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Showing posts from 2014

An Artificial Life

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Uncomfortable reality.  One of the things that really worries me is that I live an artificial life.  I think all of us T1’s think about this from time to time. Scenario: We’re on a ship, the ship sinks, we are; in a lifeboat/on an island/clinging to wreckage…. with very limited supply of insulin. How long until we die? A Dying Economy   The issues of Climate Change, of Fuel Descent and a dying economy (as in the paper that I read yesterday, http://www.theguardian.com/commentisfree/2014/sep/02/limits-to-growth-was-right-new-research-shows-were-nearing-collapse), are becoming my personal reality.  I'm only alive because I have access to insulin and the moment that access stops, my life stops. So the realities of our economic model crashing, the difficulties that might mean for manufacture of medicines and medical aid, the difficulties of transporting things around the world in a fuel descent scenario, the difficulty of getting supply are becoming a critical factor in my thinkin

Challenging the Experts

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This weekend, I'm at the inaugural AMSL Diabetes Sports and Exercise Weekend at the Australian Institute of Sports, Canberra. I'm here because I was offered a sponsored spot, and I'm extremely grateful to Australian Medical and Scientific Ltd., for the opportunity. As I look around the crowd, I note that the majority of attendees are in their 20's - 30's, but there is a good handful of people in their 50's. I note this, because I have an agenda. I'm not just here to learn more about the physiology of Diabetes and exercise, I'm going to ask some hard questions about ageing and exercise. I'm going to ask where the support for the psychological effort that you need to make as you get older, to keep yourself motivated, is. I'm going to ask, "Who is doing research into Chronic conditions and motivation?" I know there is research into the physiology of exercise and it's effects upon glucose levels, that's part of what we are doing

Ageing Gracefully NOT

I've been meaning to start writing about how it feels to be getting older while living with a chronic illness. How it feels to be finding that I don't bounce quite as well as I used to, that I'm tireder, more stiff, more sore, less able, more unsure than I used to be and that I don't like it. We've just added yet another of the insidious auto-immune diseases to my collection, this time it is an under-active Thyroid, caused by a disease called 'Hashimoto's Disease', fairly common and more common in women with Type 1. I like to tell myself that I'm immune to the long term effects of Type 1. That because I didn't 'get it' until I was 25, (oh my goodness, I've had T1 now for longer than I didn't have it!), I thought that the creeping long term effects wouldn't impact on me. No heart disease, no eye problems, no neuropathy, yeah all good... or is it? A long time ago, soon after I was diagnosed, someone told me, or I read it som

Closed Loop, The Achilles Heel.

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

The Morning After The Night Before

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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.

Texting with Fuzzbrain

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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

Reflecting

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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

Now the fun begins

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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

Lab Rat life

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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

The Lab Rat goes home

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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

Here comes the sun

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7am. I'm awake properly now. Against all probability, I actually slept quite deeply in between the hourly blood tests and the discomfort of the cannula in my arm. I can't wait to get it taken out at 8, though. I've been hoping that when the sun rises it will reflect in the windows of all the buildings in the magnificent view from where I lie. Already I've captured a photo of the pre-dawn glow from the office window where my DNE and Doctors have been spending the night. There's blood in the crease of my elbow, under the cannula. I must have had a bleed during one of the blood collections. I feel surprisingly alert. I basically flatlined all night, once we got it stable at 6 mmol. I had to eat about 30gms cho extra after my meal, as the lightweight hi GI meal just didn't stick to my ribs at all! The DNE comes in and begins telling me once again about the procedures I will have to undertake each morning. I think I'm going to need to create a visua

Sleepless in St. Vinnies.

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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

Type 1 Dilemma

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I'm in bed after a big day gardening at my younger sisters' country property with all my siblings. Then I came home to dress and go out to a 50th birthday party where I ended up dancing like a 20 year old, but I didn't last much past 9.30 pm! Now I find myself in one of those Type 1 situations tonight where I bolussed for quite a lot of carbs at the party, then didn't eat as much as I thought I would and now I'm in bed, very tired and wanting to go to sleep, but not game to, until I see which way my bgl is tracking, and I either eat or turn down the basal so that I'll get through the night ok.  I was scheduled to do a sensor change today and thought I'd leave it until I came home from gardening at my sister's, as I expected to be home about 4 pm, but as it turned out I didn't get home until 6.30 pm. I knew I had to recharge the sensor transmitter before putting a new sensor in, so I put the transmitter on the charger whilst I went out to the p

It's not an artificial pancreas.....or is it?

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I wanted to update my thoughts about being part of the Closed Loop research this morning, but I’m afraid my concentration and happy state of mind is being thrown for a loop by various internet subscription systems which are NOT behaving in the seamless manner you would expect and by my internet connection running slow and causing me to see red!  It’s incredible how things can just derail your emotional equilibrium very quickly. I’m also sick today with a herpes attack and I think it’s just an accumulation of the various stresses about finance, doing the research project, trying to find work, trying to get my business up and running and having emails from someone who saw my ad on airbnb and decided to ask at 11:30 pm if it would be ok to book in for 3 nights starting today(!) Fortunately after getting up out of bed, and conducting an online conversation over the recalcitrant internet connection mentioned earlier, the person decided that they would stay in central Melbourne instead and

Closed Loop Here I come!

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Day One of the big research project and I have to be at the hospital by 8am. Up at 5:30, I'm worried about not taking the dog for a walk and I leave the house with the back door wide open so she can go outside. She looks at me lazily and only gets up 5 minutes before I leave at 6:40. I'm anxious about parking in at the hospital, I'm broke and don't want to spend money on parking fees, so I catch the train to North Melbourne and ride my bike up along Victoria Pde., to the Daly wing at St. Vincents. The Diabetes Education Department is on the fourth floor in an old ward which looks as though it hasn't been repainted since it housed patients. I wonder about the psychological impact of such an old building on the people who work here. My appointment starts at 8am and the morning is spent meeting the team who will be working with me over the next two and a half months.  I meet my 2 DNE's, the 2 research Doctors, the 2 Psychologists and the woman who brings t