Cognitive challenges and wheelchair use

river

I have two wheelchairs (electric and manual). I love them. They really help with energy conservation, muscle recovery, managing orthostatic intolerance, etc... As long as there is sufficient circulation space and no obstacles in the environment.

You see, my tolerance of cognitive exertion is much, much lower than my (already very low) tolerance of physical exertion. Spatial tasks and task sequencing are EXTREMELY hard for me, but these are things you have to be able to do to drive any kind of equipment.

Using a wheelchair helps with the physical exertion part, but if I have to do a 5-point turn to move my wheelchair, I will already have PEM by the time I've simply turned around. This leads to me often having to choose to walk instead of use my chair, because the amount of energy used by trying to maneuver the chair in a poorly designed space, is so much more than the energy used to walk the same distance.

I feel weird and guilty about this, because while its not my fault and I should be blaming inaccessible housing and urban planning, it's an experience so unique to our illness and indeed the way that ollness manifests for me specifically, that I feel like nobody will understand it and may judge my choices. Has anyone else had a similar experience?

orchidlily

Though I have not experienced the same scenario you are talking about @river, I definitely relate to your experience where something is meant to be an "aid" or assist me but it ironically ends up causing more cognitive exertion and the lesser of the two evils is to physically exert myself instead. I've also experienced the reverse/variations of this type issue as well.

It's that mismatch that can be jarring, where something that is believed to be of assistance to people with disabilities should just work and make life easier but it doesn't necessarily mean it does.

Me and my partner/carer continually struggle to use my shower chair as our rental has an extremely small shower so to use it involves more planning around how we need to do things and it means needing to spend longer in the shower. This means I now often resort to showering standing up so I can spend the least time in the shower. It's an imperfect and illogical reasoning behind this decision but it just feels like the slightly less PEM option available to me.

Dot

@river Someone said "Hey you're cheating!" to me when I was in a wheelchair at the zoo, and got out to go into the toilets.
It was a joke, but really highlighted the assumptions people make when they see you in a wheelchair.

But the wheelchair is just a tool (and one with limited use for you). It is important to make the most of the times it can be useful. I hope you can get over feeling judged.
If it helps, it helps, and hooray that others might look and learn the truth of it, and maybe even build a groundswell of demand for the structural changes we need in housing and urban planning.

(Look out for comments and reactions and, if you can, tell us and let us brainstorm some responses that might come in handy another time).