My new, skinnier wheelchair arrived last Monday, and boy does she make a difference. I can move myself from my bed all around the house. It takes energy, but it can be done!
Last Tuesday, I had another seizure. This time I was in the new wheelchair, reaching for my phone. When I couldn’t get my hand to go where I wanted, I realized a seizure was coming on. I had Reil rush me into my bed, where I shook it out. It was comforting to be able to recognize what was coming.
Over the weekend I took my first trip outside. We used the stair lift to get me down to street level through the garage, the wheelchair to the car, and then took a quick trip to McDonalds drive thru. Next time maybe a quick picnic at the park.
Food is a little hard for me. I’ve got dry mouth, and lots of foods don’t taste right or leave nasty after tastes. Sometimes I take a bite and that’s it, other times it’s all good. Never know. And the fact that some of the foods that I want to eat make my blood sugar even higher doesn’t help. Ugh.
I feel like each of my posts or days may be more full of self pity than the last. My brain seems a little more clear – when l’m not sleeping. But still not quite enough to rouse me into doing anything.
I feel trapped in my body. There’s not much strength. I can’t get around much without others – no autonomy.
I sat in my wheelchair in my room today, and organized a few things on the table which is too tall for me to use. My arms and hands might not be strong enough anyhow. But I got to see a different view for a little while. And there might be another table to use.
I think that next Friday I’ll receive a new chair which is not so wide and will go through my door, and give me access to the whole house. I wouldn’t feel so trapped.
Of course none of this matters if my body won’t stay awake. Or if I can’t find motivation, which somehow seem related.
Earlier this week I was trying to remember the exact reasons why I had gone into hospice. So I went back to read over my blog and found that I had forgotten going through radiation on my legs or my head. I couldn’t remember if my seizure came first or if going to see Wicked came first. These losses in my memory were scary and overwhelming.
But it’s scary and overwhelming as that may be it’s really quite understandable. I’ve been going through so much with each week or even part of the week bringing up some sort of crisis some sort of “one thing after another”. Between all that I was dealing with emotionally and then having drug interactions with my body I just couldn’t take anymore. At some point in April everything just crashed – body, mind, soul.
I shut down. I didn’t talk to anyone. I had thoughts of self harm. I cut off all my hair instead. I call them my black weeks – about two weeks of just feeling nothing, not able to cope with anything. I did have a lot of help with Reil and my family and hospice coming in daily.
I still don’t have a timeline really of when every thing happened but I know that after my black weeks I had a little bit of time and then had my cancerversary celebrating two years of my diagnosis. It was a very nice get together, though tiring.
Two nights after the party, I took fall at night when I was trying to go to the bathroom. That’s changed everything, because hospice and everyone wants me to have someone with me at all times. It’s been kind of a drag because I’m a person who likes to have a lot of time alone. However I also recognize I don’t have the strength to be walking around the house by myself or even to get to the toilet by myself.
My fall didn’t really hurt me except for a slightly pulled muscle in my back, however it did take most of my energy. I’ve spent most my time in bed trying to get energy back. It’s been a pretty boring journey since then but I am now able to walk into my living room but with help, it’s always with help. And those journeys into the living room also cost me a lot of energy. So I’m still working on it but I have faith that I’m going to have energy again and get it out of my bedroom more often and out of the house.
So that’s what’s been going on physically in my life. I have had a whole lot of emotional stuff going on too, but I’m finding that as I get stronger physically, Much of the emotional stuff is kind of working it’s way out and I’m very glad about that.