Diabetogenic

‘Do you have diabetes too?’

March 3, 2022 in Diabetes, Peer support | 6 comments

There are days that my job is just THE best and yesterday was one of them. And the novelty cheque I was handed wasn’t even the best of it. I met with an incredible bloke who had undertaken two years of fundraising, summitting mountains and running marathons. He met with me to handover his donation to Diabetes Australia.

His astonishing efforts had all been for his nine-year old daughter who has been living with type 1 diabetes for the last four years. This darling girl got a day off school so she could be part of the cheque handover. She jumped around excitedly with lots to say about school, diabetes and being nine – an absolute gem, all bundled up in a tutu with sequins.

And then she noticed the sensor on my arm. She froze and her eyes grew wide. ‘Do you have diabetes too?’ she almost whispered at me. When I said yes, her excitement went from level 11 to level one hundred million! ‘I HAVE ONE OF THOSE ON MY STOMACH!’ she yelled and lifted her top so she could show me.

I complimented her on the patch around her sensor and then we spoke about which patches we think look best around our Dexcoms. We both agreed that pink is the best. Obviously.

She told me that she learnt how to do her own injections when she went a diabetes camp a couple of years ago and how she even does her own sensor changes now too.

We shared what we love and don’t love about diabetes (jellybeans featured strongly on her ‘love’ list) and talked about how great it is when you get to know other people with diabetes. She told me about her friend with diabetes at school. I told her about my neighbour with diabetes and all my diabetes mates.

When we were saying goodbye, I told her that if she wants to chat again, she should ask her mum or dad to reach out so we can organise a time for a Zoom call, and we could all catch up. Because sometimes, all you need is someone else with diabetes to chat to, and, as it turns out, an almost 40-year age difference isn’t a barrier to feeling that unique connection to someone else with diabetes and understanding the endless and colossal value of peer support.

#SpareARose for Ukraine

March 1, 2022 in #SpareARose, Advocacy, Awareness, Community, Diabetes, DOC, Social media | 2 comments

Usually, as February comes to a close, there is a flurry of excitement in the diabetes online community as the final tally for the annual #SpareARose campaign is announced.

This year is different. With war breaking out in Ukraine, it didn’t make sense to end the campaign at the exact moment that many in the diabetes community were wondering how to help our brothers and sisters affected by the war.

And so, after a frantic 24 hours of emails, text messages, phone calls and people doing things, #SpareARose for Ukraine was launched.

It’s live. Right now. And you can be part of it.

The colours may have changed a little, but the campaign remains that same: a donation – not matter how big or small – will help people with diabetes living in challenging situations. All funds are donated directly to Insulin for Life, a charity that has years of experience working providing insulin and diabetes supplies to under-resourced countries and responding to emergencies. This is an emergency.

Insulin for Life will be earmarking funds donated in March for their efforts supporting people with diabetes affected by the war in Ukraine. They are part of an international consortium, with partners in Ukraine, and they have supplies ready to go if, when and where they are needed.

You can help by sharing details of how to donate to #SpareARose for Ukraine with your networks. Speak with your workplace to see if they will support the campaign by matching employee donations. You can connect with the campaign online (Twitter, Facebook, Instagram) and share what we’re posting. Remember to share outside as well as within the DOC to reach as big an audience as possible.

And, of you can, you can donate.

#SpareARose for Ukraine builds on what has always been a community campaign. It was started by diabetes advocates, it continues to be coordinated by diabetes advocates, all on a volunteer basis. It is underpinned by the philosophy ‘BY the community, FOR the community’. Please support any way you can.

Interweb Jumble #39

February 25, 2022 in #SpareARose, Awareness, Communication, Community, Diabetes, DOC, Hypo, Interweb Jumble, Language, Peer support, Real life, Research, Social media, Stigma | 1 comment

Gosh, it’s been a hot minute since I last did one of these. The whole point of Interweb Jumble posts on Diabetogenic is to highlight anything that has caught my interest in the online diabetes world, write about initiatives I’ve been involved in, and, most importantly, to elevate the great work being done by others living with diabetes. Building folks up and promoting their amazing efforts has been at the heart of what I do, so I’m always happy to share what others are doing.

Grab a coffee, tea or shandy, (Don’t. Don’t grab a shandy), and read on.

Diabetes Chat

YES!! There is a new place to congregate online, in a different format, and with this one, you get to hear people’s voices. (Sorry to everyone who had to endure my 7am Aussie accent last Tuesday!). This is a new initiative that’s been set up by three DOC folks – Tom from the UK, and Chris and Sarah from the US, utilising a new feature on Twitter called Spaces. It’s a terrific way to host an online peer meeting, creating yet another time and place that is BY people with diabetes, FOR people with diabetes. There is a weekly guest who gets put through their paces with terrific questions from the hosts and those listening in, and an open mic chat time as well.

It’s super impressive to see people from all over the globe participating. It reminds me a little of the DSMA tweetchats which are very welcoming and open to all, regardless of where you live around the world.

Search #DiabetesChat on Twitter for more.

dStigmatize

The team at diaTribe has once again tapped into one of the important issues, and much spoken about topics in the diabetes community and developed a terrific new website addressing diabetes stigma. It’s called dStigmatize and you can find it here.

I’m delighted to see Diabetes Australia’s work on stigma and language highlighted so prominently on the site (disclosure: I work at Diabetes Australia and have been involved in this work), including the videos from last year’s Australian National Diabetes Week campaign, which have been viewed hundreds of thousands of times.

Seasons of…diagnosis

New research out of Finland asked if more people were diagnosed with type 1 diabetes during colder months. You can read the paper here.

And a discussion on Twitter about it here.

HypoRESOLVE podcast

The HypoRESOLVE comms team created a new podcast to showcase the incredible work of this researchers involved in the project, with a strong emphasis on how people with diabetes are involved in the project. I was delighted to host this podcast and speak with some truly remarkable clinicians and researchers as well as other people with diabetes who are on the projects Patient Advisory Committee. (Disclosure – I am on the HypoRESOLVE PAC. PAC members are now paid an honorarium for our time working on this project, however we were not at the time of recording or working on this podcast.)

Here is the most recent episode (on Spotify).

Better engagement with PWD = better services

Great paper from a team out of the UK looking at how connecting with the lived experience expertise of people with diabetes, health professionals and diabetes health services can improve service delivery.

One of the co-authors is one of the GBdoc OG, Laura (@Ninjabetic1 on Twitter), and it’s great to see her name back in the diabetes world, contributing to this important discussion.

And the DDA podcast…

The Danish Diabetes Academy developed a podcast out of their Winter School that featured Postdocs who had participated in the academy speaking with others in the diabetes world to discuss who academic researchers work to ensure their research reaches and benefits those they are researching. I was so honoured to be invited to be interviewed for their first episode and answered questions about how communication is important when engaging people with diabetes to be part of the research process. You can listen here.

Language Matters for Portuguese speaking friends with diabetes!

The latest in the Diabetes #LanguageMatters stable is this document out of Brazil. Always terrific to see more and more statements coming out, highlighting the importance of language and communication in diabetes.

Thinking of starting on an insulin pump?

If so, the awesome Grainne at Blood Sugar Trampoline has you covered with this post. It is truly one of the most measured pieces I’ve read about things to consider if you are on the path to starting an insulin pump. The gushiness and superlatives that many of us resort to when banging on about how much we love our pumps are replaced with sensible, and practical advice and suggestions. If this is where you’re thinking of taking your diabetes management, Grainne’s piece is a must read.

Who doesn’t want to come to ATTD!?

#dedoc° voices is back and heading to ATTD in April this year, and applications are still open if you would like to be considered as part of the program. Successful applicants will be granted access to the entire ATTD program, giving them an opportunity to share what they see and learn with their networks. Make your submission count – this is a competitive process and success is more likely for those who take the time to provide details of how they will be involved in the program. Details here.

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

World Health Organisation

In March, the World Health Organisation, through the Global Diabetes Compact, is hosting a two-day focus group for people with lived experience of diabetes. If you’re interested in getting involved, there is an expression of interest process you can complete here.

Also from WHO is this survey which is asking people with diabetes how to improve messaging and communication. You only have until 28 Feb, so get onto it now! (Disclosure: I was a volunteer consultant in the development of this survey)

Massive kudos to the Global Diabetes Compact team who are doing an absolutely stellar job engaging with the community. Always so terrific to see!

A diabetes sea shanty…

You’re welcome.

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A post shared by Type Won Diabetes (@typewondiabetes)

(Follow @TypeWonDiabetes on Instagram here.)

People with diabetes and their involvement in research

An end of year delight was this article that I co-authored making it to publication. The article is about how to better involve people with health conditions in research (which really seems to be something I’ve been very focussed on recently!).

Spare a Rose – last push

February still has a last few days which means that Spare a Rose isn’t over yet. You can still donate and contribute to this year’s total and support people with diabetes in under-resourced countries through the Insulin for Life program.

A heaviness

February 16, 2022 in #SpareARose, Advocacy, Awareness, Community | 10 comments

I was interviewed for an article last year and loved the copy they came up with, but it was the heading that got me. ‘Living a Life of Advocacy’ it screamed at me bold text, perfectly popping out from the hot pink background of the photo they’d selected to accompany the article.

The photo is from a while ago now. It was 2013, and I was on a stage in Paris where I’d been invited to give a keynote at Doctors 2.0 – a digital health conference that brought together people using, developing and constantly thinking about digital health solutions. I look at that photo and love the action shot of me mid-sentence, one hand holding a microphone, the other waving, because of course.

But I also know that at the time I was about 10 weeks pregnant and behind the confidence I projected on that stage, I was terrified and anxious. It was a terrifying time as I balanced wanting to be the best advocate I could while also wanting to bunker down back home, wrap myself in cotton wool and do nothing but protect the baby I was growing.

As I spoke about how digital solutions bring together a diabetes community from across the globe, I didn’t know that a mere four weeks later, while in New York, I would miscarry my much-wanted baby. I didn’t know that I was about to face the most challenging and emotionally traumatic period of my life. I didn’t know that, because all I thought about in that moment as I was on that stage with the hot pink background, was how important being there was – people with diabetes on stages as equals with health professionals, disrupters and industry. It was big!

Living a life of advocacy. All while almost being afraid to breathe because I was worried that every jolt, every movement, and the active way I present was endangering the baby. No one else would have known that was going on. There was one person, and one person only, at the conference who knew I was pregnant, and she was sitting next to me on that stage. I figured that I needed a friend with me if something went wrong. No one else was knew, and no one – no one – knew how afraid I was.

In a recent podcast interview, I was asked where this advocacy drive came from. Without missing a beat, I answered that it was in my bones. Because it is. My mum, the trade unionist, had me at protests while I was still in a pram. I went to university to study music, but it makes perfect sense to me and those who know me that I’ve wound up doing what I do, being who I am, advocating my way through my days. In my bones.

But that doesn’t make it easy. It doesn’t stop the burnout from it, or from feeling overwhelmed. And when it’s diabetes that is the focus of those advocacy efforts, while at the same time, I spend so much time focusing on living with diabetes, there’s a weight that seems compounded. It is heavy.

Last year, almost 12 months ago to the day, someone decided to email me about Spare a Rose, reaching out through my blog and, with nothing better to do, thought they should let me know that no one cares about the campaign, and that I should understand what people think about me (which wasn’t much, apparently). It was shitty, it was unnecessary. It was unnerving. After the third or fourth one of those emails, I decided to share one on Twitter. I had no idea who it had come from, but I figured that whoever it was would see my tweets and understand just how upsetting it all was.

It did the trick because it was the last time I heard from my anonymous critic. At least, for the 2021 campaign.

Alas, a week into February 2022, old mate was back, this time with a comment on my blog post about Spare a Rose. I’m guessing it’s old mate – I could be wrong, because who knows when people won’t put their names to things, but the sentiment was the same. It has the same hits as last year. It’s cruel and unnecessary and, once again, has completely rattled me.

It confuses me beyond belief that of all the advocacy issues I’m involved in, it’s the one that literally is saving the lives of other people with diabetes that was the reason someone thought they would take the time to message me. I mean, I get my fair share of criticisms about language, and other topics that are not everyone’s cup of tea. But surely if there is one thing we can all agree on, it’s that a campaign that is saving the lives of people with diabetes in under-resourced countries is not controversial.

Surely.

It all feels so, so heavy.

I know I’m not alone. I know it is a side effect of advocacy. I look to advocates in the diabetes world and I am in awe of what they do.

I am in awe of people advocating to healthcare professionals to be more mindful and thoughtful of the way they interact with people with diabetes.

I am in awe of people who work in industry, invading that space, gaining employment and while they are there, building a career that is forged in advocating to create devices, and device adjacent materials to make diabetes better, easier – and those devices more relevant.

I am in awe of people advocating about the injustices of insulin pricing and access, because they want to change the paradigm that means that some people simply cannot access the very drug they need to stay alive.

I am in awe of people who advocate quietly for years, and make big change by doing small things, over and over and over again.

I am in awe of advocates who have not waited, and instead, built solutions to make their lives easier and less burdensome and then – once they had worked it all out – made it free and available to anyone else who wants to benefit, and then remain there to support them.

I am in awe of creative people who use art, poetry, drama, comedy, music, as advocacy tools to show people how diabetes impacts everyday life and to change how the world sees those of us living lives of diabetes.

I am in awe of the work all these advocates do, and I wonder if they’re also feeling that physical weight that comes from their advocacy.

Do they feel that pressure coming from all different directions, weighing them down from above while also feeling as though it is crushing them from the sides? Do they feel overwhelmed?

I do. And it really, really is heavy.

Enough with ableist food rules

February 9, 2022 in Uncategorized | 1 comment

I wrote a post many years ago taking the piss out of wanky ‘My day on a plate’ articles, or, as I renamed them, ‘My lie on a plate’. If you’ve ever read one of these (in Melbourne it’s a regular article in the magazine that comes with a Sunday paper) you’ll find some ‘influencer’ or celebrity who swears all they consume is hot water and lemon, steamed line-caught salmon, and organic kale and quinoa.

This is, obviously, the extreme of the ‘look how virtuous my eating is’ spectrum. Because that is what eating is all about, right? – virtue and honour and showing just how ‘good’ we are because we are all about fresh, healthy, green, CLEAN. (For the record, all food is clean. Unless it’s been dropped on the floor, and I’m not here to judge anyone’s commitment to the five second rule.)

I know I’m guilty of it too. I frequently share online the details of the food I’m making, planning to make later today, thinking of making in the future, eating, planning to eat later today, thinking of eating at some point. And that shared food is, inevitably, on the healthier side. Or the homemade side. Or the this-plates-up-beautifully side. I make hyper-lapse videos of the baking I do each week and share with friends and family and while it’s a little fun, there is a tiny part of me that knows how performative it all is. ‘Look at me in my kitchen whipping up some delectable goodie that is going to make its way into my kid’s lunchbox this week, because I’m not the sort of mother who would EVER deign to chuck in a fun size Milky Way!’

Really, I want to tell myself to fuck off sometimes! (And on the occasions my kid does get a Milky Way in her lunchbox she couldn’t be happier.)

As someone who does indeed love food, loves to cook and loves to share (online and IRL) my creations, I understand the allure of getting excited at asparagus season and only buying and cooking it at that time of year. But expecting everyone else to do that and judging those who don’t is pretty crappy. I know I’ve been guilty of it – if not explicitly, at least implicitly.

I’ve heard myself talk about how easy, quick and cheap it is to throw together soup, and how there is no need to do a fast-food run, because why would you need to when tossing together some onion, garlic, veggies out of the fridge, a couple of chicken legs and some small pasta (obviously in a Le Creuset pot because of course I am also wanky when it comes to cookware) and then sprinkling parsley on top and serving up with some crusty bread?

Man, there are a lot of assumptions there (even if we take out the need for heavy French cast-iron cookware). There is the assumption of people having those things in the house, and the know-how of just how to throw it all together. There’s an assumption that people want to make soup. There’s an assumption that people want to eat it.

It doesn’t sit right – and is also all shades of hypocritical of me to be this way – when you think about how very vocal I’ve been rallying against sectors of the community who like to badger people with diabetes about not eating carbs (or whatever other militant food rules they have), and criticise people who choose to eat in different ways.

It is all very well to tell people to eat fresh, grow your own where possible, shop at farmers’ markets, eat only what is in season, consider food miles, shop local, buy good quality and make everything from scratch. And then to demand that if people absolutely must venture into a supermarket, the rule is they must only be allowed to show on the perimeter – where the fresh foods live, while also banging on about how processed foods, ready-made meals, pre chopped fruit and vegetables, frozen and tinned foods are inferior and if you are truly treating your body like a temple, you wouldn’t go near it.

I’m tired just typing that. And it’s so freaking ableist, privileged and full of presumptions to consider that this is the only way to think about food.

There is nothing wrong with buying prepared food – whether it’s prepared food for babies, kids, or grownups. Prepared meals are just as valid an option as meals made from scratch. Prepared cakes work just as well for a celebration as one that has been baked in your oven. Packet cakes and biscuits are a shortcut that make things easier. Some people may prefer the taste of pre-prepared foods, which is as good a reason as any for deciding what and how to eat.

There is nothing wrong with purchasing pre-chopped fruit or vegetables. They are still fruit and vegetables, and a fabulous alterative for people who are in a hurry, really don’t enjoy chopping up foods, or find it difficult to wield a knife. Or for people who just grab a bag because that’s what they want to do!

There is nothing wrong with using frozen or canned vegetables rather than fresh. They are convenient, more readily available in rural and remote areas, often more affordable, super easy to whip up, and full of nutrients. Sure, it looks gorgeous on an Instagram feed to show freshly picked tomatoes from the plant growing in your front garden, and then offer a step-by-step photo guide of how you turned it into organic-vine-grown-homemade-truss-tomato soup, but some Campbell’s tomato soup also works! And, hey, it was good enough for Andy Warhol…

For the record, it’s not just social media over-sharers who need to be reminded to check our privilege. Often, dietary advice from health professionals and health organisations seems to think that everyone has a community garden over the back fence, and the time, interest, and know-how to not only plant year-round crops, but also then prepare healthful meals with it. Processed foods are usually an afterthought and deemed not as good for you. Assumptions are made about cooking capabilities, cooking utensils, time and all the other factors that go into working out what to put on the table for dinner.

We need to move away from the utopian world that looks through the lens of everyone having gone through a school with a Stephanie Alexander Kitchen Garden program, a dedicated cook at home who is able to do ‘All The Right Food Things’, a budget that never needs to consider the cost of food, and the idea that everyone is harbouring secret ambitions to win MasterChef, and living with grand delusions of Nigella Lawson (hand raised right now). Because that’s not the reality for most people.

Not a Warhol, but a stunning Appleton.

*_{(Click on image for details of artist, Appleton, who kindly gifted us this artwork when we were hanging out in his New York studio in Jan 2020. We’re so lucky it’s hanging in our kitchen.)}*

Here and now

February 3, 2022 in Diabetes, Real life | 1 comment

It seems that in diabetes, we spend a lot of time looking back.

But there is nothing we can do about what has happened before this moment. There is nothing we can do about days, weeks, years, decades of doing less diabetes than we would like to. There is nothing we can change about using less advanced tech, or less sophisticated insulins. There is nothing we can do about years of not seeing diabetes healthcare professionals, or seeing health professionals who weren’t giving us the best care. There is nothing we can do about missed screening appointments. There is nothing we can do about forgotten boluses and the days of above range glucose levels.

There is nothing we can do about the time before a diagnosis of a diabetes-related complication, and equally, there is nothing we can do about the time before a diagnosis of type 2 diabetes.

That time is behind us, and no amount of regret, or wishing we’d done things differently, or even ambivalence about it, can change where we are right here, right now.

Perhaps that is one of the reasons that the blame and shame that is intrinsically tied up in proclamations of ‘If only you had <insert whatever in the past we didn’t do>’ are so damaging. Because instead of focusing on what can be done now, and in the future, we are dragged back to what we didn’t do earlier.

Those myriad inspirational quotes and memes we see on every social media feed and in posters on office walls about not being defined by the past don’t seem to have made their way to diabetes thinking. Instead, we are faced with heads shaking, fingers pointing, and knuckles being rapped for what are considered failings of our diabetes-past. And our own judgement as well of our own shortcomings.

Of course, we can learn from our history – we can reach back and remember things that we know work and things that don’t, and use those moving forward. But living with regrets will not change the outlook. And regrets will not help with our diabetes present, and how it might shape our diabetes-future.

Dealing with today’s diabetes is already a lot. A. Lot. Looking backwards and seeing a shopping list of missteps just adds extra burden. Really, all we have in our arsenal is what we can do right now, and perhaps the hope of what might be around the corner. That’s what we have. And that’s what we can do.

Frank Modell cartoon from New Yorker, 1964.

#SpareARose 2022: same, but different

February 1, 2022 in #SpareARose, Advocacy, Awareness, Community, Diabetes, DOC, Social media | 7 comments

February 1 and Spare a Rose. The two go hand in hand in my mind. It’s when the diabetes community comes together to support a campaign that gives back in the most fabulous way. For anyone who is new here, or who isn’t sure why the DOC takes on a fetching red hue for the month of February, let me explain.

#SpareARose is a beautifully simple idea that asks people to forgo one rose in the bouquet to their love on Valentine’s Day, and instead, donate the saving from that one rose to a charity that supports people with diabetes in under-resourced countries. That one rose (about $5/£5/€5) covers the monthly cost of insulin.

Since 2013, the campaign has been known as Spare a Rose, Save a Child, and the charity that has received all donations has been Life for a Child. Over those nine years, the diabetes community – people with diabetes, people affected by diabetes, diabetes organisations and diabetes industry – has raised close to US$400,000, providing months and months of insulin to children in under-resourced countries. Plus, it’s raised the profile of the charity. Back when it started, very few people in the diabetes community knew about Life for a Child. Now, it’s supported financially by many, and recognised by even more.

For 2022, the campaign is doing something different and broadening its outlook to support people with diabetes diagnosed as adults, or who ‘age out’ of programs that have an upper age limit. Life for a Child supports people up to the age of 26 years. But of course, type 1 diabetes is for life, as is the need for insulin, diabetes supplies and healthcare.

With this in mind, #SpareARose has changed to Spare a Rose, Save a LIFE to recognise how the campaign will be helping adults with diabetes now, and the new charity partner – Insulin for Life.

Insulin for Life is a global charity and supports people with diabetes in many of the same countries supported by Spare a Rose. It’s so wonderful to know that these people will continue to receive insulin and other diabetes supplies, even once they hit 26 years of age, and beyond. You can read more about the important work done by Insulin for Life here.

Despite these changes, the campaign remains the same. One rose = one month of life. It’s a fabulously simple equation. What also remains the same is that it is a campaign BY the community, FOR the community. Every single person in the Diabetes Online Community can be a part of #SpareARose. We’ve seen tweetchats hosted by people across the world, we’ve seen fun challenges on twitter (remember #SpareAFrown?), we’ve seen videos and vlogs and lots and lots of blog posts. #SpareARose is on Twitter, Facebook and Instagram.

Of course, it’s not just financial contributions that make #SpareARose the success it is. It’s also about the community raising its voice to a veritable roar, and elevating the campaign and its charity partner. If you can donate, please do. If you can share, please do. Every time you share, someone might be click on the donate button, or the share button.

#SpareARose to Save a Life. Is there a more meaningful gift to make in the name of a loved one, a friend, a colleague, or in your own name? I really don’t think so.

DISCLOSURE

I’m so honoured that I get to be involved in this campaign by sharing and promoting it as widely as I possibly can. I have spoken about #SpareARose across the globe and written dozens of pieces to raise awareness of this fabulous grassroots campaign, and anyone and everyone can do the same thing. Really, I have no disclosure. I volunteer my time, along with a number of other diabetes advocates from around the world who drive socials to talk up #SpareARose. We also work with diabetes organisations and industry to encourage donations. If you would like to get involved, please reach out. The more the merrier!

Jason and Irina

January 31, 2022 in Community, Peer support, Real life, Social media | Leave a comment

I talk about peer support being life-changing and life-saving. I say those words frequently when asked to speak and write about why peer support is so important to me, and what I hear about the value of peer support from others in the diabetes community.

But does it get more life changing than this?

Today, I’m writing about Jason and Irina, a couple of people I’m lucky to call friends.

They met during the weekly OzDOC tweetchats back in October 2016. Those weekly, rapid-fire hours of diabetes chatter fostered many great friendships. And this particular friendship, formed in between 8.30pm and 9.30pm on a Tuesday evening, led to Jason moving states to be with Irina.

They really did start with a tweet!

This is one of those magical stories where diabetes may be the thing that brought people together, but the connection is so, so much more than that. I’ve been lucky enough to catch up with Jason and Irina a few times in person over the (pre-COVID) years. I remember after the first time I met them, I walked away thinking what a magical couple they are – so right for each other.

It really wasn’t a surprise when I found out that they were engaged. Jason kept me updated with their wedding plans and I was so honoured that my family was invited to share their special day.

And then COVID happened.

There’s no need to talk about how the pandemic threw everything it could at this couple to try to disrupt their wedding. I lost count of the number of times their big day was rescheduled, Omicron being the most recent attempt to try to stop it.

But, as it turns out, Jason and Irina’s yearning to get married was way, way stronger than even the most virulent strain (so far) of COVID. A couple of weeks ago, Jason messaged to say that they were going ahead, with a smaller celebration.

And so, on Sunday of last week, the happy couple got married in what Jason described as a fairy tale.

So much love to the two of you. I can’t take any credit at all for this gorgeous union – all credit for that goes to these two lovebirds. But I can say that it started with a tweet in an OzDOC tweetchat. And that is pretty damn amazing!

Viva gli sposi!

Very superstitious

January 18, 2022 in Diabetes, Real life | 4 comments

Sam Seaborn : You wrote a concession?
Toby Ziegler : Of course I wrote a concession. You want to tempt the wrath of the whatever from high atop the thing?
Sam Seaborn : No.
Toby Ziegler : Then go outside, turn around three times and spit. What the hell’s the matter with you?

This is from a scene in an episode of the West Wing, one of my all-time favourite TV shows. It’s election night, and President Bartlet’s staff are waiting for the call to be made. His communication director, the ever-curmudgeonly Toby Ziegler, is admonishing his deputy, Sam Seaborn, for making any sort of prediction or assumption about the outcome of the election, even though the President is a shoo-in for his second term.

I get it – the idea of jinxing things is one of those superstitions that many of us hold close. I believe in science and evidence and research and nothing else, but even so, I throw salt over my shoulder, tap the table (or my head) and say ‘touch wood’ anytime I predict or claim something positive is going to happen.

This introduction is purely to lay the foundations for a lot of tapping on wooden doors and tables, throwing salt over my shoulder, wearing an evil eye charm, and making the ‘cornuto’ sign (Italians will know…) at my laptop at the end of each sentence, because I am sure that by the end of the week (if not sooner), this post will not have aged well at all.

But anyway, here goes…

COVID has made its way to Casa Diabetogenic. We’ve spent the last two years desperately doing all we could do avoid it, obsessively following health orders to the letter, being super cautious about being in crowds, amassing a huge collection of masks (and wearing them any time we left the house), and being a pin-up family for vaccinations, getting our jabs the minute we could, and boosted to boot.

Despite that, COVID announced itself on Sunday morning after a round of RATs. In the olden days, we would go out to brunch. In the present days, we do a saliva test to see if we have the plague.

Two of the three inhabitants of the house were positive. The one with diabetes (me!) was not. And I remain that way (salt over shoulder) forty-eight hours later, (touch wood).

The positive tests became hour zero and from then on, we were in full isolation mode. Aaron was confined to our bedroom, the kidlet to her own. If either of them need to leave their room for any reason, they send out an alert, and mask up, and wipe down any surface they’ve as much as looked at sideways, and empty half a can of Glen20 in their wake.

I prep and deliver all food and drinks to rooms and am at the beck and call of the infirm. We Facetime each other throughout the day to chat and check in on symptoms. I bossily remind them to keep up fluids and eat the segmented oranges I’ve delivered to them. I am annoying myself, so can’t even being to imagine how much I’m annoying them. We haven’t been in the same room as each other at all, and only see each other in the flesh when we are eating meals in the garden – sitting away from each other, necessitating speaking in very loud voices, giving our poor neighbours unwanted insight into our conversations.

It’s slightly absurd. Until those two lines appeared on those two tests on Sunday morning, we had been carrying on as normal and not giving a thought to needing to isolate from each other. I’d just gotten out of bed, a bed I’d been in for eight hours with my COVID positive husband lying right there. I’m pretty sure the night before I’d handed him my fork so he could have a taste of something I was eating. While we were super cautious about being around others, we didn’t for a second think that we needed to worry about our little unit. Home was meant to be a sanctuary. Now I’m trying to elude the little virus that could from inside our own home. It’s the shittiest game of dodgeball I’ve ever played.

My anxiety has remained mostly in check. I’ve gone into fight mode as I desperately try to disinfectant spray any hint of the virus. I only care that my family is okay and not feeling too poorly or taking a turn for the worse in any way. I’m worried that they won’t recover easily and quickly. I can’t stop thinking about long COVID.

And then there are the flashes of terror (like the middle of the night when I’m lying awake) and I wonder how my body WILL behave when (if?) it gets COVID and then, for a few moments in the cover of darkness, I find myself becoming a statistic, explained away by my underlying condition. They’re the words that ring in my ears thanks to every single presser from the NSW government. It’s so bleak and terrifying in those moments, and all I can do is remind myself that even though there are no guarantees, I am doing all I can.

I’m obsessively checking my CGM because if ever there was an early warning alarm system, it’s my glucose levels. It’s a reliable tell to let me know that an infection is brewing. Straight, steady, in-range numbers greet me in the mornings, insulin doses not needing to be superpowered by Loop to keep me that way.

All the while, I’m trying to understand how it is possible that I remain COVID free (cornuto sign). Because that makes no sense at all. Other than to believe I am some sort of extraordinary, turbocharged powerhouse of immunity (I mean, the vaccines and boosters probably have something to do with it too…)

Friends and family keep checking in and I boast about how, for once, my broken body is being legendary. ‘Are we…superhuman,’ asks my friend Georgie who has also managed to remain COVID-free despite being exposed left, right and centre, even though her immune system and mine match in their hopelessness. (Georgie, I just waved my evil eye charm around for you.)

I have developed this ridiculous superiority complex that is bound to be my downfall. Is it possible that my stupid, fucked up, overactive immune system that hasn’t shown any reason for me to believe it knows what it’s doing and keeps killing off things it shouldn’t has decided to be overactive in the right way, destroying COVID as it’s tried to move in? Do I have an invisible protective shield around me that has transformed me into some sort of crusader, fighting the evil coronavirus and winning? (There is a small salt mountain now behind me. Also, I’m an idiot.)

But then I remember that pride comes before a fall, and that this body of mine and this immune system of mine are not the sharpest tools in the shed at the best of times. And that thinking, let alone writing for anyone to see, that perhaps I might escape this round of COVID is only going to come back to bite me. And I think that I really should listen to Toby Zeigler, because truly, the last thing I want to do is to tempt the wrath of the whatever from high atop the thing. Probably best I don’t hit publish in that case…

The West Wing

Too mild a word

January 13, 2022 in Communication | 1 comment

It seems fitting that for my first post for the year, (happy 2022, friends!), I look at how diabetes #LanguageMatters is, (once again), colliding headfirst with COVID communications.

It’s the age of Omicron, and we are repeatedly, almost obsessively, reassured that this particular strain of concern of the virus we’re all completely sick of (and, for many, sick with) is mild. Mild. Mild. Mild.

And all I can think about is how damaging that word has been in diabetes communications, and, it seems, it’s quite problematic in COVID circles too.

Mild suggests that something is inconsequential; that it is minor; that it is easily resolved. Mild doesn’t consider the emotional toll and worry people might be feeling about being exposed to a virus that is spreading like wildfire.

When we talk about mild hypos in diabetes, we’re referring to those pesky hypos that are fixed with a few jellybeans and a couple of profanities. It’s a wham-bam-thank-you-ma’am low that is done and dusted in a few minutes. It’s a quickie.

Except anyone who lives with diabetes knows that is not necessarily the case. So-called mild hypos can be worrying and stressful and cause anxiety. They can impact on how people feel about their diabetes and confidence.

Calling them mild has meant that these types of hypos are dismissed, and seen as something that, as well as being easily resolved, can be easily prevented. That’s not how hypos work, and framing them that way can lead to people with diabetes being blamed for not doing what they should have to prevent them, or that they are not something that needs attention.

Talking about the effects of Omicron is important. It’s good to know that, in general, early results are showing that Omicron is causing less severe illness, despite being highly transmissible. But a mild dose of a serious virus that still has so little known about it isn’t unimportant. It may be less dangerous than previous strains, but it can still be serious.

There is a flow on effect to defining Omicron as mild. It can mean that it’s not being taken seriously, and people are, perhaps, not being as cautious as they could be. Anti-vaxxers are using this definition as ammunition to further shape and spread their unhinged views, and ignore simple public health efforts, such as wearing a mask and maintaining physical distance. I know this group doesn’t need any help in pushing back against evidence-based measures that clearly help stop the spread of contagious diseases, but I’ve seen them bleat with delight ‘OmiCrOn iS mILd’ as part of their deranged rants, because that’s what they keep seeing and hearing.

Sadly, calling something mild has led to lousy planning (some would say sheer incompetence) by the government and government agencies. It’s this planning that is needed to help people properly prepare and protect themselves and their community.

I wonder if we were to ask people what their stress levels are like as they can’t access rapid antigen tests, or can’t afford to pay for them if, by some miracle where the planets have aligned, they find somewhere that has a hidden stock somewhere. And how they’re feeling as supermarket shelves are emptying, lines for PCR tests thread around (many) blocks, and their workplaces are needing to close because so many people are home from Omicron.

I’m guessing if they were asked, the answer wouldn’t be ‘mildly stressed’. Nor would they necessarily rate the situation in which we find ourselves as ‘mildly inconvenient’.

Mild doesn’t mean insignificant. Anyone who waits for daily numbers and has seen hospitalisation, ICU and death rates climbing knows that. Families of people who are seriously ill, or who have died know that. People like me who have spent the last two years doing everything I can to protect myself because I’m so terrified about getting COVID know that.

Communication around COVID has been a disaster from the beginning. And two years on, it hasn’t improved. Because here we are: less than two weeks into the new year, and about a month into a new variant and it’s as though we haven’t learnt a bloody thing about how and why words matter when speaking about health.