I narrate the medical aspects of this blog, in general, to give others a picture of what occurs: the hundreds of tests, the strange conversations, the interaction of the medical system, neurological and chronic aspects. I’ve not wanted to turn this into the equivalent of the Weather Network of my Health (“There is a fatigue storm front coming down from the decision to sort my tuba collection yesterday and will likely be staying for several days”).
The difficulty is that my not so great health affects me more and more and there are days, strung together where I ‘deal’ with stuff and then just sit or lie there recovering. And since a blog post takes focus and energy and about 4 hours, that is challenging me. Am I worse? Since I don’t remember a lot, I don’t know. In THIS now, I am worse with a lot of fatigue, but also (due to the patch) less pain. I am hoping this isn’t the time where I sit still and try to survive, going dark often in communication. But since right now I just don’t have the energy or rebound to be able to comment or write back, that is how it seems to be (solutions, anyone?). For example, it has been a while (many weeks?) since I am able to read the mail that comes for me, as my voice gives out, and it fatigues the brain so much to access the verbal links. So I lie or lean back while it is read to me. Maybe this isn’t how you want to think of me, I know it is not how I like to think of myself. That is not saying I don’t love getting post, I do, I just run out of lung and diaphragm strength to read it aloud.
I’m not dead, I’m hanging in there and hoping for good days to finish the blog post I have 2/3rds done. But as Linda getting very ill yesterday demonstrated, the amount I can care for myself is extremely limited at this point. Tasks I can do by myself: go to bathroom (sometimes even get off toilet), recline and breathe (most of the time, except the breathing needs help), put DVD into computer and push play, type a little, pick up a drink bottle (about 70% of the day, and most days, but some days need help with that), eat if food is brought to me, read (except when one eye is wonky or both, or the material is too difficult).
I get 1-3 hours twice a day when I have higher energy, then it all goes. If I did something hard and strenuous that morning or the day before or the day before that, then it will just be low energy (head-rest, and arm supports). Thursday I woke LATE to go to boxing so I could do 100 push ups and 125 sit ups, and heavy bag work. I sweated. It was first time in two weeks I was strong enough to go to boxing.
I’m not ready for this ride to come to a full and complete stop, but it sure does seem to be slowing down. I guess the blogging daily thing is out.
1 day ago