Diary of a day: 730-ish

I am trying to finish my diary of Tuesday but today is Friday. It is mid afternoon and I am still in bed. My catheter is changed monthly by the community nurse and we were booked in for 8 AM but the medical profession seems to have a fluid concept of time. Patients learn patience and I’m long past getting frustrated by such occurrence. She turned up at about 11 and did the business [I asked her whether she would let me video the procedure but she was oddly reluctant. Those of you who are into piercings would be fascinated to see what I can stick in and out of my belly. Perhaps next time] but with my carers gone I decided it was easier on Elly if I just stay in bed. Turned out okay. I had an enjoyable surprise visit from a friend (Ann-Elise Koerntjes) and got to participate in webinar on the theology of Bernard Lonergan. I know, boooring, so back to Tuesday:

I arrive home to a full house. Elly’s best friend Rowena is staying for a few days and it’s Jeremy’s birthday, so he’s managed to con his girlfriend’s parents to allow her to come over mid week. Kate and Jem have been together for a few months now and they seem to be taking the whole thing pretty seriously. We are happy about that and Kate is a nice girl – good fun to have around. But it is odd to watch your kid in a near adult relationship, especially when they are so huggy. Anyway, there are seven of us around the dinner table, festooned with balloons and a massive poster plastered with red P plates (if you forgot my earlier post Jeremy got his licence today). Fondue for dinner – cheese entree steak main course. It is the sort of spectacular event Elly likes to create.

I have managed to delay my carers an extra half an hour but in almost no time at all it is 8: 30 and I am dragged away from the party and off to bed. Up at 7, to bed at 8, it can be an infuriatingly rigid routine although there is something good about the rhythm of it. To be honest the carers would be happy enough for me to stay out longer but I am flat out exhausted – it’s just been a long day, too long on the chair and I am uncomfortable and fidgety and need to get into bed. Night time care is a little more straightforward than morning. If I am up to it the carers will help me do some exercises but i blow that off tonight. I take my tablets – I am a down and out druggy. I take tablets throughout the day; gabapentin for neuropathic pain, baclafen for spasm, tolterodin for the bladder, two different types of laxatives, and a low dose psych pill. My wife came home from the chemist yesterday with another receipt for more than $200 (and this figure excludes all the other costs of catheters and lotions and wound care items and on and on). And if I have put on weight at my next weigh in I am blaming the pills.

tonight I am blessed by six people crowding into my bedroom as a cake with 17 candles explodes into the room. We sing a deliberately horrible out of tune and out of time happy birthday and Jem blows out the candles. One is left over so his wish to go unfulfilled. My youngest Lachlan entertains us with happy birthday in a made up language. I’m not sure whether it sounds Arabic or Jewish so maybe it’s actually a gift of tongues intended to bring world peace? it at least brings the room to laughter.

On my own again I read Uncommon Gratitude. I turn to a meditative prayer written by my friend Lauren. Written in the form of a Japanese haiku, it is intended to frame the cadence of the day (Dawn, noon, dusk and night). I shall share with you the latter, as well as her meaningful benediction

Love, peace, beauty and joy to you


Inside a suitcase

Exhaled memories I wait

Held in contentment

And so ends my day. Well, almost. My wife – exhausted herself –comes in, helps me brush my teeth, kisses me good night and puts the snorkel of my breathing machine over my face. I was diagnosed with sleep apnoea in hospital, perhaps something to do with the fact that I sleep all night on my back. In fact, the tempo of the machine and the smooth flow of oxygen helps me sleep. I am out cold quick smart.