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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.)

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There is one word – actually an abbreviation of a word – that strikes particular fear through every fibre of my body: ‘Gastro.’ I hate even talking about it. Just typing the word sent a shudder down my spine. (I am nothing if not dramatic…)

A work friend and colleague was telling me about how she had been struck down with gastro a couple of weeks ago – a lovely gift from her kinder-aged daughter. Just the mention of the nausea and vomiting was enough to have me sweating and getting nervous. For the record – and so you understand my irrational fear of the topic – we weren’t sitting next to each other in an office while she was telling me. She was on the other end of the phone. Two states away in Queensland. I was in Melbourne. And yet I was still looking around me wondering what I should disinfect.

A couple of weeks ago, on a Tuesday night I went to bed with my plans for the next couple of days clearly organised and sorted in my head. I had a most-civilised mid-morning flight the next day, and then a couple of days of meetings in Adelaide. I’d booked a cab, checked in online for my flight, half-packed my overnight case and mentally gone through the check list of what needed doing in the morning before I needed to head to the airport.

And then, a couple of hours later I woke up startled, with a very unsettled feeling in my stomach. ‘That doesn’t feel good,’ I said to myself. I lay there for about thirty seconds trying to convince myself that it was all in my head and I was fine and that it would be best to close my eyes and go back to sleep. Before I jumped up and ran to the bathroom, making it there just in time before vomiting. For the first time.

I spent the next few hours alternating between throwing up and being flaked out on the sofa willing myself to not throw up. I was cold and sweaty and hot and clammy all at the same time. My heart rate was racing, and every time I stood up I was dizzy. I gripped onto the walls as I stumbled down the corridor to the bathroom, tripping over nothing but my own two feet.

At about 6am, I sent an email out saying I wouldn’t be getting to Adelaide and cancelled my flight. I crawled back into bed, still nauseous, thinking the worst was behind me. For the most part, it was. I threw up a couple more times before my official alarm went off at 7am.

I feel like death,’ I told Aaron. ‘And I bet I wind up in A&E.’ I used some choice words, mostly words beginning with ‘f’ and ending in ‘uck’, and started to work out how much time I’d lose in an emergency bed having to deal with HCPs wanting to remove my devices from me and ‘look after’ me.

‘Should I stay home?’ asked Aaron. ‘I can take you in that way.’ I told him it wasn’t necessary and that if I really needed to get to hospital my dad could take me. He got ready for work and the kid got ready for school and the two of them left, leaving me in bed, switching between dozing, holding my tender stomach and glaring at my iPhone and my Dex trace. I was hoping if I stared daggers at the trace hard enough it would stay in range.

My Loop was working overtime. I spent most of the morning between 3.5 and 4mmol/l thanks to my Loop cutting off all basal insulin. By about 11am, I could see my CGM trace starting to inch up closer to 5 and then 6, and Loop was making tiny micro adjustments to my basal rates.

I was able to keep water and some dry ginger down, and chewed on small blocks of ice. I didn’t feel dehydrated; I wasn’t going high. I didn’t have ketones. Things were looking good!

By 1pm, I was feeling comfortable enough to call into the meeting I should have been at in Adelaide. My nausea was less pronounced. I felt washed out, achy and tired, but I hoped I was out of woods, and needing to go to A&E was becoming less and less likely. Thankfully.

I have generally been pretty lousy at managing gastro and diabetes. I usually do end up in A&E, needing to be rehydrated and given some anti-nausea meds though an IV as I’m unable to keep them down after taking them orally.

But of course, it ends up being far more of an ordeal than simply lying on a bed with fluids being pumped into me. There is the inevitable request for my insulin pump to be removed so that insulin can be administered via IV – even if it’s clear my pump is working just fine.

Nurses insist on checking my glucose levels, refusing to pay any attention to the CGM spitting out readings every five minutes. My requests (demands?) to self-manage my own glucose levels – and diabetes generally – are ignored. I’ve no idea what would happen if I tried to explain the DIY APS thing I have going on these days, but suspect that wouldn’t go too well.

Usually, it takes me making an emergency call to my endo for things to go the way I really want them to – fluids, dark room, anti-nausea meds and home in about 4 hours (at the most).

By the time I leave I often feel worse for wear – and certainly more battle scarred – than I did when I first walked in there, doubled over and trying to not throw up on anyone.

But I avoided all that the other week. I managed to spend the day in the comfort of my own home, breathing in fresh air from the open windows and generally feeling comfortable and content. The only gastro hangover I had was a little exhaustion and abdomen discomfort. All in all, it was a good outcome. (But I’m still terrified of the word ‘gastro’…)

A much preferred view to a cubicle in A&E!

In Australia, WDD lasts for about 36 hours. From the first ‘Happy World Diabetes Day!’ to the final SoMe post with the #WDD hashtag, it was a day-and-a-half of diabetes activism and advocacy and awareness raising. Thank the gods it’s over!

Here a collection of things I’ve found interesting and wanted to share from this week…and most of them are by or about real life Diabetes SuperSHEroes!

One dollar a day

On World Diabetes Day, Life for a Child launched their new 1,000 Donor Campaign. An ongoing donation of USD$1 per day will ensure a child with diabetes has access to life-saving insulin. 1,000 donors will help 1,000 young people in need.

Read more about the campaign, and learn how to donate, here.

Merch!

My wardrobe at the moment seems to be predominantly made up of diabetes t-shirts. Most of them have a very clear Loop theme…I wonder why! (Here is where to get to find these designs.)

And then, this week, I received this in the post from Casualty Girl and it is definitely going to be on high rotation this summer:


Also, from Casualty Girl, a new pouch to house my glucose meter (to go along with my diabetes spares bag):


Casualty Girl is the brainchild of talented designer Monica Vesci, a complete and utter star in diabetes sartorial excellence! Have a look at her e-shop for these products and lots more here.

 Diabetes and feminism

My post on Monday about privilege and diabetes generated a lot of discussion. I wish I could say that was the end of the chatter and cries of ‘What about me?’ because of the women and diabetes theme, but, alas, it was not.

Georgie Peters, who I adore and admire, wrote a great piece on her blog about the issue too. Read it here.

Something fun

Sure, it’s just a bit of fun, but lots of people have had a giggle as they worked out their name using the Diabetes Australia SuperHEro Name Generator.

Mine is Phantom Islet Injector. Which, when you think about it, is actually kinda true!

Carolyn’s Robot Relative

Another amazing woman, Dana Lewis, has added yet more strings to her bow, and is now a published children’s book author. I received my copy of ‘Carolyn’s Robot Relative’ on Monday.


It’s a great way to explain diabetes devices (and other health gadgets) to kids.

You can get your own copy on Amazon here, and because Dana is wonderful, she she will using any profits from the sales of the book to cover the cost of copies she will donate to schools and hospitals. She really is one of the best people in the diabetes community!

How to NOT be ‘patient-centric’

PHARMAC, the New Zealand government agency that decides which pharmaceutical and medical devices to publicly fund in NZ, announced this week a new sole arrangement to limit glucose monitoring to meters and strips from Pharmaco (NZ), distributors of Caresens products.

This means that people with diabetes in NZ able to access subsidised meters and strips will have access to only four meters.

Not a great result for people with diabetes who want choice in their diabetes devices, is it? More here.

Insulin affordability in the US

Laura Marston has been a long-time advocate for affordable insulin for people living with diabetes in the USA.

She wrote this piece for the BMJ Blog about her own story of managing insulin affordability, explaining that since her diagnosis in 1996, the list price of a vial of Humalong has risen by over 1200 per cent (that’s not a typo).

Read Laura’s piece to get a good understanding of the situation in the US, and just how messed up – and tough – it is for people with diabetes just trying to afford the drug they need to stay alive.

Asha’s diabulimia story

Asha Brown founded, and is now the Executive Director of, We Are Diabetes, an organisation supporting, and providing information and education for people living with diabetes and diabetes-related eating disorders.

She has written this important piece about living with diabulimia that is a must-read for anyone and everyone affected by diabetes.

What’s next?

There’s no rest for the wicked! The end of WDD does not signal the finish of diabetes activities for the year. In just over two weeks’ time, the IDF’s World Diabetes Congress kicks off and it’s the only large-scale diabetes congress to have a whole stream dedicated to living with diabetes. Lots of diabetes advocates from all over the world will be there. You can start to look through the program here.

Of course I made Blue Circle cookies for WDD. 

I used this recipe, (thanks Nigella), and put to use the cookie cutter I bought for this very purpose back in February!

Each year for World Diabetes Day (WDD), the International Diabetes Federation (IDF) selects a theme and develops a suite of information resources. Member Associations of the IDF are encouraged to take on the theme, adapting the message to their country. In previous years, themes have included eye health and diabetes, access to healthy food, and diabetes education and prevention.

This year, the focus is women living with and affected by diabetes. And apparently, some people are not happy.

There are murmurings on a number of SoMe pages that the theme is discriminatory. Men have diabetes, too! And men care for people with diabetes! Why the focus on women? It’s not all about women, you know!

I’ve had a look through all the IDF materials and other WDD materials from other organisations and nowhere has it said anything about men not having diabetes, or not being involved in diabetes care. That’s not the point of the campaign at all, and if that is all anyone is seeing, they are missing the point.

Why the focus on women? Because health outcomes for women – including women with diabetes – are worse than for men. Women Deliver, a leading global advocate for the health, rights and wellbeing of girls and women, has some outstanding resources that show just how significant these differences are. Some information from the IDF materials:

  • As a result of socioeconomic conditions, girls and women with diabetes experience barriers in accessing cost-effective diabetes prevention, early detection, diagnosis, treatment and care, particularly in developing countries.
  • Socioeconomic inequalities expose women to the main risk factors of diabetes, including poor diet and nutrition, physical inactivity, tobacco consumption and harmful use of alcohol.
  • Stigmatisation and discrimination faced by people with diabetes are particularly pronounced for girls and women, who carry a double burden of discrimination because of their health status and the inequalities perpetrated in male dominated societies.
  • These inequalities can discourage girls and women from seeking diagnosis and treatment, preventing them from achieving positive health outcomes.

And these points don’t even mention women’s health issues such as diabetes and pregnancy, or reproductive and sexual health.

The campaign is not suggesting that men do not experience struggles when it comes to living with diabetes themselves, or are not involved and integral in the care of others living with diabetes.

But it’s not just the exclusion of men in this year’s campaign that seems to be a problem for some. I’ve seen a number of people complain because they feel the IDF materials are not talking about the great things women with diabetes can do. We can work! We can travel! We can have healthy babies! We can jump out of aeroplanes! We can be successful career women! We can run marathons! We can start businesses!

Of course we bloody can. And, again, nowhere in the campaign collateral is there any suggestion that women are not capable of doing these things. And if you are one of the women who is able to achieve all of those things, despite your diabetes, that is fantastic! But it is the very definition of privilege to think that just because your life is one way, then it must be the same for everyone else – or that if something is not a problem for you then it mustn’t be a problem for anyone else.

Those of us in a position of privilege can use WDD to draw attention to those in need. We can encourage others to donate and to lobby. We can highlight the inequality and inequity of health outcomes for different groups of people. This year, it’s about women.

And you known what? I can’t wait until diabetes health outcomes are the same for everyone, regardless of gender. Because then we won’t need to have a women as a theme.

Oh, did you know that next Tuesday is World Diabetes Day? There have been a few things online about it, so it may have come across your radar…

The International Diabetes Federation sets a theme each year for WDD and this year it is all about women and diabetes.

Diabetes Australia (disclosure: where I work) is running a campaign to acknowledge and recognise women living with diabetes, and women who support those of us who do.

We have developed a series of superSHEroe characters, representing just some of the amazing women affected by or working in diabetes. (The artist for these is the brilliant Claire Murray who I wrote about earlier this year. She is the creator of Megan, a wonderful diabetes superhero. Claire herself is somewhat of a superSHEro – her superpower is the ability to superbly draw and capture diabetes.)

Yesterday, we introduced the Dynamic Duo – Fantastic Frankie and her mum Lightening Lou.

I love this one so much because I feel that I have my very own Fantastic Frankie in my fabulous daughter.

My kid is my superSHEro. She has grown up around diabetes and while she doesn’t have it herself, she has undoubtedly been affected by diabetes because I live with it.

She came into this world and my diabetes meant that she needed to spend time in the special care nursery of the hospital. It meant that she needed to have her heel pricked for the first few days of her life multiple times to make sure that her glucose levels weren’t low.

She has grown up knowing to be careful of diabetes devices attached to my body when she jumps in for a cuddle. She had to learn early that there were times I simply couldn’t play with or read to her because diabetes needed my attention more urgently that she did. And she learnt to wait her turn, knowing I would always get to her; it just may have been after a juice box or jelly beans were consumed.

My superSHEro may not wear a cape or a mask, instead she’s likely to be wearing something she pinched from my closet. She may usually have her head in a Jane Austen book rather than lassoing the bad guys. She can be found lying on the grass out the front of our house with her puppy (who has no superpowers whatsoever, I’m afraid) or hanging out with her friends, listening to music rather than uncovering plots to bring down the free world.

My own superSHEro is bundled up in the mess and wonder of (two weeks from being) a teenager. She may be moody one moment, and delightfully snuggly the next. She is perpetually embarrassed by her parents, and horrified at the extent we will go as we desperately try (and fail) to prove to her just how cool we truly are.

But she can also be found grabbing me a juice when I’m low; asking me if I need anything when she notices me acting a little vague (usually just me being vague rather than anything else) or doing a spot of awareness raising and advocacy for diabetes. My diabetes isn’t hers – it doesn’t have to be and I’ve done everything in my (non super-) power to shield her from it – but she has taken it on in her own way.

Her superpower is her strength, her mind, her feistiness and fierceness, her vulnerabilities and her compassion. She takes on the world, she takes on my diabetes. And, (regretfully at times) she takes on her parents.

We wouldn’t have it any other way.

My superSHEro and her mother.

 

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!

 

We can work out how much we fork out to pay for diabetes.

It’s expensive. Of course it is. When I added up the costs earlier this year for a Diabetes Blog Week post, I estimated our family budget takes a hit of about $6,500 (excluding private health insurance) each and every year. That’s a lot of cups of coffee and a lot of pairs of boots.

But if I talk about the financial burden of diabetes alone, I’m selling short just how expensive the condition really is. The dollars I fork out each year are only one part of what it costs me – although it is a lot easier to quantify.

Because, there’s time. So much time.

We sit in waiting rooms, travel to appointments, take time out to make calls to make those appointments, call the pharmacy to order insulin and supplies, visit the pharmacy to collect insulin and supplies. Our prescriptions run out and we have to hastily find a time and way to refill them. We sit on the phone waiting to receive pathology results. We take time out of work time, out of family time, out of social time, out of our own time because diabetes demands it.

And then there is time dedicated to the day-to-day minutiae of ‘doing diabetes’. The time it takes to check our BGLs, or change a pump line, or site a new CGM sensor. Then there is the time to look at data, and act upon it. We lose time to treat lows, treat highs, watch CGM traces, question what to do with random numbers. We build up a sleep debt that never gets repaid, no matter how many early nights or nanna naps we try to sneak in.

It adds up. It all adds up – slowly and deliberately until suddenly we realise just how much time it takes. I tried to give a dollar amount to the time I spend doing diabetes, and stopped when I realised just how terrifying it was. If I was able to dedicate that much more time to paid work, I’d be spending a lot more time in New York each year. And then I got depressed and decided to stop adding up the hours I spend on diabetes.

But still, this is just scraping the surface. The money it costs and the time it takes are significant and must not be underestimated. However, the harder to measure personal costs and emotional burden should not be forgotten either.

I don’t really know how to gauge the extent of those costs. I don’t know how to quantify the psychological impact of diabetes – most of the time I can barely qualify it. But I know it’s significant.

During this month, there are a lot of efforts to try to explain diabetes to those not living with it. JDRF’s T1D Footprint calculator is doing the rounds again, and it’s an effective way to put numbers to just some of the tasks we do to manage our diabetes. I really like they’ve added an extra element to their social media activation: a photo frame with the words ‘T1DYouDon’tSee’ which acknowledges our invisible condition.

Because that’s the thing about diabetes. We can tally up hours and dollars, but measuring the stuff we can’t see is a whole lot harder. And for me, that’s where the real expense in diabetes lies.

It’s not really diabetes awareness time here in Australia. We save that each year for the second week in July and then add an extra spurt of awareness raising on World Diabetes Day. But many of us still decide to jump on the bandwagon of our US friends as they spend the whole of November talking diabetes and giving everything a blue wash.

I always start the month strong, lining up blue clothes and scarves and other accessories to be worn each day. I head off for a blue manicure, regretting it pretty much the minute I walk out of the nail salon. I change my profile picture, and add blue circles to all my photos. I write about every awareness and advocacy activity that comes my way.

By the time 14 November rolls around, I’m already starting to feel exhausted and over the whole thing and by the time my birthday hits in the final few days of the month, I’m ready to slap anyone who wants me to wear blue. All the different initiatives start to roll into one and I can’t remember what I’ve mentioned and what I’ve forgotten to spruik.

So this year I’ve decided to do things a little differently. I knew that I needed to make a change to my usual gung-ho approach when I shared a fun post-a-different-diabetes-photo-every-day Instagram challenge this morning and realised that I was feeling a little ambivilent. I was already feeling the pressure of deciding what to post and didn’t want to commit to posting a diabetes-related photo every day to my socials. So I deleted the post and thought about what I really wanted to achieve this month. And I decided that I want to take a gentle approach to my awareness efforts.

This year, when I get to the end of November, and look back over the month, I’m okay if my SoMe feeds are not a daily reminder of awareness-raising activities. I’m fine with not telling every single person I see that it’s diabetes awareness month and then share one new fact about diabetes for them to commit to memory. I can live with not being sartorially blue or navy or aqua or sapphire for the next thirty days.

Maybe I have some advocacy burn out. Maybe the last couple of weeks of feeling as though I’ve had to defend my treatment decisions have taken a toll.

And yes, I realise how privileged it is to say ‘I don’t want to do diabetes advocacy this month’ when I don’t need to fight for insulin or diabetes supplies. I won’t be abandoning my efforts in this space. (I know that there are some really important access activities coming up in coming weeks and I will be supporting them.)

But I am going to go easy on some of the other things I’m usually all over. And that’s okay. ‘My diabetes; my rules’ extends to how much we want to talk about it. So this year, I’m talking less. I’m not hitching a ride on every bandwagon and I’m taking it easy with the online activism. I’m going less blue and I am absolutely fine with that. T1D will still look like me. (Oh, but I probably will still get a blue manicure. And I’ll probably still regret it.)

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.  

I get to meet some pretty awesome people with diabetes around the globe. At EASD I caught up with Cathy Van de Moortele who has lived with diabetes for fifteen years. She lives in Belgium and, according to her Instagram feed, spends a lot of time baking and cooking. Her photos of her culinary creations look straight out of a cookbook…She really should write one!

Cathy and I were messaging last week and she told me about an awful experience she had when she was in hospital recently. While she wasn’t the target of the unpleasantness, she took it upon herself to stand up to the hospital staff, in the hope that other people would not need to go through the same thing. She has kindly written it out for me to share here. Thanks, Cathy!

______________

‘Good day sir. Unfortunately we were not able to save your toes. There’s no need to worry though. We’ll bring you back into surgery tomorrow and we’ll amputate your foot. It won’t bother you much. We’ll put some sort of prosthetic in your shoe and you’ll barely notice…’

I’m shocked. Still waking up from my own surgery, I’m in the recovery room. Between myself and my neighbour, there’s no more than a curtain on a rail separating us. I feel his pain and anxiety. He is just waking up from a surgery that couldn’t save his toes. This man, who is facing surgery again, leaving him without his foot. How is he gonna get through this day? How will he have to go on?

The nurse besides my bed, is prepping me to go back to my room. I tell him I’m shocked. He doesn’t understand. I ask him if he didn’t hear the conversation? His reaction makes me burst into tears.

‘Oh well, it’s probably one of those type 2 diabetics, who could not care less about taking care of himself.’

I’m angry, disappointed, sad and confounded. I ask him if he knows this person. Does he know his background? Did this man get the education he deserves and does he have a doctor who has the best interest in his patient? Is he being provided with the right medication? Did he have bad luck? Does he, as a nurse, have any idea how hard diabetes is?

The nurse can tell I’m angry. He takes me upstairs in silence. My eyes are wet with tears and I can only feel for this man and for anyone who is facing prejudice day in day out. I’m afraid to face him when we pass his bed. All I can see is the white sheet over his feet. Over his foot, without toes. Over his foot, that will no longer be there tomorrow. I want to wish him all the best, but no words can express how I feel.

What am I supposed to do about this? Not care? Where did respect go? How is this even possible? Why do we accept this as normal? Have we become immune for other people’s misery?

I file a complaint against the policy of this hospital. A meeting is scheduled. They don’t understand how I feel about the lack of respect for this patient. They tell me to shake if off. Am I even sure this patient overheard the conversation? Well, I heard it… it was disrespectful and totally unacceptable.

Medical staff need to get the opportunity to vent, I totally agree. They have a hard job and they face misery and pain on a daily basis. They take care of their patients and do whatever is in their power to assist when needed. They need a way to vent in order to go home and relax. I get that. This was not the right place. It was wrong and it still is wrong. This is NOT OKAY!

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