blog carnival "share posts about successful treatments/procedures that have helped make your life better" hosted by the lovely, Jennifer Pettit at Understanding Invisible Illness. Ironically, my invisible illness got in the way. I'm in the thick of it. It's damn near impossible to be positive. Everything is wrong. I'm wrong. And I'm trying to find my way through anyway.
I feel like I can't win for losing. Any little progress gets wiped away with the next wave of symptoms. I can't go out for a night of fun without it costing me the entire next day. I wasn't even rambunctious. I didn't even try and dance for a whole song. Only a minute or so. I was fine. I made it home. I got to bed. And then a few hours later, I'm springing from sleep like the devil is on my heels to make it to the bathroom before I throw up on the floor. I manage that, get back to bed, only to be woken up in another few hours with the explosion of pain behind my left eye. I carefully get from bed, take out my contacts, and take my medication. I turn on the shower as hot as I can stand, but I sit in the tub because standing just takes too much strength. I let the water splash on me, trying to distract my central nervous system with white noise. That way the explosions going on in my head don't hurt as much.
I crawl back into bed, only to be awoken (this time at a human hour) by a series of esophageal spasms that make it feel like my throat is choking itself from the inside. The pain extends from my jaw, down to the top of my stomach. When the spasms hit there, it turns into waves of nausea. I turn on my back massager to beat the muscles into obedience or exhaustion, I don't care which. I just have to make the pain stop. Nothing else matters. My life doesn't matter. My friends don't matter. My loves, my self... nothing matter but making the pain stop. The world disappears and I am helpless to the pain. It grips me and I am its slave. It's terrifying. It's helplessness like nothing else. My own body---the vehicle for my dreams---isn't a safe home for me. I pray for loss of consciousness just so I can get away from it for a little while.
When I feel better, I try to be responsible. Sometimes I sabotage myself (don't do something I know needs getting done) because I want to be a selfish brat. It's difficult not to feel sorry for myself after going through something like that. I don't wanna put things back in the right place. I don't wanna clean up my mess. I don't wanna finish hanging up the clothes. Pouty, stompy face. But I also don't want to be a five-year-old, so I do what I can and excuse the rest. I have to cut myself some slack somewhere. This is a hell of a lot to deal with. No one has a guide book. No one can tell me what to expect.
This esophageal spasm? Totally new. About a month old now, present on a semi-daily basis, so not just a fluke. I do the research. Not much is known. There are three treatments. Two I can't take and I'm already on the third. (This is all information from reliable places like the National Institute of Health and the Mayo Clinic.) It's probably connected to the other nerve damage I have. But it's new. It wasn't there before. I have improved so much in the past two years in my battle. Yet I'm getting worse. The symptoms are expanding into new areas of my body. More vital areas of my body. It's not just my hands and feet anymore. It's in my chest, in my throat, in my ability to swallow and breathe. The pain comes on and all I can do is react. There is no choice. There is only fall down go boom.
And when I get in this place of pain, I remember how bad it was in the migraines. I remember walking through my house, blind, because using my eyes just wasn't an option, it hurt so much. Years of agony. Over one thousand, six hundred days. One day of brutal, crippling pain, right after the other. I don't know that I have the strength for that again. And it's so easy for my body to return to that place. Additionally, it seems to be heading that way regardless. There was nothing I could have done wrong to cause these esophageal spasms. It's something my body it doing on it's own. It's not punishment for misbehavior. It's just punishment. You'll excuse me for sounding like a teenager, but it's not fair.
When medicine works, it is a miraculous, wonderful thing. But there is so much we don't know, don't understand, and don't know how to treat. Our best just isn't good enough. We try. There are scientists out there diligently working to find solutions to these problems. There are great minds who have dedicate their lives to delving into these mysteries. And there are the medical professionals who have to work the messy seam between scientific theory and what actually happens in the real world. Not everyone gets a happy ending. Not every medical mystery is solved. We can stick a big fancy name on it, but that doesn't mean we understand it or know what to do about it. Not every treatment works. Sometimes there is no treatment. In the real world, bad stuff happens to good people.
I want what other people want. I want to find fulfillment and have joy in my life. I want to be able to brush my problems off my shoulders and grow stronger because of them. I like hard work. I like challenging situations. I like having choices. I don't like it when there's nothing I can do. I don't like it when I'm at the mercy of my body. I don't like it when the things I used to love to do get taken from me because I have to baby myself like some delicate flower. I really don't like it when I don't even have the option to think about where my life is going because the present moment is too pressing and demanding. Living in the moment is not all it's cracked up to be! I like having a future and a past too.
I'm gonna make it work somehow. I get through these days somehow. It's not always graceful or pretty, but I get it done. I'm going to keep going to my doctors and working with them. I'll do the treatments and take the drugs. I'll perform the exercises at home and go to the gym for physical therapy. Anything I can do, I will try, because staying in this is just not an option.