Wheels of Freedom

One of the hardest decisions I’ve ever made is to use a wheelchair. Most people, unless faced with this situation, would shrug it off and think it’s no big deal. I used to think about other people with EDS using a wheelchair in a very black and white way. The wheelchair allows them freedom – freedom to go further and for longer, but also freedom from pain and fatigue. What I didn’t think about were the constraints and judgement that come with this new found freedom.

My new wheels.

Firstly, no-one’s family want them to be disabled. If there is one thing that screams “disability”, it’s an electric wheelchair. But they also don’t want their loved one to be housebound. It’s not nice being stuck between the rock of disability and the hard place of being judged. It’s really hard to explain to family that your situation isn’t going to change just because you get a wheelchair, it just opens doors to being able to do more. Talking of doors…

There are also millions of practicalities that scare the crap out of me. Doors. How the hell do I get through manual push/pull doors in my chair without hurting myself or making holes in walls? I mean, one option is to carry a small wedge and get out the chair, wedge the door, drive through and then take the wedge out… But that’s a whole load of drawing attention to myself!! Also, every journey feels stressful. Are there dropped kerbs? Is the place I’m going accessible? How do I carry a basket at the supermarket? Can I even carry a handbag? How can I get this hunk of metal into the car if we want to go away at the weekend? It’s a nightmare. I think I’ll just stay in…

I’m glad I’ve got it. I’m just waiting for this sense of “freedom” to arrive… Right now, it just feels like fear. I know to someone reading this whose legs don’t work and who doesn’t have a choice about using a chair, I probably seem both really lucky and really ungrateful. I just hope that people realise that this isn’t like someone with an old, second hand car buying a brand new Mercedes and complaining that they can’t get in in silver, only slate grey. My legs can move and they work okay sometimes, but at other times they don’t work okay. They either won’t work in the sense that my ankles and hips pop out and I fall, or after (minimal) over-use, I am in unimaginable pain the next day and it spirals into a dark hole of pain and lack of sleep and depression and BLEGH. So I have the damn wheelchair. I just need to use it.

Ren x


3 thoughts on “Wheels of Freedom

  1. stillkeighs says:

    The sense of freedom comes with careful planning in my experience. Using a wheelchair has health implications for EDS patients just as walking too far does, it’s a tough decision and a really tricky balance between managing fatigue/pain and building strength. If a chair helps you be more active and go out more then it’s a great idea in my opinion. People do ask weird questions when you get up from a wheelchair, I aim for 30 paces (5mins standing) for every 10 mins I am pushed, but working up to more steps (leaving my husband pushing an empty wheelchair!) you have to do what’s best for your body at that moment. Xxx

    Liked by 1 person

    1. brokendownbody says:

      Oh totally. I find that more often than not, people get caught up on the implications though. I won’t be walking any less – I’ll just be able to get out on days where I normally wouldn’t be able to. I can even use the chair as a method of pacing. It means I can get more fresh air without beating my body up 🙂 Do you find your chair has helped you?


      1. stillkeighs says:

        Definitely a positive adaptation for me, helped me keep my job and also keep my fitness up. I started accessing groups for wheelchair users like adapted cycling and more recently wheelchair dance that increase my fitness and reduce the impact of EDS on my body. Initially using a wheelchair also reduced the frequency of my falls and allowed my poor wrists to heal up so I could actually start some physio on them (they were permanently sprained from falling with crutches). I am using it less and less at the moment as I recover from leg surgery (and learn more about pacing). But I refuse to give up my job and going for coffee with friends just because I can’t walk sometimes. You do whatever you have to do so that you can enjoy your life! x

        Liked by 1 person

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