Saturday, September 26, 2009

At last, a good day

Yesterday was awful. I had a sleepless night, so I was exhausted, but I couldn't nap and just started feeling worse and worse. On Thursday evening, I had gone to the bathroom, and had such a hard time getting back to bed that I was terrified of trying to get up. Although it's only a few steps, I just barely made it to the corner of the bed, where I sat, gasping, for several minutes before I was able to get fully back to bed.

So on Friday I just stayed in bed all day, not even trying to make it to the bathroom. Nancie was here, and she gave me a wonderful sponge bath (it was unseasonably hot on Thursday and I had gotten very sweaty). Then she rubbed me down with lotion, and when she was done I felt really good.

But in the evening things really deteriorated. I started having a weird feeling that I was unable to put into words--the best I could do was to say that I felt that everything was all scrambled inside my head, but I'm not sure if that conveys any sense of the experience. So I spent several hours in total misery. Julie put some of the haldol gel on my arm, and I took some morphine and some ativan, but it didn't change the feeling, and not being able to put it into words somehow made it worse.

I guess it was mostly exhaustion, because I slept very soundly and when I woke up that feeling was gone. So we decided that we could make it to the M-POWER ( picnic. Taking everything very slowly, I first tried to see if I could make it to the bathroom and back, which went well, so then I slowly got dressed. Marty brushed my hair for me. The weather was predicted to be a bit cooler, so I took a heavy sweater with me (which I needed when I was sitting in the shade, but in the sun it was delightful).

Hopkinton is the town where the Boston Marathon starts, and it was a lovely drive to the state park where the picnic was being held. There were about sixty or seventy people there, who have become involved in advocacy and were feeling strong and vocal. Just last week, a number of members had gone to the State House to testify in favor of three bills they are supporting: one that would strengthen the Five Fundamental Rights law that the organization worked on for many years, one that would create a commission to study the establishment of peer-run crisis services, and one that would establish a right to daily access to fresh air for people in psychiatric wards and hospitals.

They have decided to give an annual Judi Chamberlin award, of which I am the first recipient, and I was presented with a beautiful heavy blue glass pedestal topped with a large, free form silver star, as well as a necklace with a blue heart and a silver goddess figure. I spoke briefly, first about the parallels I have found between hospice and how we envision a helpful mental health system, with the patient at the center and the various helpers working to help the patient achieve his or her goals. Then I talked about the founding of M-POWER, and how there was agreement at the founding meeting on all the issues, but then everything almost fell apart over choosing a name. Some people wanted the words "mental illness," while others objected to the term, and similarly for "consumer," "survivor," and several other terms. While the voting and arguing was going on, I wrote down the word "empower" (which was strongly liked by almost everyone) and tried to see if I could come up with an acronym. When I suggested we call the organization M-POWER, standing for Massachusetts People/Patients Organizing for Wellness, Empowerment, and Rights, we finally had a name that everyone could agree with.

I've been resting since we got home, but I don't feel exhausted, just tired from the amount of exertion, and I'm hoping to get another good night's sleep tonight.

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