Sunday, November 29, 2009


The past few days I've been experiencing a real sense of loss, triggered by constant reminders of how weak I have become and how there are an increasing number of things I can't do anymore. The result has been a growing sense of frustration and irritability. I have moments when I just want to pick up something and throw it against the wall, although I haven't actually gotten to that point.

Really simple things, like brushing my teeth, have become a major production. I don't have the energy to stand at the sink, and I like to brush my teeth immediately after eating, so Marty (or one of my PCAs) has to set me up with my electric toothbrush (with the toothpaste already on), a towel, an emesis basin (the little curved thing that hospice got for me), and a glass of water. I brush my teeth numerous times a day, and it is so annoying that I need so much help.

Another thing that happens when I get into one of these moods is not being able to sleep at night. Although I have been dozing off during the daytime quite easily, when the time comes to go to sleep for the night I just tense up and can't get to that point of pleasantly drifting off. Having dealt with sleep problems for most of my life, one of the things I have actually enjoyed during the past year is that most nights I do sleep easily and soundly, probably better sleep than I've gotten for most of my adult life.

I don't want to take any kind of heavy duty sleeping meds--I've been using a small dose of amitriptyline at bedtime for the past few years, which most nights seems to do the trick. As a lifelong insomniac I have learned not to worry about not sleeping--when I get tired enough I will sleep, and if I'm not sleeping I can read or watch TV or play around on the computer, which I did last night. I came into the living room at about three (Marty had been having trouble sleeping last night too, but once he finally got to sleep I wanted to let him get some badly needed rest) and I think did drift off for an hour or so.

The long walk from the bedroom to the living room is about as much as I can manage these days, and standing for more than a minute or two without hanging onto something is also becoming more difficult. This morning I went to turn on the living room radio to listen to Will Shortz on NPR; I thought I just had to hit the on button but somehow it had gotten reset and I had to stand in front of it and figure out which buttons to hit, and just barely made it back to my chair (about three steps away). It took me a few minutes to catch my breath from this major exertion, increasing my sense of frustration and leaving me, once again, wanting to smash something.

My general principle is to keep my emotions close to the surface, so I suppose one day I really will start throwing things (it would probably be a good idea to have a plan for something that would make a satisfying crash without doing any real damage).


  1. Judi, there is still so much you can do. Your story gives us hope. Your memories sustain us. We can laugh with you and cry with you and just be with you and that's a blessing. You inspire us. Long ago when I was struggling with healing from my own pain, I made a conscious decision about who would be my "family" and you became part of that family. To me, family are those who love you and who are loved by you. You give us love and receive our love and in that way make our lives so much better and so much richer. Thanks for all you do. Love, Pat Risser

  2. I can't even imagine how frustrating it would be to get tired from doing such things as standing at a sink to brush my teeth. I believe many of us take for granted the simple things we are able to do to help ourselves. I want to tell you that I am proud of you for not just giving up on yourself. I am glad that you still get out of bed and live your day to the best of your ability. You are still alive and have a purpose! Thanks for writing :)