Saturday, November 21, 2009


I get so frustrated when people tell me I'm being "brave." I certainly don't feel brave. I feel so useless most of the time, unable to do the simplest things without help. The only thing that still seems to work--at least sometimes--at my old level is my brain. But even there, I don't seem to have the patience, or the stamina, or whatever, to do any sustained work.

The tiredness, the fatigue, is so overwhelming. If I close my eyes, I can feel myself drifting off towards sleep. And sleep is a good thing. Last night, making up for a night of poor sleep the night before, I think I slept for more than ten hours. And it was good that Marty got a pretty good night's sleep, too. So the day got a late start; I didn't have breakfast till about ten, and I had a late lunch in mid-afternoon. Food continues to be pleasurable, anyway.

Meanwhile, I have to deal with important decisions, like whether to rent out the upstairs or turn the building into two condos. I get so worried about running out of money. I really didn't think I'd live this long, and although the general trend is definitely downward, it is really, really slow, and I'm so afraid I could linger on like this for awhile, just watching my money dwindle and getting weaker and weaker.

I hate this damn disease!


  1. Hi Judi,
    It is a shitty disease you have and I understand how annoying and frustrating it is being brave.
    Thinking of you.

  2. then stop taking the meds which are prolonging your life if you really are at peace with dying. you take allergy meds and the like but you have a terminal disease... if what you truly want is to die in peace then stop taking life prolonging meds.