something else

In the wash-up, I need to split my reflections on the trial into two, the first being about the intensity of being a trial participant, the ‘LabRat’ experience, and the second being about the technology itself. I have written quite a lot about my feelings about being a 'LabRat' and I'd like to make some comment about the technology itself. The technology is extraordinary, the ‘algorithm’ that runs all the calculations, the engineering of the components needed to translate radio signals to bluetooth and back again. But there is an achilles heel that I discovered on that final night. I was shocked on waking to do my calibration check, to find that I HAD dropped to 2.9 and the pump alarm and and smart phone alarms had NOT woken me. The  thing that woke me was the fact that I had set a 3am alarm on my phone to wake and do the calibration test. My night watcher phoned to see if I was OK, as I was busily drinking the orange juice and contemplating whether it would wreck the tri...

We danced last night at the local folk festival. I am so unfit! Its a long drive home in the rain, one headlight down, hardly anyone else on the road. My sleep is restless, I’m low at 3am, I eat glucose and try to sleep, things on my mind. I need to get that quote for the next contract done, I should join the club ride, I’m tired. Work wins out and I pike on the ride, but there’s a deeper factor. My BGLs drop and drop, I get them back up to 4.5 they flatline, I eat more. I square wave the breakfast bolus and delay walking the dog. I’ve got that weird feeling in my legs, I can feel the glucose being sucked out of my thigh muscles. Finally it comes up to 5.1 and the dog and I head out the door. I’m halfway home and the pump alarm is going crazy, dropping, dropping and I’m stuffing jelly snakes in my mouth. Make it home get the kettle on, swallow a banana whole, stagger into the study. The phone rings and it’s Brigid from the HeraldSun, ready to read me the story that’s going to print. ...

This research is not something to enter into lightly. Last night after a self induced late night on Sunday, when I stayed up way too late playing with graphics and updates to my new website, I almost hit the 'I'm over it!' button. It started with an early morning appointment in at St. Vinnies, having the usual pre-session, blood tests, urine tests, and memory test to see if I remembered how all the gear works. During the gear check, we opened a Closed Loop session and went as far as starting to download data from the pump, then we decided to shut everything down to pack it all up so I could head home. Wrong!  We pulled the plug on the App as it was halfway through a process. This was to create headaches late in the evening. I then complicated things by allowing my friend who was staying overnight as emergency backup, to cook dinner. My friend has recently been to Vietnam and was keen to demonstrate a Vietnamese recipe to me. The recipe was for beef and noodles wrapped i...

I'm in a reflective mood tonight. I promised my DNE that I would put all the things I do during the 'at home' nights of the project, into an info graph type graphic to help other clinical trial participants, instead I found myself drawing these little LabRat illustrations. As I drew them I found myself feeling all sorts of emotions about being a 'LabRat.' It's a rather odd experience. On the one hand my 'bullocky' resilient, externally related side is a bit like the little rat with the JDRF cape, I'm a super-hero, putting my body on the line for science (said with a wry grin). Then again, the analytical side of me is interested in the process - what actually goes on in these trials, what data do they collect & how is it used? The little rat in the middle is off to see the world and see how it all works. Then there is the  sensitive scared little rat, a bit worried, a bit scared and feeling a little bit alone in the middle of it all.  This ...

Today is Monday 16th June. It is also the first night that I will hand over control of my insulin pump to a smartphone and an algorithm. The low suspend safety function on the pump will be switched off and the pump will respond to information from my sensor by itself. As I sit at the station waiting for the train into town, with my backpack and computer bag I start to think about all the what if's. Suddenly I want to phone my daughter, to say to her, "If it all goes wrong, remember I love you, everything you need to know is on my computer and there's a back up disk on my desk at home." I can't phone her, she's at work, but the urge to tell her is so strong, I start to sms. Her response is swift and short. "Geezuz! Don't panic! I'll call you after work tonight." I get on the train feeling quite surreal. A good friend calls on the phone and I tell her my fears, she listens patiently and kindly, and quietly brings me back to earth. I tell ...

Day 2 of the four nights at home using the closed loop system, without closing the loop. I'm pretty tired tonight, although I slept well last night. The system doesn't interrupt my sleep any more than usual. I normally wake sometime between 2 and 5 to do a finger prick, so the mandatory one at 3am isn't anything out of the normal. The biggest hassles so far are the 48 hour urine collection and the dumb cognition testing. Being T1 is sometimes a funny game between myself, and my medical team. I try to be honest and admit my mistakes and own up to bad behaviour, but sometimes I just don't say anything and try to get away with it. The clinical trial is so intense it makes this really hard. My DNE makes a couple of calls a day to me and we chat using txt messages in the evening. Once I link up the new software to my pump, and she logs in online to monitor it, the truth is out there. When my BGL's hit 19 tonight I had to admit to having scoffed some of the chic chip bi...

Field of very big Telescopes Where in heavens name are we? I got home from the SPSP (the SouthPacific Star Party) in Wiruna NSW at 19:30 last night. My sister & I drove up, leaving Melbourne on Thursday morning and staying in a little cabin park in Wagga Wagga that evening then continuing along the Olympic Highway on Friday to arrive at the campsite at 3 in the afternoon. We were both very tired, but managed to get a fabulous hour with a fellow who let us look through his telescope at Saturn, the Tarantula nebula, some globular clusters, the Jewel box, and then pointed out how the dark spaces in the Milky Way form the Emu, which was observed and pictured in rock art by the Aborigines thousands of years ago. Seeing Saturn through the telescope made my gut jump.  I haven't been writing much about the 'Closed Loop' project for a while, as really, nothing has been happening apart from trying to fine tune my levels. I've spent 4 or 5 days intensely monitor...