She knows it’s not a curse, as I once thought. And she’ll be able to channel it into her power to bend space to her will, as I learned to bend all of the crazy thoughts and creativity borne of the pain into lovely, insane stories. If you read them, you might even be able to tell when I was suffering from it and when I wasn’t.
By far the hardest thing is the helplessness I feel whenever it strikes. There have been times where all I could do was lay in bed like an invalid because I experienced The Little Mermaid-type pain with every step. I had to let my partner help me. I had to give up the idea that I was Superman. I had to learn to let myself rest, to eat regular meals, and to just let it be. I learned to turn my reality into a fantasy that other people might read and laugh and cry at. Each time I go through it I will do the same. It’s no different from humor in general; we must learn to laugh at what would kill or destroy us. Creativity is a hell of a drug. And so is music, but that’s a post for another day. My hands are killing me so I must stop typing for now.
What about you? When medicine doesn’t work, what do you turn to? What beauty or hilarity do you focus on? What hidden illnesses do you survive with that people never even notice?