Diabetogenic

#SpareARose 2020 – the BIG reveal

March 5, 2020 in #SpareARose, Advocacy, Community, DOC, Engagement, Social media | 1 comment

Look what our community did! Here is the just released #SpareARose total for 2020. What a remarkable effort from a remarkable community!

The grand total of USD$73,748 will mean that, through Life for a Child, 1229 children with diabetes in under-resourced countries will have access to insulin for the next year. Amazing!

I guess there’s nothing more to say for this year, other than thank you, thank you, THANK YOU to all who contributed – whether that be through a donation or sharing the campaign.

Spare a Rose, Spare a Child will be back next year. Each year, we promise it will be bigger and better, and I’m sure that will be the case for 2021. Just watch us all go!

Advocacy through art

March 2, 2020 in Advocacy, Awareness, Community, Diabetes, Engagement, Real life | 2 comments

‘Art is not a mirror held up to society but a hammer with which to shape it’. (A quote usually attributed to German playwright and poet, Bertolt Brecht, but actually first said by Trotsky.)

Using different artforms as advocacy platforms is not new. In my time working in diabetes (18 years), I’ve been lucky to be involved in a number of different initiatives with foundations very much in creativity and the arts. Perhaps my previous life as a musician – and being married to one for over 21 years – means that artistic approaches are always on my mind when looking at how to tell the story of diabetes.

When planning for the IDF Congress last year, a gap came up in our session on advocacy and diabetes awareness initiatives. Our Living with Diabetes stream committee wanted to look outside the box and move away from traditional awareness campaigns. ‘How about we get Appleton in?’ And that’s how we had a street artist from New York appear on the program in Busan last year in a session with the same title as this blog post!

At that time, I’d not met Appleton in person before, but I had come face-to-face with his artwork. (He’s on Insta here.) There is something quite magical when wandering the streets of NY to look up and see a bottle of insulin stuck to the wall of an old building in SoHo, or in Chelsea. I’d snapped photos and shared them to Facebook, wanting to learn more about the artist: Who is he? What is his story? What is the response to his artwork? After meeting him in Busan, and then again at a mutual friend’s place for dinner in NY, Appleton hosted me and my family in his New York studio one rainy afternoon in January and I learnt a lot about his work.

Appleton on W 23rd street.

But even before meeting Appleton, I’d seen the power of how different artforms have the potential to talk diabetes in different ways.

Australian actor and playwright, Alan Hopgood’s play ‘A Pill, a Pump and a Needle’ from a few years ago, told the story of three women living with diabetes. Chatting after a chance encounter in a café over coffee and cake, this was a quintessential Melbourne story! But it was also a great way to start a conversation with those who were lucky enough to see the play. I sat in the audience a number of times, then took to the stage to be part of the panel discussion. Mine was one of the stories that had been brought to life on stage and it was incredible to hear the number of people who watched the play and said that they could see themselves in the women’s stories. ‘Their stories are my stories are their stories,’ I would think to myself.

One year, my team at Diabetes Vic held an art competition for World Diabetes Day, asking children living with diabetes to submit an artwork depicting diabetes. The only requirement for submission was that the artwork needed to somehow incorporate the Blue Circle. I remember the way these pictures offered a most meaningful and impactful representation of life with diabetes – in ways that we’d not seen before. I still have one of those artworks hanging in my office. Its 14-year-old artist managed to perfectly capture the pain of diabetes balanced perfectly with the hope she felt. I’ve been looking at it a lot in the last week, breathing in deeply and letting her feelings of hope wash over me.

A number of years ago, The Diabetes Hands Foundation asked for submissions for an anthology of poems by people with diabetes. Selected poems were compiled in the book ‘No-Sugar Added Poetry’ – a copy of which sits on my bookshelf and is frequently pulled down and perused. In her introduction, Lee Ann Thill says ‘From words, carefully chosen, purposely arranged, emerges a shared experience and mutual understanding’. In other words, peer support through poetry.

And while mentioning Lee Ann… Diabetes Art Day was created by this dynamic advocate and art therapist to encourage people affected by diabetes to use whichever artform they wanted to express diabetes. I remember sitting around the kitchen table with my family, trying to show how we feel about diabetes with coloured paper, glue sticks and rubber letter stamps and ink.

Illustrator, Janina over at Miss Diabetes is absolutely brilliant in her depictions of diabetes. And, of course, comics by Claire Murray are still my favourite diabetes superhero tales. And my friend Weronika at Blue Sugar Cube, creates stunning pieces – her Spare a Rose designs were so gorgeous.

Click to be taken to Weronika’s Insta page.

Australian advocate Jenna’s artwork is nothing short of stunning. I bought one of her beautiful images earlier this year and need to get it framed so I can stare at it endlessly when I should be writing!

Click to be taken to Jenna’s Insta page.

Melissa Lee has combined her beautiful voice, brilliant sense of humour and story-telling powers to sing diabetes in ways that get us thinking, smiling, laughing…and crying.

As for me? Well, I create through baking and have managed to create some pretty damn fun and delicious cookies to mark important days and initiatives in the diabetes calendar.

And of course, storytelling is an artform, and I know that for me personally, that is how I have connected and felt supported by people affected by diabetes from every corner of the globe. Words have a power that can convey the very helplessness, hurt, hope and heartbreak that is real in diabetes, and as I frequently say, the stories people tell have always helped me make sense of my own diabetes.

Art has the power to reach people in ways that other, more traditional methods don’t. Health campaigns are important, but sometimes they seem just one step removed from the reality of real life. Art has the power to bridge that step and bring people together, and provide a fundamental understanding of the story being told, and the people behind those stories.

So back to the quote that opened this post: art can – and does – shape how diabetes is seen within and outside our community; it can influence how people outside the diabetes community understand diabetes, and within the community, offer different ways to think of things. It can start conversations that encourage us to consider others’ ideas; it pushes boundaries and forces us outside our comfort zones; it gives voice to people in the community who don’t necessarily want to use words to express how they feel. Advocacy using art can also cut through the white noise of health campaigns – often they all look and sound so similar that they are easy to ignore. But for me, I think the most powerful thing they give is humanity and hope to a condition that is often so misunderstood.

Little pieces

February 27, 2020 in Diabetes, Guilt, Mental health, Real life, Wellbeing | 17 comments

Diabetes burnout is real, and it takes many different forms. In the past, I have been burnt out to the point of a complete inability to do any sort of diabetes task. Other times, I have just muddled along with low-level haziness and apathy with and at my diabetes. Sometime burnout has been caused by such a deep hatred of diabetes that the very idea of actually managing it is impossible. Focusing on diabetes after a miscarriage ridiculously felt like a betrayal to the baby I’d been unable to keep. My broken body had not been able to carry a baby, and there I was still tending to it – to the very part of it that I held responsible for the loss.

Today, I am burnt out but in ways that are different and if there was such a thing as a burnout spectrum, I wouldn’t think that I am at the really serious pointy end. I suspect part of that is that those diabetes tasks that once seemed impossible during periods of debilitating burnout are far fewer these days. Having to refill a cartridge and change a canula every three days, calibrate a CGM occasionally, and change a sensor even less occasionally is manageable for me even while I am feeling the way I am right now.

The bottom line is that at the moment, I don’t want to do diabetes and that is a big shift from where I have been since using Loop. It is also a big shift from where I usually am after attending a diabetes conferences and being surrounded by friends. This usually gives me a kick of motivation and focus, allowing me to put in a little more effort which generally yields pleasing results.

Instead, I am a mere 48 hours back from one of those occasions of peer support and I am staring at diabetes with that deep-seated hatred that feels unfamiliar these days. This has not sprung on me all of a sudden. It’s been brewing and fermenting over the last few months. It’s a combination of diabetes being diabetes and some advocacy burnout that has hurt me in ways I never imagined possible. I’ve not felt comfortable mentioning it because what the hell do I have to be burnt out from? My automated insulin delivery device that does most of the heavy lifting for me? The CGM on my arm that barely beeps at me? The support of friends and family? The ease of access to any sort of health professional I need? My diabetes isn’t first world diabetes, it’s first class diabetes so why would I possible be feeling crap about it all? (Oh good, let’s add some guilt to the way I’m feeling too then, shall we?)

And I’ve not felt comfortable mentioning it because, apparently, I am so self-confident and resilient that these things aren’t meant to happen to me. Or rather, that is the perception that a number of people have felt the need to share they have of me. (If anyone can locate that resilience, I’d really like some of it back. It is AWOL in the same way my beta cells are, and I am finding this all rather inconvenient.)

This brand of burnout has been joined by something new. I have had a couple of panic attacks over the last few weeks and the repercussion of those has been to suddenly feel very wary about my ability to make decisions about diabetes – my own and how I read things in the wider diabetes world. I am back to second guessing myself – a behaviour that I really had managed to positively change thanks to devices that I trust implicitly. As it turns out, those devices are smarter than me and as much as I was a maths whizz at school, I am no match for an algorithm that knows my diabetes better than I do.

But the bits I need to do? I’m misfiring left, right and centre.

I stared at a low glucose level on my Loop for two hours yesterday, unable to process exactly what I needed to do to deal with it. The low was entirely my fault. I’d forgotten to change the time on my pump when I arrived back into Melbourne because I was dealing with a more pressing matter – namely, staying out of quarantine. (Airport panic attack led to me trying to remember how to breathe properly rather than making that time zone change. I felt it better I focus my efforts on minimising the effects of said panic attack in an endeavour to keep away staff on heightened alert because of a global respiratory virus epidemic.)

I did a sensor change yesterday morning and it bled all over the place and felt terribly painful, and instead of just ripping it out and starting again, I wept – at the blood, the waste of a thrown-out sensor. And having read not long ago someone refer to CGMs as non-invasive.

So here I am. Burnt out, overwhelmed and feeling broken into little pieces. Oh, and terrified to write about it because I am finding corners of the world that I usually turn to when I am feeling like this not especially kind at the moment. (Unlike other times when my tribe has been amazing as I’ve navigated the tricky waters of the burnout continuum.) But I’m sharing anyway, because it’s what I do, and my mess is my mess and this blog is my blog and so somehow this feels the right place to dump the chaos and clutter I am trying to tidy up and make sense of.

Burnout is real. This feels hard and sad and more than a little scary. And it’s a reminder that no matter how well we think we are doing with diabetes – and no matter how we seem to be on top of things to others – there is always the chance that it overcomes us. That seems just so terribly, terribly unfair.

Running with ideas from the community

February 24, 2020 in Advocacy, Awareness, Conferences | 2 comments

When I first started working for a diabetes organisation, the first big project I oversaw was the development of a booklet providing information to young people living with type 1 diabetes. After approaching a few others out in the community working with and supporting this cohort, I was promptly reprimanded by one person who told me in no uncertain terms that I (and the organisation I was working for) should butt out, because this was not our space; it was this group’s area. I was somewhat astonished at the idea of ‘owning’ a segment of the diabetes community. How did that happen? Who decided that? I was a young person with type 1 diabetes at the time (obviously, this was years ago!), and I didn’t feel especially well-represented by any one group, and I certainly objected to the idea of someone deciding that their group spoke for me and my ilk.

The diabetes community is made up of many, many voices (some louder than others), and each person has different priorities for their own diabetes, and the broader issue of diabetes in general. We see that every day with different campaigns that are driven by people in the community. Some of the most visible are movements or campaigns that employ hashtags such as #Insulin4All, (although the insulin affordability discussion encompasses more than just this hashtag), #NothingAboutUsWithoutUs and #WeAreNotWaiting, and, as we are still in February, #SpareARose. (Not too late to donate, folks!)

Actually, #SpareARose is an excellent example of this. It may have been started by a few incredible advocates, but they never felt the need to identify themselves as the ones who led or created it. They encouraged anyone and everyone to be involved in any way they could – to donate, to share, to write about it, to make vlogs. It is owned by all and by no one at the same time!

At ATTD last week, Chris ‘The Grumpy Pumper’ Aldred and I took to the stage to do a presentation on #TalkAboutComplications, which incorporates the under-discussed issue of diabetes-related complications and its intersection with #LanguageMatters. Our talk was in a session that incorporated presentations focusing on peer support and diabetes online community and technology – all very much ‘user-led’ initiatives and movements.

These campaigns are not about everyone having the same idea and perspective. People approach different issues in different ways. One person’s peer support ideal is another person’s living nightmare! And #LanguageMatters remains a topic with myriad ideas and expectations for just how embedded it should be in the hearts and minds of our community and beyond.

But it is undeniable that no one really claims ownership of any of these movements. While Grumps may have tweeted that hashtag #TalkAboutComplications first, I know that he doesn’t feel that he ‘owns’ it, or discussions around it. Rather, he used it as a rallying cry to bring people together – to find a tribe, so to speak, and to connect people with diabetes searching for information and support about the realities of living with diabetes-related complications.

I (and a couple of others) have been accused of claiming ownership of #LanguageMatters because of our frequent posts, tweets and other commentary on the issue, but anyone who has aimed that accusation at me has either never heard me speak about the topic or read this blog. Whilst I may be extraordinarily proud that I work for the organisation that developed and launched the first position statement addressing this topic, and I have been invited to speak about our work a number of times, I very clearly point out the origin story of this movement, and that is very much a story from the diabetes community.

People with, or affected by, diabetes have been speaking about how words and language impact for a long time. Older online discussion boards frequently held debates about PWD/diabetic for as long as I have been diagnosed (and I’m sure, many years before that). Parents of kids with diabetes shared how they felt judged and shamed by the words used by HCPs when their kids A1Cs were out of range, feelings echoed by adults with diabetes.

I remember one of the first articles I read in Conquest magazine (Diabetes Australia’s magazine back when I was diagnosed) was by Gordon Bunyan who eloquently wrote about how words matter. Gordon has become a good mate, and over the years I’ve turned to him regularly to talk about this issue. And I remember hearing how teenagers at camps instigated change when it came to the language used when talking about glucose levels, moving from using good and bad, to the more factual high and low. That was back before I was working for the organisation involved in those camps.

Diabetes Australia, in developing that position statement, wasn’t sticking a flag in the issue, claiming ownership – and nor have any of the people involved in its development. It was a response to something that mattered to people living with diabetes – people who told us repeatedly that the words spoken to and about them, the attitudes that those words conveyed and the feelings they had when different words were used had the ability to empower or harm.

Having organisations build programs, activities, resources and services around what people affected by diabetes are talking about unites the community. It also demonstrates a willingness to listen and acknowledge the value of lived experience. That was the thinking behind the development of DIYAPS and low carb position statements. Acknowledging PWDs’ right to choice of treatment truly does put us in the centre of the discussion.

I should say that I am not undermining that leadership that organisations and individuals show when taking on these issues. It does take people to run with the ideas and turn them into something – whether that be a position or guidance statement, or different service or resource. I admit to occasionally feeling a level of frustration that legitimacy of some of these important-to-the community issues only comes when they have been made ‘official’ by an organisation, but I also know that all stakeholders involved is important; that together we are stronger!

Last week we saw on show discussions that have their foundations very much in the community. They may have moved into the realm of HCPs and researchers, and the conference stage. But it is well worth remembering where – and why – they originated.

DIYAPS – started in the community and now on the program at ATTD!

DISCLOSURES

I was an invited speaker at #ATTD2020, and my registration was covered by the conference organising committee. My airfare and part of my accommodation to attend ATTD was covered by Lilly Diabetes so that I could participate in the DOCLab advisory group meeting which took place on Friday, Saturday and Sunday. Other accommodation was covered by DedocLabs (I am an advisor for the #dedoc° voices program) and Novo Nordisk (I am a member of DEEP). I have not been asked to write or speak about any of the activities I attended, or anything I have seen at the conference.

Sparing roses

February 14, 2020 in #SpareARose, Advocacy | 1 comment

Nothing to see at diabetogenic today. All the action is over at the Spare A Rose donation page. Watch the diabetes community go, supporting this simple, yet important, campaign. For as little as AUD$7, you can provide a month of insulin to a child with diabetes in an under-resourced country. I challenge you to tell me of a better way to show your love.

Please do what you can – every single donation helps. Just click to donate and #SpareARose.

#DiabetesPsychologyMatters

February 12, 2020 in Awareness, Diabetes, Diagnosis, Healthcare team, Mental health, Real life, Wellbeing | 5 comments

What would you change about your diabetes diagnosis?

Mine was almost 22 years ago, but much is still fresh in my mind. While there is a lot I am eternally grateful for, such as the speed and accuracy of diagnosis, and the way I was easily able to access specialist care, there are things that I wish were different.

One of those things is the line-up of HCPs that was offered to me. Making sure I knew the basics of daily diabetes management, the importance of knowing how many carbs I was eating, and the impact of activity, were, of course, critically important to learn before I was sent on my way. But diabetes was presented to me with this very one-dimensional approach. It was all about the magic carb/insulin/activity equation. Get that right and all would be relatively simple.

I had the relevant HCPs that could help me get that equation right – the endocrinologist, the diabetes educator and the dietitian. This was the holy trinity of diabetes care, I was told. This was the team that had diabetes knowledge to share.

And perhaps, if I’d been able to keep diabetes all about numbers, that trio would have been enough. Alas, it didn’t take long for this new-to-me medical condition to move to my head. No one mentioned the anxiety and fear that started to accompany the distress that was due to not being able to meet any of the targets I’d been set, and feeling overwhelmed by just how much diabetes there was to do. Or the disordered eating that may creep into my thinking because of this sudden focus on food in a different way. Or the crippling fear of complications that was keeping me awake at night.

I wish a version of these words had been said to me: ‘Diabetes is not easy. You can do this, but it is not easy. But we are here to help you. And endocrinologist and educator can help you with the practical side of diabetes. Food questions can go through your dietitian. We have an arsenal of allied health professionals to think about when it comes to doing all we can to reduce the risk of diabetes-related complications. And if you ever feel that you are becoming overwhelmed or anxious or distressed, if you ever want someone to talk with someone about how you are feeling to work through what’s going on outside the clinical aspects of diabetes, we have someone here for that too. It is perfectly, perfectly normal for you to feel all of those things. It is also perfectly normal for you to not feel them! We can help with whatever you need.’

Planting that seed would have made those first few years – those years before I found an endocrinologist who did say those words to me – so very, very different. I may not have understood why I might need, or rather want, to see a psychologist straight away – I didn’t understand what diabetes was, let alone how it was going to impact on my emotional wellbeing – but I wish that I had known from the very beginning that I had easy access to a one if and when I needed it. And that it was perfectly understandable if I did.

While I believe that GPs, endocrinologists and educators all have a role to play in talking about emotional wellbeing, they are not experts in this area. Having our diabetes HCPs acknowledge the high mental burden diabetes places on us is reassuring, but they may not be equipped with the strategies to help us lighten that load. But a psychologist can – especially one that works with people living with diabetes or other chronic health conditions. Plus, I repeatedly see HCPs say that they don’t have time as it is to ask about mental wellbeing, because there is already so much to do in the allotted appointment time.

Here’s the thing: so, so many people with diabetes are not reaching targets. Now, while I don’t agree with measuring diabetes success on numbers, that is still the way that it is done in many settings. And with that in mind, so many of us are above recommended glucose levels and our A1cs don’t even closely resemble what guidelines tell us to aim for. Clearly what we are doing now isn’t working, in fact, I’ll be so bold as to suggest that the current standard HCP line up is not necessarily best for PWD. Would adding a psychologist to the mix help? Would the expertise a psychologist can offer to help us learn how to address behaviour change, distress, anxiety result in not only feeling better about diabetes overall, but also improve those other measures?

I am not for a second suggesting that everyone with diabetes should have to see a psychologist. I don’t think that PWD should have to see any HCP they don’t believe is helping. But I do believe that we should be able to access a psychologist as easily and readily as we can any other diabetes HCP. Psychologists should be integral in multidisciplinary teams in diabetes clinics in the same way that educators, dietitians and endocrinologists are.

In my experience, it wasn’t until I started working with a psychologist that I got any benefit from seeing the rest of the diabetes team. Go check out the hashtag #DiabetesPsychologyMatters for some more commentary on this from PWD, psychologists and clinicians. It’s already gaining momentum, but I think it’s time that it really took off…

Tone down!

February 10, 2020 in Advocacy, Awareness, Communication, Diabetes, Healthcare team, Peer support, Real life, Social media | 6 comments

Tuesday last week, I woke up to find this message in my Twitter DMs. I read it and read it again. It accompanied a tweet or two to me about my blog post from the previous day.

I debated about whether or not I should share this publicly. I wrote some words, walked away, came back to them, walked away, asked a few friends their thoughts, walked away, wrote a bit more and walked away again. I posted it to my closed Facebook page to get some feedback from others and wondered if that was enough.

But then remembered this blog post. #StandUP.

So, here I am, standing up. Because I am upset and angry.

I am not upset and angry that someone didn’t like or disagreed with what I wrote. It would be frightfully boring if we always all agreed with each other and loved the same things.

I am not upset and angry that this message was unsolicited. I believe that people don’t need an invitation to comment when I write and publish things on a public forum. I invite all feedback – good and not so good.

I’m not even upset or angry that I don’t understand what was being referred to in the message. I re-read and re-read and re-read my post, and I can’t see where I ever, ever said that people with diabetes shouldn’t self-manage, or know what meds they’re taking or what their glucose readings are. I couldn’t find it in there. But, people interpret things differently and perhaps my writing wasn’t as clear to them as I thought it was.

I’m not here today to defend the content in that blog post, because that’s not what this is about.

I am upset and angry that I was being told to ‘be mindful of what and how I verbalise’. This is called tone policing. It is telling me that I should moderate the way that I talk and think about my own diabetes. This was an opinion piece. My opinion. People don’t need to agree with it – and they can tell me they don’t. But telling me to moderate the way that I communicate is a very different thing.

I will forever call out and stand up to anyone who tells me, or others with diabetes, to restrain our feelings or opinions, and that is why I am writing this post. Because more than anything, I believe that we have a right to express how we feel about diabetes, in the way we want to, especially when we are sharing our own opinions or experiences. When we are told to be mindful of what and how we are writing/speaking it is a step on the way to censoring and silencing us. We already do that enough.

Often, in clinical settings, we moderate the way we speak. We might minimise how tough things are, or don’t speak out about the way we are treated or the judgement we face. When we are told that we’re not doing enough and are failing, we look down, afraid to stand up for ourselves.

And so, we created spaces where we could be free to share and rant and cry in a way that gave us some comfort. We turned to others who are likely to have had similar – if not identical – experiences. We share our opinions, some of them unpopular, thought-provoking and challenging of the status quo because we feel we have the liberty to do just that.

We have had to be quiet for too long. But that should never be the case in our own space.

The diabetes online community is that space. Twitter, when we use our #xxDOC (or #DSMA) hashtags is that space. Other online and offline support opportunities and groups we have created is that space.

And this blog (and others written by PWD) is that space.

So, back to the message I received last week. I did ask for clarification, and for examples of where I’d used capital letters or words that could be considered harmful, but I didn’t get a response.

Just this message:

No answers, just a threat to mute me. To silence my voice. Sure, it is only being silenced on this one person’s twitter stream, but that was the response to me refusing to be ‘compliant’ and agree with a healthcare professional’s demands that I tone down the way I write about my own opinion. I had not been aggressive, abusive or rude. I had just shared my own opinion and thoughts in my own voice. In my own space.

The story behind my time in range

February 7, 2020 in Devices, Diabetes, DIYAPS, Family, Real life, technology, Travel | 3 comments

These days, I usually don’t show my glucose data online. When I first started Looping (about two and a half years ago), I regularly posted the flat CGM lines that amazed and surprised me. I also shared the not-flat lines that showed how hard my Loop app was working as temp basal rates changed almost every five minutes. The technology worked hard so I didn’t need to, and the results were astonishing to me. I shared them with disbelief. (And gratitude.)

I stopped doing that for a number of reasons. It did get boring, and I definitely recognise my privilege when I say that. I also acknowledge my privilege at being able to access the devices required for the technology to work. And there was the consideration that sharing these sorts of stats and data online inevitably lead to comparisons and competition. That was never my intention, but I certainly didn’t want to add to someone having a crappy diabetes day while I blabbed about how easy my day had been.

But today, I’m sharing this:

This was my previous 30-day time in range data from the Dexcom Clarity app on the day I arrived back home in Australia after returning from New York. (My range is set to 3.9mmol/l – 8.1mmol/l.) I’m not sharing it to show off or to boast. I don’t want congratulations or high fives. In fact, if anyone was to see this and pat me on the back, I would respond with the words: ‘I had very little do with it’.

I can’t really take credit for these numbers and would feel a fraud if anyone thought I worked hard to make this happen. Using an automated insulin delivery system full time means that I do so much less diabetes than ever before while yielding time-in-range data that I could once only dream of.

I want to share it, not to focus on the numbers (because it’s NEVER about the numbers!), but to explain what happens when diabetes tools get better and better, and what that means in reality to me.

Those thirty days included the following: End of year break up parties for work and other projects (four of those); ‘We-must-catch-up-before-the-end-of-the-year’ drinks with friends (dozens of those!); actual Xmas family celebrations (three of those over a day and a half– and I’m from an Italian family, so just think of the quantities of food consumed there). Oh, and then there were the three weeks away in NY with my family. Our holiday consisted of long-haul flights from Australia, frightful jet lag (there and back), a lot of food and drink indulgences, out-of-whack schedules, late nights, gallons of coffee, no routine, and more doughnuts than I should admit to consuming.

Add to that some diabetes bloopers of epic proportion that had the potential to completely and utterly railroad any best laid plans: insulin going bad, blocked infusion sets, sensors not lasting the distance, a Dex transmitter disaster.

And yet, despite all of that, my diabetes remained firmly in the background, chugging away, bothering me very little, with the end result being time in range of over eighty per cent.

This graph is only part of the story of why I so appreciate the technology that allowed me to have a carefree and relaxed month. Diabetes intruded so little into our holiday. I bolused from my iPhone or Apple watch, so diabetes devices were rarely even seen. Alarms were few and far between and easily silenced. I was rugged up in the NY cold, so no one even commented on the Dex on my upper arm. The few times I went low, a slug of juice or a few fruit pastilles were all it took, rather than needing to sit out for minutes or hours. Diabetes didn’t make me feel tired or overwhelmed, and my family didn’t need to adapt and adjust to accommodate it.

That time-in-range graph may be the physical evidence that can point to just how my diabetes behaved, but there is a lot more to it, namely, the lack of diabetes I needed to do!

As I spoke about this with Aaron, he reminded me of my well-worn comments about not waiting around for a diabetes cure. ‘You’ve always said that although you would love a cure, it’s the idea that diabetes is easier to manage that excites you. Ten years ago, when you spoke about what that looked like, you used to talk about diabetes intruding less and being less of a burden to your day. That is what you have now. And it is incredible.’

NEW! #dedoc° voices

February 5, 2020 in Advocacy, Awareness, Community, Conferences, DOC, Peer support, Social media, technology, Travel | 1 comment

In a couple of weeks, the diabetes conference juggernaut will descend on Madrid for ATTD.

This one is all about new treatments and technologies in the world of diabetes and, in its thirteenth year, looks to once again be a busy and enlightening meeting.

There is so much on the program that focuses on user-led technologies and initiatives. I think it’s fair to say that PWD have long recognised that technology in diabetes is more than just the devices we wear on our bodies. We have long used technology for support and to connect to others who help us manage the day-to-day life of diabetes, and to learn and share. DIYAPS may be about the systems, but grasping the role of online platforms and support is essential in understanding the #WeAreNotWaiting movement as a whole.

It’s great that a number of PWD already know that they will be part of ATTD this year, attending satellite events run by different device and drug companies. Some are on the program and some will be there through other opportunities and work.

The more the merrier, I say! Different voices with different experiences sharing and learning is always a great thing. And having the opportunity to meet people in real life after only seeing them online adds another dimension to our peer support networks.

For European diabetes friends yet to secure a place at ATTD, there is another possible avenue in, but you need to be quick. Launching at ATTD is the new #dedoc° voices program. Although #dedoc°has its foundations in Germany it is truly an international community, involving people from all over the world. #docday° events (always a highlight at these conferences) involve diabetes advocates from across Europe and the US, and even the odd Australian, too. It’s great to see this new initiative is helping more advocates get a seat at the diabetes conference table as active participants.

APPLY NOW

If you want to be considered for the #dedoc° voices program, you need apply, which is super simple – just go here, where you will find out all about the program and how to throw your name in the ring! Applications close on Friday, so chop chop!

Successful applicants will have their travel and accommodation costs reimbursed, and will receive full registration to the conference.

Good luck. And hope you see you there.

Disclosure

I am an advisor to the #dedoc° voices program. I do not receive any payment for this role.

I am an invited speaker at ATTD 2020. Lilly Diabetes is covering my travel and part of my accommodation so I can participate in the DOCLab advisory group meeting held during ATTD.

The open window

February 4, 2020 in Diabetes, Real life | 4 comments

A very smart friend I met through Twitter, and has become a treasured IRL friend, says that when publicly telling our diabetes stories we may have opened a window into our lives, but that doesn’t mean we need to open a door. We get to choose how we protect ourselves and who we let in.

I choose to leave the window open and have come to learn over the years that as more and more people walk by, more people see what is going on inside. I know I can shut the window and draw the blinds any time I choose, and I did that for a short time at the end of last year. But mostly it is very, very wide open.

But having an open window to glance into doesn’t give anyone the right to yell that they don’t like what you see through the window, especially if I don’t ask. And certainly make sure that you have a good look and understand what you are seeing before you start to tell me that I am wrong about my decorating choices.

My window is on one side of the street. You can cross the road to avoid looking in. Or you can walk by, but not stop for a chat.

I choose what it looks like inside my window. I choose where the furniture goes, how it looks and feels. I live in it the way that works for me. I’m not a professional window dresser or decorator, just someone who knows what looks and feels good to me. I have never given decorating advice because I am not a professional decorator. Just a person living in this room that can be seen through that open window.

This blog is my open window. I welcome anyone who wants to peek inside. No one has to be here, but they’re welcome if they want to be. Some people might have a quick look and decide that it is all a little too frivolous or boring. They may think the things I get worked up about are a waste of time and that there are far better things to spend energy on. They may think it’s all naval grazing. They may think there are far too many pink stripes. That’s okay. It probably is a bit of each of those things, but it works for me. I sometimes write my thoughts on things in the broader diabetes world – and that may not be your take. That’s okay, too. We don’t need to agree on everything. I’m here, narrating my diabetes and how that intersects with the rest of my life, the world around me, the people I love.

Sometimes, I do that with great vulnerability. I share stories that are painfully personal and sometimes very raw. I try to infuse humour in there because sometimes, living with diabetes hurts so, so much that I need to break that up with something amusing.

I write about those sensitive topics, as well as more general day-to-day subjects, and that is not a decision I make lightly. I do it for selfish reasons – I hope that by telling my story I might just find someone who has a similar experience who can share their wisdom with, and help, me. Another reason is that I don’t want anyone to feel the loneliness and isolation I have felt at times. Diabetes can be lonely. Diabetes on top of other really tough things, such as infertility and pregnancy loss, parenting, mental illness, distress, diabetes-related complications can feel isolating.

If you don’t like what you see in here, that’s perfectly okay. If I have said something factually incorrect, I would really like to know about it so I can correct it. You can tell me about typos (I know there are many) and eventually, I may get around to fixing them. If I have upset you, I would love to understand why and welcome that discussion if you’re comfortable doing that. You can leave a comment – anonymously if you would like – sharing your thoughts.

But don’t ever tell me that I need to change what you read here because you don’t like what you see. Don’t tell me that I need to moderate what I say, or the tone in which I choose to say it. I have chosen to open the window into my diabetes life. But I have not ever chosen to be told how to live that life.