So about a year ago, I was diagnosed with EDS. It took a long time to get a diagnosis because of the myth that only people who are not overweight can have EDS. I am overweight because I have PCOS. EDS is a connective tissue disorder that causes hyper mobility, stretchy skin, unexplained injuries (my specialty), etc.
So anyway, this past weekend, my sister and I took Roo to Disney Hollywood Studios in Orlando for his bar mitzvah. We all had a blast. I was in the middle of an EDS flare up so I was using my crutches and the electric cart they call the electric convince vehicle. This made me hyper aware of how my mobility was headed.
The doctors and other peers with EDS, IE other autistic advocates who made me aware of my EDS ness and caused me to get evaluated, told me this could be a real reality and I needed to watch my pain. I am the type of person who does not like to take anything for pain because I am afraid it will leave me unable to function as I have a large family depending on me. Today Emma suggested naproxen and it was a game changer. I was still in pain BUT I was able to work. Yay me!
Ok I digress. So the Disney trip made me realize that I do need a wheelchair for longer outings. This made me super depressed because I did not think I needed one. I can still walk, why do I need a wheelchair? Then when I try to walk when I am in extreme pain, I can barely move and want to fall over and cry.
I made the decision to contact a local organization. They provide durable medical equipment for people who it road blocks with medicaid. Those with Florida Medicaid know what road blocks I am talking about. I called them before work and we set a time for me to come after work. I filled out a form and they helped me put the chair in my car.
The whole way home I kept on thinking, do I really need this? What if I am keeping this from someone who really needs this?
I spoke to a few of my friends who have EDS and one hit it on the head:I know how that feels.
“It’s a battle with our internalised ableism and the views we have about what a chair means. It took me a long time to accept that I needed mine. But I’m so very very grateful for it now. It sucks that to get what I need I have to fundraise when I need a new one, but at the same time without my chair I would be stuck in and unable to do so much”
I need to work towards acceptance of this. I have planned on personalizing it so its not boring so that may help. I will post photos when done. I don’t have a longer outing scheduled until next month. We will be going to Super Con again. Should be fun.