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Three days in Vienna is never going to be enough, and neither were three days at ATTD. But mother guilt is a very strong motivator for getting back home as quickly as possible.

This is the second ATTD conference I attended. Last year, I returned a little bewildered because it was such a different diabetes conference to what I was used to. But this year, knowing what to expect, I was ready and hit the ground running.

There will be more to come – this is the initial brain dump! But come back from more in coming weeks. Also, if you emailed me, shot me a text, Facebooked me, Tweeted me or sent me a owl last week, I’ll get back to you soon. I promise. Long days, and long nights made me a little inaccessible last week, but the 3am wake up thanks to jet lag is certainly helping me catch up!

So, some standouts for me:

DIY

The conversation shift in 12 months around DIY systems was significant. While last year it was mentioned occasionally, 2018 could have been called the ATTD of DIY APS! Which means that clearly, HCPs cannot afford to think about DIY systems as simply a fringe idea being considered by only a few.

And if anyone thinks the whole DIY thing is a passing phase and will soon go away, the announcement from Roche that they would support JDRF’s call for open protocols should set in stone that it’s not. DANA has already made this call. And smaller pump developers such as Ypsomed are making noises about doing the same. So surely, this begs to the question: Medtronic, as market leaders, where are you in this?

It was fantastic to see true patient-led innovation so firmly planted on the program  over and over and over again at ATTD. After my talk at ADATS last year – and the way it was received – it’s clear that it’s time for Australian HCPs to step up and start to speak about this sensibly instead of with fear.

Nasal glucagon

Possibly one of the most brilliant things I attended was a talk about nasal glucagon, and if diabetes was a game, this would be a game changer! Alas, diabetes is not a game, but nasal glucagon is going to be huge. And long overdue.

Some things to consider here: Current glucagon ‘rescue therapy’ involves 8 steps before deliver. Not only that, but there are a lot of limitations to injectable glucagon.

Nasal glucagon takes about 30 seconds to deliver and is far easier to administer and most hypos resolved within 30 minutes of administration. There have been pivotal and real world studies and both show similar results and safety. Watch this space!

Time in Range

Another significant shift in focus is the move towards time in range as a measure of glucose management rather than just A1c. Alleluia that this is being acknowledged more and more as a useful tool, and the limitations of A1c recognised. Of course, increasing CGM availability is critical if more people are going to be able to tap into this data – this was certainly conceded as an issue.

I think that it’s really important to credit the diaTribe team for continuing to push the TIR agenda. Well done, folks!

BITS AND PIECES

MedAngel again reminded us how their simple sensor product really should become a part of everyone’s kit if they take insulin. This little slide shows the invisible problem within our invisible illness

Affordability was not left out of the discussion and thank goodness because as we were sitting there hearing about the absolute latest and greatest tech advantages, we must never forget that there are still people not able to afford the basics to keep them alive. This was a real challenge for me at ATTD last year, and as technologies become better and better that gap between those able to access emerging technology and those unable to afford insulin seems to widening. We cannot allow that to happen.

Hello T-Slim! The rumours are true – Tandem is heading outside the US with official announcements at ATTD that they will be supplying to Scandinavia and Italy in coming months. There are very, very, very loud rumours about an Australian launch soon but as my source on this is unofficial, best not to add to the conjecture.

How’s this for a soundbite:

GOLD STARS GO TO….

Massive congrats to the ATTD team on their outstanding SoMe engagement throughout the conference. Not a single ‘No cameras’ sign to be seen, instead attendees were encouraged to share information in every space at the meeting.

Aaron Kowalski from JDRF gave an inspired and inspiring talk in the Access to Novel Technologies session where he focused on the significant role PWD have in increasing access to new treatments and his absolute focus on the person with diabetes had me fist pumping with glee!

Ascensia Diabetes packed away The Grumpy Pumper into their conference bag and sent him into the conference to write and share what he learnt. Great to see another group stepping into this space and providing the means for an advocate and writer to attend the meetings and report back. You can read Grumps’ stream of consciousness here.

Dr Pratik Choudhary from the UK was my favourite HCP at ATTD with this little gem of #LangaugeMatters. Nice work, Pratik!

ANY DISAPPOINTMENTS?

Well, yes. I am still disappointed that there were no PWD speaking as PWD on the program. This is a continued source of frustration for me, especially in sessions that claim to be about ‘patient empowerment’. Also, considering that there was so much talk about ‘patient-led innovation’, it may be useful to have some of those ‘patient leaders’ on the stage talking about their motivations for the whole #WeAreNotWaiting business and where we feel we’re being let down.

I will not stop saying #NothingAboutUsWithoutUs until I feel that we are well and truly part of the planning, coordination and delivery of conferences about the health condition that affects us far more personally that any HCP, industry rep or other organisation.

DISCLOSURE

Roche Diabetes Care (Global) covered my travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #ATTD2018 (more to come on that). They also assisted with providing me press registration to attend all areas of ATTD2018. As always, my agreement to attend their blogger day does not include any commitment from me, or expectation from them, to write about them, the event or their products. It is, however, worth noting that they are doing a stellar job engaging with people with diabetes, and you bet I want to say thank you to them and acknowledge them for doing so in such a meaningful way.

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I wrote this post on this day last year and today, when it came up in my TimeHop app reread it and realised it is a good one to consider at the beginning of the year as I’m trying to get myself in order. I’ve made some edits to some of the points due to changes I made last year in the way I manage my diabetes. (The original post can be found here.)

I suppose that I was reminded that being good at diabetes – something I’m afraid I miss the mark on completely quite often – does involve others who sometimes don’t necessarily understand what it is that I really need. And I can’t be annoyed if they don’t intrinsically know what I want and need if I can’t articulate it. This post was my attempt to do just that. 

______________

Sometimes, I’m a lousy person with diabetes (PWD). I am thoughtless and unclear about what I need, have ridiculous expectations of others – and myself, and am lazy. But I’m not always like that. And I think I know what I need to do to be better.

Being a better PWD is about being true to myself. It is also about reflecting on exactly what I need and I hope to get it.

  • I need to remember that diabetes is not going away
  • I need to remember that the here and now is just as important as the future
  • I need to remember that I don’t have to like diabetes, but I have to do diabetes
  • I need to remember that the diabetes support teams around me really only have my best interest at heart, and to go easy on them when I am feeling crap
  • I need to empty my bag of used glucose strips more frequently to stop the strip glitter effect that follows me wherever I go – edit: while this is true, I do have to admit to having far fewer strips in my bag these days due to my rather lax calibration technique
  • I need to remember that it is not anyone else’s job to understand what living with my brand of diabetes is all about
  • I need to remember that the frustrating and tiresome nature of diabetes is part of the deal
  • I need to be better at changing my pump line regularly – edit: even more so now that I am Looping and think about diabetes less than before.
  • I need my diabetes tasks to be more meaningful – quit the diabetes ennui and make smarter decisions
  • And I need to own those decisions
  • I need to see my endocrinologist – edit: actually, this one I managed to nail last year and even have an appointment booked in for a couple of months’ time!
  • I need to decide what I want to do with my current diabetes technology. There is nothing new coming onto the market that I want, but what about a DIY project to try something new? #OpenAPS anyone…? – edit: oh yeah. I started Looping….
  • Or, I need to work out how to convince the people at TSlim to launch their pump here in Australia – edit: even more relevant now after yesterday’s announcement that Animas is dropping out of the pump market in Australia
  • I need to check and adjust my basal rates
  • I need to do more reading about LCHF and decide if I want to take a more committed approach or continue with the somewhat half-arsed, but manageable and satisfactory way I’m doing it now – edit: sticking totally to the half-arsed way and happy about it!
  • I need to remind myself that my tribe is always there and ask for help when I need it
  • I need to make these!

And being a better PWD is knowing what I need from my HCPs and working out how to be clear about it, rather than expecting them to just know. (I forget that Legilimency is not actually something taught at medical school. #HarryPotterDigression)

So, if I was to sit down with my HCPs (or if they were to read my blog), this is what I would say:

  • I need you to listen
  • I need you to tell me what you need from me as well. Even though this is my diabetes and I am setting the agenda, I do understand that you have some outcomes that you would like to see as well. Talk to me about how they may be relevant to what I am needing and how we can work together to achieve what we both need
  • I need you to be open to new ideas and suggestions. My care is driven by me because, quite simply, I know my diabetes best. I was the one who instigated pump therapy, CGM, changes to my diet and all the other things I do to help live with diabetes – edit: And now, I’m the one who instigated Loop and built my own hybrid closed-loop system that has completely revolutionised by diabetes management. In language that you understand, my A1c is the best it’s ever been. Without lows. Again: without lows! Please come on this journey with me…
  • I need you to understand that you are but one piece of the puzzle that makes up my diabetes. It is certainly an important piece and the puzzle cannot be completed without you, but there are other pieces that are also important
  • I need you to remember that diabetes is not who I am, even though it is the reason you and I have been brought together
  • And to that – I need you to understand that I really wish we hadn’t been brought together because I hate living with diabetes – edit: actually, I don’t hate diabetes anymore. Don’t love it. Wish it would piss off, but as I write this, I’m kinda okay with it
  • I need you to remember that I set the rules to this diabetes game. And also, that there are no rules to this diabetes game – edit: that may be the smartest thing I have ever written. I’d like it on a t-shirt
  • I need you to understand that I feel very fortunate to have you involved in my care. I chose you because you are outstanding at what you, sparked an interest and are able to provide me what I need
  • I need you to know that I really want to please you. I know that is not my job – and I know that you don’t expect it – but I genuinely don’t want to disappoint you and I am sorry when I do
  • I want you to know that I respect and value your expertise and professionalism
  • I need you to know that I hope you respect and value mine too.

And being a better PWD is being clear to my loved ones (who have the unfortunate and unpleasant experience of seeing me all the time – at my diabetes best and my diabetes worst) and helping them understand that:

  • I need you to love me
  • I need you to nod your heads when I say that diabetes sucks
  • I need you to know I don’t need solutions when things are crap. But a back rub, an episode of Gilmore Girls or a trip to Brunetti will definitely make me feel better, even if they don’t actually fix the crapness
  • Kid – I need you to stop borrowing my striped clothes. And make me a cup of tea every morning and keep an endless supply of your awesome chocolate brownies available in the kitchen
  • Aaron – I like sparkly things and books. And somewhere, there is evidence proving that both these things have a positive impact on my diabetes. In lieu of such evidence, trust and indulge me!
  • I need you to know I am sorry I have brought diabetes into our  lives
  • I need you to know how grateful I am to have you, even when I am grumpy and pissed because I am low, or grumpy and pissed because I am high, or grumpy and pissed because I am me.
  • Edit: I need you to keep being the wonderful people you are. Please know that I know I am so lucky to have you supporting me. 

These days, thanks to Loop, I think about diabetes a lot less on a daily basis. I guess it’s to be expected when suddenly my diabetes devices have become far more automated than previously which results in fewer button pushes, fewer reaches down my shirt to find my pump in my bra to make temp basal changes, or even boluses and fewer out of range numbers that need attention.

The downside of this (if there is a downside) is that I lose track of what’s going on.

Because diabetes is rarely front of mind, I’ve found it hard to remember when I did things such as pump line changes. One day during my holidays, as my CGM trace edged up inexplicably one day, I tried to troubleshoot why, but it wasn’t until I was drying myself off after showering that I became aware of how tender the site felt.

I stood there trying to remember when I had last changed the line, counting back the days, before I realised it had been almost a week. After swapping out the line for a new one and examining the site to make sure it wasn’t infected (it wasn’t – just a little red) I started setting a reminder in my phone so that I would remember when it was time for a change.

To be honest, the only times I can rely on thinking about diabetes these days are when that alarm goes off, or another alert reminding me that it’s time to refill my cartridge, restart my CGM sensor or change the battery in my pump. I’m completely dependent on those noisy reminder alarms to make sure I get things done, because my diabetes has become a little bit ‘out of mind, out of sight’.

It’s funny how quickly changes like these become the norm. And other routines have also been given an overhaul.

My waking habits, which always involved reaching for my phone to check the number on my Dex app, is different now. The other day, I came to realise that often I’d be awake, up and moving around for some time before remembering to check my glucose levels. In fact, often it wasn’t until I sat down for a coffee or something to eat that I bothered to glance down at my Apple Watch. I guess that’s what happens when all you see is a number in the 5s every single morning for six months. The novelty wears off and there seems to be little reason to actually check.

Of course, if I felt the gentle haptic of my watch, or vibration of my phone alerting me to an out of range number, I was right on it. But when there was no noise, I simply wasn’t listening to diabetes.

I suppose this is what I meant when I wrote this in my final post for last year: ‘I finish 2017 far less burdened by diabetes than I was at the beginning of the year.’ The burden of diabetes for me has been the monotony of it, the relentlessness of it, the way it permeates every part of my life. I would, quite easily, feel overcome and overwhelmed by these aspects of diabetes.

Without a doubt, that has changed. My new diabetes feels lighter and less encumbering. And with that, my attitude towards my diabetes has become somewhat kinder. I used to say I hated diabetes, but I think what I meant was that I hated how it was so present all the time.

These days, I feel less bitterness about my fucked up beta cells and the resulting long term health condition I have. Perhaps I feel ambivalent – but not in a ‘I’m over it and don’t care’ kind of way. No. Now, for the first time, I feel that diabetes and I are coexisting, if not happily, at least comfortably.

My day’s first though of diabetes is just before my first hit of caffeine. (Click photo for where to buy Casualty Girl pouch.)

After lunch on the first day of the Congress, the Living with Diabetes stream got all technical with a couple of sessions on diabetes tech.

The first was billed as a debate: #WeAreWaiting versus #WeAreNotWaiting, and the speakers in the session were Annie Astle (found on the interwebs as Understudy Pancreas) and Dana Lewis (found on the interwebs as Dana Lewis, because everyone knows Dana).

I loved this idea of this session, which was to give different perspectives about how people with diabetes are making decisions about the technology the choose – or choose not – to use.

I was acting as Chair and used my time when introducing the session and the speakers to highlight that the ‘My Diabetes, My Rules’ idea was going to be really emphasised in the next hour or so.

It’s hard not to get swept up in a movement as exciting, interesting and ground-breaking as the #WeAreNotWaiting movement. There are a lot of people speaking about it, and a lot of people extolling the benefits of using their DIY system. I know I need to rein in just how evangelical I am at times about my Looping experience, because I am so effusive about how transformative it has been for me.

And when Dana speaks, it’s even more apparent just how revolutionary the technology is, and how remarkable the evolution of diabetes DIY is in such a regulated and conservative ‘industry’.

But it’s not for everyone. And we need to hear from those people too.

Annie shared the story of her teenage daughter living with type 1 diabetes, Pumplette, and explained why her family is waiting and not jumping on board the DIY APS bandwagon. Let’s be clear here, this is not because they are luddites; they actually do embrace technology. Pumplette starting on a pump at the tiny age of one-year-old. (Annie showed a photo of baby Pumplette with her pump which was more than half the length of her leg.) Plus, Pumplette uses CGM with share capabilities, allowing Annie to stay connected to what’s going on with her daughter even while eight hours away. (Or, as my daughter and Pumplette like to say during their regular conversations ‘While our mothers abandon us’. Digression, but Annie, introducing these girls has paid dividends for our mother guilt, hasn’t it?)

While embracing commercially available technologies, Pumplette has chosen to not use Loop or Open APS.

And that sentence I have just written says it all. The decision to not use a DIY system is fundamentally Pumplette’s decision. What Annie wants is not relevant. Pumplette’s diabetes; Pumplette’s rules.

I have long admired Annie’s parenting approach. She has three daughters who are the most delightful, considerate, smart, sassy, talented, funny girls I’ve had the good fortune to get to know. I shouldn’t have been surprised when we met on the streets of NYC last year that they would be like this – I’d been reading Annie’s blog and had met her a number of times, and these great girls are the result of having been given freedom and independence while being supported, loved and nurtured. And this approach extends to Pumplette’s diabetes.

It’s really hard as a parent not to push what we want onto our kids. I know that I catch myself all the time from steering my kid in a particular direction because I think it’s the right one (or it’s what I want), when I know that really, she needs to make the decisions herself and the best thing I can do is step back, watch, support and encourage, stepping in when asked. I can only imagine how much more difficult this would be if with kids with diabetes.

Annie’s talk at the Congress showed me once again that she continues to parent at expert level. Her girls are so lucky.

Annie’s talk can be heard here (you’ll need to have a Facebook account to view it).

Disclosure

 

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.

…And this disclosure too

Annie is one of my dearest friends. I love her to pieces. But even though she is one of my favourite people in the world, everything I have written here is true and I am certainly not the only person to feel this way about her!

 

This week, for the first time ever, I had no anxiety at all as I prepared for my visit to my endocrinologist. I always feel that I have to put in a disclaimer here, because I make it sound like my endo is a tyrant. She’s not. She is the kindest, loveliest, smartest, most respectful health professional I have ever seen. My anxieties are my own, not a result of the way she communicates with me.

Anyway, now that the disclaimer is done, I walked into her office with a sense of calm. And excitement. It was my first post-Loop appointment. I’d eagerly trotted off for an A1c the week earlier (another first – this diabetes task is usually undertaken with further feelings of dread) and was keenly awaiting the results.

But equally, I didn’t really care what the results were. I knew that I would have an in-range A1c – there was no doubt in my mind of that. I know how much time I am spending in range – and it’s a lot. And I have felt better that I have in a very, very long time.

The eagerness for the appointment was to discuss the new technology that has, quite honestly, revolutionised by diabetes management.

I sat down, she asked how I was. I marvelled – as I always do at the beginning of my appointments with her – how she immediately sets me at ease and sits back while I talk. She listens. I blabber. She never tries to hurry me along, or interrupts my train of thought.  I have her full attention (although I do wonder what she must think as my mind goes off on weird, sometimes non-diabetes related tangents.)

And then I asked. ‘So…what’s my A1c? I had it checked last Wednesday.’ She told me and I took in a sharp breath. There it was, sitting firmly and happily in what I have come to consider ‘pregnancy range’. Even though that is no longer relevant to me, it frames the number and means something.

I shrugged a little and I think perhaps she was surprised at my lack of bursting into tears, jumping up and down and/or screaming. I wasn’t surprised. I repeated the number back to her – or maybe it was so I could hear it again. ‘And no hypos.’ I said. ‘And minimal effort.’

I’ve had A1cs in this range before. In fact, I managed to maintain them for months – even years – while trying to get pregnant, and then while pregnant. But the lows! I know that while trying to conceive and during pregnancy, I was hypo for up to 30% of the time. Every. Single. Day.

It was hard work. No CGM meant relying on frequent BGL checks – between 15 and 20 a day. Every. Single. Day. And it meant a bazillion adjustments on my pump, basal checking every fortnight and constantly second guessing myself and the technology. Sure, that A1c was tight, but it was the very definition of hard work!

This A1c was not the result of anywhere near as much effort.

Surely the goal – or at least one of them – of improved diabetes tech solutions has to be about easing the load and burden of the daily tasks of diabetes. I’m not sure that I’ve actually ever truly believed that any device that I have taken on has actually made things easier or lessened the burden. Certainly not when I started pumping – in fact, when I think about it, it added a significant load to my daily management. CGM is useful, but the requirement to calibrate and deal with alarms is time and effort consuming. Libre is perhaps the least onerous of all diabetes technologies, yet the lack of alarms means it’s not the right device for me at this time.

These tools have all been beneficial at different times for different purposes. It is undeniable they help with my diabetes management and help me to achieve the targets I set for myself. But do they make it easier to live with diabetes? Do they take about some of the burden and make me think less about it and do less for it? Probably not.

Loop does. It reduces my effort. It makes me think about my own diabetes less. It provides results that mean I don’t have to take action as often. It takes a lot of the thinking out of every day diabetes.

So let me recap:  Loop has delivered the lowest A1c in a long time, I sleep better that I’ve slept in 20 years, I feel better – both physically and emotionally – than I have in forever. And I feel that diabetes is the least intrusive it has ever been.

Basically, being deliberately non-complaint has made me the best PWD I can possibly be.

Oh look! Your phone can now be deliberately non-compliant too, thanks to designer David Burren. Click on the link to buy your own. (Also comes in black and white.)

On Tuesday night, I finished my World Diabetes Day at an event at the Western Hospital. It was an event for people with type 1 diabetes, and the topic was diabetes technology, including DIY systems.

There were probably about eighty people in the auditorium. I recognised some – a lot of – familiar faces as the usual suspects (or frequent flyers) who attended Type 1 in the City events from when the series was run up until a couple of years ago.

I’m not going to write too much about the actual content of the event, but I do want to commend the Western Hospital for providing a safe and friendly place to discuss new technologies. When there is a diabetes educator like Cheryl Steele involved in organising a diabetes information session – someone who has always been at the absolute forefront of diabetes technology, and is now a ‘Looper’ herself – you can bet that the program would absolutely include THE LATEST technology, not just approved technologies.

It makes sense for her to feel this way. As more and more people start to investigate Open APS and Loop, and decide to try it for themselves, healthcare professionals in all settings will come across people using it. Denying it exists is ridiculous – does anyone truly believe that if HCPs don’t talk about it to their patients, no one will know about it?

Instead of turning their backs on DIY technologies, the Western Hospital opened their doors to people talking about it, and having HCPs in the room to be part of the discussion. It’s important to remember, the Western Hospital and their staff are not endorsing it, (just as my employer is not endorsing it when I speak about my personal experiences, or the ‘DIY movement’). But they are acknowledging it’s there and that #WeAreNotWaiting for regulatory processes to bring commercial products onto the market.

One of the speakers at the event was Dr Barbora Paldus who is involved in the current Medtronic hybrid-closed loop studies in Australia. Her talk was terrific and she gave great clarity about not only the trial she is involved in, but also closed loop trials around the world. She was clearly interested to hear about DIY APS, expressing her nervousness, but still open to discussion.  She had a lot of questions, mostly about how to bring HCPs along in our decision to build our own loops. She wanted to know how we would encourage open dialogue with our HCPs so they better understood.

The discussion was lively. I felt that for most people in the room, they truly had just discovered a whole new part of diabetes treatments and technologies. Some people said that it wasn’t for them – and that’s fine. But they know something else open to them – something they may not have otherwise come to know about.

I got home at about 10pm and walked in the door. ‘How was it?’ asked Aaron. ‘It was brilliant.’ I said, realising that I was actually really quite emotional. ‘I miss these sorts of events. It was like the old days and the small community events at Royal Melbourne Hospital. We got kicked out of the auditorium so security could lock up!’

These days, I mostly attend events for HCPs, presenting at conferences and meetings. I enjoy this part of my work because it means I can provide a PWD perspective of what happens at those events. And I get to be the human face of the topics being discussed. I do love it.

But here I was amongst my people again – my tribe. And it was great to be there.

Looping, alive and deliberately non-compliant.

Click here for where to buy one of these David Burren designed t-shirts. 

When I was a teenager, I slept a lot. And I could sleep through anything. There are stories of the whole family being woken by thunder storms or possum fights in the ceiling or other things that go bang in the night, and me sleeping blissfully through it all. My family would guess how quickly I would fall asleep as we piled into the car heading off on a family drive. (Typically – in under 5 minutes.)

For a number of years, I never saw a plane take off. The taxiing jet would lull me to sleep and I’d be dozing by the time the plane took off.

I’d never ever had trouble sleeping, ever. I’d hear of tales of insomnia and never believed it could happen to me.

I loved sleep. I needed sleep. So, I slept. And I’d wake in the morning feeling refreshed, alert and ready to take on the day.

And then I was diagnosed with diabetes and sleep suddenly became an interrupted mess.

I was thinking about this the other day when I looked at the JDRF T1D footprint. Apparently, I’ve lost 4,070 hours of sleep. ‘Yeah, I’d believe that,’ Aaron said when he saw it. And he’d know. He’s kept me company for many of those hours. Sometimes my clattering around would make the house; other times, Aaron would be up, making toast or getting me juice to help lows, or refilling my water glass, or even holding my hair back while I threw up thanks to highs.

As much as I still loved and needed sleep, I was no longer sleeping soundly.

And then, I started Looping.

Living with diabetes, we know that our sleep is affected. We all have those nights where lows or highs need attention. Pump lines get pulled out in our sleep and need to be replaced. Devices alarms – CGMs alert to out of range numbers, pumps demand refilled cartridges.

But even when there are no alarms waking us, or glucose levels that need ‘fixing’, our sleep can still be affected.

This became very clear when I started wearing CGM. I’d wake exhausted in the morning after a night of unbroken sleep, thinking that I should feel rested. A glance at my CGM trace would show hours and hours of low glucose, or bizarrely high levels. Or a combination of both, with rollercoaster lines overnight.

Since Looping, that just doesn’t happen. Back in January this year when I first spoke with someone who was using Loop, the thing he told me that stood out the most was that he was sleeping so much better. ‘I wake every morning between 80 and 90,’ he told me. I quickly divided by 18 and shook my head in astonishment. And suspicion.

I was really quite sceptical about it, to be honest. There are far too many variables that affect our glucose levels – even at night – and I couldn’t believe that there was anything that was able to deal with those variations. How could an algorithm manage ovulation or the arrival of my period? Or stress or delayed food absorption?

Well, somehow, Loop does manage them! Every morning, I wake up with my Dexcom showing a number in the 5s. Every single morning. And the CGM trace is straight.


What’s not straight, however, is the basal insulin delivery rates. They are ALL over the place, with constant tiny changes – dozens of them.

Those better nights of sleep are not just about me. ‘The hours of lost sleep are a lot less since I’ve been Looping, right?’ I said to Aaron and he nodded. ‘Definitely!’

But more than simply not losing sleep, my quality of sleep is so much better and I wake feeling refreshed. And I am a much nicer person, even before my first coffee!

 

Following last week’s post about how my ADATS’ talk was received, several things happened. Firstly, I was contacted by a heap of people wanting to chat about the reaction. Secondly, I was sent several designs of logos and t-shirts with ‘deliberately non-compliant’ splashed across the front, which obviously I will now need to order and wear any time I do a talk (or am sitting opposite a diabetes healthcare professional). And thirdly, discussions started about how we manage our diabetes ‘off label’.

While off label generally refers to how drugs are used in ways other than as prescribed, it has also come to mean the way we tweak any aspect of treatment to try to find ways to make diabetes less tiresome, less burdensome, less annoying.

When it comes to making diabetes manageable and working out how to fit it into my life as easily and unobtrusively as possible, I am all about off label. And I learnt that very early on.

Change your pen tip after every use.’ I was told the day after I was diagnosed, meeting with a diabetes educator the first time. ‘Of course,’ I said earnestly, staring intently at the photos of magnified needles showing how blunt the needles become after repeated use. ‘Lancets are single use too.’ I nodded, promising to discard my lancets after each glucose check. ‘You must inject into your stomach, directly into the skin – never through clothes, and rotate injection sites every single time.’ I committed to memory the part of my stomach to use and visualised a circular chart to help remind me to move where I stabbed.

Fast forward about a week into diagnosis. Needle changed once a day (which then, in following weeks, became once every second day, every third day, once a week… or when ‘ouch – I really felt that’); I forgot that lancets could be changed; speared (reused) needles directly through jeans or tights into my thighs, having no idea which leg I’d used last time.

And then there were insulin doses. ‘You must take XX units of insulin with breakfast, XX with lunch and XX with dinner. That means you need XX grams of carbs with breakfast, XX with lunch and XX with dinner. These amounts are set and cannot be altered. You must eat snacks.’ I took notes and planned the weekly menu according to required carb contents. Within a week, I’d worked out that if I couldn’t eat the prescribed huge quantities of carbs, I could take less insulin and that all seemed to work out okay. And I worked out how I didn’t need to have the same doses each and every day. It was liberating!

I switched to an insulin pump and the instructions came again: ‘You must change your site every three days without fail.’ I promised to set alarms to remind me and write notes to myself. ‘Cartridges are single use,’ I was told and vowed to throw them away as soon as they were empty. Today, sometimes pump lines get changed every three days, sometimes three and a half, sometimes four and sometimes even five. Cartridges are reused at times…

I was also told to never change any of the settings in my pump unless I spoke with my HCP. But part of getting the most from a pump (and all diabetes technology) is about constantly reviewing, revising and making changes. I taught myself how to check and change basal rates – slowly and carefully but always with positive results. (For the record, my endo these days would not tell me to never change my pump settings.)

CGM came into my life with similar rules, and as I became familiar with the technology and how I interacted with it, I adapted the way I used it. Despite warnings of never, ever, ever bolusing from a CGM reading, I did. Of course I did. I restarted sensors, getting every last reading from them to save my bank balance. I sited sensors on my arms, despite warnings that the stomach was the only area approved for use. I started using the US Dex 5 App (after setting up a US iTunes account and downloading from the US App Store) because we still didn’t have it here in Australia, and I wanted to use my phone as a receiver, and seriously #WeAreNotWaiting.

And today…today I am Looping, which is possibly the extreme of using devices off label. But the reason for doing it is still the same: Trying to find the best ‘diabetes me’ for the least effort!

The push back to curating our diabetes treatment to fit in with our lives is often frowned upon by HCPs and I wonder why. Is it all about safety? Possibly, but I know that for me, I was able to always measure the risk of what I was doing off label and balance it with the benefit to and for me. I believe I have always remained as safe as possible while managing to make my diabetes a little more… well, manageable.

It can be viewed as rule breaking or ‘hacking’. It can be thought of as dangerous and something to be feared. But I think the concerns from HCPs go beyond that.

As is often the case, it comes down to control – not in the A1c sense of the word, but in the ‘who owns my diabetes’ way.

When we learn how things work, make changes and adapt our treatment to suit ourselves, we often find what works best is not the same as what we are told to do. And I think that some HCPs think that as we take that control – make our own decisions and changes to our treatment – we are making them redundant. But that’s not the case at all.

We need our HCPs because we need to be shown the rules in the first place. We have to know what the evidence shows, and we need to know how to do things the way the regulators want us to do them. We need to understand the basics, the guidelines, the fundamentals to what we are doing.

Because then we can experiment. Then we can push boundaries and see what is still safe. We can take risks within a framework that absolutely improves our care, but we still understand how to be safe. I understand the risks reusing lancets, or stretching out set changes by a day or two. Of course I do. I know them because I’ve had great HCPs who have explained it to me.

Going off label has only ever served to make me manage my diabetes better. It has made me less frustrated by the burden, less exasperated by the mundanity of it all.

And the thing that has made me feel better – physically and emotionally – about diabetes more than anything else is using Loop. So, use it I will!


It seems silly to have to say this, but I will anyway. Don’t take anything I write (today or ever) as advice. I’m not recommending that anyone do what I do and I never have.  

Helen Edwards from Diabetes Can’t Stop Me has written a thoughtful piece today on her blog about why she has ‘broken up with CGM’.

I truly love this post, because it once again reinforces the ‘one size fits no one’ approach that I have always advocated when it comes to diabetes.

As I read Helen’s story, I realised I could have written this post. I was reminded of the long and very winding road that it took for me to get to a point where I could live comfortably with all the tech. Learning to love it took even longer. It certainly was not love at first sensor! For a long time, I felt overwhelmed by all the data, the alarms drove me to distraction and I struggled at times to live with an invisible condition when all my robot bits are on show.

I showed the below photo during my talk at ADATS last week. It’s from a few years ago (and accompanied this post) when I was really struggling to live alongside CGM. I had to work up to convince myself to put on a sensor and made all sorts of deals to try to limit the stress I was feeling. I turned off all the alarms except for the low alarm. I promised myself that I would rip the sensor out if I was starting to be paralysed with all the information being constantly thrown at me. And I reminded myself that the data was just numbers trying to retrain my brain to not feel judged by the electronic device.

This wasn’t the first time I made such a deal with myself. And it took this and many other attempts of starting to wear CGM before everything feel into place. There were times where I pulled sensors out after two days because I just couldn’t cope with it.

Learning to live alongside diabetes technology is not an easy decision. There is bargaining, sacrificing and trade-offs. The tech is brilliant, but it rarely, if ever, works as simply as the shiny brochures promise. It’s not perfect and the limitations of the technology should never be blamed on the person wearing it.

Also, it’s no good speaking to people like me, because I’m all evangelical about it and spend all my time telling people how much I love it – while conveniently forgetting how long it took to find that place.

The tech is not for everyone and no one should be made to feel bad if they choose a more analogue approach to diabetes management. This is another slide I showed at last week’s ADATS meeting (from this post):

Right device; right time; right person. The right device might actually be no device at all. And that is absolutely fine!

(Hat tip to Professor Tim Skinner for the title of today’s blog post.)

In an effort to terrify the bejeezus out of healthcare professionals get the word out about Loop and OpenAPS to a group of diabetes healthcare professionals, I decided to work my Loop story into my talk at last Friday’s #ADATS meeting. I was a little nervous about it, but being on the ADATS Committee, and recognising the name of the conference – Australasian Diabetes ADVANCEMENTS and TECHNOLOGIES Summit – I knew that there was no way I could talk about the latest diabetes tech advances and not talk about the DIY movement.

To set the scene, I started with the old chestnut of showing how far diabetes technology has come:

Then showed a slide with all our shiny new tech:

But then I stopped, and changed the slide a little, leaving the same photos, but altering the title to ask a question:

And then, I showed them what cutting edge diabetes tech really looks like:

I used the next slide to explain how I drive my Dtech these days, and how my iPhone and Apple Watch are part of my diabetes tech arsenal.

‘So…How many of you know about OpenAPS or Loop,’ I asked. Very, very few hands went up.

What about Nightscout? How many of you know about, and understand,d Nightscout?’ A few more went up – but really not many.

I nodded my head, completely unsurprised.

Then I told the audience I’ve been using Loop for almost three months. I explained how I ‘hacked’ an insulin pump, ‘became an app developer and built an app’… and now, my basal insulin is fully automated. I showed a screenshot of the app, and pointed out the dozens and dozens of small basal rate adjustments automatically made every day.

I explained how much better I feel, how much more time my glucose levels are in range and how I simply wouldn’t be without this technology now. I told them how I now wake up feeling that I can move mountains because night after night after night my glucose levels remain in a flat, straight line thanks to those micro basal adjustments, and I wake to a number that ranges no more than between about 5mmol/l and 5.8mmol/l.

‘How many of you are a little scared by this?’ I asked and waited. Hands shot up; many heads nodded. I waited some more, shrugging my shoulders a little.

‘This isn’t the scary future,’ I said. ‘It’s not dangerous, futuristic or downright terrifying – which is what I’m sure some of you are thinking. This is happening here and now. There are two other people in this room using one of the two systems and there are probably around thirty people across Australia who have started using one of them.

‘And if you are a healthcare professional working with people with diabetes, it makes sense to be aware of these technologies. Also, Nightscout has been around for a number of years now. It’s really not okay if you are working with people with diabetes and you don’t know about Nightscout…’

I know that my talk received a mixed reception. There was a lot of nervousness from some of the device company reps in the room – especially the maker of Loop-able pumps. Some HCPs were simply aghast and did nothing to hide their feelings, one person telling me that I was being irresponsible doing such a thing and even more irresponsible talking about it.

But others were far more interested. The rep. with type 1 diabetes from a device company who announced at the end of the day that he was ‘going home to hack his insulin pump’ was obviously interested. As were a number of other people with diabetes in the room. A couple of HCPs spoke to me about my experience, and one told me that he knows someone in the process of setting up Loop.

But mostly, there was nervousness and shock that not only is this happening, but that there are step-by-step instructions online so that anyone can get onboard. ‘You mean that ANYONE can access the instructions? For free? So any of my patients could do this if they knew about it?’ asked one endocrinologist while a diabetes educator he works with stood behind him sharing his horror. ‘Yep!’ I said cheerfully. ‘It’s all open source. No one is trying to make a buck out of this. It’s for everyone. Isn’t that fantastic! They didn’t share my enthusiasm.

Here’s the thing…I wasn’t (and am not) for a moment suggesting that it is the role of HCPs to start recommending this technology to the PWD they see. But it is naive of them to deny it is happening, or that the only way people with diabetes will find out about it is if their HCP mentions it. Also, I’m not recommending that everyone with diabetes should find a suitable pump and start Looping. I’m simply sharing my story – which is what I have always done here on this blog, and elsewhere as a diabetes advocate.

The title of this blog post came about when I mentioned the mixed reception a little later on in the day. I was sitting with three others at ADATS (who I knew would be sympathetic), and psychologist Tim Skinner commented that one of the reasons that HCPs might be so uncomfortable is because I am going beyond simply not following their directions of how I should be managing my diabetes. ‘You’re actually being a deliberately non-compliant diabetic,’ he said cheekily (Tim was one of the authors on the Diabetes Australia Language Position Statement, so he knew the response he’d get from me using such terminology). ‘This is a lot more than simply being ‘non-compliant’. You have actively hacked a diabetes device and are using that to change the way you are managing your diabetes. Deliberately non-compliant!’

He’s right. I never thought I’d wear the term ‘non-compliant’ as a badge of honour, but right then and there, I kind of was.

Even my t-shirt is deliberately non-compliant. (You can get your own by clicking on the photo.)

 

LOOP!!! I know you want more info. You can read my last couple of posts about my experience here and here, but the full details, continually updated by the brilliant Loop and OpenAPS brains trust can be found here. Read them. Also, you may want to join the (closed) Looped Facebook group. And if you are in Australia, we have our own (closed) page dedicated to local issues at Aussie Aussie Aussie. Loop, Loop, Loop. (And just a reminder – no one can build your Loop system. You have to do it yourself, but it is actually super easy once you have all the components.)

Disclosure

My travel costs were covered by the National Association of Diabetes Centres, the organisers of ADATS. I was on the ADATS organising committee.

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