The stages of me standing and gradually moving to a wheelchair.
I wasn’t always in a wheelchair. I used to walk just fine, but as the disease progressed, I found it more difficult to keep doing the job at the hospital, which involved walking all day and helping patients with their meal orders. My twin sister was an RN at the same medical center and people had a difficult time telling us apart. We used to look identical, then we strayed from looking alike in our early 20s, and now we look exactly alike, except the only difference in our appearances is that I’m permanently in a wheelchair. That’s the only way people can tell us apart.
Anyway, I used to walk and do physical work and be able to lift 250lbs. Then, I had to go to a less physically demanding job which was working in an assisting living home with almost no lifting. Then, in 2021, after leaving the hospital, I had to go down to a desk job because use of my legs was becoming impossible. I would later be told by a neurosurgeon that the bones in the base of my spine are completely fused together, basically paralysing me, due to lack of strength and messing with the nerves.
The type of paralysis that I have is flaccid paraplegia, meaning that my lower motor neurons in my legs are completely damaged and can’t even be stimulated with electrical stimulation. I’ve had this disease since 2010 when I was 21. In 2017, I had to have a hysterectomy (at 27), two months before my 28th birthday, because it caused more issues after being paralysed.
(I’ll post a separate thread detailing the complications of paralysis and my reproductive system causing issues if you all want. Comment below if you want me to post that thread).
After full paralysis was established and officially confirmed in 2023 and what all was damaged, I began having bladder issues and Gastrointestinal issues. In March 2024, I woke up and realized that it was difficult to fully digest my food. I noticed this over the course of two weeks. I had suddenly relapsed and this caused bladder issues as well. Last year, I was told that my paralysis was becoming irreversible. I now have Botox injections to keep from losing control of my bladder which I go into the doctors office every 3 months to have that done. My bladder muscle is loose and no longer holds bodily fluids like a normal bladder function should do.
I miss how my body used to function before I became paralyzed. I gradually watched myself go from walking to limping, to using a cane to finally being in a wheelchair. However, since it was a gradual transition process, it gave me time to come to terms with it and accept it versus suddenly becoming paralysed and having to accept it immediately.
I will never have kids, it I have 3 nephews and 5 nieces and I feel like they are my kids sometimes.
I will have a shorter lifespan, but honestly, I am not here for long time— I am only here for a good time, meaning that I would rather have quality of life rather than quantity; a short life that is comfortable rather than a long life that is painful.
