The Life of a Chronically Ill Girl

Eivie is a twenty year old girl who still lives with her parents. She has to rely on them for everything, and, each day is spent just trying to survive. Life is rough, each day the same. Struggle to sleep. Struggle to wake up. Getting exhausted from simple things and having to trudge from one room to another. Pain radiating racing from this place or that, and only spreading, from there. Eivie is forced to live with a Chronic Condition.
Her neighbors asstrainged son moved back in. She can see into his window, and he can see into hers. They're strangers now, but, they won't stay that way.


Author's note

This is written from personal experience. I have Ehler's Danlos, but, this isn't my exact story. It is a piece of fiction, but, some of it is my story.

1. Chapter One

       I've ways been different. I wear all black and am interested in dark and unusual things. I was an outcast in High School The only friends I've ever had, were mere acquaintances, best friends with each other, barely sparing a second for me. I kept them company when their friends weren't around, but, it was very obviously that I was being used. I hated being alone, so, I guess being used was my thing. I struggled with depression since I was around ten. I was a tom boy as a child, but, this was around the time that I started wearing only black, getting weird looks, and worrying those around me. People would say that I was scary, and, I liked it that way. I kept a permanent scowl on my face to keep people away from me. It didn't always work, whether that were bullies, or, those aforementioned acquaintances. I had friends, for awhile, real friends, but, as is the way of life, they dissipated, moving on with their lives. I'd see them in the halls, not seeing any recognition cross their faces, while I remembered the good times that we had. 

       Around the time I started High School, I was a self-harmer. It was only a few scratches, at first, an experiment that tied me over. Then, I began to hunger for it, thirsting to have blood dripping down my body. I thought about draining myself dry. I took pills to make myself pass out at night, craving more than just a few. I craved the whole thing, to make this miserable life end.

       It's strange to remember my childhood, to know that I was a happy kid. I had friends. I did sport. I ran around the playground, frantically, just being a kid. I had no cares in the world. I couldn't do the splits, but I could put my foot all the way behind my head, or fit my whole fist in my mouth. When I was in fifth grade, the grandfather I adored, yet, only got to see a few times a year, was in the hospital. He had cancer, something that, a week after being admitted, his body surrendered his light to. This was my first run with death.  I was never the same, after that.

       Around this same time, my body was also changing. I hit puberty sometime earlier that year, but, periods and mood swings were the least of my worries. When I would lay on the floor and stretch my arms and legs out, my hip bones would raise up, painfully. I would lay in bed at night, and, my shoulders would pop backwards, sticking out of place. My ribs would shift, every time I coughed. I can slide my hands underneath them and lift them up, like they're caved in, instead of resting where they were made to be. I would lie awake, my knees throbbing. I would pretend that I was a werewolf, imagining that them "shifting" would be something painful, too. I would stay as still as I could, as the pain radiated, getting worse, my wolf self trying to take control of my body. I imagined myself as a late-blooming cub, that, any night now, as long as I stayed still and let the shift happen, that I would soon be allowed to join my pack. But, the pain would become too worse and my body would become unbearably uncomfortable, and I would break my fantasizing spell, curling up into a bawl and screaming. 

       Every pain I had, I was told that it was growing pains. Every "pop" and shift I felt in my boy was deemed as me doing it to myself, and that, if I stopped doing that, then it would no longer happen. But, when I would lay in bed that night, my shoulders would shill pop. When I would sit down, my hips would still jerk. My ears started ringing very frequently, as well, my jaw cracking while I ate. I couldn't eat, without pain. One day, I was at the dentist, and I told them. They said I had sprained the ligaments in my jaw, something that couldn't be fixed. They gave me a retainer to wear at night, something that In would have to keep for the rest of my life. I had to have two root canals, when, I've never had so much as a cavity. I stopped being able to run, when, I loved to do it. I admit that, I had issues keeping up in gym class, but, when I could dictate how many breaks I took and for how long, I could fair pretty well. I wasn't fast, but, I had fun. But, my ankles couldn't handle it. I would sprain them too often. I snapped something in my foot that never grew back right. I still have this pain, today. 

       Every sport I joined, I had to quit. I wasn't smart or creative. I wasn't social. Those few extracurricular activities were all that I had, and, they weren't anything rough or violent, by far. Yet, I started having surgeries from explainable injuries. The ankle I snapped, the tendons that shifted out of place. The bones that dislocated, do to the collagen around them, which is a substance produced by your body to keep your bones in place, having rubbed away, leaving the things that it was made to protect, unprotected.. Because my bones were shifting, they were touching each other, and grinding painfully together. This created a bone spur, an inflamed growth that formed from the grinding. My tendons would slip from their rightful places and my muscles would tear. Surgery was the only way to fix these types of injuries. I missed school to be at the hospital, then spent many more months recuperating by attending therapy, usually before school ended, having to miss more classes. Seeing as I didn't do sports besides running and bowling, these occurrences were shocking and perplexing. I'd quit sports, but, they still kept happening. Eventually, I had to quit school, because the injuries were happening too close together. 

       My parents were stressed, their wallets beyond anorexic. Companies were demanding money that they no longer had. Medical bills kept piling up and going to collections. My insanity was, also, depleting. I was distracted by my injuries, having physical pain to worry about, but, being cooped up at home for all hours of the day made my cutting come back into play. I was a wreck. I wanted to die, now, more than ever before. A life spent in pain was no life at all. The doctors were perplexed as to why these injuries were even occurring. We had suspicions, but only one doctor listened to them, confirming what we've always suspected. I don't know which was worse, the unknown, or the known.

       I was born with a connective tissue disorder called Ehler's Danlos Syndrome. It's a result of one gene from each parent mutating and creating the gene. My body doesn't produce collagen, which, we've already established is what keeps your bones, tendons, joints, and the like, in their rightful places. So, without that, I'm screwed. Now, there are several different forms of this disorder. Some of them were severe, causing more than just pain and a few detaching bones. I was one of the "lucky" victims. I've never had any issues with my internal organs, so, there is no reason to fear that I had these other types. Type three, which I have, they call Hypermobility Syndrome, meaning that my joins extend farther than what is  normal, resulting in pain. My symptoms injured more than just "a little extra pain." I wasn't stretchy, I fell apart if I stretched too far or walked for too long. 

       I never leave the house, anymore. My days were spend doing what little exercise I could manage to tire my mind out long enough to actually get some sleep that night. On average, I get about three or four hours, finally falling asleep sometimes after five in the morning. Some days, I slept passed noon. When the exhaustion takes over, I sleep for fourteen or more hours straight, waking up at one or two in the afternoon. I try to not sleep all day, but, I also, never sleep at night. the insomnia is too much. Incidentally, if you don't get up and go, then you don't sleep. People like me can't just "get up and go," so, I guess we're supposed to suffer laying in bed for hours on end, wide awake when the rest of the world is sleeping, and when we finally wake up, find that we'v slept for one and a half, maybe two hours. That's all we get for the rest of the twenty four hours, trying again around the same time that night, only for it to result in the same way, despite the low amount of sleep I'd gotten. You think that I would have passed out from having that little sleep. You'd be wrong.

       Ehler's Danlos gives you a lot more problems than pain, misery, and a lifetime of surgeries. I have Insomnia. Depression. Anxiety. 

       "What teenager doesn't?"

       I bruise easy, have thin skin that is softer than most, and very sensitive to things like band aids, glue, and body products. I have a hared time remembering words, stopping mid sentence to search my mind for the one thing that I'm trying to say. I stutter to fill in the silence. I get chronic headaches from- well, several factors, and, my ear starts to ring every time I enter a room that is a different frequency than the last, or, when the air conditioner turns on or off, changing the sounds in my room. Bad eyesight is a thing, too. Your eyes, ears, brain, everything, has connective tissue. I've always been both severely near and far sighted, and, when I pick up my new glasses, they barely make a difference. My eyes change faster than I'm allowed to get new glasses. Even if companies allowed you an endless supply of glasses, I'm sure we couldn't keep up. 

       I'll be walking a short distance, and the room with start spinning. I stop where I stand for twenty or more seconds, waiting for the pressure to return to normal.  I always see dots, like I can see large particles or air.  I get dizzy just taking a shower, and then I'm feeling ready for a nap, because Chronic Fatigue only allows you to do so much. I'm bored a lot of the time, taking no joy in the things that I used to. I sit and stare at the wall. When the pain is really bad, I seek a way to distract myself. Reading and writing is difficult, because I mix up the words when I read them, and confuse them with other words, causing me to have to reread the entire page over, because it's making no sense. My writing, I have to fight to remember what word I'm thinking of, or even the entire sentence I've just procured. It's more trouble that it's worth, and, I was never going to write something of use or delight, anyway. Nobody would read my work. I had nothing interesting to say. 

       My parents both work days, being home at nights. Twice a week, I have a home nurse come check on me. Her name is Chelsea, and, she's pretty nice. She's a late twenty year old who's getting married soon. She talks a lot about her happy relationship and the kids she's planning to have. I fake excitement for her. I don't know if I wanted kids. I've never thought about it. You had to have a relationship, to have kids, and, I've never even had my first date, so, surely, that will never happen. I only made it to the middle of my second year of high school, before I left for good. I finished online, but, it wasn't the same. I would never work a job. I would never go to collage. I would never get married and have kids. 

       What was the point of living?

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