This week has been brutal. I arrived home from the IDF Congress very late on Saturday night after a very long journey from Abu Dhabi and since then, my body clock has had no idea where I am, despite my actual body being very much in the midst of Melbourne’s sometimes sweltering summer. My mind is all over the shop, sleep is something that happens if it wants (which it doesn’t really) and, for some inexplicable reason, I’m off coffee.

So, yes, I am a delight to be around right now. Want to hang out?

My time at the Congress, however, was one of those weeks that makes me feel so fortunate and privileged to do the job I do and have afforded to me the opportunities that come with it. Apart from a very full schedule of outstanding talks from leaders in the diabetes world, the congress was packed with advocates from around the world. I was totally with my tribe.

That’s me talking about diabetes and peer support!

There is lots to write about the Congress and I’ll do so in bits and pieces over the coming few weeks, but there were some stand out moments that I wanted to touch on and thought I’d try to do that now. (I’ve already started this blog post about four thousand, three hundred and twenty-eight times, so who knows how we’ll go here…)

Dot points – because they seem to take less energy and mental bandwidth…

  • This is the only diabetes conference primarily aimed at healthcare professionals that has a stream completely and utterly dedicated to ‘living with diabetes’ (LWD). This is, in equal measure, brilliant and problematic. It’s brilliant because it means that there is a real opportunity for people with diabetes to be on the speaker program, have their accommodation, travel and registration funded, and be part of the conversation at the actual meeting. But it can be problematic because it means that often, there are not all that many HCPs in attendance at the LWD sessions. I believe that one way to improve this situation is to include PWD in other sessions as well as have an exclusive stream. More on that another time, perhaps.

Click image to see tweet.

  • So with that in mind, if your HCP was at the Congress, I’d be asking them which LWD stream sessions they saw and have a stern talking to them if they reply with ‘not a one…’ Hopefully they will be more like UK Consultant Diabetologist, Reza Zaidi who not only attended a number of the LWD sessions, but also tweeted throughout them and asked questions.

(Click image to see tweet)

  • I patted a falcon (not a euphemism). There were falcons at the Congress. I am not sure why they were there. But obviously, I was terrified. I tried to overcome my fear of birds by being brave and patting one. I am still scared of birds.

  • There was a language session in the LWD stream (of course), but it was clear that a few of the exhibitors, presenters and those putting together posters for presentation could do with a refresher course on not using the word ‘compliant’. Call me, folks. I can help.
  • There was a fascinating discussion during the language session when it was explained by someone asking a question that the word for ‘diabetes’ in Japanese is literally translated as Sugar Urine Disease. And yes – you bet that adds to the stigma of diabetes…
  • And one final language point. There was a lot of talk about needing to ‘battle’, ‘fight’, ‘combat’ and ‘challenge’ diabetes as though this is a war. I’m not sure that this is a particularly useful way to think about it all.

Click image to see tweet.

  • Getting a break from the Congress proved almost impossible. So I was so grateful to the diaTribe Foundation for forcing us out of the conference centre and into an Art Gallery with one of their Art Walk series events. We got a guided tour of the brand new (as in, open for less than a month) Abu Dhabi Louvre. Stunning!

The amazing Abu Dhabi Louvre at sunset

  • For some reason, the IDF put me up in the middle of nowhere on a golf course. Perhaps they were hoping I would take walks. Or improve my swing. I did neither of these things.
  • I am more than used to getting asked about the ‘thing’ on my arm. My Dexcom sensor and transmitter are quite obvious and people are curious. I almost have come to expect it and I am happy to answer questions as long as they are asked respectfully. I don’t, however, expect this at at a diabetes conference. And yet, that happened over a dozen times. But possibly, the most surreal experience was stepping onto the Dexcom stand in the exhibition hall and having a few of the sales reps nearly tripping over themselves to ask what it was, how it worked, what it felt like and why it was on my arm. And then they wanted to see the iPhone and Apple Watch app and ask more questions, suggesting that Congress attendees visiting the stand ask questions of me and another person sporting one of their devices. Obviously, I should be on commission…
  • Diabetes conference exhibition halls can be confusing places. There are stands offering products that seem to be so far removed from diabetes that surely the exhibitors have accidentally turned up the wrong week for the wrong conference. I’m still confused by what the fluffy dolphin (pictured here with Annie, Georgie, Grumps and me) has to do with diabetes or what was happening on this stand.

Dolphins and diabetes… join the dots.

  • The Abu Dhabi National Exhibition Centre (ADNEC) might look like pretty much every other conference and exhibition centre I’ve ever been to (they all do), but jeez, it was certainly the largest I’ve ever been to. It was, in fact, quite cavernous and a lot of the time seemed quite empty, despite there being over 8,000 attendees. All that space, and still nowhere to get a decent coffee.
  • I chaired a really important session about diabetes complications. It was great to have an open, frank and honest discussion about living with complications and how they impact on the lives of people with diabetes. (Although, I could have done without the clip from Steel Magnolias to introduce the session on complications in pregnancy.)
  • Finally, it was so lovely to see the wonderful Wim Wienjen’s legacy on show during the hypoglycaemia talk. The book he authored alongside Daniela Rojas Jimenez is due for publication soon.

That’s it in dot points for today. I’ll be back soon writing more about the Congress. (I guess four thousand, three hundred and twenty-nine is a charm….)

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 by travel and accommodation costs and provided me with registration to attend the Congress. 

Advertisements

Last week, I received an email informing me that the weekly #OzDOC tweet chats would be coming to a close. Obviously, I thought of it as a sad announcement, but what a fantastic five years and five months of weekly conversations and support!

It takes a lot of dedication to run a diabetes support group, and the regular tweet chat format of #OzDOC meant that it was a once-a-week commitment, requiring a roster of interesting and engaging topics, and someone to direct the conversation and make sure that there was someone welcoming anyone who wanted to participate each and every week.

It takes work, time and effort, and, in most cases, support groups are run by volunteers who already have jobs and busy lives and families. The support group administration and activities are run in someone’s own time.

But despite what it takes – the planning, the commitment and the energy – there has been someone there since the beginning, taking responsibility to make sure that the #OzDOC tweet chat bus kept going. And that person is Kim Henshaw.

Kim talking #OzDOC at last year’s #MayoInOz meeting.

When the #OzDOC tweet chats started, there were three of us involved: Kim, Simon and me. We took it in turns each week to moderate the chat, come up with the questions and run ideas by each other. But circumstances change, and first I, then Simon needed to step back from being part of the moderating team.

Kim stayed on and has been the one responsible for herding the #OzDOC kittens and creating a safe, fun, supportive, reassuring online space for people in the Australian diabetes community to come together on Twitter each week. With a team of moderators, the chats continued.

Kim’s commitment to #OzDOC could never be questioned. In the very first tweet chat, back in July 2012, she was sent to Twitter jail for tweeting and retweeting too many times in the hour! She wanted to share as widely as she could, acknowledge as many comments from others as possible and encourage conversation at every turn. Until she was cut off from Twitter:

Oops…

Kim never wavered from her pledge to build and support the community. I shared the power of #OzDOC every chance I had – any time I was speaking about diabetes peer support, #OzDOC got a mention; I’ve written about it here over and over and over again. And I defended online channels and Twitter as a support platform, using #OzDOC as an example of just how a community could be developed.

But times change, and with Kim stepping aside and no one else available to take on the coordination of the group, next week will be the final time that the @OzDiabetesOC account is used for the #OzDOC hour of power.

I wanted to say a huge thank you to everyone who has been involved in the OzDOC tweet chats for the last (almost) five and a half years. I have met some incredible people through the chats, made some wonderful friends and learnt so, so much.

And mostly, I wanted to say thank you to Kim for delicately, dedicatedly and devotedly running the group. What a wonderful thing you created, Kim. Well done! Enjoy your quiet Tuesday nights – you deserve it!

Towards the end of last week, I got a little rant-y at all the ads from Australian-based and owned companies filling up my social feeds, and my inbox, inviting me to shop up big in the Black Friday sales.

My understanding of Black Friday sales is that they happen the day after Thanksgiving. We don’t have Thanksgiving in Australia. And therefore, we don’t have Black Friday. I actually had to do a bit or reading up to find out the history of the whole Black Friday sale thing, because I’ve always associated the term (as do many Aussies) with bushfires from back in 1939 – not a fire sale of bed linen or mascara.

After Friday was done, it wasn’t over! By Saturday, suddenly, Black Friday ads morphed into Cyber Monday ads. And details of more sales flooded every online channel. Cue more ranting from me (who probably should get a hobby and stop complaining about crap).

Today, with all the consumerism over, it appears that it’s time for another catchy day: Giving Tuesday. But this time, I’m all over it and happy to get involved and will be making a couple of donations to charities supporting people who are unable to access basic diabetes supplies.

Diabetes is just such an un-level playing field. Some of us are in Facebook groups trying to work out how to source equipment for our DIY APS builds, while for others, sourcing insulin is impossible.

This quote from former IDF President, Professor Jean Claude Mbanya provides some much needed perspective, reminding us just how different life with diabetes can be around the world.

If you can, please consider making a donation to a diabetes charity. You can choose to go local, and support a charity that provides services to you and people in your area. Or you can look to charities supporting people with diabetes in less well-resourced countries.

Maybe you could get together with some friends or family or work colleagues and donate to the Life for a Child 1,000 Donors Campaign. Already, 113 generous people have pledged to give $1 a day to help provide insulin to children in need.

Alternatively, you can always donate to the Spare a Rose, Save a Child campaign (also supporting Life for a Child) where just AUD$6 per month is all it takes to provide a child with insulin.

Insulin for Life saves perfectly good insulin from landfill and transports it to people in countries where insulin is difficult to access. Learn more about Insulin for Life by watching this short YouTube clip and then donate here.

Giving Tuesday, while really only a US thing, is something I am more than happy to embrace. As we throw ourselves headfirst into the silly season, I think it’s really important to remember those who can do with some help. And with Xmas spending about to hit frenzy levels, stopping and thinking about how you and your family and family can help those in need. (Read here for a slightly Grinch-esque idea, but one that I still stand by 100 per cent!)

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.)

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!

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. 

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!

 

Follow Diabetogenic on WordPress.com

Enter your email address to follow this blog and receive notifications of new posts by email.

Read about Renza

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information:
verify here.

Archives

Twitter

%d bloggers like this: