The Chronic Illness Files

The Annoying Challenges of Being Wheelchair Dependent (Part One)

This post is opinion based, not censored, and is a reflection of my personal journey.

I have Dysautonomia and Periodic Paralysis that force me to be wheelchair dependent; however, there are rare days when I can stand and walk a few steps. I haven’t always been wheelchair dependent, and therefore know what it is like to live both lifestyles. Anyways, here are some of the annoying challenges of being wheelchair dependent.

The Annoying Challenges of Being Wheelchair Dependent (Part One)

Running into Everything

I have used the same electric wheelchair, driving around in the same home for years, but I still run into everything. I truly think there is a scratch, scrape, or dent on every wall, door frame, door, wooden piece of furniture, bookshelf, or person in my house. TRUTH. The only two things I haven’t hit are my cats.

My design style is colorful, clean, and ridiculously organized; however, all of the scratches and dents don’t really match that style… or anyone’s style who isn’t preparing to tear their house down.

That Look You get from Strangers

You know the one. That ‘what’s wrong with that person?’ ‘why does she need a wheelchair?’ ‘he just stood so he’s obviously faking it’ look that you get from total strangers. Sometimes, accompanied by judgmental whispering that isn’t as quiet as that person thinks it is, as they stand five feet away.

It’s like ‘Crikey there’s an animal you don’t see in the wild every day, better tread lightly around that one!’ and I’m all like ‘calm down Steve Irwin, I am a human… in a chair… with wheels.’ What is wrong with people? If you do that, please stop.

The Constant Need to Keep Your Wheelchair Charged

This only applies for electric wheelchairs, but it’s sooooo annoying.

Ever been in the middle of a state fair with dead legs and a dead wheelchair battery? I have and it wasn’t fun. Always pack your charger, or you too could be stuck in the middle of a sweaty crowd broken down on hot asphalt in the sunny 92 degree heat with the smell of horse stables and fried food lingering in the air as a cloud of embarrassment causes you to feel as if you might actually be melting into your chair. I’m just saying that forgetting to charge your chair before going out on an adventure could ruin your day.

Public Restrooms

Seriously, I think I could go on an hour-long rant about my hatred for public restrooms. I could write an entire book about my hatred of public restrooms. I hate public restrooms. It’s a three part issue for me…

Grievance One: People. Why is the handicapped stall always taken? Do you walking people really think you need extra space and a hand rail just to take a dump? You don’t. Get out and use one of the smaller stalls, so that I don’t have to sit here doing kegel exercises to hold in my pee while I watch everyone else come in and out of the restroom.

Grievance Two: The Actual Handicap Stall. No. No. No. No. No. No. No. Why is the handicapped stall so small? I can’t fit my wheelchair in this stall. One foot of extra space beside the toilet is not enough space to fit my wheelchair. Great. Now I have to transfer from the chair to the toilet with the stall door open so everyone can see my business. That has happened to me more times than I would like to admit and it is so degrading.

Also, why is the toilet paper so low to the ground? I am handicapped. What if I bend over to reach the toilet paper and fall? That could totally happen. Would you make your grandma with stability issues bend to the ground, risking injury just to wipe her fanny? No. No you would not.

Grievance Three: The Rest of the Restroom. The soap is out of reach. You have to stretch to get to the sink. Unless there is a full length mirror, forget being able to check your hair, since it is too high to see. After washing your hands the water drips onto your lap, so when you get out of the restroom it looks like you just peed yourself. Not a good look. Then you have to get through the (more than likely) non-handicapped door without touching the handle, because germs. You know everyone uses a paper towel to touch the door handle, but balancing the handle in one hand and a wheel in the other or just fighting to prop the door open so you can get your wheelchair through is tough. The easiest way is to back out, but you may not have the ability to also look behind you to see if someone is coming. Let’s say that person coming in is too involved in their cellphone and didn’t see you coming then BAM there’s a crash. Mortified. You will feel mortified; at least I did.

Maybe one day there will be restroom fairies to come help.

Having Multiple Wheelchairs

Personally, I need an electric chair for the house and a small folding chair in the back of the car (mom’s car) for short outings.

In general, there are chairs for outdoor use vs indoor use (like taking off your shoes when you come home), large wheels you use to push yourself, small wheels that require someone else to push you, lightweight folding chairs, electric chairs, electric scooters, walkers, etc. Don’t even get me started on accessories like a pillow to sit on, seatbelts (to hold me when I faint), the foot rest attachments, mobile ramps, lifts, and so so so many more. Where is all of this stuff supposed to go? Each of these wheelchairs need somewhere to park. When I first started to really need a wheelchair, my dad went overboard on purchasing used wheelchairs for me to try. I ended up having five wheelchairs at one time. It was crazy. Our spare room honestly looked like a sad parking lot.

Okay, I told myself that I would keep this list to five; however, this was somehow therapeutic and I have so many so so so many other things that could be on this list. Stay tuned for the next addition of “The Annoying Challenges of Being Wheelchair Dependent.”

Thanks for reading!

If you are wheelchair dependent and have something that annoys you, feel free to share in the comments. Able bodied people are also welcome to share their thoughts.

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