Friday, January 31, 2014

A Little Bit of My EDS Reality

One of the reasons I initially decided to start a blog was to be able to give my own perspective on my medical issues. I had suspected there was something odd about me medically for years before I was finally diagnosed in September with Ehlers-Danlos Syndrome, but in many ways, I didn't realize how abnormal some of my symptoms were. I didn't even realize they were symptoms! Since September, I've learned a lot about myself and the world around me, and in some ways, life makes much more sense than it ever did.

Most people I've come into contact with have never even heard of EDS. The people closest to me are just beginning to understand what it means for me and what is has meant for me. Most of the things written about it are so clinical; I think it's very difficult for a healthy person to understand what EDS can really mean. Symptoms and manifestations of the Syndrome vary from type to type and person to person, but in the hopes of enlightening people to the actual impact EDS can have on a person's life, here's a list of ways my EDS has impacted MY life.
  1. Three and a half years ago, I lost most of the productive use of my feet. I somehow fractured my right talus (a bone in the ankle), the fracture didn't heal, and I had to have surgery 6 months later to remove scar tissue and the broken-off piece of bone. While I was healing, I couldn't put pressure on that ankle, and a week after surgery, the other ankle started feeling bad. To this day, it still does, and it's been constantly swollen since then. I wear braces on both of my ankles, and I can't run, jump, skip, walk any significant distance, stand for any real period of time, or use stairs unless I absolutely need to.
  2. Even though EDS gives me "loose joints" and has forced me to live an extremely sedentary lifestyle, you'd never know it from my muscles. Especially in my legs, they are large, and they are super tight all the time, which means I constantly experience at least a low level of pain, fatigue, and/or soreness from which there's ZERO relief. Intense massage can help a bit, but it's not easy for people around me to do, because it's hard to get into the muscle. Imagine trying to knead a new basketball. That's what it's like trying to manipulate the muscles in my legs.
  3. Most of the time, when I'm just going to school, I don't bother doing anything fancy to my hair. I used to straighten it almost every day (I have ridiculous Italian frizzy curls), but I stopped a few years ago - because it was painful. I never understood how other women got up and did their hair everyday, and then I realized that they were able to because they weren't in pain from it. I thought it was natural for my hands and wrists and arms to feel horrible after. I didn't realize that my finger joints, wrists, elbows, and shoulders were all constantly subluxing while I was working on my hair.
  4. I am extremely clutzy, and not matter how careful I am, I always knock into things/knock things over. I smash my knees and/or elbows into doorjambs, walls, and tables/desks constantly, even when I conciously try not to. I will pour myself a glass of water, put it down, and not even thirty seconds later, manage to send it flying across the room even when I'm concentrating really hard on not accidentally knocking it over. My poor proprioception is because my joints don't have any idea where they are in space, so they can't accurately tell my brain where they are, allowing me to avoid such mishaps. This might also be why I'm terrible at parking straight.
  5. Before I was born, my mother's doctor thought I was going to be born with spina bifida, because my AFP was abnormally high. After I was born, I developed jaundice, had severe milk allergies, and ended up at the doctor's office/ER multiple times for breathing treatments. I had chronic bronchitis, severe allergies which required shots, and by the time I was seven, my doctor noticed that I had absolutely no arch whatsoever on my feet, and I walked incorrectly. By the time I was ten, by orthopedist could pull my knee-cap halfway down my leg, and he told me I was "loose-jointed." I had chronic sinusitis and chronic ear infections, but I couldn't run a fever. I began to have chronic ankle issues - they were constantly rolling, I tripped all over the place all the time, and I went through all manner of braces and orthotics. I started getting injured constantly, and my healing times were over double what they should have been. I started having issues with milk again, and ended up doubled over in pain almost every night for no apparent reason, feeling like something was clawing and ripping at my insides. All of these symptoms were EDS-related, but not a single doctor ever mentioned the fact that there might be something bigger at work.
  6. Every morning, I wake up with something new dislocated. Dislocations are supposed to be painful - and they are - but when you deal with them sometimes multiple times daily, you kind of get desensitized to it. As long as you can pop the joint back into place, you feel like everything's normal.
  7. For someone who isn't blind or legally blind, I have pretty bad eyesight. My prescription is currently between -6.25 and -6.50. I literally cannot function without my glasses or contacts, and I need to be very careful, if I take my glasses off, to remember where I put them down. If I don't remember, I'm in trouble, because I pretty much need my glasses to find my glasses.
  8. Stairs are bad. Very, very bad. It sounds crazy, but they're actually life-threatening. Since my joints are extremely unstable bodywide, I am a huge fall risk. If my ankles aren't rolling even with the braces and causing me to trip, my knees or my hips are likely dislocating, and when one part dislocates or subluxes while I'm in motion, another part inevitably follows. I can hold on to a railing or another person, but my wrists, elbows, and shoulders all sublux and dislocate, so that doesn't make things much better. Considering I have issues not tripping and falling flat on my face on flat, even surfaces, stairs terrify me. Years ago, when I used them regularly, I used to brace myself for a fall - I tripped up the stairs at least once a day every day I was in high school.
  9. I don't ever feel well-rested. Ever. I can function after 7 and 1/2 hours of sleep, but on any less than that, I'm feel like garbage all day and can't keep myself awake. I set three alarms in succession the morning to mentally prepare myself to wake up, because I feel just as tired in the morning when I get up as I did at night when I went to bed. I also have my boyfriend call me every day to wake me up, because I sleep like the dead. Even if I've already gotten 8-12 hours of sleep, I sometimes won't wake up to my alarm clock and my phone blaring on full volume. I used to regularly oversleep the alarms by as much as three hours. I also seem to have a digestive intolerance/allergy for caffeine, so coffee, tea, or anything caffienated is out of the question unless I want to spend the next four hours in the bathroom.
  10. I am extremely flexible. Creepily flexible. I had no idea that most other people couldn't touch their palms to the floor with their knees locked straight or that there was any part of someone's back they actually couldn't scratch until last year. I also only recently came to understand why women say they need someone to zip/unzip their dress.
So, welcome to my weird world. Do you know anyone with Ehlers-Danlos Syndrome?

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