Thursday, November 19, 2009

So many ups and downs

I haven't posted anything for awhile, but there's been a lot going on. Yesterday was an unbelievably horrible day when even the slightest exertion left me gasping for five minutes or more until I could catch my breath. I spoke several times on the phone with both Louise and Lauren, and when I had taken all the meds they suggested and still wasn't feeling any better, Lauren said I shouldn't even try to get out of bed.

This exhaustion actually started the day before, Tuesday, when Marty was out and first Judy and then Patti were here. Judy went searching under the bed and found the shield for the book light, which was all the way over under Marty's side (we figure the cats had pushed it there), and both she and Patti did quite a lot of straightening up and putting things away. When Patti had to leave, Marty wasn't back yet, so I told her to put a note on the front door for the guy from the pharmacy, saying to be patient and someone would come eventually. Marty got home just a short while after Patti left, but then he went back out to the car to unload groceries and it was at just that moment that the bell rang. It rang several times and Marty still wasn't back so I decided I had to answer it and walked the short distance to the front door (I think it's about the same distance as from my chair to the bathroom). As I was opening the door my knees started to tremble uncontrollably, so the first thing I said to the poor deliveryman was "I'm going to fall." "I won't let you fall," he said, and he put out his arms to hold me up, and just then Marty came in and the two of them helped me back to my chair, but it was very scary. Marty said that when he walked into the living room and saw my chair empty he got worried, and his first thought when he saw the guy holding me was that he was attacking me, but he quickly figured out what was going on. When I told Lauren about it yesterday she explained that my brain was sending oxygen to my lungs and there was none left over for the muscles.

Yesterday there was two other brief periods when I was left alone, first between Patti and Nancie and then between Nancie and Marty. Because I wasn't supposed to get out of bed, I peed in the diaper, which for some reason leaked so everything got wet--my nightgown, robe, the sheets, the bed pad, and even the duvet cover, so when Nancie arrived she moved the chair into the hallway right outside the bedroom so I could sit while she got all the wet stuff off the bed and into the washing machine, and then made the bed. I have only one mattress pad, which wasn't out of the dryer by the time she had to leave, so today Ann will have to remake the bed with the pad, and we definitely need to have a second one.

I was so exhausted that I kept drifting in and out of sleep all day, but I got a pretty good night's sleep last night and as soon as I woke up I could tell I was feeling stronger. I was able to go to the bathroom by myself without getting too exhausted, and a little while ago I walked into the living room and got settled in my chair, which feels like a major accomplishment.

I haven't been out for awhile--I think the last time was last Friday, when we went out to dinner at the Brazilian barbecue place in Cambridge, which we enjoyed. Fortunately, it wasn't till after we had finished eating that Marty spotted a little mouse running around between the two buffet tables. We asked to speak to the manager, who was very apologetic, and said that they are constantly trying to keep the place clean, but all kinds of things can get brought in by suppliers. He said they have an exterminator come regularly, and he really sounded sincere and concerned, and asked what he could do to make it right. I suggested that he take "something off the bill," and when it came he had charged us for just one dinner instead of two. We will definitely go back there at some point since I don't believe the place is unsanitary and we really do like the food. Of course if we see something out of line a second time we'd have to reconsider.

Marty wanted me to come with him on Sunday when he went to a photography show in Cambridge featuring pictures taken by Palestinian teenagers from the refugee camp in Bethlehem, but I wasn't feeling up to it. Right now I can't even imagine feeling up to going out, but I know things change from day to day. We've been having a string of unseasonably warm days, which I wish I could take advantage of.

Plans are moving along for Thanksgiving dinner. Marty and Donna went shopping for all the non-perishables yesterday, and I ordered a turkey from Whole Foods, and checked with their bakery department that they will have plenty of pies so they don't need to be ordered in advance. Eating is one of the few things I can still really enjoy, and I'm planning for lots of leftovers so that Marty won't have to do much more than reheating for a few days to produce delicious lunches and dinners. But meanwhile there's lots that needs to be done, and I feel so frustrated that I can't do any of it, just direct others.


  1. Hi Judi. Thanks for your courage and your wisdom. Alan Feinberg says hi and told me to try to get in touch with you. My name is Sarah Knutson. I'm working at an "On Our Own" in Frederick County, MD, and Alan is one of our board members. I'm reading your book-- to which we our name-- for the first time. Written beautifully and powerfully. What a breath of fresh air, as well as a courageous declaration of our collective right to dignity, respect and independent personhood! I can only imagine the courage it took to so frankly and honestly express these ideas in the 1970s and 1980s. They remain radical & inspiring-though thankfully due to the work of so many kindred spirits somewhat less risky socially and professionally to espouse-- even today.

    Alan & I have been reading your blog. We're both intrigued and inspired by your suggestion that we should apply the hospice model to the mental health field and employ the same fundamental principles as hospice employs with persons who are nearing the end of their bodily lives in working with people who are nearing the end of their emotional ropes due to emotional, behavioral or spiritual suffering. We know your energy is extremely precious, but would love to learn more about your thoughts on applying on the hospice model to mental health should you be able to elaborate on this more in your blog or through trusted others in your life. We would also appreciate any guidance about how we should approach trying to communicate this message to the larger community.

    Thank you. Thank you. Thank you.

    Sincerely, Sarah Knutson, OOO-FC

  2. Hi Judi,
    Came by to say hello.
    Thinking of you lots.

  3. Hi Judi,
    I'm sorry to hear that you've been having hard days, but glad that you deal with them with such aplomb. Re: the mattress pad - you might want to consider a crib liner. It works for me when I have bladder spasm issues due to MS, and it is so much easier to clean than a big pad. Rarely is there 'collateral damage' to the rest of the bedding.

    Hope your Thanksgiving is a tasty one.

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