This has been a pretty hard couple of weeks. I’m having a really difficult time concentrating and putting words together to make sense.
At Molly’s graduation I asked Jacob why one of the kids in his class wasn’t in the choir. He looked at me like I was crazy because that kid was in his eighth grade class, not Molly’s. This morning I asked Reil for “scrambeggs.”
My words are not always coming out correctly. Luckily I can mostly make sense especially if people are patient.
I have a difficult time reading and writing. It takes a long time for me to put words together, whether writing or speaking.
On the physical side of things, my legs are weak and mostly can’t move on their own. I’ve been dozing most of the time and, in general, I need help moving around.
I currently have thrush in my mouth which makes eating and talking very painful.
I’m looking forward to Jacob coming home from Germany where he has been for almost two weeks.
That will round off my three major goals: Molly’s graduation, Jacob’s trip and missing my 30th class reunion.
My nurse wants me completely off my legs. This means no using the toilet or commode. Not being able to transfer outside. Only being able to get into me my wheelchair by means of a large lift which will take much of my room.
I’ll need diapers. And while I can picture myself sitting in my pee for most of the day, I can’t picture the same with my shit. And I have a hard time expecting those who have been caring for me to wipe my ass.
I’m worried about the cost of care, and how long I’ll need it. I’m not in any pain, which makes it all worse to me, since it feels like I’m just going to have to go through this longer.
Not that I want to die. I just don’t want to live like this.
I’m hoping to go to bed tonight and find some calm and clearness. I don’t see it.
I’m not very happy with the state I’m in. I’m still struggling with the food and mouth issues. I eat very little and my mouth tastes disgusting the rest of the time.
I tried walking more around the house, and I’m hoping that is the reason I haven’t been able to lift myself from the commode by myself this week. The lack of strength and independence frustrates and scares me. Taking steps backwards instead of forewords scares me.
I’ve also got a sore on my ass, and they haven’t yet gotten me anything to help with it. So that makes me even more cranky.