Friday, March 27, 2009

Lazy day

We didn't wake up till after nine, so the day seems to have gone by pretty fast. I was feeling strong enough to make my own breakfast, and eat it in the kitchen, and I did the same with lunch. I was also out of bed for awhile so Ann could put fresh sheets on the bed, and to help her put away things in the right places in the kitchen (a few things have departed for places unknown). She also did lots of laundry, including all the bedding Ted used, so that it's ready for Florence's arrival on Tuesday.

I've had some minor problems with diaphragm flutter during the day, and using the dragon image, along with trying to position myself so my chest is in as open a position as possible, has been helpful.

Kathy was here for her usual Friday visit, and found everything pretty much unchanged. When I first entered hospice, just about three months ago, I figured that by this time things would have declined much more than they have in actuality. I'm not sure if this is a good or bad thing--as I said the other day, I find myself somewhat envious of my old friend Isobel, who found out she had advanced cancer and was dead just a few weeks later, having enough time to gather old friends and say her goodbyes. I remain grateful that I'm not in pain, but this level of weakness is hard to deal with.

There's an article in the current New Yorker about solitary confinement as a form of torture; my friend Dorothy wrote an excellent letter (which she has circulated to a number of psychiatric survivor activists) drawing the parallel with psychiatric solitary confinement, which is called "seclusion" and promoted as a form of treatment. Why should solitary confinement be considered torture, quite rightly, when used on prisoners, but still be promoted as "treatment" for us? I'm very hopeful that the New Yorker will publish her letter.

I think the weather's going to be mild over the weekend and maybe we'll get out again.


  1. Hi Judi,

    It's hard having to deal with having a disease that is progrssive.

    Hard to come to terms with dying sooner than you want.

    Being in bed now since August has made me aware that I need to plan and organise visitors otherwise my illness becomes solitary confinement.

    Hope the weather is mild for you over the weekend here it is building up to be a wet weekend.

    Take care.

  2. Dear Judi,

    Been thinking of you. Feeling very proud to have helped edit an amazing book which has been published this week. 'This is Survivor Research' is many examples from the UK of mental health user/survivors thoughts about and examples of user controlled and user led research.

    Hope life is as comfortable as possible and I say hello to Marty who I met when I saw you both in Litchfield at that lovely retreat centre 'Wisdom House' Love, Mary