I own a cane, rollator walker, manual wheelchair, and recently became the owner of a power wheelchair and I’m not even 30 yet.
I went from having an invisible chronic illness to needing a wheelchair.
Having Lyme Disease plus co infections, Epstein Barr Virus, and mold toxicicity for almost a decade has turned into a full blown brain/movement disorder. The wheelchair is the best thing for me because walking is intense, painful and exhausting because of the uncontrollable movements. Since I can walk I make myself. I can’t push myself due to extreme chronic pain and fatigue which is why the power chair is the best thing for me when going out. The walker is usable but causes extra pain; if i’m using this i’m ill but am pushing myself.
Every time I leave the house I have to plan out what I’m doing and for how long to decide which assistive device I need.. If I’m driving to Sheetz for coffee I usually just go slow with my cane, but if I’m going to the mall or a store without scooters I need my wheelchair.
I can stand but have no balance, I can walk but I have a neurological disorder that causes uncontrollable jerking in my legs which causes walking to hurt and be very difficult.. and I look like i’m about to fall.. so yes sometimes I use my wheelchair because I don’t want people to see my legs jerking.. but I’m not always self conscious.
Sometimes I use my walker when I need my wheelchair because it’s easier to adapt to abled world. I can go up a curb or a couple steps.. but in my chair that is a lot harder. When i’m with healthy friends I usually choose my walker so they won’t have as much of a burden on them..
Yea I do feel like people don’t necessarily want me to come to things that are for abled people like concerts, bars.. etc.. because they want the freedom that comes with being a 20 something healthy person. I mean who doesn’t?
Hence I tend to push myself around healthy abled people; I use my walker or just my cane, walk faster, talk more etc until I completely crash.. nobody wants to be around for the crash.
It’s so hard to explain how you saw me yesterday with my cane and today I’m in a freaking power chair. That’s how i measure my good days.
It takes away more than you can understand to even just need a cane. Being able to storm off, being able to run into someones arms, skipping, catching up with your friends.. I’ve actually had people tell me “you don’t need that”. They are always bewildered by my condition.. it’s something you can’t understand without having experienced it.
Don’t ever think you can have any idea that’s the worst thing you can do.
I used to be able to walk, skip, jump, climb trees, etc. Now I need a walker to get around my house.
This turned into more of a sad inside look into the life of having ambulatory disability instead of a story.
Honestly it’s because I have lost yet another wave of friends due to the fact that I just can’t keep up.
This is why I post about my disabled adventures. We can’t let them keep us from living. Go to concerts and get there early and snag a front row spot, enjoy festivals, the mall, hell go to a club!
People are made uncomfortable by us so lets get some fun out of it!
Stop wondering will people be okay with me being there, and start caring if you’re having the most fun you can in life.
For those of us who can’t walk unassisted especially.. I think there is something better for us after this life. So just enjoy this time as much as you can, go out of the disability box!
(Just stay safe, and go with confidence!)
Finding Carly Again 