Ehlers-Danlos Syndrome affects my life more than any other condition I have. If you are wondering why, then you clearly haven’t seen my list of symptoms and comorbities. It affects everything from my head to my toes, and that’s not an exaggeration.
Subluxations, joint hypermobility, and pain make make everything difficult. My knees, especially my left knee, like to sublux. It doesn’t always cause pain, but it typically does. I have to stop what I’m doing to put my knee cap into place. My knees also give out a lot. My ankles like to roll, and recently started just folding under me, especially when getting up off of the floor or doing down stairs. My hips constantly ache from dealing with my knees and ankles. My left ribs like to move around and sublux, which makes sneezing more of an adventure than it should me. The vertebrae in my lower back sublux, this causes temporary numbness and tingling in my legs. I’m actually scared about the possibility of completely dislocating a vertebrae, I don’t know if I could become paralyzed from it or not. For this same reason, I had to stop headbanging (I spend a lot of time at rock shows). I’m afraid of dislocating something in my neck and becoming paralyzed. My elbows have recently decided to join in, I sublux them every once in a while. When it happens, I can’t bend my arm. You can probably imagine the issues I have with walking. Pain and subluxations make it hard for me to get comfortable and sleep at night. I feel like a rice crispie treat with all the snap, crack, and popping my joints do.
Chronic fatigue syndrome is one of my main enemies. There is no word for the type of tired I feel with chronic fatigue syndrome. It feels like every little bit of energy has been sucked out of every cell in my body. Sometimes I’m so tired that I can’t talk or even move. There was one night that I was talking to my mom, and I just stopped talking. I didn’t have anymore energy to speak. I had to lay down. I ended up going to bed at 8 that night and never got up until 8 the next morning. Then I had to take a couple two hour naps the next day. And that didn’t make my fatigue any better. Everything uses up my energy, even typing. I don’t write these posts the same day they are published, I work on them as I can and schedule them. That way I know I will always get a post out, and I can work on them when I can. Some days it feels like I use all my energy by simply being awake.
Gastroparesis, GERD, Gastritis, and IBS all make it difficult to eat. There are times when I have to live off of liquid nutrition for two weeks at a time because of flares. When I have a flare, I cannot eat, I throw up, food feels like a brick in my stomach, my stomach is swollen and painful, I become so weak and dehydrated. It is not a fun time. I’m mostly bed ridden during this time and can’t do anything. Its frustrating. Right now I’m managing with diet and medications. Thankfully its been a few months since my last flare, though I didn’t get my regular appetite back.
Of course there are many other aspects of EDS that affect my life, but these are the three that have a MAJOR impact on my life. I cannot walk without mobility aids and braces, if I can walk at all. I am ALWAYS exhausted, which no amount of sleep or caffeine can fix. And I have a love/hate relationship with food that I’m trying to work on fixing.
I have had to stop doing so many things that I loved. I had to drop out of college because getting up to get to school, sitting for those long periods of time, trying to walk from class to class…everything became too difficult. I can’t get a job as of right now because I never know when I’m going to have a good day or bad day, I have so many doctors appointments, and I haven’t found something I can do yet with all of the limitations I have. I had just started taking pole dancing classes when I had to quit. My shoulders could no longer support my body. I was so excited to take the classes because I had been wanting to take dance classes since I was little, but was never able to take them. Pole dancing let me dance in a very body positive, no shame environment. I’m so bummed I had to give that up. I wish that accessible dancing was more common. I know in the cities, depending on the city of course, there are wheelchair dance groups, but there isn’t one close enough to me. Its the same way with accessible horseback riding. I would love to take horseback riding lessons, but would need to do it at an accessible barn, something I can’t find around here. Even going to concerts is more work than it used to be. I used to be able to just buy tickets and go. Now, not so much. I have to contact venues beforehand to make sure they are accessible. If they aren’t, I have to carefully choose which mobility aid I will be able to use, figure out if seating will be available, and see if there are any accommodations that can be made. Its amazing how many venues still aren’t accessible.
This condition greatly impacts my life. I’m glad I finally have a name for it though. For a long time I didn’t, and it was hard to convince people that I really am sick, and that its not “all in my head”. What I have is very real, and I’m glad I was able to get a diagnosis before this recent worsening of symptoms.