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Hi Sean, I think you are accurate. I’ve been wheeling for only three weeks and those first time are still thrilling but I am much more interested in my feelings, my encounters with others, how to share about my BIID and how to convey to people that using a wheelchair is totally OK with me and with plenty of others. That we don’t want pity, that we want help only if we ask for it and that we are just plain human. I am interested in how much more real I feel, how much more alive, how much more myself. The chair itself becomes just a means, not the end. Like Prozac is just a means to being happier, so is the chair.
I am fascinated that when I dream now I am usually in a wheelchair. It never happened before I was wheeling.
Oh, by the way, I told my husband that I want to continue wheeling, that I feel more alive and real like that. He was fine with it.

Yes, so many things just become a part of one’s daily routine and no longer occupy any brainspace. I’m still very interested in reading about other people’s wheeling experiences though.

As Elisabeth says, the chair is just a means. It surprises me how deep things get when the initial excitement starts to wear off.

Yes, quite right. It’s fun at the start – like getting your first car, writing about the sensations, the joys, the obstacles, the crashes, etc. After a little while it becomes banal. That is until you get your GT model or something rather spectacular happens.

I would have to agree, writing about what is deemed to be a normal every day experience in our minds is hard once we’ve made that move. It’s like anything else on this website, it’s easier to write about the “bad” stuff.

Elisabeth, you said it perfectly. And Chloe, once the condition is treated by the chair, then we are open to our internal needs. We can see the work to be done, and start in on it.

Questions to the full-time wheelers:

What are your feelings when you get up from the chair and walk, run, dance, stand, hop, jump, climb on your legs?

After weeks or years of wheeling, what are your feelings about the chair?

Or do you have no more feelings because it is part of everyday normality?

And have you tried out what happens when you live without wheeling for a day or a week or so?

Sean, you said that after three years the effect of the wheelchair had worn out some and BIID became stronger again. What is the experience of others about this?

And again a question to you, Sean (if you don’t mind): Do you think that without having got used to the wheelchair you would have reached the point of desperation or depression and need in which you are now just earlier?

Have you ever reached a barrier which you couldn’t overcome in/with your wheelchair, causing you real grief or frustration (and the thought: without the chair I would have been able to do it very simply)?

And again to all: Does the wheelchair also remind you constantly of your BIID? I mean I have times where I don’t think about BIID. I have even found out that sometimes I am nearly free of it, but as I am so much used to it, I fear the next intense phase and thus spoil the “free” time. So I will try not to let my time be overshadowed by the mere fear of the next attack.

And what do you all do when you have to go to the toilet, but no wheelchair accessible one is around???

I think we have all experienced these feelings each time we’bump it up a notch”, from first time private simulating to integrating it into regualar routines, perhaps going “public”, thence to full time for those who so desire/need to.

Naturally, we all experience some sort of buzz as we ramp it up. That buzz will fade and we get to the more serious meat and potatoes of what we are doing and why. I hope nobody despairs when the buzz fades into satisfaction, nor should they conclude that they were only after the buzz.

@Phil, you have some good questions there :) Let me try and answer them :)

What are your feelings when you get up from the chair and walk, run, dance, stand, hop, jump, climb on your legs?

It feels mostly unnatural. Not right. A bit like walking barefoot on gravel. You can do it, but you don’t want to do it long. And unlike walking on gravel, you cannot develop tougher feet.

After weeks or years of wheeling, what are your feelings about the chair?

The chair is the only thing that allows me to remain somewhat sane and balanced.

Or do you have no more feelings because it is part of everyday normality?

Using a wheelchair is part of every day normalty, yes, but it doesn’t stop me from enjoying using a chair.

And have you tried out what happens when you live without wheeling for a day or a week or so?

It doesn’t take very long for life to become even harder than it is. A bit like a fish out of water. Feeling nervous and jittery all the time.

Sean, you said that after three years the effect of the wheelchair had worn out some and BIID became stronger again. What is the experience of others about this?

I can’t answer for others :) Yes, after a while BIID came back strongly. But nowhere near as bad as I would be *without* the chair.

Do you think that without having got used to the wheelchair you would have reached the point of desperation or depression and need in which you are now just earlier?

I don’t believe I would still be alive had I not been able to use a wheelchair. Desperation would have overtaken me and I’d have killed myself. A long time ago.

Have you ever reached a barrier which you couldn’t overcome in/with your wheelchair, causing you real grief or frustration (and the thought: without the chair I would have been able to do it very simply)?

Some. Not so much for me, as for people I’m with. My use of a chair limits THEM to do stuff that requires good walking legs.

Does the wheelchair also remind you constantly of your BIID?

No, it does not. I don’t need the wheelchair to be constantly reminded of that!

And what do you all do when you have to go to the toilet, but no wheelchair accessible one is around?

I try to hold it. If I can’t, well, i’m in trouble. It has happened a few times where I ended up soiling myself.

I’ve skipped the reply from Sean to see what difference we have, if any.

What are your feelings when you get up from the chair and walk, run, dance, stand, hop, jump, climb on your legs?

I usually limp naturally, if not I pretend a limp. It’s horrible walking after hours of wheeling.

After weeks or years of wheeling, what are your feelings about the chair?

It was a bargain but I could do better. I still love it thought.

Or do you have no more feelings because it is part of everyday normality?

At the start it’s like everything new. It’s fun to try it out, like a new car. After a while it becomes a necessary utility.

And have you tried out what happens when you live without wheeling for a day or a week or so?

I become very irritable and agressive.

Have you ever reached a barrier which you couldn’t overcome in/with your wheelchair, causing you real grief or frustration (and the thought: without the chair I would have been able to do it very simply)?

No, but if I had it wouldn’t have stressed me. I’d rather be disabled and not be able to do certain things than be able-bodied and be able to do everything.

Does the wheelchair also remind you constantly of your BIID?

Not at all. When I’m riding the chair I forget about BIID. When I’m walking i think about BIID all the time.

And what do you all do when you have to go to the toilet, but no wheelchair accessible one is around?

It only happened once when i was in a park waiting for hubby to pick me up. I just let it go. It’s not healthy to bottle it up. I washed the cushion when we got home.

Dear Sean, dear Peter,

thank you for answering my questions and sharing your experience.

I use my wheelchair not very often. And when I get up from it, for some minutes I am glad that everything is so easy, and my legs feel liberated a bit, they have the need to move.

Another thing that is great about walking is that the pelvis is not so rigid and fixed, it can move and becomes flexible, and that makes energies run better (also sexual ones…).

But after a while my desire to sit in the wheelchair grows back very strong.

When I use my wheelchair, my legs disturb me more than when I walk. I feel my feet on the footrest and that makes me nervous. (Both legs should end after a quarter or third of the thigh.)

Strange.