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Last Friday, as I was getting ready to fly home from Copenhagen, I realised that the beautiful city was being inundated with some of my favourite European diabetes bloggers and advocates.

I was lucky enough to manage to meet up with the truly wonderful Tine who I have come to know and love through my involvement in the Roche Blogger program. When it comes to dynamic, sassy, smart and downright wonderful advocates, Tine is at the top of the list. We caught up briefly, talked about diabetes and language, and drank iced coffees and I am so glad that I got to see her gorgeous face.

Tine. She is so wonderful!

Unfortunately the rest of us were ships in the night and probably standing right near each other on opposite sides of the departure/arrival gates divide at Copenhagen airport. Brutal!

My friends were in Copenhagen to meet with the team from YpsoMed, which they do a couple of times a year, to talk about the YpsoPump and other YpsoMed products, advances in diabetes technologies and come together for some peer support. Some of them are using the YpsoPump, but certainly not all of them.

I’ve had a play with the YpsoPump a few times in recent years. My good mate Finn, who blogs here, (in German; Google Tanslate is your friend) stayed with us a couple of years ago when he visited Australia, and I tried bribing him with Tim Tams in exchange for his YpsoPump. Alas, my tactics didn’t work. (Apparently he needs it to infuse insulin into his body or something.)

And each year at EASD, I would annoy the team on the YpsoMed stand by demanding to know when they were bringing their pump to Australia. (This is standard line of questioning for me at international conferences when I see technology I like the look of and thing we should have access to. I am probably known as the annoying woman from Australia, a badge I am willing to wear and a cross I am willing to bear.)

Yesterday, the YpsoPump was launched in Australia. I’d like to think it was my pestering, but the reality is that it is a smart move by a company that has been around the diabetes world for some time now and saw a market that is truly crying out for some choice.

Lucky us!

So, here are a couple of things of note about the YpsoPump

  • Undeniably, the first thing that is abundantly clear is the size of the pump. It is teeny-tiny compared with other offerings. The Medtronic 640G, in a side by side comparison, looks like a monster. (This was one of my criticisms when I trailed that 640G a couple of years ago. It felt bulky, clumsy and huge!) The YpsoPump is streamlined and sleek, and sits comfortably down my bra. (First thing I did with it. I know; all class.)
  • The touchscreen and icons are a departure from the buttons we have come to expect on insulin pumps. When the pump is ‘sleeping’ it is completely black and blank. This adds to the sleek look of the device.

(Having a little play at EASD last year.)

  • It is pretty easy and intuitive to use. We got to have a play and set up the pump yesterday and it was simple and logical. Loading and priming the glass cartridge was quick. The cartridge holds 1.6ml of insulin – this is not a pump for people on huge daily doses of insulin.
  • The pump uses and is integrated with a smart phone app (search MyLife from the App Store to download for free). At this stage it is uni-directional, so the pump cannot be driven from your phone. (i.e. The pump speaks to the phone/app; the phone/app doesn’t speak to the pump.) However, this is something that will, in the future, happen. (‘In the future’ apparently means a couple of years.) For those of us Looping, we shake our heads, because we are currently doing this and it makes no sense that regulatory processes are holding up something that is already available and perfectly safe. It also negates the whole thing about discretion when it comes to the pump. If you still need to pull it out from under your clothes, it doesn’t matter how small the thing is – you still need to pull it out from under your clothes!
  • Really pleasingly, customer service is all being run out of Australia which means that whoever you speak with has a really good understanding of the Aussie health system. This is especially useful for ironing out any potential glitches with getting approval through PHI.
  • Consumables are already on the NDSS. Want this pump? It’s ready to go. Talk to your HCP!

Two other things I asked about were a little broader than simply the use, design and practicalities of the pump.

Firstly, I wanted to know what was going to be done to protect us from coming to love this device, only to see it disappear from the market in four or six or eight years’ time. I have lived through the loss of the beloved Cosmo pump (I LOVED that pump!) and now Animas. While for some this can be seen as just an evolving market, I think it is much more than that. We are intimately connected with these devices. We see pumps come and go from the market. We invest in them, we become attached to them (literally and figuratively). To have them disappear from the market is heartbreaking for some people. I was grateful that Eberhard from YposMed acknowledged our disappointment. He told us that the company has been around for a long time and is very invested in continuing to provide new, innovative and cutting edge technologies to the diabetes market. I hope he is right, because I can see people falling in love with this pump very easily.

And secondly, I wanted to know what sort of engagement YpsoMed were doing to ensure that what they are delivering (they have a lot of things in the pipeline, including a patch pump due for release in 2012/22) really aligned with what people with diabetes want and need. Their engagement with the community is strong and they seem committed to it. The European blogger group has been meeting regularly and provide feedback on design and development. The launch of the product into Australia was with consumers (the HCP launch is today). There is definitely a desire to work and link closely with people in the community and that should be commended.

Just some of the advocates and bloggers at the YpsoPump launch yesterday.

With the YpsoPump ready to go in Australia, we are seeing increased choice in the pump market. No longer should we feel pushed into a pump that we don’t really want because that’s all there is, or all that is supported. This is only a good thing for people with diabetes.

You can find out more about the YpsoPump by going here.

DISCLOSURES

You bet! YpsoMed flew me to Sydney, put me up in a hotel, and fed and watered me. They did not pay me for my time, nor for my words. They did not pay me to ask annoying questions – or to not ask annoying questions for that matter. You can and should consider this when reading what I have written today.

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In what has possibly been the worst kept secret in diabetes in Australia, AMSL today announced their partnership with Tandem Diabetes Care, officially revealing that the much anticipated TSlim pump is on its way to Australia. You can read all about it here, but please note that at this time there is no official launch date available. AMSL is still going through registration and subsidy processes, and this will take some time. (But we’re told we can expect it on the market some time later this year.)

This is the latest development in changes to the Australian pump market which, to be honest, was looking a little dire.

With the announcement that Animas was leaving the market completely (the Australian departure was declared a few months after our North American friends were told; no one particularly surprised), Australians were left with a choice of pump offerings from Medtronic and Roche. Cellnovo had just launched, but there were supply issues. Really, it was slim pickings for us!

Fast forward three months and the Aussie pump landscape is looking a little different, which is great news if you are thinking about starting on a pump, or are due for an update soon. If you’re in the market for a new pump, you can now consider:

And now, Tandem will be AMSL’s pump offering. For updates, check the AMSL socials.

So what does this mean for me? Well, twelve months ago, I would have been beside myself with excitement at today’s announcement. My pump’s warranty would have been about to expire and I was in the market for a new pump. I was extraordinarily frustrated at the ‘pump limbo‘ I found myself in with the limited options available to me not giving me any joy at all. I would have been hassling the gorgeous AMSL team for more details, desperate to get my grubby paws on a TSlim the second it was on the market.

Today I am indeed thrilled by the announcement. I am all about choice and this provides people with diabetes who want to pump another option. This is nothing but a great thing! But for me personally, I am actually happy with my old loopable pump and won’t be making any moves away from what I am doing.

A shiny, sexy new TSlim pump would be lovely shoved down my bra. But unless I can loop with it, it’s not for me. But I will certainly be keeping a very, very close eye on developments, because I do know that with its Dexcom integration, it will have hybrid-closed loop capabilities available in the not too distant future…

I really love a good list. And twenty is such a lovely round number. Plus, I’m going to milk the twentieth diaversary thing for as long as I can. Or at least until I bore everyone. And myself.

On the day I was diagnosed, I was given a meter. It came in a padded navy bag and had a cream-coloured lancet device. The meter looked quite similar to a basic BGL meter today. And it took twenty seconds once the drop of blood was placed on the strip to countdown to give me my reading. I know, twenty seconds! Barbaric!

There have been a lot of advances in DTech in the last twenty years. Some of it has been incredible (CGM, Flash, advances in pumps, better insulins); some…not so much (hello GlucoWatch!). But either way, I’ve always been interested in the latest technologies and have wanted to get my hands on it as soon as possible. It’s not all been great. But I’ve always learnt something when I’ve tried something new.

So, here are twenty things I’ve learnt about diabetes technology.

  1. There is no one way to do diabetes technology. This fits into the My Diabetes, My Rules thing again.
  2. Diabetes technology does not only refer to the latest and greatest! It includes your BGL meter (even if you are using one from a few years ago!), your insulin pen, the app you use to track your glucose levels and food intake…
  3. And MedAngel!
  4. You don’t need to use the latest and greatest if you don’t want. If you are happy with using a BGL meter and MDI, keep going. AKA: If it ain’t broke, don’t fix it. Unless you want to. And then knock yourself out.
  5. An insulin pump is just a way to deliver insulin. That’s all it is! It’s a fancy way to do it, but it’s just an insulin delivery device. There are other ways to deliver insulin, so if you don’t want to pump, that’s perfectly okay.
  6. But if you do want a pump, learn to use it properly. I spent the first three years pumping not having a clue with what I was doing because I was trained by a rep from the pump company who just wanted to get in and out as quickly as possible. I learnt what the buttons did, but had no idea about anything else. I learnt nothing about carb counting, or how to make adjustments. My basal rates were wrong, but I couldn’t fix them because I’d never understood how to.
  7. That actually goes for any sort of technology. You won’t get the most out of anything if you don’t know how it works.
  8. So…find HCPs who know DTech, will support whatever you want to use, are up to date with the latest technology and are okay with you customising your devices to suit your needs.
  9. Once you find those awesome HCPs, listen to them. Learn the rules for your Dtech devices. And then break them to suit you. Being deliberately non-compliant only works if you know what you’re being deliberately non-compliant about!
  10. And further to that, after listening to your HCPs and reading all the official information and documentation, find out the truth about diabetes technology! Turn to your peers and learn how to use it in real life. I can honestly say that every single tip and trick I have learnt when it comes to DTech came from other people with diabetes. Peer support for the win!
  11. Worrying about how and where you will site wearable technology is not a frivolous thing to worry about. It makes perfect sense and it’s okay if that is something you are concerned about or if it’s the reason you’re wary about getting a pump, CGM or Flash glucose monitor. (But do ask around for tips in online groups to hear about how others manage – you’ll get some great ideas!)
  12. Just because you have decided to try something doesn’t mean you have to use it forever. If you decide that tech isn’t for you, put it away in a drawer, or pass it onto someone who wants to use it, and go back to what you were doing before. Or switch between the two. DTech is not like a puppy – it can actually be just for Xmas!
  13. Dtech may not necessarily make your diabetes easier to manage. Sometimes, it can feel like (and may be) more work – especially at first. Those of us who have been using different devices for some time can forget that.
  14. Just because one brand is the market leader and has the flashiest flyers, or your HPC wants you to use it, doesn’t mean that’s the one to go with. Look at all on offer and work out which one works best for you.
  15. And if colour is important (or anything else about the way it looks), and you’re using that as a factor when making a decision with which device to choose, that is perfectly fine!
  16. Diabetes technology is not a luxury item and don’t let anyone tell you otherwise. I once had a politician ask me when I was giving a presentation at Parliament House why it should be up to the Government to fund my ‘Mercedes Benz DTech’ when there was a perfectly suitable Hyundai option available. We had such a fun conversation after that…?!
  17. The playing field is not even. Some diabetes technology is expensive to use and out of reach of a lot of people. This is unfair. And sometimes, it’s really hard to talk about DTech access when people can’t access insulin.
  18. Going old school and analogue is perfectly fine if that’s what works for you. Sure, there are brilliant tracking apps (hello mySugr!), but if you really want to use a record book and pen, knock yourself out.
  19. DTech can be overwhelming at times. There can be a lot of data available all of a sudden and it is perfectly understandable if you find that it’s a little bit too much to manage.
  20. Don’t compare your glucose graphs to someone else’s. Their diabetes is not your diabetes.

Extra tip for good luck:

Just as you don’t need to use the latest in DTech, you don’t need to know all about everything new or emerging. But it makes sense to keep an eye out if you can. Find a trusted source that gives sensible information that is up to date. Some great places to start include diaTribe, Diabetes Mine and A SweetLife.

Since my talk last at ADATS year about my journey to Loop, I have had many HCPs want to talk to me about my experience using a DIY system. When I was ATTD two weeks ago, several Aussie HCPs also at the conference cornered me, and, in almost hushed tones, asked if they could pick my brains about the whole DIY thing.

I have to keep reminding people that all I can talk about is my own experience – I’m certainly not an expert, my involvement has been following the brilliantly clear step-by-step how to guides developed by a brains trusts of brains far, far smarter than mine could ever hope to be. But I am always happy to talk about my own decision to try Loop, and experiences since.

DIY is not going anywhere and I’m pleased to say that over the next few month I’m giving a number of talks at HCP conferences where I have been asked to speak about how my diabetes management – and attitude to diabetes – has changed since I started Looping. It great to see this on the agenda of diabetes HCP meetings (including the ADEA Victorian Branch conference later this month and the ADS ADEA ASM – or whatever it’s being called now – in August this year. I hope that ADATS will give it more airtime when that come around in October.)

Naturally, and I suppose somewhat reassuringly, the first part of any conversation about Loop is about how safe it is, or rather, questions including varieties of: ‘But the safety! There’s no regulation! There are no RCTs! Where’s the evidence?’ These are often the same things held up by device companies when talking about their products: ‘We are ALL about safety! We have jumped through all the regulatory hoops and come out the other end with flying colours! Here are our RCTs! Here is the evidence!’

When I began reading up about Loop, the thing that would make me close my computer, shake my head and pack all thoughts of it away, was not that I didn’t think it safe. It was that I didn’t think I had the technical aptitude to make it happen.

From the very first reading of the documents and listening to others speaking about it, I realised that this was something that had been built from the foundations of safety. Unlike the health condition that moved in almost 20 years ago.

Type 1 diabetes is not no-risk. At the point of diagnosis, we are handed a supply of a potentially lethal drug. I know I don’t like to think of it in those terms– insulin is my lifeline – but anyone who has even an ounce of knowledge about the treatment of type 1 diabetes knows how potent insulin is.

We know that too much insulin – even a tiny bit too much – can be problematic. And that problem spectrum can be from ‘Shit, I need jelly beans’ to … well, to death. We are faced with this reality every day. I have enough insulin in my pump at any time for it to be extraordinarily problematic if overdosed.

With this knowledge on board – alongside that theoretically lethal drug on board – we mitigate risks with every single thing we do. We over treat lows; we err on the side of caution when we bolus – under dosing for fear of overdosing.

We live safety, we breathe safety – all the time – because if we don’t the risks are high. All too terrifyingly high.

I say this without an ounce of disrespect, but when a device company or HCP implies – intentionally or otherwise – that those of us using a DIY system are being reckless and being unsafe, I find it insulting, and a little disingenuous, because any conceivable hazard is highest to those of us who have the devices stuck to our bodies, and using an algorithm that decides how much insulin to push into our bodies.

I feel much safer Looping that I did pre-Loop. Scary hypos are a thing of the past. My glucose levels sit in a straight, tight line for most of the day instead of the rollercoaster I was used to that would send my mind into a permanent state of fuzziness. I am not running low overnight, only finding out for just how long when I finally wake in the morning and see my Dex trace below the red line for hours and hours and hours without my knowledge. My A1c is in the range that means (allegedly) I am least at risk for developing diabetes complications.

I honestly don’t know how I can be any safer while living with a health condition that throws so many unsafe things at me!

Curled up in the comfort of my bed in Melbourne on Saturday night, I was transported to London where I was watching the live stream and live tweets of the Type 1 Diabetes Rise of the Machines event. (You can read details of that here, or by checking out the #T1DRoM Twitter stream.)

When you are not actually there and able to see and gauge the reaction of the audience, it can be easy to misinterpret the vibe of the room. I couldn’t see the faces or body language of the people in the audience, so I wasn’t sure if my response was the same as theirs.

But there are somethings that can’t be missed – especially with a live Twitter feed!

A representative from one of the device companies was speaking about their range of products, one of which is a blinded CGM device*. Immediately, I bristled. His words celebrating the ‘blinded’ nature of the device, ‘There’s no way for you to interfere with it’,  did nothing to make me feel more reassured at what he was saying.

The tweet I sent out pretty much sums up how I felt about his comments:

And this one from Dana Lewis, who was a guest speaker at the event, was bang on:

Yeah – clearly I was not the only one who had that reaction!

I remember a number of years ago wearing a blinded CGM. It was actually the first CGM here in Australia and I was on a trial for something (I actually can’t remember what the trial was for…) and wearing the clunky CGM was part of the study.

But I certainly do remember demanding that once I returned the CGM (after about 3 or 4 days), I was given a print out of my data. ‘Why would you want that?’ the trial nurse asked me. I imagine that the look I gave her could only be described as ‘withering’.

‘Um…so I can see what is going on with my glucose levels throughout the day. That data is gold – there is no way I will ever have seen anything like it before and the insights will be incredibly useful.’

‘But you probably won’t be able to interpret it all. And what are you going to do with the data?’ That question was asked with an element of suspicion.

I don’t suffer fools and was about to yell loudly at the trial nurse who needed some lessons in ‘patient empowerment’, so I decided to take my questions elsewhere, asking to see the trial supervisor who had enrolled me in the study. The result was a crisp envelope with my name neatly printed across the front handed to me at the end of my next visit to the centre.

Fast forward – probably about 17 years – and I wear CGM all the time and use the data to make daily adjustments to my insulin doses. (Well I did until Loop took over that for me. Reason #124978 I love Loop. Have I mentioned that before?)

I can’t imagine having something connected to me that is collecting information that I could use in real time to improve my diabetes management and not be able to access that data. How frustrating it would be to have something attached to me that could tell me when I was going out of range, but not letting me know it at the time so I could actually do something about it!

Today, if a healthcare professional suggested I wear a device for any period of time where I could not access the data there is no way I would agree.

If you think that it is a good idea because not all PWD could understand the information, then that is a shortcoming of the education process – not a shortcoming of the person with diabetes. And, yes, of course not everyone wants to see all their data, but they should certainly have it offered to them if it is out there!

Denying us access to our own data is simply another way of trying to control the narrative of our health condition and our health education. Not arming us with the information – especially if it is readily available – serves no one.

*Blinded devices are often referred to as the ‘Pro’ version which makes me a little annoyed. Pretty sure the ‘Pros’ here are the ones wearing the devices and analysing and acting on the data 24/7…

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.)

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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