Tired and bored

I feel better today than yesterday--at least I didn't wake up with a sore throat, a headache, and a toothache, as I have for the past two days, although this evening my throat feels sore again. I've been napping on and off a lot of the day, as I didn't get a good night's sleep. I've been alone a lot of the day, which was all right as I had enough energy to cook breakfast, and eventually give Oliver his medicine and feed both cats. I was also able to do all of the Saturday puzzle, and I've gone back to Friday's and filled in a bit more.

Marty was gone a lot of the day, as he needed to help Donna move some stuff out of a storage unit. I was supposed to have some visitors this afternoon, Kathy and Joe who are local psychiatric survivor activists, but Joe called this morning to say that Kathy was sick, so they put off visiting till next weekend. I didn't mind as I slept a lot of the day. Marty got here around four, but he's exhausted and has mostly been sleeping since he got here. Once he's awake I guess we'll do the puzzle, and figure out what to have for dinner. For lunch I had more of my potato casserole, which I've been eating for lunch all week, and really enjoying. I've improved it by adding vegetables--broccoli for a couple of days, and today green beans. I need to think of something else to cook in quantity that I can eat for days on end--something else that's comfort food and reheats well.

I am just so tired of this. Getting weaker in such tiny increments is frustrating. I guess it's just going to go on this way for months. I need to find ways to distract myself--there's so little to watch on TV, and I can't seem to read much beyond the newspapers and the New Yorker. Maybe I should go to the library and see if I can find something interesting. I usually just peruse the non-fiction new books and take out anything that piques my curiosity. I've actually found a few books that really engaged me, although I've ended up taking a lot of them back unread or partially read. A couple of months ago I found a fascinating biography of Anna Leonowens, the woman made famous by The King and I, whose actual story is not what she presented to the world. She went to great lengths to conceal the facts during her lifetime, because she was not an upper-class Englishwoman, and in a class-based society she needed to claim that status. The book is called Bombay Anna, and I've been recommending it to lots of people. Another book I really enjoyed, My Father's Paradise, is about a community of Jews in Kurdistan that was so isolated they still spoke Aramaic! Florence is reading it now. It would be good if I could find another book to engage me the way these two did.

Tomorrow my friend Celia is visiting from New York, and a little while ago my friend Sally, from Berkeley, called to say she will be visiting the weekend of March 14th-15th. I've got to work on having more people visit, as company always cheers me up. I had an e-mail from Susan the other day that said she'd be coming one day soon--she's been one of my most regular visitors. And I've asked my friend Dorothy if she could come once a week for a few hours, and she's working out with Marty some times when she could be here that he's busy. Celeste, the hospice social worker, thinks I should have someone here as much as possible. I told her I don't mind being alone, but she doesn't think that's such a good idea. Nancy, the chaplain, said she would stop by one day next week.

Julie was going to help me with some paperwork today, but instead she had to take Vivian, my youngest granddaughter, who is seven, to the doctor because she was having a severe asthma attack, and it ended up that she got taken to the hospital and has now been admitted, at least for overnight, so Julie will be staying with her there. Julie sounds pretty calm about it, and she said Viv is dealing with it very well. Apparently Winchester Hospital is very kid-friendly; Julie said when they had to take Viv to X-ray, instead of taking her on a stretcher, they had a little wagon!

Marty is awake now, and we need to figure out what to do for dinner. Maybe I should try to get dressed and go out, although it seems like a lot of effort. But it would probably improve my mood.

A hard day

I woke up this morning really worried that I was coming down with something. My throat hurt, my head hurt, and the teeth in my lower right jaw hurt. The last thing I need right now is to have to go to the dentist! Ann was scheduled to come at eleven, Kathy called to say she'd come around noon (she's always a bit later than she predicts), and Sy, my hospice volunteer who hasn't been able to come for awhile because his wife had surgery and then complications, had called yesterday to say he could come today, so he was scheduled to come at two. Marty really needed to go help his friend Donna (who has been having a very hard time since her brother's unexpected death), and knowing I wouldn't be alone made it logical for him to go today.

Last night was one of those nights when I just didn't feel like going to sleep till quite late, so when I woke up it was after nine. I was able to make myself some tea and something to eat, and then just stayed in bed till Ann arrived. I tackled the Friday Times puzzle, but didn't get very far (the Friday and Saturday puzzles are always tough), so I put it aside to do with Marty later. I really love doing the puzzles with him--we get silly and make lots of horrible puns and laugh a lot, and laughter is so important.


I didn't have a lot of things for Ann to do, but she did some odds and ends, and it was good just to have the company. I think when she comes on Tuesday I'll have her put fresh sheets on the bed, which is a big job I can no longer do. And sometime this weekend I need to take a shower. It always feels so good, but it takes a lot of effort.


Kathy arrived about twelve thirty, and we had a good talk. I asked her if she thought I was sicker or weaker than I was when she first started seeing me, and she said that she thought my "down" periods were coming a little more frequently, and were a bit more intense. But she also said that I was a long way from dying, because, except for my COPD, my body is basically healthy and strong. I guess in a way this is good news, except that it means that everything will be really long and drawn out, and I'm not sure that's the way I'd choose--to get weaker and sicker inch by inch. The upside is that I'll get to enjoy spring, and maybe summer too. It will be so nice when I can open the door in my bedroom that leads to my secluded porch, where I always have breakfast and lunch once it's warm enough, surrounded by flowers in my windowboxes and hanging baskets.

I asked Kathy to give a message to Nancy, the chaplain, as these are issues I would like to discuss with her, and she called during the afternoon to say she'd be by some time next week. I enjoy talking to her and I hope she can help me sort out the very complicated feelings I have about how things are going.

Because I hadn't heard from Sy, my hospice volunteer, for awhile (he had called a few weeks ago to say that he hadn't been able to come because of his wife's condition), I had asked for another volunteer, and a few days ago a woman called (I can't remember her name) and we set up an appointment for next Tuesday. So it was somewhat surprising when Sy called the other day and said he could stop by today. I'm not sure if I'm going to end up with two volunteers! When Sy was here, he saw the Times puzzle that I had started, and I showed him how little I was able to do. After he left, I took another look at it, and, as often happens, was able to fill in a lot more, although there's still plenty left for Marty and me to work on.

I tried to take a nap, but wasn't able to drift off, so I'll probably go to sleep pretty early tonight. For some reason, I often feel best toward the end of the day, and today is no exception--I feel much better than I did when I woke up this morning. I'm sleepy in a pleasant way, so I may try to go to sleep pretty soon. I hope I don't wake up with my teeth aching again.

Frustration

I'm having another lousy day, feeling very short of breath and weak. Thursday is massage day--Lisa arrived at eleven and spent a long time massaging my feet and head, which was extremely relaxing. When she arrived I had a headache, and when she was finished it was pretty much gone. Also, when I woke up this morning I had a toothache--it hurt in my lower jaw when I bit down, getting me worried about whether, with all this other stuff going on, I was going to need to go to a dentist. That's something I don't need right now.

It has now been three months since I've been in hospice, and I'm not sure just how much sicker or weaker I am now than I was then. On the one hand, I keep saying I want to live to see spring; on the other, I feel all this is taking just too damn long. I'm tired of this. There's less and less that I can do, and less that I care about doing. I've pretty much lost interest in reading, except for the newspapers and the New Yorker. I'm watching too much TV. At least I can sleep; after a lifetime of being a troubled sleeper, I get a sound eight hours or more almost every night, and usually get in a nap or two during the day.

I'm still able to do some things, like make simple meals for myself (I've been eating the potato casserole for a couple of days now), make jello, even clean the cat box, which I did yesterday. The cats stare at me in the morning until I feed them, but they're pretty patient (I'm lucky they're such mellow cats, who love to cuddle). I can give Oliver his medicine (again, I'm lucky that he doesn't resist much). Once in awhile I can even take a shower and get dressed. I'm going to try to keep going out for acupuncture as long as I can, but I've given up on trying to get a pedicure, at least for now. Getting dressed is such an effort.

I suppose if I really was much sicker and unable to get out of bed, I wouldn't like that, either, and the way things are now would seem good. But right now I just feel frustrated. I don't know what I want, but I don't like things the way they are.

Dependence and independence

In a comment to my last entry, Susan wrote: "So what does your emotional difficulty with needing help mean to the model of the mental health system? 'Independence' has never meant doing everything for yourself, sick or well--none of us really can. It has always meant deciding what was to be done, when it concerned you, and making choices and having your preferences respected. What you retain is the direction and the control at the core of independence. Or am I clueless?"

These are, of course, issues that I have been struggling with as I become weaker and need more help. Last week, when Ann came on a day when I wasn't able to do much, I made the foolish mistake of telling her to go home. I had been planning to have her help me cook something, which I wasn't feeling up to doing, so instead of being able to alter my expectations and have her do a bunch of things she could have done without direction (emptying the dishwasher, putting other things away) I decided I didn't need her at all. This was certainly a very poor attempt at being "independent."

Ann was here again yesterday, and I was having a good day, so we were able to cook together. But I also discussed with her what had happened the previous time, and how she could help me by pointing out when my trying to be "independent" was actually working against my own needs. One of the reasons I think things will work out with Ann is that she is someone with whom I share values--she's not just a hired pair of helping hands. Having someone who is dealing with recovery from serious mental illness, with whom I can discuss things openly, is as important, or maybe more important, as just doing tasks.

Which brings me back to hospice philosophy, and how I want to see those same values in a mental health system which still values compliance over independence. When I moved myself out of the doctor-based medical system and into hospice, I was deliberately choosing quality of life as my prime value. Going in and out of the hospital, having tests and procedures ordered by doctors, was a loss of control that eventually seemed to me to have reached a point of diminishing returns. That's why, when I shifted into hospice care, I felt such a sense of peace. It's fine to undergo all that medical stuff if it has the ultimate result of improving quality of life, but once it became clear to me that it didn't benefit me, it felt good to give it up. Just the thought that no one will be sticking any more needles in me--in the hospital, I don't think more than four hours would go by without someone having to stick me for something--feels so good!

I'm going to have to learn how to transition to being more needy, more dependent on others, while still maintaining the ultimate "control" that whatever happens is because it's something I want. If I want to remain at home, which I most certainly do, than I will need to accept more help and recognize it not as a loss of control but as helping me to keep the ultimate independence of having my basic decisions recognized and supported.

The mental health system has learned to speak the language of recovery, but without really accepting what it means in terms of changing practice. Helping people to recover means helping them to fulfill their own dreams, moving away from compliance as a prime value and toward a much more complex kind of service that is individualized and which allows people the dignity of risk.

Yesterday was a good day. I felt strong. When Ann arrived we spent more than an hour cooking a big cassarole scalloped potatoes with ham, a recipe I saw in last week's Boston Globe and immediately knew I wanted to eat. I'll be eating it for the next few days, but I don't mind eating the same thing every day if it's something I like, and this is comfort food for me. Ann also helped me fold and put away some laundry, and we also talked about she could be most helpful to me as I become weaker.

In the afternoon, I had an e-mail from my friend Val--she and her colleague, Steve, had been here the day I was so sick and couldn't eat, or even get out of bed--suggesting that they reschedule for that evening, and it worked out great. Val arrived with a bunch of good stuff from Whole Foods--eggplant parmesan, barbequed chicken, Caesar salad, broccoli, and ice cream. Steve arrived and we started to eat, as Marty had said he'd be a bit late, but he got here just a few minutes after we had started eating, and we had a lovely time talking about all kinds of things and drinking some wine. They left shortly before nine as they wanted to get home to watch the president's speech.

Marty and I watched the speech together, but I was tired and toward the end of it drifted off to sleep several times. But I did hear most of it--Obama was very impressive, outlining the depths of the financial crisis we are in, and his proposals to turn things around.

Unfortunately, this morning, for some reason, I'm very short of breath and it's hard for me to do much. It's frustrating, since I was feeling so good yesterday, but I just have to roll with it.

Feeling stronger

I woke up this morning knowing it was going to be a good day. I took a shower, for the first time in a week--it felt so good to be clean! It made me a little tired, but nothing I couldn't handle, so different from just a few days ago when any time I got out of bed I just needed to crawl back in.

Acupuncture always makes me feel good. I have no idea what long-term effects it may have, but I'm hopeful that it will be good for me. Even if it's only the placebo effect, it has value. I always leave the session with a sense of calmness and peace.

We stopped for lunch and by the time we got home I was tired, but not exhausted. So I'll probably spend the rest of the afternoon just resting and taking it easy. I think I'll stay dressed for the rest of the day--I spend so much time in my robe. I love my robe--I actually have two soft fleece robes, one pink and one mint green--but being dressed makes me feel like less of an invalid.

Yesterday was the first time in a long time that I spent the whole day alone, and I felt quite comfortable with it. I was able to get up to make my tea, to have lunch, to do some straightening up. There are times when I can't do those things for myself. I'm going to have to work on my head about how it feels to need more help, not to be able to do things for myself. Right now, that's very difficult emotionally.

Maybe it's time for a nap.

A much better day

I have much more energy today, comparatively speaking, of course. After going to sleep so late, and then being up in the middle of the night, I slept most of the morning. Eventually I got up and made some tea, and then was able to tackle a big mess that had accumulated in the kitchen (a lot of spoiled food that needed to be thrown out), which gave me a feeling of accomplishment.

The hospice nurse, who told me yesterday that she would stop by about nine called instead (waking me) and I told her I was feeling better, so she said she would call later to check in (I was able to get back to sleep after that). She called back a few hours later and said that it sounded like I didn't need a visit, but I should call if I needed anything. I'm coughing a lot less today and in general feel very different from the way I have the past two days.

Tomorrow is acupuncture, which I'm looking forward to. If I'm feeling strong enough, we usually combine that with going out to lunch. Doing simple things has taken on increasing significance as my life narrows down--just getting out of the house is an adventure these days. There's supposed to be a combination of rain and snow this evening, which I hope will be mostly rain, as snow creates additional difficulties.

My mood, of course, has lifted as I've started to feel better. When I feel too weak to get out of bed, dying doesn't seem like that bad of an idea, but when I'm feeling stronger I'm much more focused on living.

Bouncing back again

I didn't realize how late in the evening it was when I mentioned to Marty that I was getting hungry and thought it might be nice to have some Chinese food, and then suggested going out to a restaurant, which he was delighted to hear. He always thinks that getting me out is good for me, and I think it surprised him to hear me say it since I'd been feeling so weak and low energy all day, but I said that, although I thought it might be physically difficult, it would also be extremely good for morale. It was already after eight, but I managed to get dressed without getting too exhausted, and we drove to a nearby Chinese restaurant.

I figured I'd be tired and uncomfortable sitting up, but I had a lot more energy than I expected. When I was getting ready to leave the house, I switched myself from the big oxygen tank to the little portable (which fills from the big tank), and discovered that the big tank was really low (or possibly empty--I'm going to have to ask the oxygen guy when he comes on Wednesday what the orange light means). So it's possible that I may not have been getting oxygen during part of the day (I'm sure there was still sufficient oxygen when Kathy checked me out on Friday, since my saturation level then was 98%). I now have two tanks so when we got back from the restaurant we switched over to the other one, which is full. When he was last here for his regular tank fill, the oxygen guy (a very pleasant fellow named Jordan), delivered the second tank, saying that the company wanted to switch to coming every other week--until then I had only one tank, although I of course also have the portable concentrator.

For whatever reason, I felt good in the restaurant and ate a reasonable amount of the huge dish of Singapore noodles that I ordered (and took home the rest). Although it's quite cold out, I just had to go from the house to the car, and Marty found a parking spot directly across from the restaurant. He asked if I thought I was able to walk across the street (otherwise he would have circled around to drop me directly in front), and I said I didn't think it would be a problem. When we left he did tell me to wait inside while he went and got the car and picked me up directly in front.

Again, although I expected to feel totally wiped out and just wanting to climb back into bed, I felt surprisingly good. Marty came in with me as there were a few things that needed to be done, but I knew he was very tired and he left quickly, promising that he would go to sleep right away. I got undressed and ready for bed, but I wasn't all that sleepy (having taken two long naps during the day), so I watched TV for awhile before trying to get to sleep, and then slept for only a few hours. It's now about four in the morning and I'm definitely going to try to sleep some more. I feel in much better spirits than I did before going out--maybe I'll be able to do some cooking later. I found a recipe for a potato, cheese, and ham casserole that sounds delicious--I was going to make it with Ann on Friday but didn't have the energy. Marty said he would cook with me, which is sweet of him as it's traife (non-kosher), so he won't eat any of it. It will be a large amount but it's one of those things that I can heat portions of for several days.

Slowing down

I feel better today than yesterday, but I'm still noticeably weaker. As soon as I get out of bed for any reason, I immediately just want to get back in bed, and I'm most comfortable there. I've finally got the computer set up so I can use it on the bed table, and it's much easier and less tiring than sitting up in a chair. Whenever I feel that I'm going downhill, of course I immediately start wondering if it's temporary or if it will come back. I've slowly adjusted to all kinds of losses--I can do so much less than I could even a few months ago, and I will adjust to this, too. I'm working hard to keep my emotions on the surface; not to bury them or tamp them down, but to cry when I want to cry, to be angry when I'm feeling anger. And I am angry--I've been dealt a pretty rotten hand, and all I can do is play it out as best as I can. I always figured on living to be pretty old. At least I got a better deal than my mom, who died at a shockingly young fifty-six--looking forward to retirement and travel after working hard all her life, and she never got to enjoy any of that. I've had a much better life than she had, and I should be grateful for that. I've gotten to travel all over the world; I'm even famous in my big fish in a very small pond kind of way.

When Kathy was here yesterday she said she'd have someone from hospice call to check in on me. I'm not sure if anyone would have called, but in the early afternoon I called and spoke with a nurse named Lisa, who asked me a few questions about how I'm feeling and said she would stop in to see me tomorrow morning. I've been coughing up blood-tinged mucus all day, which always scares me a little, even though I've been doing it on and off for years.

Sitting here in bed it's easy to feel that I could get up if I wanted to; that I could do various things around the house. It's only when I get out of bed that I realize just how weak I am. I'd love to take a shower--it would feel so good to wash my hair and be clean all over, but it also seems like it would take more energy than I have right now.

Sometimes it's tempting to think about going to stay in the hospice house, with its twenty-four hour staffing, but it's not realistic at the $200 a day out of pocket cost (that's the part that's not covered by insurance). I just don't have enough money for that. And I couldn't have the cats with me. There's something about being at home that, with all its inconveniences and difficulties, is better than any institutional setting, and the hospice house, no matter how nice it is, is still an institution.

It's supposed to snow again tomorrow. Will it ever be spring? At least the days are getting longer.

A rotten day

After feeling so strong most of the week, it was so discouraging to wake up this morning feeling extremely weak and tired. I have spent almost all day in bed, a lot of it sleeping. Kathy came this morning and she suggested that I put on the bi-pap, which helped, and after she left I think I slept for several hours. I had meant to call to cancel my pedicure appointment, and didn't realize how late it was until the woman from the salon called to ask if I was coming. I apologized to her for not calling, and then I think I went back to sleep again.

Days like today make it much harder to focus on the positive. Somehow, I need to find a way to acccept the idea that I'm only going to become weaker and weaker. One of these days when I go out, it's going to be for the last time. I want to see spring come. A few mornings ago when I woke up I heard a bird chirping, but it's still very cold, it snowed a little bit last night, and I think it's supposed to rain or snow over the weekend. I want to see the trees turn green. I want to see flowers. Yesterday when Marty arrived, he brought not only groceries, but a big bouquet of flowers, which made me feel so happy. He knows the things that make me feel good.

Kathy said she'd have someone from hospice call tomorrow to check in and see how I'm feeling. I just hope I wake up feeling better. It's strange how I can tell when I wake up, even as I am just opening my eyes, what kind of day it's going to be.

The good things

When Nancy, the hospice chaplain, was here yesterday, our conversation ended up being largely about the things I do to try to make myself feel good. For example, she complimented me on my long polished fingernails, and I told her I like to keep them that way because it's good for morale. I mentioned to her that on Friday I am going out to get a pedicure (I can do my fingernails myself, but my toenails are quite another story), which is another morale booster, and she told me that she has been impressed with the way I seem to be able to focus on good things.

Before I got into hospice, when I was cycling in and out of the hospital, I was deeply depressed a lot of the time, a depression that really lifted when I became a hospice patient. I think a lot of it has to do with a feeling of control, that I am now making the decisions about what happens to me. I know that was true of my dad when he became a hospice patient (unfortunately far too late in the course of his illness, but that's another whole story)--he was a control freak who regained control of his life, and the change in his emotional state was amazing. There are few things that leave a person feeling more powerless than being a hospital patient, and I feel so deeply grateful that I don't have to deal with hospitals any more.

I try to structure my days so that there are as many enjoyable things as possible. Of course, this is easiest when I'm feeling comparatively strong, and difficult to impossible when I'm feeling lousy, but little things like my morning cup of tea and doing the crossword puzzle usually get the day off to a good start. Today I had a great visit from an old friend, Bob--we were trying to figure out how long it's been since we've seen each other, and it's probably somewhere between fifteen and twenty years! It's sad that it sometimes takes bad things to get people together, but it has been great hearing from so many old friends (the other day it was a phone call from my friend Tanya in California, another person I've been out of touch with for years--although mutual friends have kept us informed about major events in one another's lives). Bob said he'd like to come back soon with a tape recorder and interview me about some of the history and philosophy of the psychiatric survivor movement, which is something I love to talk about.

David Oaks (mindfreedom.org) was supposed to interview me last week (on tape) for his Internet radio show, but he had technical difficulties, so we will be doing that later this month instead (a joint interview with Dan Fisher, whom I worked with at the National Empowerment Center [power2u.org]). And Marianne, one of my Boston University Center for Psychiatric Rehabilitation (bu.edu/cpr) colleagues, will be here next month with some B.U. video people to do some interviewing as well. Still being able to function as an expert and away from my identity as a sick person is another thing that is very good for morale.

I mentioned to Marty today how lucky I am that, unlike so many people with fatal diseases, I am not dealing with pain. Until last July, when I had the radio frequency ablation procedure that totally ended the excruciating pain I'd been experiencing for the previous two years in my hips and knees (which was unrelated to my primary medical condition). So I know from personal experience how pain just totally shuts out awareness of just about everything else, and I am deeply grateful that it's not part of my current experience. Not being able to catch my breath is not fun, and it can be deeply scary, but (at least so far), if I stop doing whatever I'm doing, get into bed, and, if necessary, but on my bi-pap machine, my breathing eventually smoothes out. When I go to sleep at night, the first few minutes with the bi-pap feel so good; I can feel my body relax as my breathing becomes more deep and even, as the machine pushes air into my lungs.

Today my massage therapist, Lisa, was here for her weekly visit. We missed last week because she'd just had some wisdom teeth out, and when she was here the previous week I was still feeling very sick from that episode when I think I had a stomach virus or something, and she just sat on the bed and lightly rubbed my legs, but today she set up the massage table in the kitchen and did a lot of deeply relaxing work on my head, neck, shoulders, and chest, designed to make me feel more open and able to breathe more deeply, and I've been feeling the positive effects all day.

When Nancy left yesterday, she remarked on how much she enjoys our visits, and how much she feels she is learning from me! I'm looking forward to her next visit, as I can discuss things with her that are hard to bring up with many other people. All of the hospice people I've dealt with so far, Kathy, my nurse, Celeste, the social worker, and Nancy, have provided such a deep level of comfort and support, and have always answered all my questions with honesty and respect. If only the mental health system could work that way!

Bouncing back

On Monday morning, I was really scared that the trip had pushed me down to a permanently lower energy level, but since Monday afternoon I do seem to have recouped, which is a relief. Little things still tire me out--getting out of bed this morning to make a cup of tea and have something to eat took a lot out of me, but at least when I rest in bed for awhile I'm able to get up and do the next thing that needs to be done. I told Marty on the phone that I would wait for him to get here so he could feed that cats, but then I realized I could manage it. Oliver, my fourteen year old orange long hair, needs to get medicine before he's fed (he has a thyroid condition), so I did that and then gave him and Gilbert (an eight year old grey tortoise-shell longhair) some canned food, which of course they devoured. They are, fortunately, very sweet cats and just wait patiently--so many people have told me that their cats wake them early in the morning demanding to be fed, but when I wake up both cats are usually sleeping peacefully on the bed, and when they see I'm awake, they (at least initially) seem more interested in getting tickles than food!

The guy from the oxygen company was here and swapped the portable concentrator that stopped working for a new one, which he said is an improved model. It's kind of scary that a machine on which people are so dependent can be so fragile, but he said the manufacturers are continuing to improve them. I don't use the portable much at home, as I also have a big oxygen tank on wheels that doesn't need to be plugged in and is completely silent, so most of the time I am attached to that with fifty feet of tubing, which allows me to walk all around the house. And most of the time when I go out, I use a small portable that fills from the tank and will run for about six or seven hours--it's the size of a small handbag and hangs from a shoulder strap (it can also be worn as a waistpack), so it's just for longer trips that I need the portable concentrator.

I'm looking forward to a visit from Nancy, the hospice chaplain, this afternoon. As I get sicker, I've been thinking more and more about what it means to die, what it feels like, whether I will know that it's happening...so many questions. I was with both my mother and my father when they died--my mom died an awful hospital death, but my dad, who had hospice, died peacefully, in his sleep, exactly the way he always said he wanted it to be. My mom died much too young, at 56, from breast cancer, and when my dad brought up hospice as an option she rejected it totally, interpreting it as him "giving up" on her. So she kept going in and out of the hospital and eventually died there, although at least we didn't end up with her being hooked up to all kinds of machines, so I suppose it could have been even worse.

Meanwhile, I continue to try to focus on making the most of what I have, being as comfortable as possible, and enjoying the things I can. Yesterday, when Ann, my PCA was here, we got all the things off the bed (which tends to pile up), and she stripped the bed and washed and dried everything, including the duvet cover and all the pillow shams (which, unlike the sheets, hadn't been done in a long time), and got it all made up with fresh sheets, which feels really good. Yesterday Marty and I spent an hour or more laboring over last Friday's New York Times crossword, and we still weren't able to finish it, but we certainly had fun doing it. On Monday, we did the Sunday puzzle, which was pretty easy but fun. I know the Saturday paper got delivered while we were away and maybe got put onto the recycling pile (I know I had Ann put a lot of old newspapers on the pile)--if we can find it, maybe we'll try tackling Saturday's puzzle. When we first met, it was great to discover that we were both fanatically devoted to the Times puzzle.

I don't have the patience to read much more than the newspapers and the New Yorker--the new issue of which should be in the mail today or tomorrow, and Vanity Fair, which arrived the day we left and I've been dipping into since we got back. I've read a few books in the last few months but have had trouble finding things that pique my interest. When I'm in the library (my chronic pain support group meets there), I usually go straight to the new books section and pull out whatever looks interesting, but many of the books end up going back unread or partially read, although I have found a few that I found absorbing. But there are many more that I've started and then just never went back to.

My old friend John just sent me some CD's of his original music, so maybe I'll spend the afternoon listening to those.

My weekend away (Part 2)

Sunday morning we lazed around the hotel room. Marty took a shower, and while he was in the bathroom his cellphone rang. He came out of the bathroom, just missing the call, looked at the caller ID and said it was a number he didn't recognize. We didn't think more about it until an hour or so later, when my son-in-law Jim called me to say that somehow the button on my Lifeline machine had been pressed (the only thing we could figure was that somehow the cat did it), and when I didn't respond to the page, and the Lifeline service was unable to reach either Julie (my daughter--as it turned out, she was in the shower too and didn't hear her phone) or Marty, they had called an ambulance and a police car! Julie and Jim heard the commotion (they live upstairs from me in a two-family house) and were able to explain to the emergency personnel that I was away and not lying on the floor helpless.

Getting all the equipment out of the room and back into the car took awhile, and, once again, we got lost in Providence, which seems to have no signs directing people to the interstate highway, but we finally found it. We had the oxygen machine plugged into the car charger, which is supposed to charge the battery, but when we stopped for lunch, at an Olive Garden restaurant just over the Massachusetts border in Attleboro, we unplugged the machine to take it into the restaurant and discovered it had no charge at all, and was emitting an emergency signal. We tried plugging it into the wall, but that didn't work either, and the machine continued to beep. The restaurant people were terrific--they kept trying to get the machine started (it would run for a couple of minutes at a time, then conk out again)--and they decided to call the rescue squad. Needless to say, I was panicky and scared and gasping for breath. The fire department guys who showed up were great--they put me on an oxygen cylinder, and said we should just take it home with us and get it back to them at some point (we were probably thirty miles or so from home).

With all this, by the time we got home we were both exhausted, and I was wondering whether it had been a good idea to go on the trip. I went straight to bed, and asked Marty to set up my bi-pap machine (which I sleep with and which pushes air into my lungs), and promptly fell asleep for several hours. I slept through the night as well, but when I woke up on Monday morning I was feeling extremely weak, and was really scared that I had permanently depleted what little store of energy I have. But by mid-day on Monday I started feeling a lot better and stronger, and began to think that it had been a good idea to go away--that the change of scene had done us both a lot of good.

While I was lying in bed, one of my cats was sitting on the shelf over the radiator in the bedroom, which is where the Lifeline machine is, and he bumped into the machine and set it off, so I saw how easy it was for this to happen. At least this time, when the voice came on saying "What's your emergency?" I was able to tell them that I was fine and that the cat had done it, and the woman who was answering the call said, "As long as you're all right." We have now gotten things rearranged on that shelf so that the machine is well shielded from the cats and I don't think there's any way they can get to it, but I'm glad I saw it happen.

Today has been a pretty good day. Kathy, my hospice nurse, stopped in this afternoon, and the first thing she asked was how the trip had gone, and she was quite supportive of my conclusion that, despite all the difficulties, it had been well worth it. Nancy, the hospice chaplain, called today, and she will be visiting tomorrow. Talking with her has been really helpful, and I'm looking forward to seeing her. I have also asked for a new volunteer, as the volunteer who was originally assigned to me has only been able to come once in all these weeks (first he was sick, and then his wife had surgery). My dad was a hospice volunteer for many years (before becoming a hospice patient at the end of his own life), and I know what an important role a volunteer can play, so I'm hoping they can find me someone who will visit regularly.

My weekend away (Part 1)

I was nervous about traveling but decided it was worth the risks, and although there were some scary moments, it was definitely worth it (although I'm not sure I would have said that by the time we got home last night). I'll probably be writing about it in installments since so much happened and I have limited stamina for sitting at the computer.

On Friday morning, Kathy, my hospice nurse, came f0r her regular twice-weekly visit, and was very supportive of our going away. One of many things I love about hospice is how they fit everything into what I want to do, rather than trying to fit me into some prescribed role. I'm sure some medical professionals might have been all focused on the risks, but with hospice it's about making sure I can do the things I think are important.

We left on Friday afternoon, several hours later (of course) than we had figured on, and although Providence is just an hour away, it probably took us most of another hour to find the hotel, since the Googlemaps directions set us off on a wild goose chase. We have to travel with lots of paraphernalia--my scooter (which lives in the trunk of the car, so at least didn't have to be loaded on this end), my portable oxygen machine, both Marty's and my C-Pap machines, and assorted other junk. I thought to take 25 feet of tubing for the oxygen, but when we were finally getting set up in the hotel, realized I'd forgotten the little plastic connectors to connect the end of the tubing to the nasal cannula--a little piece of plastic the size of a fingernail, but being without it created problems, since the cannula tubing is only about six feet long. I called the oxygen company on Friday evening, and by Saturday afternoon they had delivered several of them to the hotel (along with lots more tubing), so at least I could move around the hotel room without having to drag the machine around (it's on wheels, but still...).

By the time we were settled in the room I was exhausted, so we decided to call room service and just call it a night. The room was big, handicapped-accessible (which meant it had a huge walk-in shower with a seat--really wonderful), and had a big flat screen TV. It felt good just being away, and both Marty and I felt happy and romantic. I suggested opening our Valentine's Day presents that evening, but he said we had to wait for it to be Valentine's Day for real.

We were planning on doing a bit of exploring in Providence on Saturday with some friends, but I woke up really tired, so we changed our plans to just meet our friends for dinner, and I actually slept much of the morning. Marty went out to the mall that was connected to the hotel, mainly to see if he could find some inexpensive shoe inserts since he'd somehow managed, in changing shoes for the trip, to put in only one of his custom-made inserts. His foot was really bothering him when he got back, but the inserts I think prevented things from getting any worse.

When he got back I was feeling a bit more rested and alert. Marty spent about an hour figuring out how to attach the oxygen machine to the back of the scooter, since otherwise he had to wheel it around while I drove the scooter, which was more difficult than it sounds. Once he had succeeded at that we exchanged our presents--I got him a book I was sure he would like, and he gave me a book as well, along with a box of chocolates that had a little bear attached to it. The bears are becoming quite a tradition--on our first Valentine's Day, two years ago, he got me a bear which has become quite an important part of my life--when I was going in and out of the hospital a lot (thank goodness that's over!), the bear, whose name, for reasons I am totally unable to explain, is Pinkypine, always came with me, and every time I got a needle, he got a squeeze. Needless to say, he got a lot of squeezes! A few months ago, he got me another bear, Bo-Bo, and now we have added this tiny new one, who I have named Elbee (for L.B.--Little Bear). We have a lot of fun playing with the bears and giving them voices and personalities--one of the great things about our relationship is how much we can enjoy being silly together.

Providence has wonderful restaurants, and we met our friends at one they recommended, and had a lovely evening. When we got back to the hotel, we opened a bottle of champagne that we'd brought along, and just enjoyed being together and able to focus on all the good things.

On the next installment I'll write about Sunday, when things didn't go nearly as well, but right now I'm getting tired and need to get back in bed for awhile.

Feeling strong

Since my acupuncture on Monday, I've been feeling good. Yesterday we got out for a few hours--it was so warm I didn't even need my winter coat, just a light jacket. Today I'm supposed to rest as much as possible to try to store up energy for our trip to Providence tomorrow. It's going to be nice to be away--the last time we tried to do this, when we were supposed to go to Alternatives in Buffalo in late October, I ended up in the hospital. I'm definitely much better now than I was then.

I'm not sure how much I'll be able to do, but I'll be able to retreat to the hotel room as necessary to rest up as much as I need to. I'll have to look today to find some nice clothes that I can still fit into--prednisone has given me more than just chipmunk cheeks!

Marty is having lunch with his friend Sharif, and since they almost always eat at the kosher deli, I have asked him to bring me a brisket sandwich, and I think I'll ask for some mushroom barley soup, too. Yum! I have declared my stomach officially back to normal.

A good way to be tired

It's after eleven and I'm headed to bed. I feel very sleepy, not the overwhelming exhaustion that I've been feeling so often recently, but just the good tiredness of having done things (even the very minor things we did). It seems like it's been such a long day. In a few minutes I'll be in bed, snuggled with the cats, slowly drifting off into dreamland--no nightmares tonight, I hope.

I'm beginning t0 eat more normally and I'm hopeful we'll be able to get out to a few of Providence's good restaurants. Just being away for a few days will feel good--a change of scene rather than these four walls. If she's feeling better, Lisa should be coming today to give me my massage, and I think I'm still feeling the good effects of Monday's acupuncture.

Feeling stronger of course also makes my mood go up. The trick will be to learn to stay calm when the body is going downhill...not sure if I can do that yet, but I need to work on it.

Getting outside on a nice day

The temperature went well up into the fifties today, and we managed to get out, although I was plagued with a miserable headache earlier in the day. But by mid-afternoon I was dressed and we went out just to run a few errands; it felt good just to be outside. I didn't even wear my winter jacket, just a light fall jacket, and we even had the car windows open.

When I first got into hospice I set a goal of living till Obama's election, then till the inauguration. Now I'd like to live to see at least the crocuses blooming. I am definitely declining, but very, very slowly, so I think that is a realistic target, and that I'll even get to set a few more beyond that. (Red Sox opening day, maybe?)

Yesterday, before acupuncture, Julie and I went to the bank to arrange things so either she or I can sign my checks (useful if I get too weak to do it myself), and today I arranged to liquidate the retirement account and put it into the bank, so I can draw on it as needed. Amazingly, in these weird financial times, the retirement account continued to gain value. I think--hope--this will give me enough money to live on in the time I have left (I still have my monthly disability check, alimony, and the rent/loan payment check from Jim and Julie). According to the will, anything left will then pass to Julie. I'm trying to make things as simple as possible. I still have to find and pay for a prepaid cremation service.

This little excursion has left me feeling extremely tired, but it's the good kind of tired that means I will sleep well. And I got some interesting calls today--Bernie Carey from the Mass. Association for Mental Health and Joan Kerzner of DMH are coming to visit next month, and Marianne and Bill are going to do a taping with me about movement history in early March. Also, Darby called and thinks she has located an archivist who may be interested in taking my (and Rae's) papers--I'm sure there's lots of gems there, but they definitely need to be sorted through. She's going to have the woman call me directly.

Marty and I are leaving for our weekend in Providence on Friday, early in the afternoon. It's only an hour's drive, so I should have lots of time to rest up before we might go out to dinner with some friends.

Acupuncture really is helping

After acupuncture yesterday, Marty and I stopped for some lunch. My stomach's still a bit iffy, so instead of the gourmet pizza place we've been going to for the past few weeks, we went to a very nice diner and I had a chicken salad sandwich (another thing I can usually eat). When we came home I needed to rest for awhile (I think I even dozed off for a bit), but then I spent much of the rest of the day out of bed, and when I was ready for sleep I felt pleasantly tired rather than exhausted, which I knew would lead to good sleep.

Today is going slowly, but I feel strong. Ann was supposed to come--I was planning on doing some more straightening up with her--but she called to say she feels she's coming down with something and didn't think it was a good idea to be around me. But I will try to get some things put away by myself.

When I'm in the acupuncture room, and when I leave there, I feel that I'm in an island of calmness and wellness...I'd like to see if I can sustain that feeling. Tomorrow is supposed to be a warm day and maybe this time Marty and I really will be able to get out for a little excursion. And on Friday we're leaving for Providence and a little Valentine's getaway, which should be good for both of us.

My nurse Kathy was here earlier--blood pressure is back down to normal, and she didn't hear any wheezing. These are good signs. I'd like to have a week as good as last one was bad!

Better and stronger

I didn't get a lot of sleep last night, but when I woke up I felt fairly sure I'd be able to manage a shower and getting dressed, so I could get out to the bank and to acupuncture. So now I have my bank accounts set up so that either Julie or I can sign checks, which will make things simpler if I'm feeling too sick to pay my bills (she is going to set me up to pay most of them on line in any case). And when I die all she'll need to do is take a copy of the death certificate into the bank to put the account into just her name--no lawyers or probate involved.

Acupuncture today has had a good effect--I was tired when we got home (we also stopped for lunch), and rested for a bit, but now I've been mostly out of bed for a couple of hours, which is always good for getting me the right kind of tired for drifting easily off to sleep. I've been plagued with nightmares the past few nights, although I was able to shake them off and get back to sleep pretty quickly. They were all doom scenarios--my bed catching fire, a stranger pulling me out of bed and choking me, stuff like that...no real problem to interpret what any of that means. At some point I am not going to be able to get out of that bed, and that's the simple truth.

The Hospice Foundation of America, has put a link to my blog on their page http://hfahospice.blogspot.com/, which I hope will draw more readers--each time I look, the number of registered readers is going up, and I know there are unregistered readers as well. I really do want to see people reading and commenting on this thing...it seems like useful work I can still do, even in my weakened state.

I'm still eating only a very limited diet, but it's all healthy stuff, and I expect I'll keep adding new foods a few at a time. Chicken pie, my all-time comfort food, is the main thing, and that's chicken and carrots and peas with some nice gravy and crust and no weird stuff. We went to a diner for lunch after acupuncture and I had a chicken salad sandwich with tomato on whole wheat bread. The important thing is to make sure not to upset my still somewhat delicate stomach (not my usual condition--I usually can eat just about anything).

I think, in fact, it's time to eat something now--probably some whole wheat pasta, and watch some TV. Obama is giving a news conference to try to get people behind his stimulus bill--the Republicans are acting like they forgot they lost the election! It should be interesting.

Disappointment

I had high hopes for today...it was supposed to be warm and Marty wanted to take me out somewhere. But when I got up to have breakfast (tea and cereal) I ran out of energy just eating it, and didn't even have enough left to give Oliver his medicine and feed both cats...I called Marty and he came over and did that, and he's been here all day. We have just been lying in bed, did the Sunday Times crossword puzzle and read the paper and watched TV, and I gave in to the blues (which I don't do very often) and had a good cry.

Right now even sitting at the computer is wearing me out and I'll head back to bed in a few minutes. I hope I have enough energy to get to acupuncture tomorrow.

Although I know on an intellectual level that I'm going to continue to get weaker, the reality is still so hard to deal with.

Feeling stronger

Today has been a good day. I'm back to eating some real food--still not my normal diet, but my old standby comfort foods, like baked potatoes, chicken pot pies, and tonight, blintzes with sour cream. (For those of you who don't know what a blintz is, my sympathies!) There's a local company that makes wonderful frozen chicken pot pies with no yuckie stuff--you even have to add your own veggies, as it's just big chunks of chicken with gravy and crust.

I've been out of bed quite a bit, although I get tired quickly and have to lie down after every little exertion. Tonight I'm planning to take a shower, which is both refreshing and exhausting, as Marty really wants to get me out of the house tomorrow, when it's supposed to hit 50 degrees! And Monday I'll need to go out again for acupuncture.

I am so lucky to have Marty in my life. When we met, I was an active person with a career that was still taking me around the world--I'm sure lots of guys would have bowed out when I turned into an invalid, but he has been a rock! We make each other laugh and that's probably the best medicine of all. We have a shared love of crossword puzzles, silly puns, music, good food, and good conversation...and best of all, he lives just a mile away.

"On Our Own"

So many of the notes I've been getting mention "On Our Own," often saying how much people cherish their copies, or how hard they had to work to find one, that it's frustrating that NEC hasn't ever gotten out the word (except on the Website) that they are available. When the book went out of print in the U.S., people were importing copies from England, but then MIND (the British Mental Health Association--quite different from the U.S. one!) let it go out of print as well. Since I owned the American rights, NEC was able to publish a new American edition, but because they're not a recognized publisher, it doesn't show up on searches, except as "out of print." So it's been hard to spread the word that it can be bought at the National Empowerment Center Web store (www.power2u.org), and is very much in print.

Of all the editions, it's the one with my favorite cover--the only one, in my opinion, that really carries the spirit of the book. It's a painting by an artist (and psychiatric survivor), very artistically representing a woman in transition. The U.S. paperback edition, the one probably people have seen the most, carries exactly the wrong message--a faceless woman in the shadows. I had no say in any of the cover art except the NEC edition.

Crashing

Wednesday was the worst day I've had in a long time--maybe ever. I was too weak to get out of bed, was hot and cold, and was incredibly sick to my stomach, without being able to throw up. Maybe I had a one-day flu or something on top of everything else. I finally managed to drink a few sips of tea in the mid-afternoon, and had sips of water and seltzer after that, but the mere thought of food made me cringe.

What made it worse was that Valerie and Steve were bringing dinner and we'd exchanged numerous happy e-mails planning the menu. Before they came, I told Marty that I didn't want to hear even the mention of food--the three of them could eat in the dining room, and they could come visit in my bedroom, but it was not the visit that any of us were expecting.

Julie came downstairs and called hospice and Kathy, my regular nurse, came to check things out. She gave me some morphine, which eases my breathing, but turns out to make the nausea worse--Julie called again, and they said to take some ativan to ease the nausea, and that did help. But the constant retching, and being hot and cold, were exhausting, and I kept drifting off to sleep (probably the best thing under the circumstances).

Yesterday I felt much better, just weak, and finally started eating--simple things like oatmeal, jello, ginger ale, and pasta, and today I feel back to where I was before this happened (and hungry, which is a good thing). It's 5 A.M. now and I've been up for about an hour--not surprising as I basically slept most of the last forty-eight! Eric and Laurie are visiting this afternoon, Ann will be here at eleven, and I made an appointment with the woman who is supposed to help me with my computer but I can't remember the time (I'll have to call her later and make sure I can fit her in). It's good that people will be here as Marty will be gone all day--he has to go help Donna with her car, among other things. He is terribly stressed out and I wish there were some way I could be less needy.

Anyhow, it's a relief to feel better, to get to the computer for the first time in days, and to discover that the blog has picked up even more readers.

Struggling with decline

I think I've been on a plateau this last little while, but now it feels like things are starting to tend downwards again, and I'm having a lot of trouble with that. It means being even more dependent on people, which is hard. Today I'm really going to try to work with Ann on the bed mess--the housecleaners put stuff in neat, but meaningless stacks yesterday (while Marty and I were out at acupuncture and lunch), but some of those are now on the floor, gettting knocked off when I rolled over. I don't really remember going to sleep last night--I never put on my C-pap machine or even took off my glasses! (At some point in the middle of the night I awoke briefly and discovered I was still wearing them, but I didn't realize about the machine till the morning.)

I guess the time has come to move the computer into the bedroom and set it up on the little table that fits over my legs when I'm sitting up, but I don't want to do that until all the other stuff is off the bed. Organizing has never been my strongpoint, and now it seems more difficult than ever. I did pay my credit card bills on line yesterday (a few days before the due date), and yesterday I deposited Howie's check so I can mail the mortgage check today. I need to draw some money out of the retirement account, which I'm reluctant to do but is now clearly necessary.

If only everything weren't so hard! But there are practicalities that need to be dealt with. Jim Henderson finally has all the signed documents for the will and the trust, but he can't set up the trust until the mortgage guy lets me know the status of the refi, and he was sick last week. And I still have to do the prepaid cremation thing--another detail that seems easy, but is emotionally difficult. Right now I think I'll go have some breakfast and read the papers.

Marty is taking Oliver to the vet this morning--he's developed a big bald spot on his hip, and every now and then (like this morning) he lets out a loud, strangled cry that seems to indicate he's in some kind of pain. He's fourteen, which is getting up there for a cat, but I hope Dr. Levey can fix him up as I know it would be devastating for me if he were to die now...I just want him to outlive me. I'm sure Gilbert would be lost without him and I can't see myself dealing with a new cat at this point.

Okay...spirituality

I usually describe myself as "the least spiritual person" I know. I am a proud third-generation atheist (it was great to hear Obama include "non-believers" in his list of people of different spiritual persuasions). But recently a number of people have commented on my calmness and acceptance as spiritual marks. I suppose it's all in the eye of the beholder.

Before I came into hospice, when I was still thinking mainly in terms of cures and doctors and hospitals, I went through several periods of deep depression. I felt that I just wanted to die, without going through all the steps it takes to get there. I think the turning point was that wonderful doctor at Beth Israel in October (whose name I wish I could remember) who was the first person to honestly answer my question: "Without a lung transplant, what's going to happen to me?" I think most doctors would talk all around the question, but she looked me in the eyes and replied, "Let's face it, without a lung transplant you don't have a very long life expectancy." Some people might think this would crash all my hope--instead, it let me know exactly what I was dealing with. It led me to talk with the palliative care team and to referral to hospice. It took away all the dishonesty that so often surrounds people with serious illnesses.

I can see now that this is a process...that my body will know what to do. Already, I know there are some days I can barely venture out of bed. I suppose there will be more of them, and I need to work at getting stuff set up so I can do more in bed. When Ann comes on Tuesday we really have to work at getting the mess on the bed organized. I already have a storage box (which Julie found for me) to keep stuff like current books, magazines, and newspapers, grooming stuff like hand lotion, my glasses case, the TV remote, etc., but things do seem to get strewn all over. I also have a bed table (which Marty bought) where I can eat meals, set up the computer, pay bills, etc. It sounds a lot more organized than it is, but I really have to work at getting it that way before I find myself even less able to be out of bed.

The one day at a time stuff really makes sense. Today, I can already feel, will be a good day. There's the Sunday morning papers to look forward to, Marty coming so we can do the Sunday New York Times crossword, and Chris and Shery's coming and bringing lunch. Later, there's even the Super Bowl, although it's "just a game" without the Giants. So, there's lots to enjoy. I don't need gods or prayers to make it happen (although I accept gracefully whenever anyone offers to pray for me--it couldn't hurt!)

I do have a somewhat funny story about someone praying for me. A few weeks ago one of my housecleaners (they are a lovely crew of three Brazilian women) asked me in very broken English if she could pray for me. It took me a few minutes to even figure out what she was asking, but once I figured it out I said yes, thinking she would go to church and light a candle or something. I wouldn't have had any problem with that, but it was quite startling when, instead, she burst into loud, ecstatic, beseeching Portuguese, with frequent references to "Jesu Cristo" and practically a laying on of hands, which seemed to go on forever while I both writhed in embarrassment and tried to act appreciative! Fortunately, she hasn't asked again. That's the kind of spirituality I don't need!

But if someone says "You're in my prayers" (as Nancy, the chaplain, often does), or "I'll light a candle for you," or whatever, I try to take it in the spirit in which it was offered. I don't see the point in getting into an argument about it. I just go on firm in my own belief that, when I am ready, I will go back into the eternal sleep that ended with my birth and will resume with my death. Until then, I've got lots of things I want to do, and I'm going to try to do as many of them as I can.