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This is the second year running that I have missed Mother’s Day. Last year, I was in London en route to the HypoRESOLVE kickoff meeting, and this year, I’m in Florence for a DOCLab Advisory Group (DISCLOSURE: flight to Florence from Amsterdam covered by Lilly) meeting following on from the HypoRESOLVE AGM (DISCLOSURE: flight to Amsterdam from Melbourne covered by HypoRESOLVE). Both years, we’ve celebrated a week early to make sure that we mark the day. Because it is an important day. Our kid wants to spend the day spoiling me (which is just so gorgeous!), and I want to acknowledge just how essential my own mother has been throughout my forty-five years. 

So, here is something I wrote about my own Mum and just how she has shaped so much of how I live with diabetes. 


It’s Mother’s Day. In recent years, as I have found aspects of the day challenging, I’ve really channelled my energy on Mother’s Day into what my own mother has given me.

I am willing to admit my bias, but I think my mother is the best Mum in the world. She’s very cool, and when I was growing up all my friends thought she was awesome. She was in her early 20s when she had me, and has always been a young Mum. That’s not to say that she always knows what the cool kids are talking about. We have many stories of absolutely hysterical things she has said and done in the belief that she was being oh-so-hip. My sister and I never stop making fun of her, which she mostly takes with good grace. Mostly…

When I was growing up, there was nothing that I felt I couldn’t talk to Mum about. She was very open and no subject was taboo. I felt comfortable speaking with her about pretty much everything, and when I had my own daughter, I knew that I wanted to have the same sort of relationship with her.

Mum instilled in me a love of food and cooking – something for which I am so grateful. Yet as great as the cakes are that I pull out of the oven, or the plates I serve up for dinner, nothing is as good as her food.

She showed me that chicken soup is truly all it takes some days to lift my spirits and fortify me for what comes next. I’ve not managed to always have a stash in the freezer for quick thawing, but I am always welcome to let myself into my parents’ house and help myself to whatever is in my freezer. And when I am under the weather – physically or emotionally – a text message of ‘I’m sending dad over with some chicken soup for you’ is an inevitability.

When I was diagnosed with diabetes, she was there, alongside me: a pillar of strength on the outside when, I knew, she would have been falling apart inside.

She taught me how to live with a chronic health condition. I have watched Mum deal with her own health conditions for over thirty years. She has done so with incredible grace, determination and resolve. Every time something new has been thrown at her, she’s rolled up her sleeves and taken it on. A couple of years ago she had a double knee replacement and the speed and intensity of her recovery was a marvel. She pushed and pushed through rehab, recovering far sooner than expected.

There may not be an instruction book for diabetes, but thanks to watching Mum live with lupus, rheumatoid arthritis and Sjögren’s syndrome meant I did sort of have a real-life manual for how to get on with life even with my new health challenge. I looked at her attitude and took it on as my own.

She’s shown me that even through the pain and fatigue and frustrations that seem to go hand-in-hand with life-long health conditions, laughing and carrying on in a silly way is absolutely okay.

But equally, she also taught me that it’s okay to cry and feel overwhelmed.

She helped me understand that even though there are times that the thought of another appointment with another doctor for another thing was just too much to deal with, it is okay to complain about it, but I just had to do it.

She taught me that self-care days that involved sitting on the couch under a quilt watching reruns of British cop shows is absolutely okay. But the next day, you get up and get back into it.

She taught me that even though there were times I didn’t want to, I had to show up – show up to my own care, to doctors’ appointments, to blood draws, to work. She might say ‘Diabetes is shit today,’ (she’s a trade unionist; my potty mouth came from her!), ‘But you have to keep going.’ She tells me all the time that life with chronic health issues is boring. And it is. It really is!

Every day, she’s made me see that even though something may look easy, living with a chronic health condition is simply not. She wears the invisibility of her health condition the way I do mine. We smile through the sadness of what could have been had we not had so many health challenges to manage.

She made me understand that not everyone is as fortunate as we are when it comes to health care accessibility and affordability. And that helping those less fortunate is a responsibility I must never shirk.

The unconditional love, support and pride she has demonstrated in spades is, of course, much appreciated. Having a prototype right there for the type of mother I want to be has been a blessing. But I appreciate so much more than that. Our health issues may be different, but it is my Mum who taught me how to thrive with diabetes. I would not be living the way I am now without her having gone ahead of me. Or without having her stand beside me, and hold me up when I’ve needed.

Happy Mother’s Day, Mum. Thanks for the chicken soup. And everything else.

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I’ve been working for diabetes organisations now for coming up to eighteen years and unsurprisingly have accumulated some truly fascinating things along the way.

Including a photocopy of a 1972 edition of ‘Victory’, the ‘Official publication of the Victorian Diabetic Association’ (now known as Diabetes Victoria).

I was flicking through it the other day and came across this gem:

Apparently, ‘the wife’ is the reason her husband either becomes overanxious about his diabetes or instead, takes charge and continues his existence as a captain of industry, putting diabetes in its rightful place. That’s right, it is ‘the wife’s’ fault her husband becomes a blithering mess unable to look after himself and incapable of doing more than curling up in his favourite chair, wearing his favourite slippers and cardigan while being (over) parented by his partner. This must be because 1972 wives have some sort of enchantress powers that conquer any man’s autonomy or decision-making abilities.

1972 wives sound magical and awesome. How do I become one?

All joking aside, if we remove all gender references in this piece and have it just about the way in which others treat us and how that influences our view about our diabetes, there is, perhaps, an element of truth to the thinking behind it all.

What I need (and am fortunate to have) is a group people around me to support me as I make decisions and diabetes the way I want and need. They back me by being there with a shoulder to lean on or an ear to listen if I ask, but never take over or try to ‘fix’ things.

This sort of support helps us know that we can do this. I may never think of diabetes as ‘an amusing inconvenience’ (there is little to be amused about a lazy pancreas), but I will never see myself as neurotic or incapable.

I certainly don’t want a 1972 wife (or a 2019 partner, parent, sibling, friend, colleague, healthcare professional, associate or anyone else) dictating how I feel about the health condition that lives in me. I do want them to laugh with me at this ridiculousness, though. And promise me that they will continue to keep being exactly the way they are right now! (And maybe joining me when I tell off anyone who suggests – even for a second – that I inject in the lav adjoining the boardroom.)

Well, it’s been a year. It’s always the same. Come December, and as Mariah is blaring in every store I walk into, I start to feel exhaustion. But it’s not all bad news. Holidays loom ahead. Sunny weather means more time outdoors. And long, warm nights out with friends and family seem like the perfect way to spend my time away from work. Oh, and perhaps most excitedly, my mother is going to make her famous zippoli – my favourite Italian Xmas food.

The happiest time of the year is when mum serves up zippoli. What a time to celebrate being from an Italian family!

The diabetes world remains comfortingly – and frustratingly – static at times. There are constants that shape each year, but there are also changes. Some are positive, some lead me to wonder just who is making decisions that impact on PWD and why do they seem so far removed from the realities of living with this condition?

I’m ready to draw a line under 2018 – a bold, thick, solid line – farewelling the year with the knowledge that there will always be some things about diabetes I know to be true.

Diabetes is hard. The relentlessness of it doesn’t really subside. As much as we have tools to try to make things easier, it permeates, something I realised back in July when the wind was knocked out of me as diabetes unleashed itself into every part of me, taking hold and trying to pull me under.

There is no silver bullet. Loop does seem magical to me, but my diabetes is still there. It is just here in a different way – a new normal.

The inequalities of diabetes continue to be an important theme throughout our community and we can’t turn our backs to the fact that access to the most basic of diabetes medications and treatments remains out of reach to many. There is no one way to advocate for change, and I commend everyone working at the front line to improve the situation.

Which brings me to the point where I remind everyone that it is absolutely not too late to make a donation – however small or large – to Life for a Child. Saving the life of a young person at Xmas time seems like an absolute no-brainer to me.

Peer support remains a cornerstone of my diabetes management toolkit. Of course the shape of that support changes – I’ve met some incredible new people this year and been involved in some remarkable projects. At the same time, there have been some important collaborations with diabetes friends I’ve known for some time. It’s those diabetes friends that continue to help me make sense of my own diabetes, make me realise that my village is global, and know that wherever I turn, someone will have my back. I can’t explain just how reassuring that is.

Despite feeling that there have been times that the community has been splintered and a little disjointed, I still believe that the diabetes community is something positive. I also know that it can take time to find your tribe in there, and accept that not everyone has to be best buddies. But when you do find those people who you just click with (and that doesn’t mean agreeing on everything, by the way) you do everything you can to hold on to them, because that’s where the magic of working with peers happens.

While co-design seems to have become a bit of a buzz phrase, there are some examples of it that just make diabetes activities and projects so much better! This year, I’ve had some incredible opportunities to work on projects with a vast array of stakeholders and what can be achieved is incredible.

Sometimes, (a lot of the time?) we need humour in diabetes. And sweary birds. Finding Effin’ Birds earlier this year was a source of such joy and happiness, especially as I realised that (unintentionally) the clever folk behind it have made it all about living with diabetes. I cannot tell you how many moments I have come across one of their pics on my social media feeds and it has perfectly nailed my diabetes mood.

We can’t be afraid to have conversations that can be considered difficult. This was the foundation of the Australian Diabetes Social Media Summit this year, but it went far beyond that. Women, diabetes  and sexual health remains an issue that needs a lot more attention. And we need to keep talking about mental health and diabetes.

Language matters. Whatever people believe, the way we speak – and think – about diabetes has far reaching effects. It affects everything from the treatment we receive, the public’s perception of diabetes, where fundraising dollars are allocated and how governments fund diabetes.

And so, I think it is fitting that I round out the year and this post with one of the things I am so proud and honoured to have been involved in. It is one of the best examples of co-design; it involves diabetes peers, it acknowledges that diabetes can be a difficult monster to live with, and it holds people with diabetes up. Oh – and it reminds us that absolutely, completely, utterly, #LanguageMatters.

I’m taking a little break from Diabetogenic to do … well… to do nothing. That’s what I have ahead of me for the next three or so weeks. No plane travel, no speaking engagements, no media, no dealing with the diabetes things that get me down. Except, of course, my own diabetes thing. But I asked Santa for a pleasant few weeks of diabetes being kind to me. I’m sure that’s what I’ll be getting under the tree. As long has he can work out how to wrap it. 

I hope that everyone has a lovely festive season. I do know for many it is a really difficult time of the year. Thank you to everyone for reading and sharing and commenting. I’ll be back some time in January. Ready to go again, and to rant and rave, celebrate, and shamelessly talk about what’s going on in my diabetes world. I hope to see you then. 

I wrote this piece a couple of years ago about how to get through festive season feasting, but it absolutely still rings true. So I thought I’d share it again with a few tweaks. And remind everyone (including myself) that food doesn’t have a moral compass point, and that we can and should enjoy whatever we choose eat during the holiday period without guilt or regret. 

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You may not have noticed, but the festive season is upon us. (Actually, according to Woolies, the festive season has been upon us since the first week of September which was when I first saw mince pies on their shelves. As Louden Wainwright III says ‘It’s a season, it’s a marathon….’)

Anyway, it’s the festive season and with it comes lots of messaging about eating with diabetes during this time of the year. Now, I’d like to leave my diabetes behind whilst eating during the holidays, but I’ve come to learn that diabetes is a shit and doesn’t work that way. Because, diabetes IS for Christmas….and every other bloody day of the year as well. Happy holidays!

I saw an article this morning about how to keep your eating and drinking in check during Xmas and other parties, and by the time I finished reading, I was weeping uncontrollably and wanted to curl up in the foetal position in the corner and not emerge until February. I also wanted a drink, but it was 6.45am and I was feeling the judge-y eyes of the writer staring at me and the Moscow Mule I was about to make for breakfast.

All articles about diabetes and festive-season-eating demand limiting everything – alcohol, food, happiness. Quite frankly, limiting alcohol at family gatherings is not an option for many people, which seems to be lost in this particular article’s horrific and laughable suggestion of taking your own water to water down drinks. (I lost the will to live at that suggestion.)

Obviously, a blow-out is best avoided, but that is wise even if you don’t have diabetes. There is nothing worse than feeling as though you literally cannot move from the sofa – mostly because it means you could be stuck sitting next to a distant relative who wants to tell you, in detail, about their recent adventure in passing kidney stones, or (worse) about their neighbour who died from diabetes-related complications. Diabetes: it’s the gift that keeps on giving.

So, here are some of the things I’ll be doing to survive the next few weeks.

  • Acknowledge that this time of year is about food and that is okay. This is definitely the case for my family, and I am already counting down the days until I gorge myself on my mother’s freshly made zippoli.
  • Throw any thoughts of guilt out the window (along with suggestions of BYO H2O).
  • Make a game out of my CGM by seeing if I can spell out any swear words in the ‘ain’t no mountain high enough/valley low enough’ trace.
  • Remember that even though I have diabetes, I have every right to enjoy whatever I feel like eating. Or don’t feel like eating. The low(er) carb thing may or may not stick over the festive period. Obviously, my mother’s zippoli are carb- and fat-laden parcels of perfection, so the low(er) carb thing can fuck right off once they are set down in front of me, but I probably will still avoid other carb-y things because dealing with high glucose levels or inadvertently overdosing on insulin does not a festive occasion make.
  • Seriously, give me a huge bowl of cherries for dessert and I am a happy chicken. (The non-watered-down alcohol has probably helped get me to that state, but cherries also make me undeniably happy.)
  • Brush up on my responses to ’Should you be eating that?’, which (thankfully) I probably won’t need to use anyway. Funny how I only ever needed to hit someone once over the head with a spoon after they asked me that…
  • Find red and green Sharpies and write ‘My Diabetes; My Rules’ in festive script on the inside of my hand to remind me to do whatever works for me. And to shove in the face of anyone who does actually ask ‘Should you be eating that?’
  • Thank the Xmas angels that Brunetti in Carlton is open on Xmas morning, meaning that we can make the ten-minute dash there, drink coffee and eat pastries before the onslaught of family, food and festivities.
  • Make a donation to Life for a Child because not everyone gets to decide if they will use extra insulin to cover the second slice of passionfruit pav.

This blog is not about giving advice, but I am going to give some now as I believe this is possibly one of the best ways to survive until the end of the year:

Don’t read any articles telling you to eat nothing but cardboard or watered-down grog. Or suggesting you take your own plate of crudités to parties. I don’t care that it’s a French word, it just means carrot sticks. And having spent the festive season in France, I can tell you no one was serving carrot sticks for the family Xmas dinner. Plus, if I’d taken my own, I probably would have been mocked in French, and not been allowed to drink any of the delicious non-watered-down red wine or bûche de Noël for dessert.

Aussie festive season = mango season

Is there a more contentious issue when it comes to diabetes than food? Possibly, but when it comes to what we eat as part of our diabetes management plan, there is a lot to wade through.

For those who have had diabetes for more than a few years, it is highly likely that guidelines will have shifted, if not outright changed directions. The food plan that was ‘in’ for me at diagnosis is different to what is recommended now. In the last twenty years I have heard and read so many different ideas about the best ways to eat to ensure optimal diabetes health. My head has spun – and so has my stomach at times – with the chopping and changing ideas. To be honest, I can’t keep up.

Plus, we live in a world where everyone from celebrity chefs to movie starts are health gurus, tricking us into believing they have the answer to nutritional nirvana… if we just take this super elixir or this mushroom and cacao supplement. (Yes – I’m looking at you Ms Paltrow. Shush now, please. )

The DEEPtalk event last week was under the ‘mealtime challenges’ banner, but it covered more than just what happens when we sit down to eat. Because, we all know there is much more to food than sustenance and the sum of a nutrition panel. If that was the case, we’d be happy eating things that looked and tasted like, and had the texture of cardboard.

Considerations around the food we eat are social, political and environmental. We need to think about what we will be doing with that energy we have going in. It has to look, smell and taste appealing. Food triggers memories and deep emotions. But it can also be a source of difficulties. The eight different topics at DEEPtalk took in a lot of those different issues.

Phylissa Deroze welcomed us to her holiday table, enticing us with a seemingly endless buffet of delicious foods. But that festive spread became an obstacle course as she explained how difficult it could be to ensure she felt she was being true to eating the foods that she felt she wanted – and needed to eat – while dealing with the challenges of food pushers. ‘The two main ingredients in holiday food is carbs and love,’ Phylissa told us. As it turns out, both challenge her diabetes management.

Speaking of carbs, Antje Thiel reminded that just thinking about carbs when trying to assess how food impacts glucose levels was naïve and short-sighted. She listed a veritable shopping list of other factors that need to be measured. From hormones, to the timing of eating to the weather…these factors (plus a hell of a lot more) all impact in some way.

Quinn Fisher and Leighann Calentine shared the stage together and did a great tag-team presentation about how being a kid, and now teen, trumps diabetes any day, announcing early in the talk ‘Cake is totally bolus worthy!’ which seems as good a motto as any by which to live one’s life. Quinn is 14 and has had diabetes since she was three, and her family’s practical approach to how she manages things like sleepovers and birthday parties makes good sense.

Sara Moback spoke about a topic that simply does not get enough airtime: diabetes and eating disorders. She shared the story of her anorexia nervosa diagnosis and the treatment she received following that diagnosis. And she also reminded us that the focus on food, and the constant striving for a perfectly straight, unmoving CGM  trace are surely contributing factors to why girls and women with type 1 diabetes are twice as likely to develop an eating disorder.

Paul Louis Fouesnant’s presentation had my heart racing as he explained how he managed his diabetes and the fears of low glucose levels after a broken down car left him stranded for a couple of days in remote Madagascar. Clearly he is the type of person you want around in emergency situations: he can make fruit puree from foraged berries. Paul Louis’ presentation was about the challenges of travelling to countries where food may be a little different to what we are used to. But he is firmly of the belief that you try everything in front of you – and enjoy your travels.

Bruno Helman introduced us to his vegan life with type 1 diabetes, explaining the road he took to becoming vegan and how he manages his training to run marathons. (Oh, and when I say ‘marathons’, I mean 27 in a year. As you do…) For me, Bruno’s talk probably challenged many of the ideas about diabetes eating than any of the others, simply because it was the most different to the eating plans that I have subscribed to over the years. As someone who absolutely loves vegetables, and incorporates them into every single meal, I still think there is a lot more I can do to increase the plant-based component of what I’m eating. (And I don’t just mean more carrot cake..)

Melanie Stephenson eloquently shared how she moved from adding marathon running to sprinting, and how she carb loads to ensure that she performs at her peak on race days. Can I say how refreshing it was to hear someone talking about carbs as nothing more than a form of nutrition, rather than something to be demonised and feared. Mel and some friends decided that not only would they run a half marathon, but they’d also break the world record for the number of people with diabetes running in it. They did that in June this year.

And finally, Bastian Hauck rounded out the event, using one of the best analogies for diabetes management that I have ever heard. The audience was mesmerised as he challenged everyone – except those of us with diabetes – to commit to a week, and then a month of daily dental flossing. With caveats: it had to happen twice daily at 8am and 8pm. Oh, and any other time food or drink was consumed. Plus, the correct amount of floss needed to be used each time: 5cm for each 10grams of carbs…no more, no less. And, of course, people were required to keep a record of all they ate. How many people in the room were prepared to even try this challenge? One. That’s right…one person. Thanks, Doug!

Eight topics; nine speakers. And this just barely scratched the surface of the different ways food can be used as part of a diabetes management approach.

My job was to introduce the event, the speakers and tie together the theme for the event. In other words, I had the easiest job for the day.

I listened to each DEEPtalk twice – once during the rehearsal and then for the official event. And they brought home the message that there is no one size fits all to eating when it comes to diabetes, in exactly the same way that there is no one way to do any aspect of diabetes management. The speakers also showed that food is never, ever only going to be about diabetes. Sometimes, an apple is just an apple, not 15g or 20g of carbs, requiring <X> units of insulin.

Guidelines are all very well. I understand that they are based on best practise and evidence. I also understand that HCPs like guidelines because they make things so much easier. But for those of us living with diabetes…our days are not lived according to guidelines or checklists or evidence. Our lives are lived by morning coffees, and neighbours dropping in for cake, and someone bringing cookies into work, and mango season. And, damn it, I just want that piece of chocolate/pizza/watermelon…

DEEPtalk showed us how just a handful of people with diabetes manage the challenges, success and joys of everyday eating. We all have our stories about what works for us. I love that this event allowed people to share them in a safe and non-judgemental way. We need a lot more of that.

If you’ve not watched the DEEPtalks yet and would like to catch up, the link is can be found in this post

L-R: Antje, Leighann, Quinn, Bastian, me, Sara, Paul Louis, Melanie, Bruno, Phylissa

DISCLOSURE

The DEEPtalk event was hosted by Novo Nordisk and was held at one of their facilities in Copenhagen. I was invited by the Global Patient Relations Team to moderate the event. Novo covered costs for my (premium economy) flights (I used my own frequent flyer miles to upgrade flights) and two nights’ accommodation as well as transfers and meals while I was in Copenhagen. There is no expectation from the Global Patient Relations Team (or Novo Nordisk more broadly) that I will write about the event or other activities held while I was in Copenhagen and what I do write is mine. All mine. 

This year for World Diabetes Day, the International Diabetes Federation has decided on the theme ‘Diabetes Concerns Every Family’. According to the WDD website, the aim of the campaign is ‘…is to raise awareness of the impact that diabetes has on the family and to promote the role of the family in the management, care, prevention and education of the condition.’

I get that. I have said it on numerous occasions: it takes a village to live with diabetes.

I was a little nervous when I first saw some of the materials from the campaign, because I was worried that it may focus too much on the negative effects of diabetes and how it burdens the families of those living with diabetes. I know how diabetes impacts my family and I feel enormous responsibility already about that. I don’t need to be reminded of it, and I certainly don’t need to be guilted into being told that if I am not managing my diabetes properly I am doing a disservice to my family.

Although there have been a few little things that hint at those ideas, mostly, what I’ve seen has been positive and focused on celebrating and acknowledging those villagers who help us live with diabetes.

Diabetes Australia has decided on the campaign of #MyDiabetesFamily to highlight the idea of the village, and acknowledge that ‘family’ looks different to a lot of people.  For some people with diabetes, it will be their immediate family – parents, partners, kids etc – who are their main cheer-squad and supporters; for others it will be their friends, work colleagues or maybe gym partner. Someone the other day told me that their dog is their most important diabetes supporter, providing them with comfort – and alerting them to lows.

I was asked to put together a collage of the people who I would refer to as #MyDiabetesFamily. This is it:

#MyDiabetesFamily

Obviously, and most importantly, Aaron and the kidlet feature. They know my diabetes in a way that no one else does because they see it most. They see the difficult days, the frustrations and how overwhelmed I can get, but they also see my celebrate the positives. And they have seen how much my diabetes – and my attitude to it – has changed in the last 12 months. In some ways, they benefit from Loop, too because my diabetes intrudes a lot less into our family’s life.

My parents and my sister are on there too – another obvious inclusion. Their support is never ending.

My gratitude for my family – in the more traditional sense of the word – is unending. They may not have diabetes, but they deal with it in different ways. While they may not understand that feeling of unquenchable thirst that comes from high glucose levels, or the panic of an ‘eat the kitchen’ low, they do know what it is like to be spectator to it all and I know that they all wish that I didn’t have to deal with those things – and everything else diabetes has to offer.

And the photo at the top shows just some of my friends with diabetes. As it turns out, this was the first photo on my phone with a group of diabetes friends, and these fab people are just a tiny number who also make up #MyDiabetesFamily; I am lucky to say that there are so, so many more.

These are the people whose islet cells are as absent as my own; these are the people who ‘get it’; these are the people who intrinsically understand what diabetes feels like – even if each of us have different experiences, and we use different words to explain it, and come from and with different perspectives. These are the ‘us’ in #NothingAboutUsWithoutUs; they are the ‘tribe’ in ‘Find your tribe, and love them hard’.

And in the middle? Well, that would be me. Because I am the one who is so grateful to have them all there as part of my life, helping and supporting me.

Want to get involved and celebrate your own diabetes family?

Have a look at the Diabetes Australia Facebook page (click on the image below to be taken there) to find out how.

DISCLOSURE (because they matter and I always disclose. ALWAYS.)

I work at Diabetes Australia, and had some involvement in the development of this campaign. I am writing about the campaign because I think it is a truly important one – not because I was asked to by any Diabetes Australia staff. Plus – I’ll take any opportunity to highlight the folks who make living with diabetes easier!

‘When I hear from and read about you and other adults like you with diabetes, you make me think everything will be okay.’

This comment was made to me recently – and not for the first time. I have heard this more times than I care to remember (directed to me as well as to others with diabetes) from others (often newly diagnosed) with diabetes, as well as loved ones of people with diabetes.

While I believe that it is often said as something that is meant to be complimentary, it has become one of the comments I absolutely dread hearing. It’s not a new thing – I have heard people say things like this and similar for as long as I have had diabetes. And I know that I have, in the past, said things like this too – especially around Kellion medal time each year when I get to meet with PWD who have lived with diabetes for far more years than me.

But in recent times, I have stopped saying it, following a conversation with someone who received a Kellion medal this year and read my post about the ceremony. ‘I have nothing to teach you,’ they said to me, as we were chatting. ‘All I do is live with diabetes. I don’t have a choice. It’s not remarkable. It’s just my life. And I get annoyed at people who want to give me a medal for simply living with diabetes.’ We both then giggled at their choice of words because we were, of course, actually speaking about (Kellion) medals, but I think I understood what they were saying.

And it got me thinking to how we speak about others living with diabetes and other health conditions, and what we are saying when we start to use words like ‘inspirational’, ‘brave’, ‘amazing’, ‘incredible’, ‘magical’, ‘motivating’, ‘heroic’ and all the other syrupy superlatives you can imagine.

I have used every single one of those words at some point when talking about other PWD. And people have used these words when talking about me, and I can tell you all I feel is uncomfortable and like an absolute fraud. I’m none of those things. I’m a bumbling mess most days. So it doesn’t sit well at all if the only reason that someone is using hyperboles to describe me is because of diabetes.

And then when someone goes a step further and starts to say a PWD make them feel better about themselves, their situation, or their (or their kid’s) future, that’s just placing a whole lot more expectations on the shoulders of that person with PWD. Or, when someone says that they want to learn from us, suddenly on top  of everything else, we also have to be teachers? More weight on an already extremely heavy situation.

Of course, there is a darker side to this. Not always are we seen as beacons of inspiration. In fact, sometimes, people want to hold us up as examples of ‘what not to do’. I cringe every time I hear the suggestion that newly diagnosed PWD should meet someone with diabetes-related complications as a warning of what can go wrong. Absolutely no better is the idea that rather than underlining diabetes-complications as a threat, it’s a good idea to look at PWD living with complications as examples of proof that life goes. I’m pretty sure that’s not what anyone is thinking when they get up in the morning and go about living their life with that complication.

Suddenly, alongside the responsibility of doing diabetes and all that comes with it, (complications or no complications) we are also now responsible for making others feel better and more knowledgeable about their own situation? That just seems like another task to add to the endless demands diabetes already places on us.

And it also seems a little unfair.

It’s true – there are days that some of us may be brave; we may be seen as inspiring; we may amaze you. Some days it may even be me who seems to be some of those things. But not if the only reason you see us like that is because we are living with diabetes. Last Friday the fact that I got up and out the door and to the airport before 6am in matching shoes, stockings, lipstick within my lip line, and a pencil dress that wasn’t wrinkled is actually quite remarkable, and I would be grateful for someone to acknowledge that. Oh, and a couple of weeks ago, there was a spider the size of a saucer on the ceiling of our bedroom and I more than capably dealt with it. You may call me brave for that, because: Australian wildlife. But nothing to do with diabetes.

We are people with diabetes and we do what we can to manage that however possible. We are not here to make other people feel better about their own lives, or allay concerns they have about their loved ones with diabetes. We’re not here to be a teaching moment. An equally, we’re not here to be a cautionary tale. We are just here to muddle through with the lives we have; lives that contain diabetes.

I have always loved this song.

Yesterday, I caught up with a friend I’ve known for a number of years. Monique and I are diabetes twins, diagnosed within days of each other twenty years ago. (She suggested that we start to plan for a joint 21st next year – an idea that I immediately jumped on and have already been searching for a DJ, light show… and potentially a booze cruise. Aren’t you glad you suggested that, Mon?)

We don’t catch up enough, but when we do, I am always in awe of her. She is one of the most dynamic women I know. Years ago, she founded and ran HypoActive – a peer group for people with type 1 diabetes. She was a member of Team Type 1 (a cycling team made up exclusively of people with type1) and competed in the winning Race Across America team.

She has held a number of board positions, and has worked tirelessly to promote women in sport.

On top of all this she is raising two daughters to be the leaders of the future (her kid dressed as Emmeline Pankhurst for book week this year!).

While our interests (obviously) may not mirror each other, I am constantly astounded by her commitment to the causes she supports, because she does so with the sort of no-nonsense, tell-it-like-it-is attitude that made her a world-class cyclist.

One of the (many) things we spoke about yesterday was parenting kids and encouraging their independence. Unsurprisingly, Monique’s girls are keen bike riders and this is their preferred mode of transport around their neighbourhood. When Mon’s older daughter started to ride to school on her own, some other local parents weren’t quite so comfortable with the display of independence and made their dissatisfaction known. (You can read Monique’s account of this experience here.)

I spoke about how my kid gets to school (less inclined to get on a bike, more inclined to get on a tram and try to not get stepped on as she has her nose in a book and ignores everyone). I mentioned how I thought that when she started at her new school I’d be driving her most days, but she decided after day one that she wanted to get on the tram with her friends, letting me know loud and clear that her independence was not to be stifled by a mum wanting company on the morning commute.

Teaching our kids independence is a double edged sword for us parents. Of course we know intrinsically that it is important; but we also want to somehow coddle them and protect them from all the real and imaginary threats that are often far larger in our own minds than in reality.

But actually, the two aren’t necessarily at odds with each other. In fact, when we teach our kids independence and allow them freedom, we are actually making great efforts to keep them safe.

It’s not always easy to join those dots, but surely if we are confident with the way that we are parenting, and trust the rules, guidelines and instructions we put in place, we should be able to see how we’ve done everything we can to keep our kids out of harm’s way.

Sure – critics of this thinking may say that it’s not our kids we should be worried about, it’s others who may do them harm. But these worries should be part of the conversations we have in our endeavours to develop their independence.

If we trust ourselves and the job we’ve done, we should feel confident to step back and trust our kids to safely take on more and more responsibility, even if letting go and relinquishing some control can be difficult.

Monique and I then spoke about these same principles in terms of diabetes (and I’m sure healthcare in general) and how some HCPs struggle with losing control of how people with diabetes manage their own diabetes.

In the same way that we need to trust and have confidence our parenting, HCPs need to trust their education efforts, feeling confident that they have set out the principles of effective diabetes management, and providing PWD with the tools to adapt those principles to suit us and our diabetes in the way that works best.

The way we seek our independence in diabetes is to take what we are taught, and adapt it to work the right way for us – even if, sometimes, that is in direct contrast to the way our HCPs have instructed.

Perhaps that’s the real foundation of the whole idea of being ‘deliberately non-compliant’ in diabetes. Sure, we are going against what we have been told and are doing diabetes in ways that our HCPs might never recommend or even understand, but if the results we see are actually as good or even better than what is expected, then those initial teachings set us on the track for success!

My deliberate non-compliance – the very thing that the HCPs at ADATs last year prickled about – has resulted in my diabetes being the most ‘compliant’ it ever has…and, (even more importantly), me feeling better about diabetes than I ever have.

I am fully aware that a big part of my ability to go off label is because I was shown and taught the principles of diabetes by some great HCPs.  To me, this is the perfect marriage of theory and practise. The theory I have been taught has allowed me to break the rules and create ways to practically manage my diabetes that work for me. Independently.

Dinner at our place, (a few years ago now). Kerri, me, Bastian, Kyle and Monique.

Last week, I spent a busy week at Australasian Diabetes Congress. I spent a lot of time with work colleagues, health professionals, the event organisers and researchers.

And I was fortunate because most of the time, I was around at least one of my peers. Between the #DAPeoplesVoice team, (Mel, Frank and David), other diabetes friends from home, (Ash, Kim, Gordon and Cheryl), and away (Grumps), there was always someone nearby who I could rely on to ‘get’ diabetes. (This is important always, but conferences have their own special challenges where diabetes mates are certainly appreciated to help keep some perspective!)

I have written countless times before about the power of peer support. I have also written that my peers have been the ones to have truly helped me through some of the most difficult diabetes situations I’ve faced – not necessarily with advice, but simply a knowing look, a nod of the head, or the words ‘me too’. Our peers help us make sense of what we are dealing with, provide us with endless support and help make us feel connected to others. And that’s important with a condition such as diabetes, because it is all too easy to feel that we are on our own.

Which is why I was so pleased to learn about ConnecT1ons, a new initiative from Diabetes Vic, which is looking to provide that support to another group within the diabetes world – parents of kids with diabetes.

It is undeniable that parents of children living with diabetes have their own brand of challenges. This was brought home to me again last week during the Diabetes and Schools Forum when parent of three children with type 1 diabetes, Shannon Macpherson, spoke about some of the difficulties she and her family have faced with her children in the school setting.

And again this morning, when I was speaking with a parent who is having a very tough time with her young, kindergarten-aged child. ‘Renza,’ she said to me, as she explained what was going on. ‘You have no idea. Having a child with diabetes is impossible because we cannot be with them when they probably need us the most.’  She’s right – I have no idea.

But other parents of children with diabetes would and do understand. And as they shared their empathy, they would also probably share some of the things they’ve done to help them through similar tricky situations.

Diabetes Victoria is looking to bring parents like this together for an event where they can meet other parents of children with diabetes. Plus, it’s a few days of respite from looking after their child with diabetes, while knowing their kid is safe (and having an absolute ball) at diabetes camp. What a brilliant idea all ‘round!

You can watch a video explaining the project here, and  hear from Jade, the mum of a young boy with diabetes share some of her experiences – and how parents just like her will benefit from ConnecT1ions.

As is always the case, finding funds for initiatives like this is a struggle, so today, Diabetes Victoria launched a crown funding campaign and is seeking to raise $15,000 to run ConnecT1ons. If more is raised, they can run additional events. The crowd funding is only open for a week, so please do consider making a donation – and doing it now! Click here to be taken to the Pozible page.

Congratulations to Diabetes Victoria for acknowledging that parents of kids with diabetes are a specific group that need support amongst their own peers. Extra huge congrats to Kim Henshaw who has spearheaded this project as part of her role as Children and Families Coordinator.

Please do donate. I returned home last week after spending time with my peers feeling refreshed, energised and connected. Parents of kids with diabetes deserve to feel the same by spending time with each other.

Not a functioning beta cell amongst us.

Disclosure

None! I was sent information about ConnecT1ons from the Communications Manager at Diabetes Victoria last week, but she did not ask me to write about it. I don’t work for Diabetes Victoria (I left there back in Jan 2016) and have had nothing to do with this new initiative. But you have to admit it’s a good one. Hence, this post.

It takes effort to look at diabetes in a positive light. And sometimes, we need other people to shine that light for us. My husband changed a negative thought I had about an aspect of diabetes with one comment. And to this day, something that once filled me with sadness and dread, now makes me feel grateful and fortunate. 

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Living well with diabetes. That’s how I like people to think of me. And how I like to think of myself.

But there are occasions – rarely, although sometimes more frequent – where I do feel living with a life-long health condition that is there every minute of every day start to creep over me and a sense of dread and worry plant themselves at the back of my mind. For me, this is part of diabetes burnout. It’s a feeling of being overwhelmed by what diabetes is right now but even more, what diabetes could be in the future. How will my faulty pancreas and my autoimmune problems play out in my life?

And is there any point worrying? At the moment, things seem to be tracking along well. Annual complications screenings tell me that I am doing okay and I’ve read some research that shows people with diabetes are living longer and longer.

So why the dread and anxiety and is there any point? And even more, is it possible to change the way that we think about diabetes?

When I was first diagnosed, the smell of insulin would fill me with dismay. The very scent would remind me of the horrid, scary photos the doctor showed me within the hours of being told I have type 1 diabetes. An invisible force would reshape me from the vibrant 24-year-old I was at the time to a withdrawn, sick, shell of the person I really was. For months I felt this way and every time I gave myself a shot, it was like I was slowly drowning.

But that all changed one day. I drew up two units to squirt through the air before jabbing myself and said ‘Urgh. I hate the smell of insulin. It’s everywhere – I feel like it’s what I smell of now.’ Aaron who was sitting next to me looked up and said simply and matter-of-factly, ‘I don’t hate it. It’s the smell that keeps you alive.’

And just like that, the smell of insulin went from being a death sentence to life saving. It never bothered me again. Keeping the perspective of diabetes in its rightful place is not easy and there will always be times that we feel like it is heading in the wrong direction. We just need to find ways – and people – to say things to help us get back on track.

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