Most of the time, when people tell me how "brave" I'm being, my response is that while I certainly didn't choose to be in this predicament, at this point I have only two choices, I can choose to be miserable or I can choose not to be miserable, and I choose not to be miserable. But yesterday was one of those days when I felt totally miserable.
It all started when I got up to go to the bathroom, which is only a few steps away from my bedroom. Usually I can negotiate this without too much difficulty, but on Sunday morning it just knocked me out and I barely made it back to bed, gasping for breath. When I'm that weak, I can forestall the gasping if I remember to move in super slo-mo, but of course I don't realize I'm that weak my first time out of bed for the day.
As a result, I spent most of the day in bed, only venturing into the living room in the evening. I was feeling guilty for having Marty and others wait on me, and kept apologizing to him, to Julie, and to Florence (on the phone) for being such a burden and causing everyone so much trouble. I knew I was being a pill but was just feeling sorry for myself.
Probably the reason I was so tired is that Saturday was a busy and good day. In the morning, Julie took me to my hairdresser to have my hair cut. The same woman, JoAnne, has been cutting my hair for about four years, and she knows just how I like it. I hadn't been for a haircut in a long time and JoAnne commented on how long my hair had grown, and I told her to keep it long but to even it out and put lots of layers into it to encourage the natural curl. When I got home Marty was really pleased with how it looked joked that I shouldn't let my head touch the pillow for the next two weeks so it will look good for the party
Also on Saturday, Marty went to pick up his friend Donna and bring her here, with the purpose of them working together to reorganize a lot of things in the house to make it more convenient for all the changed circumstances--my needing a better set-up in the living room for my chair, and Marty needing things rearranged to meet his needs now that he's living here full time. Donna and Marty have been friends for many years and she's become a good friend of mine as well. I spent most of the rest of Saturday resting after my excursion, but in the evening I suggested we all go out to dinner (I had stayed dressed), and we went to a nearby Chinese restaurant.
Donna spent the night in the guestroom/office, where there is a day bed, and she and Marty worked all day Sunday, occasionally consulting me (for example, whether I would mind if they discarded by big office swivel chair, which is broken and therefore uncomfortable, which of course I didn't). I had called Judy to ask if she had time to spend with me on Sunday so Marty and Donna could work uninterrupted, but she wasn't available, and when she tried calling Diana, Patti, and Ann to see if any of them could come (in her new role as coordinator), she couldn't reach any of them. So I had to keep interrupting Marty when I needed anything, which contributed to my feelings of guilt and of being a burden.
Marty was concerned about needing to take Donna home, not wanting to leave me alone, but fortunately Caren called to ask if she could come spend some time with me, and I asked her if she could do it early in the evening, which worked out for her and solved the problem. I was beginning to feel a little stronger and asked Marty to get me settled in the living room before she came, so I got to see the results of the work he and Donna had done. They'd moved things around so that my chair, instead of being in the middle of everything, was arranged comfortably in a corner with a small table to one side, a lamp, and the rolling hospital table on the other side. I was very pleased with this arrangement, which also makes it easier for other people to sit with me, and not have to squeeze past me in the middle of the room.
I told Marty it would be all right if they left before Caren arrived, and she came shortly afterwards. We talked for awhile, and watched some of "Sixty Minutes," and by the time she was thinking about leaving Marty was back. I was feeling better than I had all day and told Marty that I was sorry about having been so difficult earlier, and he told me that no apologies were necessary and that he knew I wasn't creating problems on purpose.
Julie had been popping in and out all day, starting pretty early in the morning when I was feeling terrible. She made sure that I was taking the right medicines (starting with a nebulizer treatment and putting the bi-pap mask back on). She, Jim, Kyle, and Vivian were out for most of the day (Kyle had a Pokemon tournament and Viv and Jim went to a movie), but she called several times and came in again when they got back. She also got me a new computer, one of the tiny netbooks, but I'm not sure whether that's what I want so it's in the carton for now.
As often happens, late in the evening I was feeling better than I had all day, and we stayed up pretty late, and then I had trouble sleeping. But I feel pretty good right now--it's early morning. I'm just going to remember to go to the bathroom in slo-mo, just to be sure.