Tuesday, May 3, 2011

The gong show that is EDS, and the exhaustion that comes with it

So life has been all about survival, with some fun thrown into the mix. As I'm only starting to process my last year, there have been some really hard pills to swallow. I have so many things I want to write about, but can't ever seem to get started. I was talking about this with one of my best friends who also happens to be a bendy. He got me started with a sentence, and I had to go from there. It went like this: I was thinking while I washed my face that... I will never get tired of the smell of my aloe cleanser, but I do get tired of the gong-show that is EDS.

This time last year, is when I got sick with Dysautonomia. Forget all the other fun that comes with EDS, from that day on my old life as I knew it was over. Last year, I subluxed my neck for the 2nd time and spent my birthday in bed. Funny enough, I've spent other birthdays in bed too. That day also happened to be my last day at one of my jobs that I had been working at forever. It was the job that I loved, and couldn't get enough of. Giving that up was really difficult. As the months went on and I got increasingly sick, I had to give up more. My time doing the things I loved, that were still left on the "Can do" list, was exchanged for time in bed, at appointments or in the hospital. Along with not being able to do the the things I loved anymore, I lost some of the ability to do things that so many of us take for granted, like eating and drinking safely. Don't even get me started on the implications that it had on my social life, I lost a lot of friends.

In the last year, we have also got it diagnosed and stabilized. I say "we" because I've got an incredible team of people who have worked really hard to keep me moving forward. I have had some amazing friends who have stuck it out with me, and I don't know where I'd be without them. They understand that being chronically sick can take it's toll on someone. Yet unconditionally, they've had my back. With that, came the biggest slice of humble pie I have ever gotten. I've gone from someone who was completely independent and "had it all", to someone who has "lost it all" and become dependent on everyone else. Having it all, and losing it all are subjective terms. After losing everything, and wallowing in my nothingness, I slowly started to realize that I really did have it all. I had shelter, food, friends,family, health-care and something I believed in.

I'm not saying this shit is easy, because it's not. Everyday is a battle. I fight hard to keep my symptoms under control, and to keep my body together. I'm constantly fighting to get funding, I fight to get my reading, studying and paper-writing done for school. And, let's not forget fighting with doctors and health-care providers. A lot of the time, all that fighting results in defeat. Everyday I feel like ass, with varying degrees. Some days I can't keep myself from laying on the floor puking from pain or Dysautonomia. Funding gets turned down for just about everything from a feeding pump to keep me alive, to schooling and housing. I have to spend an insane amount of time and energy advocating for myself so I can get the appropriate health-care that I need. When your diagnoses aren't cookie-cutter and are out of pretty much everyone's scope of practice, it's especially difficult to get someone to listen to you. This has been my gong-show for the past couple of weeks, pure insanity.

I'm exhausted. There's a huge part of me that doesn't want to fight anymore, I want a break. A big, fat, long, blissful break. But I can't take a break, and it's not a choice. I have to keep pushing through this crap, so I can do something other than survive. There is so much that I want to do and can still do, but I've got to fight for it. Oh, and I can't ever stop because it will be like this everyday forever. I know it's completely unrealistic to wish for even a day where I don't have to fight, but wouldn't it be nice? I'd also love for all the people who think living with EDS and Dysautonomia "isn't that bad" ,"not that hard" or "isn't painful" to spend 24 hours in this body. Today, I mostly wish that I'd get taken seriously even if I am a patient. Because I know my shit, and messing with me will be trouble, but right now I'm drained. I've also got about a 12inch stack of EDS related paperwork that needs to be done, hahaha being disabled is a blast sometimes!!

I'm signing off with something one of my bendy friends said last week, I thought it was brilliant. Thanks for reading my rant, it was so nice to get it off my chest.

"It's amazing how dramatic our lives are, considering we rarely leave the house"


  1. It's hard to reply to a post like this.

    Sending Hugs and Happy Thoughts in your direction!