At last, a good day

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

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

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

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

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

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

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

So tired of being tired

I am so tired and short of breath today that I don't want to do anything. I was feeling weak yesterday, too, but having Dorothy and Laura come for a visit was energizing. I was still in bed when they arrived, but eventually they helped me into the living room. They brought great treats--a beautiful bouquet of autumn-toned flowers, pea soup, croissants, and fabulous cookies. It was great to sit and talk with them. Laura brought the award plaque from NYAPRS, which she added to the display of all my awards that Marty and Donna set up on the living room radiator a few weeks ago. They said that everyone at NYAPRS was talking about me and missing me--it would have been so great if we had been able to make it there.

I took a long nap this morning--not deep sleep, but just lightly drowsing. I had asked Ann to move my chair onto the porch, knowing I was too weak to go all the way to the living room (I had a hard time just getting back from the bathroom), but ended up just falling asleep in bed. Now I've been awake for awhile, and thinking about sleeping again.

I don't have much of an appetite--Marty and Donna had stopped at a KFC yesterday (he had gone down there to help her with her car, which had broken down), so I had two biscuits for breakfast. I wanted some chicken salad a little while ago, but Laurel looked and we're all out, so Marty said he would get some. He's been gone all day--first a meeting, then a dermatology appointment so they can look at his leg, and now he's picking up some groceries, and also some diapers that fit.

The saga of the diapers...sigh... The last batch Lauren had ordered for me were too big, so they leaked, and now she ordered smaller ones and they are too small! I've been using some that Marty bought at CVS (which were the right size), so he's going to pick up some more, and meanwhile Lauren is going to order the kind that have tabs at the side, so they can be adjusted, rather than the pull-ups. Such are the mundane details of being sick.

I hope I feel strong enough to go to the M-POWER picnic on Saturday, where I am getting still another award--the first annual Judi Chamberlin Award.

Very weak again

The day started out with me feeling very short of breath again. I did a nebulizer treatment pretty early, but it didn't help, and later I got into a big coughing fit, which hasn't happened in awhile. I also woke up too early, so was very sleepy, and I think at some point in the mid-morning I napped for awhile.

I've taken ativan, morphine, and the haldol gel, so at least I am feeling pleasantly doped up, which is far superior to feeling agitated (not nearly as agitated as a few days ago, but still very unpleasant). I'm hoping to fall asleep again.

I'm so glad I had a shower yesterday. I just have to seize those moments when I feel up to doing something (taking a shower, getting out of the house, or whatever)--there's no point in making plans for "tomorrow," because I never have any idea what tomorrow may bring.

It would be great if I feel strong enough tomorrow to enjoy lunch with Dorothy and Laura, but I will just take each thing as it comes. Whatever happens, we'll have a good visit with lots of love going around.

Plans are also underway for David Oaks, who will be in Boston at the beginning of October. Dan is hosting a small dinner party at his house, to which Marty and I are invited, but if I'm not feeling strong enough to go out it will be moved here instead.

I have so many wonderful friends, and it's so good when people tell me what a difference I have made in their life.

Getting stronger again

Yesterday I was very short of breath, even just staying in bed, although I did eventually make it into the living room. Marty wanted me to go out with him (he had to bring Donna home), but I was feeling too tired to try, so Anne stayed with me while I dozed in my chair. I also got to watch two football games--the Patriots lost to the Jets, which was disappointing, but much more exciting was the Giants beating Dallas in the final seconds, so they are now 2-0, both victories against division rivals--what a good start to the season!

Today I'm feeling less short of breath at rest, so it was easier to get into the living room, and when Nancie arrived in the mid-afternoon she suggested giving me a shower, and after giving it a little thought I decided I could do it. I'm not sure when I had my last shower, but it's certainly been awhile, and it felt so good to let the water cascade over me, to have my hair washed, and even to shave my legs. I spent the rest of the afternoon relaxing in my chair, but haven't taken any naps today, so I'm hoping to sleep well during the night.

Marty was out all afternoon--he had to see his podiatrist, who said that his foot is looking better, but I'm worried about his legs, for which he needs to see the dermatologist.

My appetite has come back and I've had three real meals today. A week ago I was so sure my systems were shutting down; now I seem to be bouncing back. I have no explanation for it--I'm not even sure it's what I want, but, as always, I'm just trying to go with the flow and take each thing as it comes.

Wednesday Laura and Dorothy are coming for a visit and bringing lunch--that's something to look forward to.

Two very different days

Friday was an awful day. I hadn't slept and was just ragged--I was so agitated I felt like I was jumping out of my skin. Between Marty, Julie, and Louise suggesting different medicines, I had adivan, haldol gel (which is rubbed onto my arm and absorbed through the skin), and morphine, and eventually I calmed down, but I knew how much I needed to sleep and just couldn't get there. But at least feeling calm was so much better than the agitation.

I was able to make it into the living room, which felt so good, and I kept hoping to just drift off, but it wasn't happening. I was able to eat another small portion of bean and barley soup, and after Marty got back from shopping for Rosh Hashanah goodies, I had two small pieces of apple babka (a plain cake with pieces of apple cooked into it). In the evening, Marty helped me back into bed, and I started dozing through the evening before falling to sleep for good and getting maybe about six solid hours, followed by a few more hours of dozing.

So when I woke up for good this morning I felt better than I have in quite awhile. I had a cup of tea and half of a chicken salad sandwich on whole wheat toast (not exactly breakfast food, but that's what I was craving), and it tasted wonderful. Now I'm back in the living room, feeling relaxed and marveling over how much stronger I am. I have no explanation for any of this, but I'm just taking each thing as it comes.

Yesterday (or was it Thursday?) I got a call from the NYAPRS conference so that I could hear Laura Prescott presenting my lifetime achievement award, and the cheers from the crowd. That felt so wonderful!

Feeling stronger today

I didn't sleep during the day yesterday, although I expected to, and I didn't sleep through the night, although I did get some sleep. But at some point during the night, I realized I was feeling stronger, and when Marty woke at about eight, I told him I wanted to try to drink a cup of tea. Yesterday I wasn't able to swallow liquids and was just sucking on ice chips, but this morning I drank a full mug of tea with great pleasure, and in about eleven o'clock I ate a very small portion of delicious bean and barley soup which Marty had brought me from the kosher deli in Brookline. So far, I haven't wanted to eat anything else, but the soup is sitting well and I think I will get stronger if I'm able to eat. This was the first food I've eaten since dinner on Sunday.

Yesterday I couldn't make it out of bed, but today I went first to the bathroom (not grabbing onto things as I have been the last few times) The bathroom is just a few steps, but it feels like such a long distance. Then a bit later I was able to walk, hanging onto Marty's arm, into the living room and into my chair. Yesterday this wasn't even a possibility.

I will take each day as it comes. Right now I am hopeful that I'll continue to feel stronger and will want to eat, but I will accept whatever happens, and will keep all of you posted on how things are going. Thank you all for your love and support.

Many changes

To start with, Sunday was a glorious day. Because Marty had a meeting in the morning, we knew we were going to miss part of the concert, but decided that it was still worth going. On our way to Plymouth, we stopped to pick up Donna, and then continued south toward Plymouth. The concert was held in an upscale development, on what they call the Village Green. We tried to get to the handicapped parking area, but were told by a guy directing traffic that it was full. But then another guy came over and said we could squeeze in behind the last car, right on one side of the Green. There were lots of people, but from the car even I was able to walk to an open space where we set up our chairs (two of those great collapsible canvas chairs that we borrowed from Julie and Jim, and Donna in her wheelchair). We couldn't see the stage, but we could hear the music. We had missed the first two groups, but heard the last two, a jazz combo and then Deborah Henson-Conant, who plays electric harp and who is a particular favorite of Marty's and Donna's, and whom I have been to see twice before. She opened with a hilarious semi-spoken, semi-sung account of hearing someone play "blues harp" and falling in love with it, asking her parents for a blues harp for her birthday, and being presented with a harp, which was not at all what she was expecting!

All this time I was glorying at sitting outside in the sunshine, letting music wash over me, enjoying being outside after so many days in the house, and feeling better than I had in days. I was weak and tired (it took all my energy to get from the car to where we set up our chairs), but once I was there I was able to relax and feel as good as I've felt in a long time. Being in the sun is so important to me, so I am so especially glad to have had this opportunity.

The concert ended promptly at five, and there were some dark, threatening clouds, so we decided to get back to the car, rather than sitting and waiting for the crowds to thin (our first plan). I had to go to the bathroom pretty badly and was trying to do it without having Marty set up the scooter, which is getting harder and harder for him. So we stopped at rather pretentiously named The Market. Marty went in and came out riding in a motorized cart, which I got into and drove through the store to the bathrooms, which were way in the back. On the way out, I managed to get the cart wedged in (it was a narrow place with a big cart and minimal turning room), so Marty had to direct me and I proved not very good at taking directions! As it turned out, it didn't rain, and the black clouds soon subsided.

We decided to stop for dinner in Plymouth. My stomach was feeling a bit iffy, so I had a bowl of clam chowder (I always crave creamy things when my stomach is upset), and then some crab cakes which weren't very good, so I just picked at them. Oddly, this may turn out to be my last meal.

Monday was a pretty horrible day. I was expecting to be exhausted, but I wasn't expecting things to get as awful as they got, with an anxiety attack and episodes of horrible pain. I've had this pain before--a sudden onset of intense pain in my jaw, which quickly moves into my upper chest and feels like an elephant standing on it. Because it is so intense and it's been several months since my last episode, we all forgot that it is actually a very unusual presentation of gas! So I was taking morphine, and a gel that is rubbed into my arm that is supposed to relieve anxiety, and eventually I drifted into a half-awake reverie state that was far superior to being in pain, but still very strange.

The badness actually started at two A.M. We didn't get to sleep until after midnight, so when I woke at two with a horrible anxiety attack I didn't want to wake Marty. I've never had one before but I knew exactly what it was--that it wasn't anything physical, but just total, overwhelming dread. I sat on the edge of the bed for awhile, and then eventually sat up against some pillows and watched TV (which I know doesn't wake Marty). I think I slept a little, but at five I decided I probably could sleep for real, so turned off the TV and lay down. It lasted for about thirty seconds, and the dread hit again, hard. At that point I did wake Marty, and he worked on calming me down. Memories are a bit foggy, but at some point I did make it into the living room and into my chair, and it was there that the pain hit, so that I was screaming in pain just as Laurel arrived, who quickly sized up the situation and told Marty to give me more pain medicine, even though it was "too soon" according to the dosage schedules.

Eventually, in the evening, I did fall asleep in the chair, trying to watch TV, but not able to stay awake. I was trying to watch the Patriots' game (football, for you non-sports fans), but was mostly asleep, despite the fact that it was a very exciting game and I was trying my best to stay awake at that point (near the end, where it got very exciting). I called for Marty, who was in the bedroom, and asked him to help me get back to bed. I tried to stand up, but the chair was stuck to my bottom so I had to sit down again. Maybe I tried to stand up too fast the second time, but for whatever reason, I suddenly found myself sitting on the floor with no idea how I had gotten there, and no idea of how I was going to get up again. Marty called Julie and Jim, who came downstairs, but I didn't want anyone to try lifting me (my body just telling me it was a bad idea). Marty put a dining room chair next to me and eventually I was able to pull myself into it. I sat for awhile and then walked, holding onto Julie, back to bed.

Earlier, when I was dealing with that horrible pain, I did finally remember that what I needed was gas medicine, which, miraculously, after all the heavy duty painkillers, was what did the trick. This was actually put to the test the next day, when I began to have the pain again and short-circuited it by chewing a few Gas-X tablets!

It was wonderful that I slept soundly through the night. I had been scared of another anxiety attack, but instead had the best, most sound sleep I'd had in awhile. So Tuesday was a pretty good day--I was very tired, but not hurting anywhere and not in pain, except for a few onsets of the gas pain, which never developed into anything because now we know what they are and how to deal with them. We were talking about the conference in New York, and Marty was determined to get me there. So a lot of Tuesday was taken up with figuring out all the things we needed. I called Lauren, who spent a few hours locating a nearby hospice (in Kingston, New York) that could follow me while I was away, plus lots of other logistical things. Laurel and Judy packed my suitcase, and there was a hilarious episode of finding someone who could iron a blouse for me (I have very few things that need to be ironed, but this blouse is one, and it's one of the few pieces of clothing I have that fit my expanded size). Judy finally said she could do it (Laurel has only one usable hand since her auto accident), and she discovered she hadn't lost a skill she'd learned in childhood!

The one thing that had really changed is that I have totally lost my appetite. All I wanted was liquid (to moisten my mouth, which stayed dry no matter how much I drank), and mango bars, and ice chips. At one point, I think Sunday night, I said wistfully that the one good thing about the hospital is that they have ice chips, Julie said that she had ice chips, and so she's been bringing down a steady supply. But the thought of eating has become totally repugnant. I don't even want to drink, so I've been keeping my mouth moist with the ice chips, mango bars, and Life Savers. Lauren has ordered some mouth swabs for me.

We woke up this morning still planning to try to go on the trip, but when I realized I wasn't hungry at all (and my blood pressure was a ridiculously low 76 over something), I decided I was too weak, and was just going to keep getting weaker if I wasn't eating. I talked a lot with Julie and Marty, not just about cancelling the trip, but about whether this was really the beginning of the end. It seems to me that if I don't want to eat, it may be a sign of systems shutting down, and my feeling is that right now my stomach is just going to fight any attempt to put food into it. I'm going to listen to my body and will certainly eat if I feel hunger, but right now I just want to keep my mouth moist, and be comfortable.

The important thing is that I feel totally at peace. I've had long talks with Julie and Marty, and Lauren was here and we talked some more, and we are all focused on making sure that my wishes are followed, and that I remain comfortable. I will try to write more if I can, but may dictate an entry to Marty if I can't.

This blog continues to be important to me, and I value all my wonderful readers.