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I need to move
Written by Claire on Monday, April 28, 2008
It’s weird. My body needs to move. I want to go for a long walk and enjoy the spring sunshine. I want to go on a hike and explore a forest. I want to ride a bike. To ski. To run up the stairs, two at a time. Dance. I want to move.
The only time I move now is on wheels. And then it’s only my upper body that moves. And it’s not the same. My legs have undergone months of forced inactivity. They still walk, slowly. They don’t run. They don’t exercise, or show strength.
I am craving activity. Not in my chair. On two legs. Able-bodied. My whole body.
The only reason that I can’t is that I have painted myself into this corner. I did it on purpose because I needed NOT to use my legs. I needed to have no choice in the matter. Needed to need my chair. I still need my chair. I still need to not be able to walk.
But my body is SCREAMING to move. It’s created an awful dichotomy in which my BIID is at war with other basic instincts.
Going back. It’s a horrid thing to contemplate. I can go back. Kind of. I can’t just return to being able bodied and life will be perfect. I can return to being able bodied and then deny myself the comfort of my chair when the BIID hits hard. Not to mention the explaining I’d have to do when I thought I was almost done having to explain things. It’s a horrible choice to have to make. I have gone to hell and back making this happen for myself, using my chair openly in my real life. I’m there now. Too much blood, sweat and tears shed to throw this away.
But I need to move! How to reconcile this need for the chair with the need to move?
I wonder if paras go through this. Do they feel this horrible need to move their body and are totally unable to? It must be awful. I can, at least. I can, but not without great cost. Not without denying myself the only comfort available to me when the BIID hits hard. It’s not much of a choice.
It’s absurd, really. In the beginning, I used to go on trips to places no one knows me in order to use my chair. Now I’m contemplating a trip to a place no one knows me in order to walk! But that would be cheating, wouldn’t it? What would the wheelers say? Ohhhh, they’d crucify me.
And why should I care what they say anyway? My BIID is what it is. This is what it is. It’s a war between my mind and my body and this is just one more manifestation of it. I’m always letting what people think get in the way of what I feel I need to do. But I do care, and it’s not a feeling I can just shut off.
I’m thinking of something like Multiple Sclerosis that can go into remission and the person can start walking again. Is what I’m experiencing that much different?
For now I guess I’ll try to be more active in my chair, get more strenuous exercise and see if this thirst to move slakes somewhat. I’ll keep you posted.
Tags: BIID, Exercise, Moving, Walking, Wheelchair, Wheeling
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6 Comments
Do you have access to a gym? Some of them have machines that will work your upper body to get your heart rate up, without damaging your shoulders.
Could you have enough mobility to use a recumbent exercise bike?
Do you know anyone who has a tandem bike?
And stretching is always good, too.
But I know what you mean. You want to move. Your body wants to move. This is the time of year when it wants to wake up.
3 On 28 April, 2008, jocelyn said:
I agree with Ahiru - I’m a T8 para and I have some sensation in my hips and thighs - the spasticity and the inactivity makes me ache like crazy. I think you have to take a pragmatic view of it and retain whatever works for as long as possible - para or not, inflicting pain on yourself by not keeping what you’ve got is crazy.
but - there are lots of ways to do it passively if you need to. There is of course the negotiation of how long, and what to do… nobody wants to spend all of their time on stretching, etc., so there’s always a limit to what people have patience for.
You could try a form of passive exercise bike - like the one in this video: http://www.youtube.com/watch?v=e83hhkObTjY
Otherwise, swimming is always good, I do a sort of adaptive yoga. Wheelchair sports are great - though I’ve never walked so I couldn’t tell you whether that would “Scratch the itch” of moving your legs - but it sure does it for me.
I have to echo what others are saying, you can still move and be true to your ideal body type. As I was reading this I was thinking of a passive exercise bike. Also, while it wouldn’t solve the issue of motion you could always try some sort of electronic muscle stimulator to at least relieve some of your pain and frustration.
5 On 30 April, 2008, Sean said:
I don’t “read” the needing to move in quite the same way. My body does that, it insists on moving. Not because I don’t exercise or anything. Heck, I’m at the gym more often than not during a week, and I play (wheelchair) sports.
It’s not about exercising the legs. It’s just that the body takes over and insists on moving.
Very well said. I think this illustrates what one will have live with/live without should they beocme disabled. Dealing with the desire to be once again able bodied…..hmmmn.
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1 On 28 April, 2008, Ahiru said:
You could always try doing range of motion exercises like paras and quads do, although you wouldn’t be doing it for the same reason they do it would be getting the blood and muscles working. You wouldn’t have to move your legs on their own.