Monday, November 29, 2010

dependant, fatigued, helpless....ick, this is me?

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.


wendryn said...

Sounds like the fatigue is a lot worse. I'm glad the pain isn't as bad, at least!

Take care of yourself, first and foremost. I'll read when you are here, and I'll be emailing and writing even if you don't have the energy to blog.


cheryl g said...

It is important for you to rest when you need to. If you have to be silent and still for longer periods then that is what you should do. I'll still be here, listening, lending my strength, doing what needs doing.

Raccoon said...

I've been expecting the daily blogging take a dive for a while now.

The important thing is that you are NDY. Everything else is negotiable.

And, just to point out the obvious, I'm still here.

Now, what's this about Linda being sick?

Anonymous said...

Mate. This blog is amazing. How can I make it look this good ?

MrMumbles said...

Wow......I was just browsing through the Internet and random stuff when I came upon your blog. I am so sorry for you and I think that you are like superwoman for working so hard, I live in a family that does have shall we say 'mental issues' but like you they make the most of their time. I don't even know you but your blog has warmed my heart and I really wish I could help somehow.
I'm so glad to see that your married and that you are making the most of it and I hope that this little comment from me will brighten up your day.
Please stay awesome and strong!