Tag Archives: work

Stamina, or lack thereof

Mornings are when I function the best. I work better. I am more likely to leave the house. I am usually in a good mood.

Things have a tendency to change after lunch. At first I thought it was because of the heavy meals I was eating, but then I stopped eating heavy meals and was still pooped after lunch.

Then comes the question: To nap or not to nap? Usually I nap, but sometimes I don’t. Either way, by four o’clock I am spent for the day. Ready to take some prescription to head off the inevitable irritability. My brain is tired and my body doesn’t want to move.

And then everyone comes home.

That’s no way to spend a life, I think. I am spent before I get to be with the people I want most to be with.

And what have I left them with? No dinner. No clean house. No accomplishments to show them.

Only a tired, cranky shell who wants as little stimulation as she can get.

That’s no way to be a mom or a wife.

If only they could go to work and school while I’m sleeping at night, like real world elves.

They could come home and find me at my best, and, because they are elves, they would never be tired or need to sleep.

And we could frolic the way we used to.

It will be just like that split second years ago.

The joyous, resonant moment that I still base my “normal” on.




Uh Oh

I feel anxious.

I am making too many mistakes at my part time, work from home job, and I fear that the quality of my work overall is going downhill. I know that some of it has.

Maybe I’m just burned out.

I can’t apply “everyone makes mistakes” to myself because I don’t know where the line is between normal imperfection and cognitive malfunction.

I am scared that the people I do work for will get tired of dealing with all of the mistakes and will sever our relationship. That would make me very sad. I enjoy working with them.

This is the only part of my life that HD had not permeated. Everyone, everywhere, knows I have it, except for these people, because I just thought it would be nice to have a little pocket of normal.

But that pocket is being turned inside-out by my own questions and self-doubt.

Maybe I should tell them. At least they would realize that I can’t help the negligence.

Maybe they have googled me and read this blog, and we are keeping the secret from each other, to protect each other.

The sad fact is that, as I continue to work, the quality of my work will get poorer and poorer until I will have to stop. Unless I get an infusion of some sort of cure, that is definitely what is happening to my brain. It is tearing itself apart, or, rather, gumming itself together.

The other day, I went to my neurologist and after an hour of me telling him everything that was wrong with me, he concluded that I did not have chorea and thus implied that his work was done. He is a really nice guy, and I kind of wish that he had taken the time to validate the non-chorea deterioration I reported to him. Set aside the professionalism for a minute and say, you’re getting worse and it sucks. Maybe it is just too difficult for him to do that.

To wade in someone else’s pain.

For now I think I will take a day off from work and see if I bounce back.

It is no fun being scared about what you might not be able to do.

Especially if it is something you love.