One of my bendy friends on facebook asked the question: " If you could do/be/have anything you wanted, what would it be ? ". My answer involved things that I either once had, or was aiming towards. I'm not saying that I don't have any new goals, or things I'd love and can still do, but I miss my body the way it used to be. Summer isn't the same, I feel so confined in a body that does nothing but fall apart. I most definitely have nothing against relaxing in a park with a friend and having an ice cream cone, but there are things that still call my name and there's nothing I can do about it. One of my first thoughts after I woke up this morning, is that I still have money on my card at the paddle centre that isn't being used. I know I can't paddle anymore and it's just going to sit there, so I'm going to have to call and see if they can reimburse me for what's left on the card. Yeah, that conversation is going to be a blast. "Hi, I'm wondering if I can get my money back, I'm turning to mush and can't paddle anymore...Yes, I've tried and ended up dislocating like every joint in my body....No, it's not something that gets better." Going out to play soccer with a bunch of friends, that's not happening anymore either. Same goes for the climbing gym, anything that involves endurance (walking around fits in that category) or even eating without constantly choking. Thanks EDS.
When I was at the conference, I was normal. I didn't feel the need to justify everything I did, and nobody stared at me. Here, it's a whole different story. I could easily loose count of the number of people who feel the need to stare at me on the subway, or anywhere else for that matter. I'm not overly self-conscious, but seriously who raised them!! I can understand the whole curiosity thing, but you can be curious without making others uncomfortable. Especially, the subject of your curiosity. This is just me walking with my leg turned in, looking like I'm drunk with braces on my ankles. Things could get interesting when I finally have my AFO's and a wheelchair. Throw in the occasional neck brace and whatever else I'm using and I could have my own show.
I still feel like there are only a few friends who truly understand the complexities of EDS. For that, I get questioned as to what my body is doing, weather or not it merits all the braces, treatments and the wheels. Best of all, if it's just in my head, and I should work on my attitude. Granted, there are only a few who have seen me at my best (insert sarcasm here), but I have been more than honest in letting people know that I spend a lot of time in bed, and recovering for 2-3 days from doing something I used to do with no problem.
Nobody really sees me when my suspected dysautonomia is acting up, when I'm puking because my body can't process pain, when it's 4am and I'd love to do nothing more than sleep but I can't because I feel like I'm going to jump out of my skin. They don't see me tossing and turning in bed for hours trying to get comfortable without dislocating something. They don't see the effing agony of intense pain that won't go away, that has rendered me useless to myself and anyone else. They don't get what it's like to be at appointments 2-5 times each week just to be able to function independently. Most of all, they don't understand what it's like to go to sleep in agony, and wake up hoping to feel a little better but wake feeling worse knowing there's an entire day ahead.
I really try hard to maintain a positive attitude, and keep looking forward. Since returning from the conference I have been nothing but exhausted in every possible way from EDS. I'm essentially sick and tired or being bendy and tired. I'm sick of the isolation, questions, pain, unpredictability, constantly having to adapt everything and the relentless reminders that everything is getting worse as each day passes. Haha, this sounds so bitter...I promise, I'm not.
It's pretty obvious that at this moment in time, I'm not the world's happiest person. These are the days that I MAKE myself find the positive and happy times during my day before I crash at night. Here's my list of happy things for today: Got to decorate my living room with streamers and balloons, it was sunny outside, I wore one of my favourite skirts, I got to draw on the windows at work, I met some new people, I got to blow bubbles that smelled like strawberries, and lastly, it's Friday!!!!
"When I step into the light, my arms are open wide. When I step into the light, my eyes search wildly. Would you not like to be, sitting on top of the world with your legs hanging free. Would you not like to be, ok,ok,ok."
(Dave Matthews Band)
(Dave Matthews Band)