6 August 2013
Another day here in the facility. I find it amazing how sometimes just the little things can make the biggest changes, must be a sign that I am slowly becoming acclimated to living life under these circumstances. There has been yet another time when a staff member has still determined what I can do according to everyone else's abilities. I was encouraged - badgered more likely to get out of bed and into the wheelchair for some change of pace. I indicated that due to the wheelchair being so cramped ( I don't have an adjustable back nor are the leg supports adjustable, so my legs are in one bent position) I can only stand being in the wheelchair for wabout three hors before I begin to get so pain ridden that I can no longer stand to be in the chair.
She told me that since it was near ten in the morning she would make sure to help get me to bed before her shift was done at two. I indicated that me usual time limit was closer to one. Okay.
I got up into the wheelchair and made my usual rounds throughout the building. As the time grew closer to one o'clock I made my way to the third floor where my room is. As per usual every CENA on that floor went about their business able to look right past me as if I were invisible. This went on for nearly an hour as I sat outside my room trying to become obvious. Finally the morning's CENA stopped by and thought I was readyto bargain with her. She asked very nicely if she could go take her break now and then put me in my bed when she got back in fifteen minutes. I could tell that she had her heart set on collecting her break, it did not mater how much pain I was in. finally I told her to go I would probably fall asleep in my chair.
I was awakened by her rubbing my shoulders upon her return. By now I was so painful and tired I could not use the slide board to ease myself into bed from the chair, I had to be lifted with the easy stand.
Many people don't realize all of the effects that go along with MS. Not only can I not stand or walk, I have lost the control of most of the muscles from my sternum down. I can't do a sit up, I have no psoas control, no adductors, no obliques. I can be sat up in beed but I require my hands to stabilize me. I also become very tired if I push myself too much. It has taken a while to learn my new limits. It only takes once or twice to realize that while I am awake nd functioning in the wheelchair, once I have reached my limit, anything after that means lots of nap time when I do return to bed.this means when I say I need to plan on being out of the chair sand in bed by three hours, that does not mean try to get me to agree to even more time when you want to take your break.
Once I was back in bed I slept for the rest of the day, the whole of the night and most of the next day. I was very tired and there was not much I could do to wake up. There are some times that I become very tired and it most often follows too much physical activity.
There are times when I grow highly insulted being treated just like everyone else because I live in the same facility and its easier to make upon minimal set of rules for everyone.
As a result of my sleeping the next day, I was allowed to sleep right through my scheduled shower the next day. Apparently it must be alright to let residents skip a shower once in a while, no need to wake them and ask them, let 'em live in their own filth, won't bother anyone else.
Thats the part I was worried about, being reduced to the lowest common denominator. Being warehoused in the best way possible, to dehumanize everyone to the least amount of humanity available.