So, I had some developments last night. I was actually looking for a different blog post that talked about the day I got my chair from RIM and what Dave said to me when he was explaining my chair to me.
Since I didn’t find it to post, I will tell you what he said to me. I got my chair in July 2018 and as we were walking around the exercise area and he was explaining the joystick to me, he told me that these chairs are NOT designed to be slept in. But then he looked at me and said, but people do!” I understood what he was saying to me. But it was only yesterday night when I had to actually do that.
Waking up yesterday morning was difficult and it was the first time in my life that I actually cried in my bed trying to get out of it. Well, I have to be gotten out of it because I can’t control any of my muscles enough to get myself out of bed. I saw this post just after I wheeled into the living room and I still had tears in my eyes:
I told my Mom yesterday morning that I was going to sleep in my chair that night (yesterday). She said, “No!” I just looked at her and told her that it hurts too much! She didn’t like hearing that but I had already made up my mind because it REALLY hurt a lot!!! TOO MUCH at this point!
so, that is what I did last night much to her chagrin but that’s what needed to happen! I will message my neurologist and talk about progression of my disease but this is pretty much how it is now. This morning, my Mom had to run an errand and I was still sleeping and she was going to leave me in my chair . I told her, “Don’t worry so much about ‘supposed to’!”
That is a line from a movie we have seen together 1 million times. It came out when I was 16. Judi Dench is in it and she is the one who says that to her grandson. I know that I am ‘not supposed to’ sleep in a bed at night but I told her to not worry about supposed to because that’s not how it is anymore…. Regretfully.