Which comes first...

...the chicken (feeling better and stronger) or the egg (improved mood)? I woke up this morning around seven, Marty was still sleeping, and I got up and made myself a cup of tea and some cinnamon raisin toast. There were clean dishes in the dishwasher, which I figured Ann would take care of when she arrived, along with doing some laundry and making up Florence's bed, but then she called and said she had a bad cold, so it would be a very bad idea for her to be around me.

Another thing I had planned while she was here was to take a shower, so she could comb my freshly washed hair; it's been a long time (I don't want to think about how long) since I've had a shower. But I did take one in the late morning; it made me out of breath but I recovered rather quickly, and then I went and sat in the kitchen so Marty could comb out my long hair. It feels great to be clean!

Marty went out to a meeting around lunch time, once I assured him I could take care of my own lunch, and I also emptied the dishwasher and loaded it with the dishes that had accumulated in the sink. Florence's train is due in a bit after six; Julie will be picking her up and I expect her around seven. We talked before she left and I asked if she would be hungry when she got here; she said she will eat a big lunch before she leaves and has a sandwich for the train, so Marty will pick up some Chinese food for us for dinner and Florence can eat as much or as little as she wants. I know what I want--my usual Singapore noodles!

Myra and I had a really nice visit yesterday, which really perked me up. Although we've known each other for well over twenty years, yesterday was probably the most time we've ever spent together just talking about ourselves and our lives. She also brought me another CD, this one on which she plays harp and a friend plays flute--she thinks Lisa and I will find it even more enjoyable than the solo harp CD to accompany our massage sessions. Myra's CDs can be viewed and ordered at http://myrakovary.com/

Today the sun is shining...one more thing that improves my mood. In a few hours, Florence will be here.

Ups and downs

It's been a very up and down day. I'm feeling a little stronger than over the weekend and have been out of bed a little. A few hours ago, though, I suddenly got probably the worst sinus headache I've ever had--starting with pressure in my nose like before a sneeze, but no sneeze came, and the pressure just kept intensifying, and then I got intense pressure in my temples, too. It was so bad I was almost in tears. I called hospice and spoke with one of the nurses, who suggested I take tylenol and morphine, and in a little while it eased up. I don't usually get sinus headaches, for which I'm very grateful.

Marty is out again, but in a little while I'm expecting my friend Myra, who lives in Ithaca but is in the Boston area for a few days. I've been enjoying her beautiful harp music on the CD she sent me, and it will be good to see her in person.

One of the things that I've needed to take care of, but have been putting off, is prepaid cremation, so today I did a little Web surfing and found several local places, which I will ask Julie to look over and compare so we can make a decision. I've never liked the whole idea of burial and cemeteries; so cremation has always made sense to me. I'm not sure that Marty is completely comfortable with the idea but I also think he's reconciled to it. Julie and Jim and the kids scattered Daddy's ashes a few years ago (along with my friend Rae's, whose ashes I ended up with for some reason), and I know she'll do the same with mine when the time comes.

Something I keep obsessing about, and have brought up with Marty repeatedly, is what might happen if I am semi-conscious and unable to communicate. He has promised me that he will hold my hand and touch me and talk to me, and that he will have other people who might be there do the same thing. I have read that people in comatose states can hear and sense what is going on around them, and I want to make sure that if I am able to hear or sense anything, that people will be communicating with me.

A rotten weekend

The weather is rotten, and I feel awful. Marty was at a conference all day yesterday and most of today, and I was alone. This morning after he left I just went back to sleep and slept most of the morning, and didn't have my breakfast until after one. I think yesterday I was a little stronger than today; at least I was able to spend a little time out of bed.

Julie spent an hour or two yesterday getting the guest room/office ready for Florence, who is arriving on Tuesday. The desk has been piled high with lots of paper, most of which can probably be thrown away (at least I hope it was stuff that can be thrown away). Anyway, when I took a look in there last night the desk was clear for the first time in I don't know how long.

I feel so discouraged today. I'm exhausted, my chest hurts...everything is going downhill, only very, very slowly. Maybe I'll feel a little bit more upbeat when Florence is here--she and I are always quipping and playing word games and being silly. One of the reasons Marty and I get along so well is that he loves wordplay too.

I haven't been able to find anyone to take me to acupuncture tomorrow (Marty has a meeting he really wants to go to, and since he has rearranged his schedule for me so many times, I can't very well ask him to skip something that's important to him). But I'm not sure I will feel strong enough to go out in any case.

A lot of people who read this blog are in other cities, even other countries, but Marty suggested that I ask local readers if they have some times when he has to be out that they can cover for him or take me to appointments. If you think you might be able to help, please e-mail Marty directly at MRFederman@earthlink.net, with the subject line "Judi's calendar." There have been so many times that Marty has not gone to things important to him, because of me; I think it is important to any caregiver that they have time for themselves. My father was a hospice volunteer for many years, and he told me that the first thing he would tell the caregivers when he arrived at a patient's home is that they should leave and take some time for themselves.

All this would be unnecessary if I were to go stay in the hospice house, but there are many reasons I don't want to do that (the cost among them). I still feel most comfortable in my own home and hope I can stay here until the end.

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.

A better day

Thursday is the day Lisa comes and gives me a massage, which I always look forward to. For the last few days, I've been having a very unpleasant new symptom; my diaphragm starts to spasm and flutter, making it even harder to breathe. I told Lisa about it and she said she would concentrate on trying to open up the area. She always starts by placing her hands lightly on me and talking about what we will try to accomplish. It creates a very calming atmosphere, along with the soft music (we're using Myra's lovely harp CD).

As she was gently stretching my upper body, I had a very clear vision of my diaphragm as an angry dragon, and what Lisa was doing as gently luring it back to its cave. I told Lisa about it and she found it a very interesting image to work with, opening up a space for the dragon to be comfortable in its lair and not intrude into "my" space. In any case, there's been a lot less of that spasming the rest of the day, making me a lot more comfortable.

It was a cloudy day, but quite mild, and Marty thought it would be a good idea for us to go out, so he helped me get dressed and we drove to a mall in Chestnut Hill where there were some more spring floral displays. I rode around in my scooter and we admired some mini-gardens, but I got tired rather quickly and we headed home. I had a MindFreedom board teleconference that started at 6:30, and we got home just in time for me to call in.

Ann will be here tomorrow and I will have her do a lot of laundry--fresh sheets for my bed, and all the bedding that Ted used so it will be ready for Florence when she arrives next week. I'm hoping we'll have good weather and I'll be able to get out to do a few fun things.

The bright side

Although still very weak, I'm definitely feeling better today than yesterday, which helps me to feel more positive. Another thing that's helping are the incredible e-mails I've been receiving from people whom I've met over the years, telling me what a difference my work has made in their lives. This fits so well with my idea of an afterlife--living on in the memories of people, and every e-mail or phone call I get from someone from my past shows me how many people will remember me after I'm gone.

Yesterday the doorbell rang while I was alone--I called upstairs and Julie got one of the kids to go down. Kyle came in with an enormous box from a florist--filled with alstromeria (one of my favorite flowers) and roses, sent from my friend Laura on the west coast (whose e-mail address I can't seem to find, so I hope she's reading this). Earlier in the day, Ann had thrown out most of the roses that I got when we went to the flower show last week, but she found some that were still good, and when Dorothy stopped by to take Ted to the airport, she brought a bunch of daffodils, so the house is still filled with flowers, which I love. The weather has turned cold again, making these reminders of spring especially welcome.

Marty is out running some errands so I'm here alone. There's chicken salad in the fridge for my lunch later, and maybe I'll be able to take a nap (I was awake a good part of the night, for some reason). I feel strong enough that making a sandwich (which I'll probably take back to bed to eat) sounds doable, unlike yesterday, when it would have been as impossible as climbing a mountain.

The National Empowerment Center just set up a new page on their Website bringing together the Boston Globe story, the Internet radio program Dan and I did with David, information about On Our Own, and some other things, including a form for people to send e-mail to me (http://power2u.org/judi-chamberlin.html). Since the Globe story will probably not be accessible on their free site indefinitely, this will ensure that people can continue to read it on line.

We watched the President's news conference last night--Obama projects such an air of thoughtful confidence, trying to clean up the multiple messes he's inherited. Every time I see him on TV I continue to be amazed that we finally have a president who is smart and who surrounds himself with other smart people.

Frustration and anger

Today is one of those days when I don't have the energy to get out of bed. I did get out of the house yesterday to go to acupuncture, although Marty had to cajole me into getting dressed because I was so tired. But I am highly motivated to get to acupuncture, especially because I missed my last two appointments (one because the clinic was closed after the snowstorm, and the next because I wasn't feeling up to it). As always, it was so relaxing--at the end of the treatment, I was lying on my stomach, and when Nate, my acupuncturist, said he was done, I told him, half jokingly, "I think I will just stay here and go to sleep."

Afterwards, Marty and I went to a kosher deli in Brookline because I'd been craving some mushroom barley soup; the soup and a piece of stuffed cabbage made a very nice lunch. But when we got home I more or less crawled into bed. Later, Julie stopped by with a great gift for me and Marty: a book of 150 difficult Will Shortz crossword puzzles (called "Ferocious Crosswords") that I'm sure we will have fun with. We've already started on the first one.

I continue to hear from people I've been out of touch with; a few days ago I had an e-mail from an old friend from my Vancouver days (I lived there in 1973-74), and when I wrote back I asked about another mutual friend. It turned out that she died recently; she was told she had terminal cancer, and had just a few weeks to get things in order, gather old friends together, and experience a peaceful death. I must say I felt a little bit envious, with things dragging out here for months, and having things decline by inches. As always, I'm trying to keep my emotions on the surface, so I'm expressing a lot of anger and frustration, primarily to Marty, who understands where it's coming from and does his best to comfort me.

Most of today I've had this very unpleasant sensation of a flutter in my diaphragm, which interferes with breathing. Kathy was here in the early afternoon, and gave me some morphine (I'd already taken some earlier) and some ativan, which made me a bit more comfortable. As usually happens, I feel better as the day goes on, but on a day like today, that's not that much of an improvement. I may try to take a nap and see if that helps.

Although Marty drives me to acupuncture every Monday, there is a conference he really wants to go to next week, and I've been trying to find a substitute driver; Dorothy isn't available, Julie is starting training to be a census taker, and Ann has a class, but I have a few more people to try. I don't want to miss acupuncture, so will keep trying to find a driver. It's been months since I felt strong enough to drive myself.

Ted left a short while ago, my next visitor will be Florence, who arrives a week from today. We talk on the phone at least once a day, and it will be wonderful to have her here.

Today's Boston Globe

The story about me appeared in today's paper, very prominently placed on page three of the Ideas section (http://www.boston.com/bostonglobe/ideas/articles/2009/03/22/a_talk_with_judi_chamberlain/)
Even though they spelled my name correctly in the story, I see it is spelled wrong in the url--grrrh! When I logged on a short while ago I see that there are already comments trashing my ideas, so I hope readers of this blog will (1) log onto http://boston.com and write their own comments, and (2) e-mail the story to others who may be interested.

At the same time, in another section of the paper, the Sunday Magazine, one of their regular columnists, Charles Pierce (cpierce@globe.com) uses some really ugly language, including "wing nuts," "crazy," and "loony," to refer to the Holocaust-denying bishop the Pope recently brought back into the church. Coming at a time when President Obama was (quite rightly) called to task for a thoughtless comment on Special Olympians that he made on Jay Leno's TV show the other night, and for which he issued a public apology, I think this display of hate speech needs to be challenged. Bishop Williamson's views can quite accurately be described has hateful, evil, and just plain wrong (he says the Germans didn't kill Jews in gas chambers); "craziness" has nothing to do with it. The article can be found at http://www.boston.com/bostonglobe/magazine/articles/2009/03/22/fissures_of_men/

I'm having a kind of rough day today, very short of breath and most comfortable back in bed with my bi-pap mask on. Both Marty and Ted have gone out, but I feel comfortable being alone, as I think I'm most likely to take a nap in a little while. Meanwhile, I feel really good about the thought of people all over the Boston area opening the paper and maybe getting their minds opened a little bit!

Going out for the day

The day started slowly; once again, I was able to make my own breakfast, and eventually Ted and Marty both woke up and we talked about what we might want to do. I was easily short of breath, but was eager to get out. It was a bright, sunny day, but only in the forties. All of us were just puttering around for awhile; Ted cooked some breakfast for himself, Marty and I did the Times puzzle. The Friday and Saturday puzzles are the tough ones each week, so we were quite pleased that we were able to complete both of them.

I was getting hungry for lunch (I had eaten much earlier than either of them), and was craving a chicken salad sandwich, so I suggested that we go out to a nearby restaurant, called the Arlington Diner (although it's not really a diner in the classic sense); Marty suggested that after that we go to an arts and crafts fair in Marlborough (one of the western suburbs of Boston), that his friend Donna called to remind him about (she couldn't go because she was working).

It was a nice drive. The fair was held in a hotel, with probably close to a hundred exhibitors, and there were some really beautiful things, although everything was way out of our price range. But it was fun to look at beautiful jewelry, paintings, photographs, pottery, woodcarvings, and lots of other things. Of course, I used my scooter, so it was easy for me to get around, but after awhile I was getting pretty tired.

We had driven out on the highway, but on the way back Marty drove on secondary roads through some pretty New England towns. Once we were home, I just wanted to get back into bed, but was feeling very happy about getting out.

Last night, Ted and I had cooked the same potato and cheese dish I made a few weeks ago; while it was in the oven it boiled over and the kitchen got quite smoky (which couldn't possibly be good for me). We opened some windows, and when we left today I started the oven's self-clean cycle. While we were driving out to Marlborough I got a call from Julie, who had smelled the smoke, so I explained what happened; she said she'd opened some windows. When we got home, I looked at the timer on the stove, and the clean cycle was on its final minute! Ted really enjoyed the casserole, which was as good as I remember it (http://www.boston.com/lifestyle/food/articles/2009/02/18/ham_and_potato_casserole/?page=full).

I'm not sure if I'll get out again tomorrow, but I'm sure that on Monday I'll be able to go to acupuncture for the first time in several weeks.

Today's Boston Globe and some thoughts on hospice

There was an interesting human interest story in today's Boston Globe about an elderly cancer patient in hospice care who had been an active square dancer, and how her hospice program arranged to have a square dance group come to her nursing home so she could have one last dance: (http://www.boston.com/news/local/massachusetts/articles/2009/03/20/shes_square_with_life/)

At the end of the article, she is quoted as saying, "I know I'm going to die one day but it doesn't bother me. I don't think about dying. I believe in afterlife. I assume there's a heaven. . . . I'll let you know if I get there." This got me to thinking how differently people respond to similar circumstances. I don't believe in an afterlife; I think when I die it will just be a return to the same nothingness as before my birth. I believe that the only "afterlife" is the way one lives on in people's memories, and it has been so gratifying to me to hear from so many people who appreciate the work I've done and the positive effect I've had on their lives. So I feel confident that I will live on in the memories of many, many people, and that thought gives me great comfort.

I also feel confident that if I were to ask my hospice people to help me fulfill some similar wish, they would do whatever they could to make it happen.

Taking it easy

I don't have a lot of energy today, but I've been able to be out of bed a bit, and I'm feeling comfortable. It's nice having Ted here--last night, the three of us went out to dinner, and today Ted and I are planning to do some cooking. When I woke up this morning I didn't come fully awake right away the way I usually do; instead, I just kind of drifted in and out for awhile, until I got a phone call from Florence and realized it was after nine. I was scheduled to be on a phone conference with Bill Anthony from the Center for Psychiatric Rehabilitation (http://www.bu.edu/cpr/), the second half of the Webcast we have been recording on the history and philosophy of the psychiatric survivor movement.

I made myself some tea and toast, and then Joan called from the Center (she's been doing all the logistics), and said that Bill wanted to change the time to noon, which was good because I didn't feel so rushed. Ann arrived mid-morning, and did some laundry and other odds and ends, and Kathy arrived for her usual Friday visit, to check me out medically. She was pleased to hear that I was feeling better, and once again reminded me that hospice staff is on call whenever I feel I need someone.

Bill and I had a good phone conversation (although I had to keep stopping to cough), and I'll be interested to see how they put the whole thing together and how many people will access it. Once again, I'm reminded of the power of the Web to disseminate information and link people together.

Yesterday I had an e-mail from the Boston Globe reporter, who sent me the edited version of the profile which is going to run in this Sunday's Living Section. She said I should ask as many people as possible to access it on the Web (http://boston.com/) and e-mail it to other people, as being high on the "most e-mailed" list of articles leads to even more readership, so I'm hoping readers of this blog will be part of this effort. The article is pretty good, although it's always hard to get across why terminology is so important (I had suggested a correction of her use of "people with mental illness" to "people diagnosed with mental illness," which she said her editor had changed back because she saw it as just a superfluous word, rather than a way of challenging the illness model. Still, I'm looking forward to seeing it in the paper on Sunday and getting feedback.

Marty was very pleased to hear last evening that I wanted to go out to dinner, and we told Ted we would take him to one of our favorite restaurants right here in Arlington, a Brazilian barbecue. It was a big disappointment when we drove up and discovered that the place has closed down (I guess just one more manifestation of economic hard times). So we drove to a similar restaurant in Cambridge, and all three of us pigged out. It's a fun kind of meal--there's a big buffet of hot and cold side dishes, plus waiters come around with long skewers of various kinds of grilled meats, and slice off as much as you want. Once again, it was nice to be out, and to feel how much milder the weather is getting (although Ted, having come from Berkeley, thought it was cold).

I'm hoping Marty, Ted, and I can get out over the weekend to do some fun things.

A good day!

I woke up pretty early this morning, feeling stronger than I have in awhile, although I hadn't gotten a lot of sleep. It was the first time in probably more than a week that I got up and made my own breakfast. It feels good to be able to do things for myself when I can, but at least I'm getting better about recognizing when I need to ask for help. So I made the usual these days--tea and cinnamon raisin toast, with lots of butter. Marty was awake but was still in bed when Ted called to say he had taken the subway to Harvard Square and had found someplace to get some breakfast, and Marty said he would go to pick him up (otherwise Ted said he'd somehow figure out where to get the right bus).

Marty and I stayed up pretty late last night--we were both in odd moods and just didn't feel like going to sleep. Finally I said I was going to try to sleep, and after a bit he set the TV timer (he likes to go to sleep with the TV on) and turned out the light. I wasn't asleep for very long when I had one of my nightmares--a very realistic dream that we were lying in bed and the blanket was on fire (smoldering, like a cigarette had been dropped on it, although neither of us smoke). In the dream, he was trying to put it out by stamping on it, and I said I'd better go get some water before it burst into flames. I had the feeling that it was too late--very scary, and then I woke up. I was glad that Marty was there to reassure me that it was just a dream and everything was OK.

It was great to see Ted (I'm not sure how long it's been), and good to see that he and Marty were comfortable with each other. Lisa came to give me my massage, and since Ted was feeling exhausted after an overnight flight he went to take a nap in my guest room/office. Lisa hasn't been here for a few weeks, and I asked her to work on my head and neck even though I am not having the intense headaches I had been. She spent a lot of time gently stretching my neck, massaging my shoulders, and making my chest feel more open. As always, it was extremely relaxing. For music, instead of the Bach CD we've been using, we put on a CD of harp music that my friend Myra Kovary recorded, which was really beautiful and conducive to a mood of calmness and peace. Myra's music is available on http://www.myrakovary.com/

Kathy called, and I was glad to tell her how much better I was feeling. She encouraged me to get out of bed as much as I could, because she thinks it helps to loosen some of the gunk in my chest. On days like today, when I can spend short periods out of bed, it feels good, and I've become good at recognizing when I've used up my reserves and need to go lie down.

Marty, Ted, and I are planning to go out for dinner, which probably means I'll be tired tomorrow, but I know we'll have fun, and fun is important.

Late in the evening

I don't know why so often the best part of the day is the evening, but again today I've been feeling much better as the day has gone on. I'm still very weak, but I'm much calmer and am ready to try to sleep (when I'm feeling really bad going to sleep is scary). I'm hoping tomorrow will be a better day--Ted is arriving from California in the morning, and I'll be getting a massage for the first time in a few weeks.

The weather has been quite mild for a few days, but is supposed to get cold again tomorrow. It would be nice if we had some mild weather and I felt strong enough to go out while Ted is here. Once again, I'll just try to focus on one day at a time.

Scared and panicky

I'm feeling a little better now, but for a few hours this morning I felt like my life was slipping away. Again yesterday, I slept most of the evening and then all through the night, and even when I thought I was awake I kept drifting off to sleep again. Once I was up for good, I felt really awful. It was hard to breathe; I took off the bi-pap mask to go to the bathroom, but quickly came back to bed and put the mask back on. I felt a lot of pressure in my chest, was incredibly weak, scared, and not sure what to do.

Marty made me some tea and toast (I need to eat something before I can take my meds), and I just took the absolutely necessary meds before putting the mask back on (Celebrex for my arthritis, prednisone, and morphine). I was trying to distract myself (TV, newspapers, doing the crossword puzzle with Marty), but I continued to feel panicky, and eventually I called Kathy, who said she'd stop by later in the afternoon. In the meantime she told me to do a nebulizer treatment, which I'm always resistant to (I hate the way it makes me feel), but I promised her I would, and I did.

By the time she arrived, I was beginning to feel better. I had asked Marty to make me a grilled cheese sandwich (another one of my comfort foods), and I was no longer feeling the chest pressure. Kathy was extremely reassuring, saying that she certainly understood why I had felt so panicky, and that I should never hesitate to call. She said she'd stop in again tomorrow--once again, making me feel so good about hospice care.

My bi-pap machine got fixed yesterday--the respiratory guy called in mid-afternoon and I told him to come to the back door, but he forgot and rang the doorbell in the front, meaning I had to take the long walk to the front door. He checked out the machine, determined one of the modules was damaged, and want out to his truck to get a new one, which popped right in. These machines are amazing, because each component can be replaced individually. He also said he could double the length of the air hose by linking two of them together, so now I have about a six-foot long tether which is a lot more comfortable (there've been times I've pulled the machine down by rolling over in bed with the hose somehow getting wrapped around me).

I had to make another hike to the front door when the guy who delivers medicines for hospice arrived with some meds Kathy had ordered earlier. Marty was out all afternoon, and then called me early in the evening to say he was going to a meeting, and asked if I'd be able to manage putting something together for dinner, and I assured him I could. I checked out the freezer and browned some frozen blintzes, which were easy and delicious. Marty didn't get back until pretty late in the evening, when I was already semi-asleep, although I woke up for a bit before going to sleep for the night.

One of the ways I've been distracting myself today is watching the AIG hearings and enjoying the various congresspeople (including Massachusetts's own Barney Frank and Michael Capuano) making AIG's Liddy squirm!

Still tired

I guess I'm still paying for the energy expenditure of the weekend. Yesterday I slept most of the evening, and then got a good night's sleep as well. I haven't napped today, but it's one of those days where I want to spend as little time out of bed as possible.

Marty set the alarm for seven this morning because he had an early doctor's appointment. I woke up about six thirty; in my former life, I always was an early riser, and I'm the kind of person who comes wide awake easily, but I know most people struggle to come awake, and poor Marty, who is overtired and stressed out these days, took awhile to get up. While he was getting dressed, his feet got tangled in my oxygen tubing, which pulled the bi-pap machine off the cabinet with a loud crash. There's a small plastic piece which connects the air hose to the machine, which broke. I've broken it in the past and the oxygen delivery guy had left me several of them, since it's such a vulnerable part. I was sure I still had a few left but couldn't find them, so I called the oxygen company and they said they'd have someone deliver one. My regular delivery guy came a few hours later, and left me a bunch of them once again, but when I tried to turn on the machine, nothing happened, so he said he'd put in a call to one of the respiratory therapists, who called and said he'd be here later today.

Marty left around nine, and I was able to make tea and have a small breakfast before Ann arrived at ten. I had a bunch of things for her to do, including putting fresh sheets on the bed, which always feels good. While she was here Kathy came to check me over; she was pleased to hear about my good weekend and agreed that this tiredness was to be expected.

After Ann left, I was alone for only a short while before Jen, my hospice volunteer, stopped by and we talked for awhile. I had put a chicken pie in the oven before she arrived and when it was done she left and I ate my lunch and then came back to bed. I don't feel too bad lying down but as soon as I have to get up I immediately get winded and just want to get back to bed.

It continues to get gradually warmer and I'm hoping that while Ted is here (he arrives on Thursday) we'll be able to get out and do some enjoyable things. Even as weak as I am, there's still good things to be found, and I'm determined to find them.

A tired day

After all the activity over the weekend, it's not surprising that I'm very low energy today. I'm not totally wiped out, just wanting to stay in bed and rest. I slept till nine and took an afternoon nap, and I've been reading and just generally taking it easy. I was able to participate in a one and a half hour teleconference on housing issues and make some (I hope) useful comments, after a series of dreams last night in which I somehow ended up getting the time wrong and missing the conference.

It was so good to have Sally here, and in a few days my friend Ted arrives. Company energizes me, and even when I don't feel like getting out of bed, it's great to be able to sit and talk and get my mind off being sick.

I'm hoping that as it gets warmer I'll be able to get out a little more. There's a little porch right outside my bedroom where I love to sit, and most years I've filled the hanging baskets and window boxes so I can be surrounded by flowers. There's a little table there, and I love to have my meals there. Of course, this being New England, I'm sure winter will be back a few more times, but I know spring will come for sure soon.

Exhausted but happy

I woke up this morning feeling fairly strong, and wanting to go out again to enjoy a beautiful day and take advantage of Sally's visit. I didn't get out of bed for quite a while, and when I did I somehow managed to connect the end of the oxygen tube to another piece of tubing that didn't go anywhere, so I wasn't getting any oxygen. It was probably an hour before I discovered it--I had started to feel really weak again, but once I got things hooked up properly I felt better pretty quickly.

Marty found some information about a flower display that was being held in several locations in downtown Boston (as a substitute for the big annual flower show that was cancelled this year for financial reasons), and when Sally called I asked her if she would like to go to it. She was enthusiastic because she had never been in the actual city of Boston and wanted to see it. Dan Fisher, my National Empowerment Center colleague, who had been on the radio with me the day before, called and said he would take the subway and meet us downtown. Since we were going to be very near Chinatown, I asked everybody if they would like to go to a dim sum restaurant, which is something I've been craving (dim sum are assorted little dumplings served from carts). Marty dropped Sally and me in front of the restaurant and went to park, and when we got to the third floor (via elevator) where the main part of the restaurant was, Dan was standing there just about to call us on his phone to let us know he'd just arrived. I was walking very slowly and leaning on either Dan or Sally till we got to the table.

We quickly were served an assortment of dishes and sat and ate and talked for quite awhile. I'm really enjoying that my friends like one another and that we can talk about Israel/Palestine (Marty's specialty), psychiatric survivor issues, world affairs, and lots of other things, with conversation flowing freely.

When we left, Marty got the car and pulled up in front of the restaurant, and we drove a short distance to one of the big new hotels down by the waterfront, the Intercontinental. Marty pulled up in the driveway and an attendant said we could park the car there for I think $15 or $20, but then he was kind enough to tell Marty that there were some parking spots on the curb on the other side of the street (a little more complicated to get to than it sounds, but still good news), so Marty got my scooter out of the trunk and Sally, Dan, and I went into the lobby, which had some very big displays of roses that were dramatic, but somewhat of a letdown from what we were expecting. Behind the hotel was a big open patio looking out on Fort Point Channel, and it was actually warm enough to be outside, which was wonderful.

We then walked (with me in the scooter) about two blocks to a big office building, International Place, and the displays there were much more interesting. There were a lot of floral arrangements on different themes, as part of a competition for which ribbons were awarded, so we spent a bit of time slowly circling the big lobby. When we had finished I said that I was feeling really tired and wanted to go home, but Marty said that the way back to the car would bring us past the third location and we should decide then if we wanted to go in.

It was another office building, with revolving doors (no good for the scooter) and next to them a locked handicapped entrance. It took awhile before we could find an attendant who directed us around the side of the building to another entrance, but it was worth it, because that was the best part of the show. There were exhibits based on individual flowers--a huge display of all different varieties and colors of orchids, for one, that was breathtaking. While we were there they were breaking down the displays, and Dan and Sally asked if they could have a flower for their friend, who was sick, and instead they presented them with an enormous bouquet of yellow and rust-colored very long stemmed roses. I haven't counted but there must be several dozen!

On the way home Marty gave Sally a quick tour of Boston, then we dropped Dan off in Cambridge and came home and I immediately got into bed. I was so tired it was an effort to hold my head up, but once I was lying down I felt pretty good, and very happy that I had made the effort to get out.

I'm not going to acupuncture tomorrow because I'm scheduled to be on a conference call about housing for people with psychiatric disabilities (more actual work), so I'm not sure when I'll be going out again, but now that it's getting warmer it will be easier.

A glorious day!

As usual, I could pretty accurately evaluate how the day would be when I woke up. It was about 7 AM and I could tell that I was feeling stronger, but I didn't want to get out of bed and, after Marty and I talked for a bit, I fell asleep for another hour. I still didn't feel like getting up, so Marty brought me some tea and cinnamon toast, and I ate and read the papers.

My friend Sally had said she'd call once she woke up (her plane arrived from California last night); she called around eleven and Marty went to pick her up. I had put the bi-pap mask back on as my breathing felt a little labored, and Sally sat on my bed and we talked, catching up on our lives and on developments in our work in the psychiatric survivor movement. After a while I took the mask off and put on the nasal cannula--the mask covers a lot of my face, so Sally said "I can see you now."

Marty asked whether I thought I was feeling up to going out to a restaurant, and I started thinking it was possible. I was scheduled to do David Oaks's radio show live at two (David had taped an interview in case I wasn't feeling up to doing the show live), so I said it would have to be after that, but that first I wanted to take a shower. I'm not even sure how long it's been since I showered or went outside. I can manage the shower by myself; the hard part is getting a comb through my hair afterwards, but Sally did that for me.

The radio show went really well. I was the first guest, and then Dan Fisher from the National Empowerment Center (http://www.power2u.org), where I used to work, joined in, and there were also phone ins and e-mails. All the shows are archived on MindFreedom's Website, http://www.mindfreedom.org. I really enjoyed talking about the issues that I have worked on for so many years, and using the model I have been developing linking how hospice services are delivered with the kind of mental health system we envision.

By the time the show was over I was hungry. I got dressed (something else I haven't done for a long time), Marty filled my portable oxygen tank, and we were ready to go. I suggested a somewhat upscale Chinese restaurant that we both like, and we had a great meal (with leftovers to take home), and more great conversation. Marty talked a lot about the work he does with organizations promoting peace and justice between Israelis and Palestinians. The fact that we both do social justice work, although in such different areas, is one of the things that originally drew Marty and me together.

When we had finished eating and talking, I was pretty tired, but not exhausted. We dropped Sally off at her hotel (which is just a few blocks from my house), and I've been resting since we got home. Sally will be back tomorrow; it would be great if I could get outside again, but I've just got to take whatever comes. Although it wasn't yet warm today, it was definitely milder than it has been, and I saw snowdrops blooming in our garden, and green sprouts of what will be tulips in a few weeks. Spring is definitely coming, although in its New England way it is sure to tease us a few times before arriving for good.

Riding the roller coaster

I didn't write an entry yesterday because I was feeling so good, and was busy doing real work for the first time in a long time, and today I haven't written until now (evening) because I've been feeling so awful most of the day. I'm finally feeling up to sitting up and writing; for some reason, I often have the best part of my day well into the evening.

Yesterday was such a good day. I did an interview over the phone with Marianne Farkas, my colleague at Boston University, which will be part of a Webcast, and was supposed to do the second part today with Bill Anthony (which has now been rescheduled for next week). I reviewed the written interview that the Boston Globe reporter did and sent her some notes where she seemed to have gotten the quotes wrong. And I reviewed a document on housing for people with psychiatric disabilities and sent my comments, in preparation for a teleconference next week. It feels so good to be able to use my brain and to be able to focus on something besides being an invalid.

I was feeling good enough to cook a simple dinner--I chopped up some veggies and poured in a jar of spaghetti sauce, boiled some spaghetti, and defrosted some meatballs. When it was ready I asked Marty to pour the spaghetti into the colander--I'm too weak to do that. When we finished eating, I was too tired to clean up or put the dishes in the dishwasher. Instead I lay down in bed; I think we were watching TV, but suddenly I fell asleep and slept for an hour or two, then woke up for a bit and then slept all night. When I woke up in the morning it was nine o'clock--surprisingly late, especially considering that I'd slept all evening. I got up to go to the bathroom and immediately realized that I did not want to be out of bed.

I felt really awful. I was struggling to breathe, so Marty suggested I put the bi-pap mask back on, and then I spent most of the morning drifting in and out of sleep. Kathy came to check me out, and Ann arrived and cleaned up the kitchen and ran the dishwasher. I wanted to get out of bed so she could put fresh sheets on the bed, but getting up was just too hard, so I guess I'll have to sleep on these sheets a few more days.

I was aching all over, which is from my arthritis, so I wanted to take a Celebrex, but it can't be taken on an empty stomach, so Marty helped me figure out what I felt like eating. Ann had already made my tea, and I decided I could eat some raisin toast. Eating means I have to take off the mask and use just the nasal cannula, so as soon as I had eaten and taken my pills I put the mask back on. I just took what was absolutely necessary--Celebrex, prednisone, Premarin, and morphine. Celebrex is a miracle drug for me, and the pain stopped within an hour. But I continued to feel generally lousy, and I think I slept some more. When I'm feeling really bad I can just lie in bed, without watching TV, or reading, or other distractions; I just let my mind wander and drift between sleep and an awake-but-dreamy state.

Speaking of dreams, I had a horrible nightmare the other night. Just after falling asleep, I dreamed that I was lying in bed. I knew that (in the dream) I was dying, and I tried to call out because it was so awful on the inside, even though I might have looked peaceful on the outside, but I couldn't make a sound. But somehow I was able to get Marty's attention and let him know I wanted him to hold my hand. In the middle of all that I woke up, and it was so reassuring to have Marty there, who held my hand for real while I calmed down. We talked about it yesterday and he told me I could be sure that he'd be holding my hand whenever I needed him, even if I couldn't talk.

My friend Sally is arriving from California this evening; I'm looking forward to spending the weekend with her, and a few days after she leaves my friend Ted arrives from California for a six day visit, so I will have lots of company.

Julie has been helping me get all my bills paid. A few weeks ago we went to the bank and set things up so that either of us can sign checks, and over the past few days she's gone through all the accumulated mail and wrote some checks, and set up others to be paid on line. I've been keeping up with the absolutely necessary bills--credit cards and the mortgage--but have been paying everything else on a catch as catch can basis. It eases my mind to know that this is being taken care of. I have enough money to pay everything; it's just the logistics that are difficult.

A huffing and puffing day

I've spent most of today in bed, because every time I tried to do anything I got ridiculously short of breath. I did get up this morning and made myself a cup of tea and some cinnamon raisin toast (Marty stayed at his place last night), but went right back to bed. Oliver and Gilbert kept staring at me with that "we want breakfast" look, but they are actually very easygoing cats and seem to know they'll get fed eventually, which finally happened about noon when Marty arrived.

In the early afternoon, David Oaks called from Oregon to record an interview for his Web-based radio show, which will be aired on Saturday (see http://www.mindfreedom.org/radio/dan-fisher-judi-chamberlin), and later I got a call from a Boston Globe reporter who e-mailed me yesterday to set up an interview about my work over the years, to run in the Living Section on Sunday. Then one of my favorite visitors, Susan, arrived with the wonderful Thai chicken soup we both love. Before she arrived I'd been up for a bit, putting a few last dishes into the dishwasher before running it, and it got me very out of breath, so when she arrived I wasn't ready to get up for awhile. She came and sat on my bed and we talked, and Oliver, who always has to know everything that's going on, came and sat with us and got lots of strokes and tickles from Susan (Gilbert is pretty shy around strangers, although he did come out later and let Susan pet him), and after awhile we went into the kitchen. Susan told me to sit down and I told her where everything was. She and I like lapsang soochong tea, so she brewed a pot and heated up the soup and we ate and talked.

I went back to bed, and Susan said she wanted to empty the dishwasher for me, and she came into the bedroom to show me anything she couldn't figure out the place for. It feels so good to have a friend who realizes how these simple things are sometimes too much for me, although I still have a hard time sometimes accepting how hard these simple-sounding things can be. When I'm as short of breath as I am today, it feels, I suppose, the way a normal person would feel at the end of a really hard workout.

Tomorrow Joan from BU (http://www.bu.edu/cpr/), where I used to work, is coming to do a taped interview about the history and philosophy of the psychiatric survivor movement. Originally, she was trying to do it as video, but the logistics didn't work out. I really love talking about this stuff and functioning as a person who has a life, rather than an invalid. During the interview with the Globe reporter, I was able to make some analogies between the hospice model and what I believe would be the elements of a good and helpful mental health system--one which put the patient's self-defined needs at the center and provided services that were supportive and user-directed.

Maybe tomorrow I'll feel a little stronger.

A busy day

Although I don't feel like going any further than the kitchen, it's been a pleasantly busy day. First I had a visit from three people I've worked with over the years, Bernie from the Mental Health Association, and Joan and Beth from the Department of Mental Health (Bernie and I are the long-term co-chairs of the Massachusetts Mental Health Planning Council, with Joan and Beth of DMH doing the staff work). I had started the day by making my own breakfast (tea and grilled cheese on whole wheat--still another of my comfort foods), and eating it in the kitchen while Marty was still sleeping. By the time I finished he was up, and getting himself organized to go back to his house (about a mile away) to do his laundry and other errands, but then his friend Donna called and said she needed his help with some car problems, so he headed there instead, knowing I'd have people with me most of the day.

When Bernie, Joan, and Beth arrived, they were all wearing bright green plastic St. Patrick's Day sunglasses, and they looked so funny I took a picture with my cellphone camera. I told them I didn't have enough energy to go to the living room, so they brought in some chairs from the dining room and arranged themselves around the bed. Next, they produced a hilarious proclamation, which was read out loud, full of "whereases" and "therefores," the gist of which that I was declared Honorary Irish. To complete the theme, they also brought a little book of Irish proverbs, and a box of shamrock cookies from the Dancing Deer bakery, covered with, of course, green sugar. When Marty left we were all chatting away, and an hour or so passed really quickly.

Ann arrived while they were here, and she unloaded the dishwasher and put things away in the kitchen. I introduced her to everyone and we continued a wide-ranging conversation that hopped from topic to topic, until they all said they needed to leave. I invited them to come back another time, and I also asked that they let the Commissioner know that if she wanted me to resign as Co-Chair I certainly would, but for now I'd prefer to stay on (which all of them thought was fine).

Once they had left, I sat in the kitchen while Ann took everything out of the refrigerator. I know there was a lot of stuff in there that needed to be thrown out, and it was so full it was hard to find anything. Yesterday, when Marty got back from a Trader Joe's run, he found he couldn't stuff any more into the freezer, so he took everything out of there and organized it, and now the fridge is similarly well-organized. Ann also washed down all the shelves, and when Marty called a while ago I told him he's going to be amazed.

While Ann was still here Kathy arrived, and we reviewed how my days had been going since she was here on Friday. I told her it's been up and down, but clearly I'm much better than I was the last time I was here, and she said that clearly the antibiotic was helping. I'm halfway through the ten day course, and hoping that I'll begin to put together more than one good day in a row. When she arrived I went back to bed, as I'm definitely more comfortable there.

The next visitor was my hospice volunteer, Jen, so Ann left, and Gen brought in a chair. We just talked about a lot of different things. Last time she was here, she mentioned that she played Scrabble, and I told her that, although I'm quite a word person, I had never really gotten into Scrabble, but that one of my Valentine's Day presents from Marty was a word game, which is called Wordspot, and we planned to try it. So today I got it out of the sealed box (I hate how everything these days comes so tightly sealed that it's a challenge to get to it) and we started reviewing the rules, but it sounded complicated and somewhat unclear, so we finally decided that maybe I should figure it out with Marty.

Last night, in fact, we were deciding whether to learn this game, but instead I ended up teaching Marty another word game, Jotto, which I used to play with my parents all through my childhood, and which I hope Marty will want to play regularly. We've been doing the crossword puzzle together every morning, and our constant wordplay and punning are a big part of why we get along so well and have so many good laughs. So one of these days we'll have to figure out Wordspot.

I've been resting since Jen left. I didn't get hungry until around five-thirty, so I just heated up some lasagne which Marty got at Whole Foods a few days ago; I guess later in the evening I'll have a light snack. I've been getting very short of breath after any minor exertion, but I definitely feel a whole lot better than I've been feeling.

Feeling better

I had a good night's sleep, but I guess I wasn't fully awake when I tried to switch over from the bi-pap to the oxygen tank. I was sitting on the side of the bed and couldn't find the loose end of the tubing to attach to the nasal cannula, when it was still attached to the bi-pap intake about a foot from me, right at eye level. I began to panic because I wasn't getting any oxygen, which woke Marty, who immediately pointed out what the problem was, making me feel pretty stupid (it's something I do every morning). Of course, once I was breathing again, I calmed down. I went to the bathroom (still moving in Slo-Mo), and decided that I felt pretty good, so I was able to go into the kitchen and make my tea, and then I cooked some pasta and ate it sitting up in the kitchen. It's good for my morale to be able to be out of bed, especially after yesterday when I had that deep exhaustion and just wanted to stay in bed.

Today is acupuncture day, but when I saw it was snowing I decided not to go, not wanting to breathe cold air and risk a relapse. I still have pneumonia, after all. I've now taken four days of antibiotics, with six to go, which should be effective, based on many past bouts with this.

Marty is out doing grocery shopping and other errands, and I just heated up the rest of the eggdrop soup and ate, again, in the kitchen. Eating in bed isn't that bad, with my cushioned back rest and the bed table, but it's still inherently messy and makes me feel like even more of an invalid. I know the time will come when I will have to eat in bed, but as long as I can still make it into the kitchen and eat sitting in a chair, I certainly prefer it.

The other day, Marty brought me a gift from his friend Donna--three potted blooming bulbs (white and blue hyacinths and yellow tulips) and a bunch of tightly closed daffodils that have now opened. They're all on the kitchen counter and the hyacinths are perfuming the whole room. They're a real reminder of spring, which is coming, despite today's snow. Marty asked if he could put them in the bedroom but there really is no place for them.

I wish I could have gotten out over the weekend to enjoy the relatively warm weather, but it's only a matter of weeks before we can count on at least some warm days each week. I'll have to ask Julie to let me know if any of our early bulbs (crocuses and snowdrops) are poking up yet. Once spring comes for sure I'll be able to sit out on my porch, which is right off my bedroom and where I always eat breakfast and lunch in warm weather. I've heard birds chirping a few times now. Living till spring was one of my goals, and it looks like I will reach it.

Some thoughts about blogging

When I started this blog, it was mainly as a way to keep people in my wide circle of friends and acquaintances informed about how I was doing, but once I started I realized that it could eventually reach many more people. I'm really only marginally computer literate, and use the computer mainly for e-mail (and Googling any time I can't place a song lyric or other bit of trivia). I'd never even read a blog, so I still have no idea whether I'm doing it "right." I've Googled to find some hospice sites, and I've sent a few of them information about the blog; I know that several of them have shown the link on their pages. I really like the idea of people in the hospice movement, both professionals or patients, reading this.

Yesterday I was playing around with the look of the blog, rearranging some of the page elements and providing a bit more information in the sidebar. I also looked through the registered users; I know a lot of people who tell me they read the blog but don't show up, so I have no idea even of how many readers I have. It would certainly be helpful to me if people would register, although I realize a lot of people are reluctant to sign up for anything. Yesterday I had an e-mail from a reader who said he posted the link to the blog on Twitter (I know what Twitter is but have never used it), and who said that it had then been "re-tweeted" several times! And today I found a comment posted by a reader who said she'd seen a reference to the blog in the Toronto Star--I have gone to the Star site and tried searching, but have not been able to find the reference. I can't even imagine how or why someone at a Toronto newspaper is writing about my blog!

Today has been a lousy day. Marty went out to a meeting in the morning, and we were planning to go out to brunch and to a movie, but today was one of those days when I had no desire to get out of bed. So he was a little disappointed when he called to say he was on his way back. I asked him to bring me some egg drop soup (it's funny how specific foods will suddenly appeal to me), and it tasted really good. This evening he baked a sweet potato, which was also yummy.

After yesterday, when I spent a fair amount of time out of bed, this is discouraging. I guess it's better to go out on the spur of the moment, rather than to plan, since I can't predict when I'm going to have a good day. But it's been relatively warm this weekend, so it would have been nice to go out. Tomorrow is acupuncture day, so I'm going to try to get out if I possibly can.

I talked to the on-call nurse, Lisa, just to check in, which is reassuring, even when it doesn't lead to any specific action. Just knowing that I can call any time and speak with someone who at least has a reasonable idea of who I am makes me feel safe and cared for.

Dependence and independence (revisited)

I realized yesterday when Ann was here that I'm really improving in letting go of the things that are too hard for me to do myself. When Ann was putting the laundry away in the linen closet, she asked about where to put certain things, and my response was that she should put things wherever she could fit them. "I'm not going to micromanage the linen closet," I told her. The more I'm able to let go of things that don't, ultimately, matter, the better I will do at maintaining control of the important things. It sounds simple written down like that, but it's taken me awhile to get to this place, and I have no doubt I'll continue to struggle with these issues.

I also asked if she would mind trying to brush my hair, which has gotten pretty tangled, but which I had worried was maybe too intimate a service. I guess after showing her my soiled sheets I don't have much personal privacy left, but this too was another admission of things I can no longer manage myself, as it takes a lot of energy, so I've just been neglecting it. I had asked Marty if he thought I should ask Ann to do it, and he encouraged me, saying also that he'd be glad to do it if necessary. So I think I'll have Ann brush my hair regularly. In my old life, I used to shower and wash my hair daily, and when I do take a shower these days I find brushing and combing my hair is the most exhausting part, so maybe I'll try to get into a routine where I shower when Ann is here (with the bath chair in the tub, showering is relatively easy), knowing that she will take care of my hair afterwards. It would be good if I can shower more regularly (I don't want to go to sponge baths in bed till I really have to).

I'm continuing to feel stronger, although I'm still being careful to move very slowly. I got about six hours sleep last night (definitely not enough), and have now finished breakfast and taking my morning meds. I'm continuing taking cough medicine regularly, although today I'll try to taper to a six hour schedule as Kathy recommended. It's supposed to be warm today and maybe we should try to get out later. I'll see what Marty wants to do; right now I'm giving him a chance to sleep a bit more.

Improving

Although I'm still very weak, today has been so much better than yesterday. We stayed up pretty late last night, lying in bed, watching TV, and talking. It was one of those nights when I just didn't want to go to sleep, even though I was exhausted--it's a particular kind of bad mood where I feel agitated and anxious--so we didn't turn out the light till about 1 AM. But I did sleep soundly, although not that long, till about seven (although of course I'd slept a lot during the day). When I woke up I was very hungry, and didn't want to wake Marty, and I decided if I very consciously moved very, very slowly I should be able to do things myself without getting short of breath. It must have looked really funny, but in super Slo-Mo I was able to go to the bathroom, and then into the kitchen where I made tea and started boiling some pasta. While it was cooking I remembered my cinnamon raisin bread, so I made toast and put the pasta in the refrigerator for later. (While pasta for breakfast might sound peculiar, it's really no different from cereal, essentially.)

I didn't have the energy to go pick up the newspapers, but I had a New Yorker for reading material. After I ate, still moving slowly, I made jello and a pitcher of green tea, which I drink cold, a habit I acquired in Japan (where cold, unsweetened green tea in a can is a common vending machine item). By the time I'd finished all that, Marty was awake, and we worked on the Friday crossword puzzle for awhile (which we'll try to finish tonight).

Although I'm still weak, I feel much, much better than yesterday. I haven't napped at all, but I've been resting and doing anything that needed to be done in ways that were adapted to my lack of energy. Ann arrived a little after ten, and she got the bed made with fresh sheets (very much needed after yesterday's "accident") and did several loads of laundry. We also cooked pea soup, which Marty and I had been talking about making for days. I like cooking with Ann--I can sit at the table and cut up things, while she does the stuff that involves standing and carrying. I told her that maybe we'd make another potato casserole next week.

I also asked her to help me sort through several piles of things that had accumulated on the bedside table and in the box that I'd been using to keep stuff that I need to have handy during the day. The box had gotten so filled with junk that it wasn't useful any more, but we got everything either thrown away or put somewhere else, so now I hope I once again have a system where everything on the bed will go into the box so the bed can get cleared every night. Recently it's been an obsticle course that gets in the way of cuddling with Marty--not a good thing!

Marty has been gone all afternoon (he took his friend Donna to the doctor), but I expect him home soon. He said he'd call on the way so we can decide what he should pick up for dinner. I've been very hungry all day after hardly eating at all yesterday. I ate the pasta for an early lunch, and had some more cinnamon raisin toast for a snack, and another snack of pea soup. I still find that only a limited number of foods appeal to me.

Kathy called mid-morning, and was glad to hear that I was feeling better. She asked if I wanted one of the nurses to call tomorrow to check on me, which I think is a good idea, and she reminded me that I could always call any time if I think I need to.

Oliver is sleeping on my bed with a paw over his eyes, which I always find amusing.

Weaker and sicker

I slept really soundly last night, getting some badly needed rest, waking up a bit after seven, and got out of bed to go to the bathroom (which is very close to the bedroom). It was one of those times when I didn't realize till I got out of bed how weak I was, and I started gasping for breath. When I sleep, I wear the mask for the bi-pap machine, but to move around I need to switch to the nasal cannula, since the hose for the bi-pap is only about three feet long, while I have fifty feet of tubing for the oxygen tank. When it gets really hard to breath the mask is very helpful, so Marty helped me to get switched back, but I was still having a lot of trouble breathing. I called hospice and was told that all the nurses were in a meeting but that Kathy would call me as soon as it was over (she told me later that if I should ever feel that it was an emergency, I should tell whoever was covering the phone that I needed to speak to her right away, which is a good thing to know).

It was scary to feel that short of breath, even with the mask on. Marty was holding my hand and trying to comfort me, but I really was terrified. Not being able to breath is such an awful feeling. Somehow, with all the gasping, I also soiled the bed, which was humiliating and made me feel even more awful and helpless. A couple of weeks ago Kathy brought me a package of disposable bed pads, which I was using for a few days, but then stopped using. I got myself cleaned up and Marty put a pad over the mess, and eventually I calmed down, and I guess at some point fell back to sleep, because I was asleep when Kathy arrived.

Yesterday she had wondered if perhaps I had a touch of pneumonia. I didn't think so yesterday, but this morning I had a pain in my lung when I breathed, which I'm familiar with from previous bouts of pneumonia, and when Kathy took my temperature it turned out that I was running a fever as well. She called Dr. Meyer to get a prescription for antibiotics, and started me on another medication to dry up some of the secretions, which she said I should take every four hours along with the cough medicine.

I've taken several naps today, and by mid-afternoon was starting to feel a little bit better, helped by a visit from my friends Bob and Jenna. It was great to sit with them and talk about all kinds of things, which took my mind off how bad I was feeling. Marty is so right that visitors are always a good thing, even on a day like today when I didn't feel up to getting out of bed. I've managed to eat a little bit (some cinnamon toast and tea while Kathy was here, and some whole wheat pasta and butter late in the afternoon), but in general food doesn't appeal to me right now. I took my arthritis medicine and my prednisone, but skipped the rest of my pills, which are mostly vitamins and supplements.

It's evening now, and, as usually happens around this time of day, I feel better and stronger. Marty went out for a couple of hours in the late afternoon but should be back soon. I'm hoping that a few days of antibiotics will knock this out so that I'll be a little stronger. Last night after dinner I was able to clean up the kitchen, loading the dishwasher and stuff like that, so I just wasn't expecting to be so weak when I first got out of bed this morning. When I'm aware that I'm weak I can make myself move extremely slowly so that I don't over-exert; it's frightening that just taking a few steps from the bedroom to the bathroom can be so stressful.

How hospice helps

These coughing spells are extremely worrisome, so I was pleased with Kathy's attitude when she was here yesterday. "We are going to get this coughing under control," she told me. She started me on Plan A--cough medicine every four hours, whether I was coughing or not, and she already had a Plan B if that didn't work (an additional medicine). I guess this is the same attitude that cancer patients find so helpful when they come into hospice--they are told that their pain will be controlled, when often they have been suffering for a long time. It's that quality of life issue again--nothing is more important for the sick person than to know that they will get real help with whatever that person thinks is the most important thing.

Again, I can't help contrasting this with the mental health system, where often what people want is very practical stuff, like finding a place to live, and instead they have to jump through all kinds of hoops because someone else decides what's most important. That approach makes the person feel even less in charge of his or her own life.

In any case, I haven't had another coughing spell. I have been using the cough medicine, and I also need to do two nebulizer treatments a day (I managed one yesterday). For some reason, I couldn't sleep last night, which happens very rarely these days, and I got up for good about five-thirty. I was feeling pretty good, so I was able to go into the kitchen, leaving Marty to sleep, and have some tea and cinnamon raisin toast (I think this is going to be my standard breakfast for awhile--until I get sick of it), and read. When I heard Marty beginning to stir I went into the bedroom with the newspapers (getting all the way through the apartment and to the front step is a big excursion these days, and I had to sit and rest in the living room for a bit before getting all the way to the front door, and again on the way back), and we did the Times puzzle, which turned out to be one with an interesting twist and fun to do.

Nancy, the hospice chaplain, came for a visit and she, Marty, and I lounged on my bed and talked for probably an hour. A lot of what we talked about was chit-chat, but I've discovered that it's not necessary to focus on the "heavy" topics--things come up very naturally in the course of conversation, and we did end up talking a lot about support, the difficulties of asking for help, and my being able to give up control over details without feeling an overall loss of control.

Marty left a little while ago to run some errands, and I will probably try to take a nap and see if I can catch up with some of that missing sleep.

Another step down?

I had another coughing spell about six this morning--this time I took cough medicine early enough that it stopped after about ten or fifteen minutes. Marty stayed here again last night--I'm glad not to be alone when bad things happen. I called hospice at about eight and the nurse on call said she would call Kathy, who called me back about an hour later and said she'd come by earlier than she usually does. She wants me to stay on a routine of cough medicine every four hours, whether I'm coughing or not, and then slowly taper back from there. The on-call nurse had asked me if I thought I needed to go to the emergency room, which surprised me (of course I said no); Kathy said that the only reasons that hospice would send a patient to the ER would be for things like falls, uncontrolled bleeding and the like, and she agreed with me that I certainly did not need to go to the ER.

I'm feeling very weak and tired and my head is aching. I'll probably nap at some point. I've also got my new hospice volunteer coming this afternoon. Ann was here this morning for a few hours--she put fresh sheets on the bed, which always feels good, and I changed into a clean nightgown, although I didn't have the energy for a shower. I suppose at some point I'm going to need sponge baths, but I'm not ready to take that step into invalidism yet.

I got a sudden craving this morning for cinnamon raisin toast, dripping with butter, so I called Ann before she came and asked her to stop in the supermarket and see if there was a whole wheat version, which there was, and I wolfed down four slices, with a big mug of tea. My food tastes are tending more and more toward what I refer to as "baby food"--things that are soft or creamy or otherwise just easy to eat. I ate the last of the potato casserole yesterday and enjoyed it every time. I'm eating lots of jello because it feels so good on my throat, and maybe later Marty and I can make some pea soup, which we both love and which is easy to make.

I feel so weak and just want to stay in bed.

Tired of being tired

I woke up in the middle of the night, about 3 A.M., with a bad coughing fit. I'm glad Marty was here because it would have been much scarier alone. I just couldn't stop coughing--after about ten minutes Marty got my cough medicine, but when I'm that far into a coughing spell the medicine takes about half an hour to work, and in fact I had to take a second dose before the coughing finally stopped. Both of us were exhausted, and we got back to sleep and slept till after nine. Because of coughing that much, I've been tired all day, even after a few naps. And every time I cough, I'm terrified that it will get out of control again. I did start coughing a little in the middle of the day, and immediately took some cough medicine to short-circuit another possible coughing spell.

I've barely been out of bed today. Acupuncture was cancelled because of the snow (we wouldn't have gone in any case)--I think there must be at least eight inches. Right now I have a splitting headache--I hope I can sleep soon and wake up feeling a little better.

I called hospice this morning because I wanted to talk to Kathy about the coughing. I got another nurse who said he'd leave a message for Kathy but I never heard from her. She's scheduled to be here tomorrow so I'll talk to her then--not that I think there's anything more that I can do for coughing besides cough medicine.

I'm out of energy and out of patience.

It's great to have company

When I woke up this morning I was very short of breath. Just making myself a cup of tea was exhausting, and once I had my tea and something to eat I went right back to bed. I wanted to rest until my friends Celia, Angela, and Lauren came for a visit. They had driven up from New York City yesterday evening and stayed in a hotel nearby; Celia called around nine to say that Lauren was still sleeping but they would be here soon, and I just rested until they arrived at about eleven.

Since the weather forecast was for an overnight snowstorm tonight that might leave as much as a foot of snow, I called Marty and told him I needed him to sleep here tonight, since otherwise he might have trouble getting here tomorrow (I don't know if we'll be able to get to acupuncture tomorrow). He said he'd pack up what he needed, but that he'd be going out this evening for a meeting.

I was in bed when Celia, Angela, and Lauren arrived. As with most of my visitors, I told them to just let themselves in through the back door, saving me from having to walk through the house to open the front door. They brought me some nice gifts, including a copy of "New York City Voices," which calls itself "A Consumer Journal for Mental Health Advocacy," and which Andrea edits. Another gift, which I know I will get a lot of use out of, is a small pillow filled with some kind of little beads that conform to the shape of my head, just the right size to wedge behind my neck, and with an adorable picture of teddy bears on it! A third gift is an amazing book called Magic Eye, which contains computer generated pictures that become 3-D by staring at the images. And they also brought a selection of drinks and snacks.

We moved into the living room, where I lay on the couch (using the new pillow) and they brought in chairs from the dining room. They are all active in New York consumer/survivor groups, and said that New York state finally has a functioning coalition, which has been a long, hard struggle, but which seems to be working well. We talked about how hard it is to fight for alternatives when the mental health system has such a stranglehold not only on the money, but of the underlying beliefs that people with psychiatric labels don't know what they need and can't be trusted to operate services. Marty arrived and joined us (he had met Celia at the MindFreedom conference in Connecticut last summer), and after awhile suggested he go out and pick up some lunch for all of us. He got out a Chinese restaurant menu, called in an order, and went out to pick it up. It was snowing lightly but the forecast is that the heavy snow won't come till tonight. After we ate, everyone opened a fortune cookie, and I got the most amazing fortune, under the circumstances: "If you don't have time to live your life now, when do you?" I'm definitely taking this as a good omen!

After lunch they left to drive back, hoping to beat the storm (which is coming from the south), but with plans to come back in April and shoot some video. All three of them talked about how inspiring my work has been and how they thought it was extremely important to have it to show to people who might not get the chance to hear me speak in person. Marty and I also told them that when they come back they should definitely bring us some authentic New York cheesecake!

I've been resting since they left, but to my surprise haven't fallen asleep (yesterday I kept drifting off)--I put on the TV and caught the old Hitchcock thriller Vertigo right from the beginning--a very dark and intense drama, although definitely reflective of mid-twentieth century psychololgical concepts.

As almost always happens, I get really energized by having company, and felt so much better than I had when I first got up, and have continued to feel well for the rest of the day. I get very short of breath whenever I get up, but I have managed to do a few things. I ate a huge lunch, so I probably won't need more than a light snack tonight.

Maybe it is time to try to take a nap!