Wednesday, June 23, 2010

Thoughts on wheels

After reality had pretty much smacked me in the face, I had to start making things happen in order to make life work for me. I can't really say I'm someone who cares about quantity, I'm all about quality. I'm sure working in the field that I do, has given me a viewpoint that not many people get to see. I play the therapist role at work, but I also understand what it's like to live in a body that doesn't work. This gives me a rather unique perspective, which I am thankful for. It allows me to turn on my therapist brain, look at my situation and find ways to increase my independence and come up with multiple back-up plans to make it work for me. It also has given me resources that I could not otherwise access without a lot of research and work. Those resources are my friends. We work together, and we play together.This means they see the girl who can kick some serious ass at work, and the girl who spends a lot of time in bed and not being able to participate in life. In doing so, they have been able to turn on their therapist brains and give me input that otherwise would not have been possible with any of my doctors.

I'm now in the process of getting some new wheels. It's not the kind that we all wish for, it's a wheel chair. I'm not sure how I feel about the whole thing yet. I'm looking forward to being able to participate in life more, and have something to make life easier with injuries and bad pain days. But really, who looks forward to getting a wheel-chair? I don't think many of us as children or even adults had visions of ourselves in a wheel-chair. Even last year, it wasn't a thought that even crossed my mind. I was at the climbing gym, paddling and being insanely active. I'm going to have to learn how to live with more stares, ignorance and places that aren't accessible. It will require more planning, patience and a positive attitude. What makes me more anxious than anything, are the inevitable times when I'll run into someone I haven't seen for a while. Having to explain EDS and what it does to me gets tiring. Especially when I get told things like "You were fine before, why is this happening now?" No, I wasn't fine before. 14 years ago I was starting my little journey into the world of EDS with many, many bumps along the road. I find myself having a lot less patience for people who think they're doing me a favour by giving me their pity, claims to understand what EDS is like because they sometimes have a sore knee, or unwanted advise like getting some x-rays done. You know, because I never thought of that. It would fix all my problems!! Haha I've had so many x-rays and scans that I'm probably a bit radioactive by now. That's why my toes always glow when I'm somewhere dark. To be honest, I'm just not looking forward to the wheels at all, at least not yet. Yes, it could signify a new beginning,but for now I'm seeing a lot of things ending. Why do transitions have to suck ? I think it's time I invent some kind of extreme wheelchair something or other.

Those are my jumbled thoughts for now, maybe during the night I'll come up with a brilliant plan that involves a hover-chair. Now that would be cool! Writing these posts when I'm a little more coherent would probably make some sense too.

For now, this awesome video will have to suffice.

"Obladi Obladah, life goes on...."
(The Beatles)


  1. I just got my first wheelchair (that is not borrowed) last November. I know that it is never something that you think, "Wow! Yeah! This is gonna be awesome, just what I've always wanted!" Because it's not that anyone really loves being a in a wheelchair--it's that I really hate being bedridden. I've got things to do! And I can do so many more things with my pimped-out wheels. I could spout a ton of advice to you if you like, but I don't want to inundate you unasked, so I'm here if you'd like to hear it. Best of luck and hugs as always!

  2. I was pretty happy when I got my first chair. However, I'm about to get my first set of adaptive flatware and I'm not happy about that.
    I don't know why transitions tend to suck, but they do for me too.
    I hope your new chair works really well for you.

  3. I know you mentioned in your latest post that you'd be getting a chair in the coming week, but if there is any way you can get a prescription form your doctor for a lightweight or even better an ultralight wheelchair--go for it.

    Once you have that, my advice would be to find a Mobility/assistive technology business (can usually find by for searching home healthcare, durable medical equipment, or local wheelchair vendors). You want to find somebody who is certified is seating you in a chair. By that I mean, they know how to exam you, measure you, take your individual needs, merits, flaws, conditions, concerns, you name it into account and then find the chair that best fits you. Then they deal with the insurance crap. they go through the ordering crap. I had to go see a special psychical therapist for a Mobility Evaluation for my insurance to cover things, but that was pretty easy.

    Anyway--I highly recommend getting the lightest chair you are able to. Before I got my chair, I was working with borrowed 50lb clunker. I couldn't lift it out of the truck without my shoulders coming out, it maneuvered like a hippo out of water, and was heavy and tiring to push. I now have a Quickie Ti that weighs about 20lb and the difference is amazing. Plus it's bright blue! :) The first two places I went to looking for a chair told me that there is no such thing as a lightweight wheelchair. that my choices were all 45lbs and up. So it's important to find someone who really knows what they are talking about.

    Just go as light as possible for your shoulders sake. and try out as many as you can. some places will let you take home a chair to try it out for a while before you order it.

    Best of luck and if you have questions at all that you think I might be able to answer--please feel free to ask. And rest up from your EDS hangover.