When Nancy, the hospice chaplain, was here yesterday, our conversation ended up being largely about the things I do to try to make myself feel good. For example, she complimented me on my long polished fingernails, and I told her I like to keep them that way because it's good for morale. I mentioned to her that on Friday I am going out to get a pedicure (I can do my fingernails myself, but my toenails are quite another story), which is another morale booster, and she told me that she has been impressed with the way I seem to be able to focus on good things.
Before I got into hospice, when I was cycling in and out of the hospital, I was deeply depressed a lot of the time, a depression that really lifted when I became a hospice patient. I think a lot of it has to do with a feeling of control, that I am now making the decisions about what happens to me. I know that was true of my dad when he became a hospice patient (unfortunately far too late in the course of his illness, but that's another whole story)--he was a control freak who regained control of his life, and the change in his emotional state was amazing. There are few things that leave a person feeling more powerless than being a hospital patient, and I feel so deeply grateful that I don't have to deal with hospitals any more.
I try to structure my days so that there are as many enjoyable things as possible. Of course, this is easiest when I'm feeling comparatively strong, and difficult to impossible when I'm feeling lousy, but little things like my morning cup of tea and doing the crossword puzzle usually get the day off to a good start. Today I had a great visit from an old friend, Bob--we were trying to figure out how long it's been since we've seen each other, and it's probably somewhere between fifteen and twenty years! It's sad that it sometimes takes bad things to get people together, but it has been great hearing from so many old friends (the other day it was a phone call from my friend Tanya in California, another person I've been out of touch with for years--although mutual friends have kept us informed about major events in one another's lives). Bob said he'd like to come back soon with a tape recorder and interview me about some of the history and philosophy of the psychiatric survivor movement, which is something I love to talk about.
David Oaks (mindfreedom.org) was supposed to interview me last week (on tape) for his Internet radio show, but he had technical difficulties, so we will be doing that later this month instead (a joint interview with Dan Fisher, whom I worked with at the National Empowerment Center [power2u.org]). And Marianne, one of my Boston University Center for Psychiatric Rehabilitation (bu.edu/cpr) colleagues, will be here next month with some B.U. video people to do some interviewing as well. Still being able to function as an expert and away from my identity as a sick person is another thing that is very good for morale.
I mentioned to Marty today how lucky I am that, unlike so many people with fatal diseases, I am not dealing with pain. Until last July, when I had the radio frequency ablation procedure that totally ended the excruciating pain I'd been experiencing for the previous two years in my hips and knees (which was unrelated to my primary medical condition). So I know from personal experience how pain just totally shuts out awareness of just about everything else, and I am deeply grateful that it's not part of my current experience. Not being able to catch my breath is not fun, and it can be deeply scary, but (at least so far), if I stop doing whatever I'm doing, get into bed, and, if necessary, but on my bi-pap machine, my breathing eventually smoothes out. When I go to sleep at night, the first few minutes with the bi-pap feel so good; I can feel my body relax as my breathing becomes more deep and even, as the machine pushes air into my lungs.
Today my massage therapist, Lisa, was here for her weekly visit. We missed last week because she'd just had some wisdom teeth out, and when she was here the previous week I was still feeling very sick from that episode when I think I had a stomach virus or something, and she just sat on the bed and lightly rubbed my legs, but today she set up the massage table in the kitchen and did a lot of deeply relaxing work on my head, neck, shoulders, and chest, designed to make me feel more open and able to breathe more deeply, and I've been feeling the positive effects all day.
When Nancy left yesterday, she remarked on how much she enjoys our visits, and how much she feels she is learning from me! I'm looking forward to her next visit, as I can discuss things with her that are hard to bring up with many other people. All of the hospice people I've dealt with so far, Kathy, my nurse, Celeste, the social worker, and Nancy, have provided such a deep level of comfort and support, and have always answered all my questions with honesty and respect. If only the mental health system could work that way!