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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. 

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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.

This is an edited reblog (with a few new bits!) of a post from the old, now defunct, WordPress version of the Diabetes Victoria blog. I may live with diabetes and diabetes may live inside me. But I don’t do diabetes alone and I have always been emphatic about acknowledging the support I am fortunate to have. I couldn’t live with diabetes as well as I do without the people living in the village around me. 

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I have type 1 diabetes… And the people I know with type 1 diabetes – in fact, all types of diabetes – who appear to manage best, do so with the support of many people, a veritable village made up of loved ones, friends, colleagues, extended families, health professionals. And the odd village idiot.

I have type 1 diabetes. Although my husband doesn’t, he knows a terrible lot about it. I’ve never seen anyone fly across a room to grab a jar of jelly beans the way he does when he sees that glazed look come over me. Or when I start to giggle uncontrollably for no apparent reason. Or when I begin to tear up for no apparent reason. Or when I start to act irrationally (he would perhaps suggest more irrationally) for no apparent reason. Aaron not only identifies when I am hypo before my meter has told me, he can also interpret my different hypo personalities, of which there are many. This, quite frankly, makes him brilliant. But the most wonderful thing Aaron does for me and my diabetes is that he recognises how crap it is sometimes. I love how he has learnt that trying to ‘fix’ a diabetes situation isn’t what I need; instead a nod of his head, a hug and the words ‘Diabetes sucks’ will more than suffice.

I have type 1 diabetes. Although my daughter may not, she understands just how it impacts on me. From when she was tiny to now, she has come to know that diabetes does impact on me at times and that will affect her. But she has never complained. Her advocacy efforts make me proud and pain me in equal measure, because diabetes has become her cause in may ways when I really wish it hadn’t.

I have type 1 diabetes. Although my endocrinologist may not, she has an uncanny ability to pinpoint the exact information I am looking for (often before I’ve asked). She knows about the dark side of diabetes and offers help working through it. And she listens, listens, listens.

I have type 1 diabetes. Although most of my friends don’t, (even though I seem to have a statistically significant number of friends with diabetes), they know that diabetes sometimes really pisses me off and that the way to offer help is not with unsolicited advice. However an offer to meet me for coffee, prosecco or chat or walk where I can vent about diabetes – or ignore it – will always be met with gratitude.  And those friends who do share my pancreatically-challenged existence offer support, humour, understanding – often without words.

I have type 1 diabetes and my parents don’t. My mother also lives with a life-long condition and although it’s different to mine, we have an unspoken understanding of the boredom and sheer frustration of such an imposition in our lives. And when she sees that I am going through a difficult period, she helps – but never, ever makes it about her. I was diagnosed as an adult, so my parents were never responsible for making diabetes decisions for me. But I know that they walk alongside me, keenly feeling my frustrations and anger, as well as the moments I celebrate. I’ve come to learn that’s what parents do for their kids – even when their kids are in their 40s.

It takes a village to raise a child and it takes a village to deal with diabetes.  When we try to do it all on our own, it can be overwhelming.  My village supports me, assists me, and reminds me that they are there to help. Not only in the times things are becoming too hard, but also in the times when everything is going well. They are part of the reason that the good times happen. They didn’t choose to live in this village and they could have moved anytime they wanted. But they haven’t. I don’t think they will never know how grateful I am to them, but I will try to tell them and explain how important they are.

Of course, the village idiots will always feature – those who think they found a cure in herbs they picked up in their recent travels. Or those who think that the best way to deal with me having diabetes is to pity me. But the village idiots can be a source of humour too, (see here). And laughing is important, so in their own little way, the village idiot is helping and I say thanks to them, too!

Every second Saturday morning, I can be found at my favourite café having a very important date. Aaron has a rehearsal at that time each fortnight, so it’s become habit for me and the kidlet to traipse to the café for coffee, breakfast and a chat. (Judge me all you like – I gave in to the thirteen year old after a coordinated campaign from a number of people, including one of the owners of this café and the kidlet’s grandparents. Apparently it’s a birthright of kids with Italian heritage to be provided with legal stimulants from when they are children. At least, that’s the story they sold me…while they reminded me that I was drinking the dregs from my dad’s evening espresso before I could talk. Anyway, the outcome of their campaign is the kidlet sits there with her latte feeling all grown up while I silently remind myself caffeine is not crack in an effort to not feel like a completely negligent mother. But I digress…)

The kidlet and I spend quite a bit of time alone together. I often drive her to school or collect her afterwards, as her school is halfway between home and work. And we have a lot of evenings together while Aaron is playing a gig somewhere around town. But those car trips are rushed and usually involve checking off what is happening that day/homework requirements after school and those nights at home usually see us snuggled in front of the TV watching a favourite movie. I love these times, but they’re not really built for detailed conversations.

Our Saturday mornings are leisurely and free of screens. Other than greeting the staff at the café (one who has appointed herself as the kidlet’s ‘other mother’ – something our daughter is more than happy to endorse, because Jo is far cooler and more fun than me!) and said hi to the other regulars, we sit down and focus just on each other.

It is these Saturday morning catch ups that are the most revealing, and provide me with great insight into what ‘s going on in her life. With no need to rush and the comfort of being somewhere safe, she shares things that just wouldn’t be shared in the rushed car trip to school in the morning.

My job on these dates is simple. Listen. Nod my head so she knows that I am paying attention. Don’t impose my ideas on to her. Try not to be shocked when she says anything I wasn’t expecting. And when she asks questions, I try to frame my answers in a way that hopefully helps her feel supported and encouraged to make her own decisions, rather than trying to foist my own onto her.

A few weeks ago when I was seeing my endo, I realised that she takes the same approach with me that I do with the kidlet. I always feel that I have her complete and utter attention and I never feel judged by her. While she may want to just tell me what to do and have me follow it to the letter, she doesn’t do that. When I ask questions, she helps guide me to an answer that I feel comfortable with.

I really believe that my endo’s style has meant that I am far more confident about the diabetes decisions I make each day. Knowing that I have been able to troubleshoot, or make a choice after weighing up all the options gives me conviction and assurance that my decision-making skills are sound, all the time knowing that she is there if I need to ask something.

I am sure it’s no accident that I am this way with my kid. I’ve seen how effective it is in helping me do better with diabetes…and it’s certainly translatable to parenting a teen!

Recently when I was preparing a talk for practise nurses about the way for both HCPs and PWD to get the most out of healthcare appointments, I came across this:

Listening doesn’t seem to come easily or naturally to a lot of us. We want to jump in and interrupt. We want to offer our suggestions (because of course we know best!). We want the person to listen to us and do what we say. And we want to fix things. We so want to fix things!

But the best thing we can do in a lot of cases is to just shut up. I frequently employ the WAIT (WhyAm Talking?) approach as I have found it is the best way to truly gauge what is going on and find out things that are too easily missed.

Those Saturday morning catch ups are illuminating for me. As well as seeing how my daughter is dealing with the sometimes tricky trials and tribulations of teenage-hood, I am being allowed a front row seat to a lot of what is going on in her life – things I may otherwise miss. Most of the time these days, she doesn’t need me to tell her what to do as she is working out stuff. She needs to feel safe, comfortable and not judged as she bounces her ideas off me; and to be given the space to learn how to weigh up options, make errors in judgement and work out what is best for her.

And that sometimes, making a decision that isn’t necessarily the best may not be the worst thing in the world. (At least – that’s what I’m telling myself when I see the look on her face as she takes her first sip of coffee for the day, and I know I have been complicit in her teenage caffeine addiction…)

I may have mentioned before that I use an app called Timehop. It cleverly collects photos and posts from Facebook, Instagram, Twitter and other social media platforms, and serves them up to me as an account of what I was up to on this day over the last ten or so years.

Mostly, Timehop is a source of great joy. It shows photos of lovely family and friends moments, exciting things happening at work and our travels. Or it shares tweets that make no sense in isolation, but if I click on link, am taken back to long-forgotten discussions that made complete sense at the time. It’s fun and each day, makes me smile a I remember some pretty great moments.

But around this time each year, I am reminded of what was going on a the end of July 2013. And I don’t smile fondly. Because it remains one of the most difficult times of my life, and remembering it so clearly stirs up a lot of sadness.

This time five years ago, I had miscarried a much-wanted baby. The miscarriage (and D & C) happened while we were on holidays in New York, but I needed another surgery once I returned home.

Had the pregnancy gone to plan, there would be a little four year old in our life. I can’t really imagine it, to be honest. I think of everything that has happened since July 2013 and wonder how different life would be today if there was a little one running around. We’d be thinking about a school start in the new year and all that comes with it.

But, life doesn’t always go to plan. This particular derailment can’t really be explained – it was just one of those things. Twenty years of diabetes has taught me that there will be occasions where I will face curve balls. Sometimes over and over again. But even with the understanding that diabetes brings about expecting the unexpected, there is little solace in dealing with pregnancy loss.

It’s five years ago now. It feels as though a lifetime has passed. And at the same time, it feels no more than a baby’s heartbeat ago.

I like to celebrate anniversaries. Diaversaries are given the fanfare they deserve around our place, with high fives and pats on the back as another year of dealing with diabetes is ticked off an imaginary calendar.

This anniversary doesn’t get celebrated. But it does get acknowledged.  This week, I’ve been imagining four year olds who remind me of our darling girl when she was a cheeky four year old. But I know this one would have had a personality all of its own, and been a force to reckon with in different ways. And I am thinking about what life would like with two kids, and how our daughter would have adjusted having a younger sibling following her around. I wonder how our house would breathe differently, reflecting a little one’s existing, picture books that have been put up on high shelves once again scattered around the floor.

These thoughts do make me smile.

But my smile when I think of these things is not a happy smile. It is a smile of regret, loss and grief.

I will buy some white flowers for the kitchen table today, and watch them as they bloom. And remember. Remember the time when I thought that we would be bringing home the baby growing inside me to add to – and complete – our little family. And how sad I am that we never did get to meet.

A few years ago, I wrote this piece about why I am uncomfortable with the term ‘carer’. (I’m sharing it again below.) I often think about the word around Kellion Medal time, because there is a certificate given to ‘carers’ of medallists.

This is a lovely part of the ceremony, and acknowledges that diabetes can indeed take a village. Usually, the ‘carer’ is the partner of the person receiving the medal. Sometimes, it is a parent, sibling or other close relative. Other times, it is a healthcare professional.

Carer is a word with a broad meaning. It encompasses a wide range of situations and responsibilities.

As I said in the original blog post, I don’t believe that I have a carer. Aaron certainly supports all my efforts with my diabetes, is a wonderful cheer squad and knows when to mutter ‘Diabetes Sucks’ when I am feeling a little over the whole thing. I feel very fortunate to have him do that.

But carer? Nope.

It got me thinking to what I would want if (when?) I stand up to receive my Kellion medal. In thirty years’ time, I hope to proudly stand up there and appreciatively receive my medal. And in the room, I would want those near and dear to me, celebrating the milestone. I would certainly want to thank them for having lived alongside me as I lived with diabetes for so long.

But the word carer does not really adequately describe that role. And yet, I don’t know the word that does – or even if there is a word…

Words matter – so what is the right word?

So, please help me out! If you are an adult with diabetes, do you have a word you use to describe the people who support you? Are you comfortable using the word carer? Do you prefer to use something else? Or nothing at all? (Fifth option: Never even thought of it. Get over yourself with your language palaver, Renza!) 

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I am lucky when it comes to my diabetes support network. I know this and I will say it several times in this post. I also know that I am likely to come off as being ungrateful which is not the case at all. Today, I want to explore the idea of how these support people are identified, either by themselves or by people living with diabetes. Specifically, I want to talk about the term carer.

The Oxford Online Dictionary defines carer as:

a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.

I don’t have a carer. I am the person responsible for living with my diabetes, but I do not have a disability and I certainly don’t consider myself sick. And, although I’m pushing a ‘significant age’ I am not yet elderly.

I understand and completely believe that there are people who are really and truly carers. There are people who are responsible for feeding, toileting, bathing, communicating for another who is unable to do it themselves. I am not referring to instances like this. I am referring to, I guess, diabetes.

I don’t consider my husband, who is involved in my life with diabetes to be my carer. He’s my husband, my partner.

Living with diabetes is not a solo game for most and this is a truly wonderful thing. We get support and help from people and I for one feel very fortunate to know that I have people (family, friends, healthcare professionals), I can rely on if I need them.

But I don’t consider any of them my carer. I would refer to them as my support network. In the case of my HCPs, they’re paid to help me with the things I need.

My husband would never say that ‘we’ are a family with diabetes. He would say that I (his wife) have diabetes. Not for one moment would he consider himself to be living with this condition even though he regularly is part of it. But as far as ‘ownership’ goes, it’s mine. He will step up as much or as little as I ask and in the few times it’s been necessary, he’s taken over, done what’s needed to be done and then, when safe, stepped back.

My independence and confidence in my ability to self-manage comes from being given the space from those around me to do what it is I need to do. I know there have been times when Aaron would like to sit me down and force feed me glucose because he can see that I am low. As I stand at the open fridge and in my hypo-fog state try to calculate the carbs in a cucumber (yes, I know!) he has had to just step back and let me work it out myself, stepping in if asked.

I see this like watching my daughter do something in a way that is frustrating to me. I would love to jump in, show her how to do it far more effectively (or do it myself) and then move on. But her self-confidence and her ability to trust her decision making process needs to be encouraged, not overshadowed by a parent who insists on taking over all the time which suggests that she cannot do anything herself.

To me, the term carer implies helplessness. I get that diabetes is a lifelong condition and that there are stages in a person’s life when they may need extra care. For example, children with diabetes are reliant on their parents for the day-to-day management tasks. But is that being a carer or is that called parenting albeit with an incredibly extra degree of difficulty? Or what about an adult with diabetes who is having a period of hypo unawareness and their partner is required to, at times, inject them with glucagon? Is this being a carer or is this just doing what partners do – look after each other at a time of illness or need?

What about when I am lying in bed, unable to move because my BGL is high, I have mild ketones and am vomiting? As I decide whether or not I need to take myself off to A&E, my husband is holding a bucket in one hand and my hair in the other.  I don’t consider him to be my carer, any more than I considered myself to be his carer when he hurt his back and I was warming up a heat pack and giving him pain killers every four hours.

I don’t in any way want to undermine the importance, help or value of the support I receive. I don’t for a minute want to say that I don’t need it or resent it. But equally, I don’t want to be considered as being helpless. The relationships I have with people where diabetes is sometimes considered are based on incredible respect – from both parties. They respect that I am the one who is living with this and dealing with it and I respect the way they allow me to do that.

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Thanks to Ash for chatting with me over coffee about this today

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