Tuesday, June 1, 2010

When reality smacks you in the face...

I seem to have gone post-crazy this week. Whatever, it helps me deal with everything that's been thrown at me. Blogging costs so much less than seeing a psychologist. It's also convenient, as most of my posts are written at stupid o'clock in the morning. Hopefully, you are getting something positive out of this too. Even if I'm writing about what some of you are going through, I know it's exhausting and the furthest thing from fun. But, the positive in all of this mess, is that someone truly "gets it". I get it, and so does every other bendy person who reads my crazy rants. For anyone else reading this, thank-you for trying to "get it", it is very much appreciated when you feel like the rest of the world doesn't want to even try.

On top of seeing awesome GP today, I had an appointment to be put back together (literally) with my chiropractor. There is nothing like the feeling of having everything back where it belongs. It's wonderful. We were talking about the insanity of my past couple weeks, and what my body has decided to put me through. Yes, I think my body and I are separate things...forget the whole mind and body connection, there is no connection when you feel like chewed gum only resentment.

To get back on topic... She asked me something that I have been thinking a lot about, but have never really talked about until now. Aren't you lucky?! She wanted to know where I see myself in five and ten years. *insert panic, fear, anger and sadness here* I guess that's what happens when you haven't yet fully accepted life with EDS. I've accepted that I have it, and it won't go away, but definitely have not accepted that it will most likely get worse. I'm not saying it will get worse because there needs to be some optimism and hope in all of this. I will say that I'm having a really hard time accepting the big physical changes that comes with EDS. I've been comparing myself last year to this year. There's a big difference and I don't like it. What I hate most, is that I have absolutely no control over it. That's the biggest thing I'm learning to deal with right now, my lack of control over my body which also means I can't control what will happen to me in life. I keep thinking that if I did this, or if I did that, my body would get better or would plateau and everything would fall into place. Stupid reality.

I was talking with my bendy friend Sama about all of this and she helped put me back in my place. She explained the why's and how's of life with EDS and it all made sense. There are some things only a bendy friend can explain. Some of what we talked about is here, I really suggest checking it out if you're having a hard time like I am. http://www.youtube.com/watch?v=OMl7rr1M3M0

Where do I see myself in five years...I have no idea. I know that I will most-likely be in a wheel chair because even now, there are days when I would love to have one. I know that I will not be working my jobs that I am now, and that probably any kind of physical activity will be a thing of the past. I see myself being an awesome child-life specialist because I "get it" and being a pro-star advocate for the kiddo's I'd be working with because I've been there. I don't know about relationships, new outlets or even where I'd be living. In ten years, I won't even go there it's too far beyond what I could even imagine. I know where I would love to be in five and ten years but I need to be realistic and find new goals that I can achieve. What I do know for sure, is that I'm going to try my damnedest to make it all work for me. It will require a ton of adaptation, learning how to swallow my pride and ask for help. It's a good thing I'll be able to put my super-power (being stubborn) to good use. The last thing that I know of, is that at the end of the day I will take away something that makes me grow as a person, and that tomorrow isn't far away.

" To fear is one thing. To let fear grab you by the tail and swing you around is another"

(Katherine Peterson)


  1. This sounds JUST like me a year ago. (And sometimes still, I'm sorry to say. *Sending lots of hugs over there*

  2. ...so I go to your blog hoping to find some helpful tips on what to eat for the next couple of weeks, and what do I see you eating: a leaf, and flower and a lilypad! I'm so jealous! lol (christie)