OK here we are, the first Big Night Out. I’m in at St. Vinnies, my DNE has been fussing around making sure my bed is nicely made up. I tried to help by tucking in a corner and got into trouble for doing it wrong. I said, it’s OK I’ve lived with it like that my whole adult life and it hasn’t affected me.
I’ve had a bit of fun posting on facebook. Initially I was told I’d be in a 4 bed ward & have it all to myself, so I called for EOI’s about what to do with the other 3 beds and got some marvellous answers. I think the two best were the request to make blanket forts and post the photo’s on FB, and the one to set up an obstacle course to trip up the nurses coming in to do the hourly blood tests. As it turns out, the room was originally a 4 bed ward, but has more recently been converted to a discharge ward, with lounge chairs for people awaiting discharge. One bed has been left in for the duration of the research project, and there are 4 large, lush armchairs and TV’s. It’s a bit weird having other people coming into the room and plonking down in the armchairs to watch TV. It’d be different if I was actually sick, then I just wouldn’t care, I’d just want to be looked after.
6pm. Officially the dry-run test has now started. Dinner comes at 6:30. What can you say about frozen meals? It’s Angus beef, roasted with gravy, chips, green beans and carrots and they all taste like they’ve had the flavour leached from them, then been soaked in a mildly sweet juice of some sort. The meal is accompanied by a multi-grain bread roll that has more air in it than dough. 65 gms cho, they tell me. I’m a bit nervous about this as I reckon my bgl will plummet. I’m used to more greens & meat, and less carbs. If I’m going to bolus for 65 gms then it is usually something fairly hefty.
There’s an old guy who keeps wandering in and plonking in the chair opposite me. He puts the TV on and holds the speaker handset close to his ear. Every now & then I catch him sussing me out. I’m wondering whether to just close the curtains around me.
My DNE comes in to set up the monitoring system. There’s a smart phone, a translator and a tablet. Everything talks to every other thing and to the pump. I have to learn to switch things on and off and make sure they’re talking. When I take the system home in two weeks time, I will have a fairly complex morning routine to follow. I’ll have to switch the system off, check that all the pump settings have restored to normal and then do the cognition test. I’m glad I’m not working full time!
I was right about the meal & the carbs being a bit light weight. My bgl’s drift down to 4, I have an orange juice and some dried biscuits. Strike, it’s like being back in hospital when I was first diagnosed 32 years ago.
At 8:00pm the hourly blood tests start. By 10pm the cannula set is irritating the heck out of me. It's painful & I wonder if I'll be able to sleep at all.
The Doctor leading this project comes in for a chat. He's a Westie and passionate about the state of health in the Western districts. We talk about the likelihood of the project leading to successful and improved treatments, whether a commercial version will be affordable or supported by public funding and politics and (lack of) funding for the local Western hospital that is in desperate need of an ICU.
The DNE assigned to me is a delightful person and the blood tech doctor is kind and compassionate. I have a good team around me and it's time to try to get some sleep.