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.