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Trawling Instagram today, this jumped out at me:

Click to be taken to @Papelito.Studio on Instagram

This is a fact. No correspondence will be entered into. It doesn’t matter if you like it some other way. There is no ‘But I like it with parsley’ or ‘I substituted chicken for the guanciale’, or ‘It tastes better with cream’. Because no. No, it does not. Or, if you believe it does, that’s fine, but what you have cooked is not carbonara. You’ve made up something different. Enjoy. Just don’t call it carbonara. 

Italians are very strict with their food rules. Which is hysterical, because in my experience (from, you know, my own family), Italians generally don’t really like rules all that much. I remember hearing about a time when there was a lucrative cottage industry in Italy of tee-shirts with diagonal black lines across the front for people to wear instead of buckling up when seatbelts became mandatory. I am, in equal measure, amused, astonished and appalled at the audacity of it all (and alliterative too). 

Anyway, back to carbonara. The ingredients for the recipe are not open to negotiation. If you want to make it for dinner tonight, you need eggs, guanciale, pecorino, black pepper and bucatini. È tutto!

Thank fuck diabetes isn’t that rigid!

I break rules, ignore rules and make up rules all the live-long day. Because that’s how I do it. Diabetes is an opinion. Work out yours, change it as you like, add different things, or change change them out. And go for it. And don’t let anyone – even loud, passionate Italians – tell you otherwise. 


Totally irrelevant postscript of my favourite ever story of Italians breaking rules (which, by the way, I think would make a brilliant series)

Years ago, while in a very long queue at the Santa Maria de Monserrat monastery, Aaron and I got chatting to a nonna-aged Italian woman. After five minutes, she’d had enough, announced that Italians don’t queue and pushed her way to the front, ignoring the stern rules that were clear to everyone else. She returned ten minutes later to tell us the statue was a gorgeous sight, and that we were stupid for not following her. Two hours later, while still diligently lining up, we realised she was right. 

There have been a number of times here on this blog and in other online platforms that I have been critical about the low carb community. Actually, let me be more specific. I have been critical of the response from certain corners of that community, particularly the corners that are free with their fat shaming, and accusing people with diabetes who choose not to eat low carb as not caring about their health, and attacking others for daring to suggest that there could possibly be more than one way to eat. This has come from a long list of incidents I’ve either seen or have been involved in, such as the time I was fat shamed for saying that intermittent fasting is great for some, but not for everyone, and the time that people in the LC community got angry at the idea of saving the lives of children with diabetes from developing countries

I guess I shouldn’t have been surprised really at what happened earlier this week just before I published a post on diabetes and menopause. As I often do, I look to the community for others’ experiences. And so, I tweeted (and shared on Facebook) this:

The responses were many and great. One aspect of the generosity of the DOC is the willingness and openness to share not only experiences, but to offer tips and tricks for what has worked for them. I’ve always found that so amazing, especially when addressing issues that are considered a little taboo. Menopause is one of those issues. But even so, there were so many replies from people who have either gone through menopause, or started to think about it. 

And then, out of the blue, came a reply from a nutritionist. A nutritionist I have never encountered before. I don’t follow him on Twitter, I have no idea who he is. Which is all fine. My Twitter is public and if I ask a question everyone is free to offer their input. Here is his reply:

I replied that I am not a healthcare professional. And then came this:

Followed by this from me:

(I’m not going to share anymore of the tweets in what turned out to be a rather long back and forward thread, but if you click on any of the tweets above you will be able to find the whole mess.)

He kept going, demanding to know why I am critical of low carb diets and health professionals who promote them (which he apparently had deduced from reading through my Twitter feed). I’m not. Which is what I repeatedly tweeted to him in responses to his continued demands that I explain my stance on diets and diabetes, and, as a healthcare professional, I must stop giving ‘personality-driven healthcare advice’. I reminded him that, a) I am not a HCP (which I had already stated), and, b) I share my experiences, not give advice. He helpfully suggested that my blog posts read that way. 

I had asked about menopause. I asked people with diabetes who had either been through menopause, were going through it now, or thinking about going through it. I asked whether it had been a topic of conversation with their HCPs. 

This bloke – who doesn’t have diabetes and has never experienced menopause – had nothing to offer, other than attacking me for my choices. And my choice is that I believe in choice. 

It’s not okay for a healthcare professional to enter into a discussion with a person with diabetes seeking peer support, and telling them what it is that they do and don’t do in that community. I am so over this sort of paternalism in healthcare. I’m over HCPs bullying their way into our community and trying to shape it into what they want. 

I’d also add that a man hijacking a conversation started by a woman about menopause is pretty shitty behaviour. I’m also over misogyny and the way male healthcare professionals centre themselves in discussions that are not about them. It happens all the time. It happened on Monday.

A tweet about menopause. And not even about food and menopause! It sounds somewhat ridiculous really. I don’t look for this sort of reaction, and I certainly have never baited anyone from the LC community. I don’t post photos of high carb meals accompanied by a ‘dare you to say something’ comment. (But I should say, that even if people are doing that, there is still no valid reason to criticise what another person is eating** or criticise the way they choose to eat.)

I understand that there will always be difficult people in any community. Unfortunately, it is people like this who are often the most seen from the LC community. And it’s why I am critical. But be clear – I am not critical for the advice they are giving, or the eating plan they are following. I am critical of, and will continue to call out, this sort of behaviour. 

**Okay, I know that I said that there is no valid reason to criticise what another person is eating. But I am adding a caveat to that because I do (and probably will continue to) criticise anyone who wants to drink flavoured coffee. Or instant coffee. Or coffee from a bag. I fully acknowledge and accept my status as a Melbourne coffee snob and will not be entering into any discussions that caramel, pumpkin spice or unicorn flavourings are okay. They are not. Don’t @ me.

Imagine if the only emotion we felt when we ate something was joy. How different that would be.

A more detailed post about language a food can be found here.

I wrote this piece six years ago today when one of the most well-known, and one of my whole family’s long-time favourites – turned 28. Today, Marios is still going strong and has hit thirty-four years of operation. We are still frequent visitors to this cafe. It has become our kid’s choice for weekend brunch – she and I have a standing date their every second Saturday when Aaron is at a rehearsal. And at least one weekend day will see the three of us eating together. And drinking coffee. Yes, Marios is where my kid together with one of the cafe’s namesakes, ganged up on me and broke my ‘no coffee until you are eighteen’ rule, and started drinking coffee when she was just a teenager. 

Marios at home.

During this time of COVID-19 we have been desperately missing Marios. Even though it’s only ten minutes from where we live, it’s outside the zone of where we have comfortably been travelling for our daily caffeine hits.  But last weekend, we decided we needed a meal of pasta from there – the ultimate in comfort food – so called in an order and went to pick it up. I teared up as I walked into the cafe and was greeted by the gorgeous staff. It had been six weeks since I had last walked in that door and I can’t remember another time (unless travelling) where I have gone that long without paying them a visit. 

As have many other small business, Marios has adapted to the new rules about dining. Takeaway and delivery is available, and they have turned the front of the store into a provedore with tables of dried and fresh (made in house) pasta, sauces, jams, coffee and fresh fruit and veggies. I loaded up a bag with the pantry staples as I chatted with the staff waiting for my pasta to be ready. 

Marios will always – always – have a special place in our heart. And will be back as soon as this is over, making up for lost time. But until then, we’ll get takeaway and support them as we can. I’m sharing this post today (with a couple of edits) because it feels the only thing to do. 

With one of the Marios a couple of weeks ago when I picked up dinner.


Today, my all-time favourite café turns 28 34 years old. Marios café (named for its two owners, Mario Maccarone and Mario De Pasquale, hence no apostrophe) is celebrating its birthday and remains the ultimate in Melbourne café culture. It’s unapologetic (still doesn’t serve skim milk, although did succumb a couple of years ago and started to offer soy) and reliable (never had a bad coffee!).

I’ve been going to Marios for pretty much all of its 28 34 years – first with my parents and then with friends. Once I left school, meeting up with people at Marios was the epitome of cool! Great jazz on the stereo, a gorgeous changing art display showcasing local talent, and the best coffee in Melbourne. Plus tablecloths on the tables, smartly dressed waiters and breakfast served all day. There have been many times that I’ve ordered scrambled eggs or a blueberry bagel at 10pm!

Back in my uni days, it was the location for many first dates and I could always tell if there would be a second date by whether or not the guy knew of Marios when I suggested we meet there. Aaron and I had our first date there, eating cheesecake late at night after seeing a movie. He knew about Marios; there was a second date! In any relationship break up in the division of cafes and pubs and places we’d hung out, I always got Marios!

Marios is where I take overseas friends when I want them to have a truly Melbourne café experience. DOC friends from home and abroad have been taken there and just a couple months ago, a group of us got together to catch up. It’s where I meet up with friends who have moved overseas when they come home for a visit. My beautiful friend Shannon who moved from Melbourne to Hong Kong and then the UK over 15 years ago and I have a standing date any time she’s in town so she can get a fix of Marios lasagne! Recently, I caught up with a long-lost friend and there was no doubt about where we would meet.

There have been many memorable visits to Marios including the night before my daughter was born, where I checked my watch every ten minutes, counting down until the time I would meet her. The day we brought her home from hospital, we took a pit stop to Marios to show her off to the waiters and introduce her to the place she would be spending a lot of time.

I’ve laughed, cried, and had some of the most serious conversations of my life in Marios. I’ve said goodbye to friends and welcomed them back into my life. I’ve met up with people for difficult, heartbreaking chats because it’s always felt safe.

I can still remember my first trip to Marios after I was diagnosed with diabetes. It was only a week or two later and it was the first time I was eating out. It was where I did my first ‘public injection’ and I can remember my heart racing as I pulled my insulin pen out of my bag and tried to jab my stomach secretly. I was sure everyone was watching me, judging me, waiting to jump on me and tell me to put it away. No one noticed and if they did, said nothing. I searched the menu for food that the ridiculously old-school dietitian I had seen would approve of and I wondered if it would be okay for me have chocolate sprinkled on top of my cappuccino. I fought back tears as I asked the waiter for sugar substitute and then explained why I was asking. My coffee was on the house that day.

Now, I don’t hide away my BGL checks or pulling my pump out from under my clothes when I am out, and it was at Marios that I realised that I had nothing to be ashamed about when it came to ‘public displays of diabetes’. Marios normalised eating out with diabetes – the new reality of my life.

I felt safe there. I knew I would not be questioned. I knew that I would still be the old me there and Marios would never change. It felt like it always did. It felt like home.

Shortbread with Smarties. (Time lapse at end of post.)

Every Sunday, I spend an hour or so doing one of my favourite things. I bake cookies, cakes, brownies or anything else that takes my fancy. I make a time lapse video of it and then share it to my Instagram and Facebook, along with some photos of the delicious finished product and the hashtag #AndOnSundaysWeBake. My friends and family frequently comment on my creations. Some ask for recipes; some ask if they can have some delivered to them; some are perplexed as to why I feel the need to add veggies to my cakes. (The answer is THIS ZUCCHINI BREAD RECIPE!!!!)

The other day, someone who had just started following me on Instagram asked me if these baked goods are my guilty pleasure.

‘Of course not,’ I said to them shaking my head. ‘Why should I feel guilty?’

‘Because they have sugar in them. And butter. Lots of carbs and fat. And you have diabetes. I thought you would steer clear of those kinds of foods.’

I sighed and thought that I could explain how as long as I cover the carbs with insulin, I am dealing with the diabetes side of things. And how I try to eat a balanced diet which mostly is made up of freshly cooked meals containing protein, in season vegetables and some carbs. I thought I could point to how I generally follow a low-ish carb diet because that works for me, and that my weekend (and week day too at times!) baking is a fabulous way for me to de-stress, and feel creative. I was going to point to how there is no such thing as a ‘diabetic diet’ and that people with diabetes can eat whatever we want and that it’s kinda not okay to ask us about what we are eating because it’s none of anyone else’s business. I started to tally up what I’d eaten for the day to highlight just how healthful my day’s food had been (so far) and was going to explain how I would be eating sashimi for lunch, and that has no carbs.

But instead, I just said ‘I don’t do guilty when it comes to food. And I try really hard not to do guilty when it comes to diabetes. Suggesting that we should feel guilty or shame when we eat something delicious that we enjoy – whether or not we’ve made it ourselves – just feeds into bullshit diet culture. My moral value has nothing to do with what I put in my mouth, or restricting food groups, or my weight.

‘So, to answer your question: No. What I bake on Sundays is not my guilty pleasure. But I do take great pleasure in baking and sharing the spoils with friends and family. And eating them. Because I am an amazing baker, and they taste absolutely delicious. Pleasure? You bet. Guilty? No fucking way!’

More?

My go to ‘smash diet culture’ SoMe sites are BodyPosiBetes and Feel Good Eating. Follow them for no-nonsense, no bullshit, no-diet-culture brilliance.

The #DOC has brought some brilliant people into my life, and Melissa Lee is one of the most brilliant. I adore her. I adore her humour, her political sass, her intelligence, and she gets me thinking with a lot of the things she shares online. She is SMART, and if there is one thing the world needs right now, it’s more smart people. I first met Melissa when she was leading the Diabetes Hands Foundation, and her compassion and advocacy skills won me over.

She is also extraordinarily talented. She sings like an angel and used to be a singing teacher. Perhaps our shared past-music teacher lives have also drawn us to each other.

Melissa has been doing her #DParodies for a number of years now, taking well-known songs and giving them a diabetes work over. They can be hilarious or sometimes a little heartbreaking. But they are always clever and thought-provoking.

Today, she unleashed a new song. I knew this one was coming; I knew what it was about. And I knew she was going to nail it.

With this parody, Melissa has addressed an issue that is close to my heart: food shaming in the diabetes community. I have written a lot about this, (here, here, here…), most recently here after I was fat shamed following a TV interview I did for work during National Diabetes Week.

I know that not everyone who follows a certain eating plan becomes militant, but I can say with all honesty that the only place where I have seen a coordinated approach to shaming people for choosing to eat a certain food group is from particularly aggressive corners within the LCHF community. Don’t believe me? Start with this tweet. Still don’t believe me? Read the comments on YouTube below Melissa’s video. By the way – the comments are all unoriginal and boring: Suggesting that someone is eating their way to a litany of self-inflicted diabetes complications, or is in the pocket of Big Food for daring to eat a cupcake, or calling someone fat? Tick, tick, tick.

I don’t care what you eat. Really. Your diabetes; your rules. But I do care if you are cruel, stigmatising or just nasty. Melissa is suggesting that people who do those sorts of things calm down. And I couldn’t agree more.

I love working out of the same office as Jane Speight. It means that I have a friend just down the corridor, plus I have this idea that being around her and the ACBRD team makes me smarter. (Admittedly, I am the only one who thinks that.)

Jane may not be quite as excited by the working arrangements, especially on the not rare occasions where I appear at her door and go on some rant that she didn’t ask for. (‘Jane! Have you seen <insert latest thing that is pissing me off>? Let me tell you all my thoughts about it right now.’)

So, the other day, when Jane appeared at my door wanting to talk (rant) about hemp kombucha, I was more than ready to sit back and listen. For a change.

Yes…

Hemp kombucha.

There is a television show on SBS in Australia called Medicine or Myth. I’d never seen it, however I did know that Dr Charlie Teo is one of the hosts. Charlie is a well-known and controversial neurosurgeon. He is joined by GP, Dr Ginni Mansberg and associate professor in immunology, Dr Ashraful Haque. They are the trio directing the show, which sees Aussie pitching home-grown treatments for treating all that ails them.

I had not ever come across the other two hosts before, but a Twitter search showed that Ashraful is interested in host-parasite interactions (and guitars). The first bit made no sense, but I like guitars. Ginni also hosts (the horribly named) Embarrassing Bodies Down Under, and is a ‘passionate anti-aging skincare geek’. I don’t know about you, but I generally don’t go to my GP for advice on how to reduce fine lines and wrinkles, but maybe I’m being narrow-minded.

The episode that screened this week featured John Leith who was diagnosed with type 2 diabetes a couple of years ago. And that brings us to hemp kombucha.

Within about thirty seconds of watching the segment I had already dismissed it as complete and utter rubbish. In fact, the second that John referred to hemp as a ‘superfood’ I rolled my eyes so far back into my head that I almost blacked out.

I then grabbed a piece of paper and started making notes of all the misconceptions about diabetes that were being thrown around. I’m not going to list them all here, because I have more important coffee to drink, but if Ginni Mansberg is your GP, find another one now. Her statement that ‘Poorly controlled diabetes will [….] destroy your feet’ followed by saying that an A1c of under 10% is what ‘diabetics should aim for’ was enough to set me off yelling at the computer screen.

But back to John and his magical mystery kombucha. Apparently, it cured his diabetes. That’s right, after five or six weeks of drinking this glucose busting elixir, his glucose levels were back in range. The three experts – and I am now using this term loosely – were astounded, and to make sure we knew that, made acceptable TV astounded noises. In fact, they were so caught up also making acceptable TV astounded faces that not one of them asked if the corresponding reduction of food portions, increased fresh food or boosted exercise plan could have contributed (i.e. caused) the improved glucose numbers John was seeing.

In fact, John’s claims were enough for this merry band of HCPs to send the hemp kombucha off to trial – another term I am now using very loosely. According to the voice-over person narrating the program in a serious voice, trials are run by an independent scientific team experienced in clinical research who recruit carefully selected participants.

According to the next segment, those carefully selected participants included three people: two with type 2 diabetes and one with ‘pre-diabetes’. They all drank 100ml of hemp kombucha a day and then recorded their BGL on day 1, 3 and 7 of the week-long trial.

I know. Robust.

The results were astonishing. Apparently, blood glucose results came down on average 0.8mmol/l, with 75% of participants (out of a total of 3?) reporting improvement in glucose results.

I have so.many.questions.

We were not told if the participants were doing any else to manage their diabetes. Were they taking medication? Were they on a specific eating plan? Were they exercising? Had any of them lost any weight during that week? Why did the trial (really? trial??) only run a week? Is it reasonable to suggest that three data points is really enough to confirm that a treatment is successful?

I can’t answer any of these because none of this was revealed in the program.

However, it was enough for the hosts to claim that they were excited about this as a treatment for type 2 diabetes.

Let’s just think about that for a moment. This ridiculously shambolic and hopeless experiment was enough for three healthcare professionals to suggest that hemp kombucha is something people with diabetes should consider…and that the scientific community should sit up and pay attention. All this without a glance to the fact that John and his n=1 claims are also associated with a hemp kombucha business, and the least vigorous trial I have ever heard.

You know, this really could work for some people. Complementary therapies do have a place in modern medicine. Many have been studied extensively to see how they can augment science-based treatments. However, before any HCP even thinks about mentioning them, they need to be able to point to some evidence. Three people and three blood glucose checks is not evidence. It’s a twenty-minute segment in a sensationalist crappy television program.

Look, I don’t really want to link to this train wreck of a story, but I think that you need to watch it yourself to appreciate just how ridiculous it is. So here you go. (I’m sorry.) 

Ten years ago, we stumbled across a little out of the way restaurant in a small backstreet of Florence. It was run by a couple and the food was sublime – beautiful Italian dishes served without fanfare, just simple flavours that let the freshness of the food shine through.

So, last month, returning to Florence for meetings, I made sure that one night was spent there and was pleased to find that the food was once again perfect. Mains done and plates cleared away, the waiter came to take our dessert orders and followed up asking if anyone wanted coffee.

All had been going so well. Until this…

‘I’ll have a latte please,’ said someone at the table. It was an innocent enough request, but I knew where this was going.

The waiter looked horrified. ‘No!’ he said indignantly. I’d ordered an espresso, knowing there would be no response other than a nod. But the idea of a caffè latte at this time of night, after a meal, was not getting past him.

Clearly, our waiter felt that it was part of his job to enforce the Italian gastronomic rule of no milky coffees after 10.30am. This was an abomination, as far as he was concerned, and he was having none of this flouting the rules business in his restaurant. I suspect that if someone had asked for a sprinkle of Parmigiano-Reggiano over their spaghetti con vongole his response would have been the same.

Perhaps his response would usually have had the customer slinking back in their chair and ordering an accepted coffee-based post-dinner drink. But this was a table of people with diabetes and telling us that we can’t break the rules never goes down well. Because breaking rules is how we survive. And jeez, we get defiant when people tell us that we can’t. Rule books states that injections should never been given through clothes? Watch how easily this needle goes right through my jeans. Rule books claims the only place that CGM sensors must be worn is on the stomach? I’ll just roll up my sleeve and put it there, thanks. Rule book instructs single use of all diabetes consumables? Let’s see just how many times this insulin pump cartridge can be refilled before getting stuck.

We learn the rules and then turn them upside down and inside out to work for us to help our endless search to make diabetes that tiny bit more manageable and forget expecting us to say sorry for doing it our own way. We make no apologies for taking what some may consider short cuts, instead sharing them with our diabetes peers because everyone deserves a break with this condition if there is a way! And sometimes we just do things in a different way because we like it better.

The waiter in our restaurant looked to me to back him up. I think he assumed that my decent Italian accent that he’d heard when I ordered meant that I was across Italian food rules and that he had an ally. I wasn’t surprised at his response – I do know the food rules – but I treat them in equal measure with respect and contempt, just as I do diabetes rules. I understand why they are there, and sometimes I’ll abide by them. But if I want a milky coffee after my meal because that’s what I feel like, you bet I’m going to order it.

I shrugged my shoulders at the waiter, I’m sure disappointing him that I wasn’t going to back him up. ‘Un latte?’ he asked disbelievingly. ‘Si,’ I confirmed, and then clarified. ‘Con caffè.’ The last thing I wanted was the delivery of nothing more than a glass of warm milk to the table and all that was going to ensue following that.

All our lives we are told there are rules and some of them are just stupid: blue and green should never be seen, unless there’s a colour in between. Never wear pink and red together. Others don’t allow for personal choice: don’t order a steak well done… (or a milky coffee after dinner). And some forget that those rules are connected with something that is boring, tedious, unpleasant, frightening and sometimes downright horrible: every single diabetes rule.

Sure, sometimes rules are there for safety, and we all want to be safe. Living with diabetes doesn’t suddenly make us reckless and not interested in being healthy and safe.

There are some rules that we know are just non-negotiable and we will begrudgingly follow those. But the ones that we think are ridiculous, or we have found a work around to? Those are the ones we’ll do whatever we can to shake up or lose.

Our tiramisu desserts were delivered to us, and so were our coffees, including the caffè latte, which the waiter placed down while shaking his head and making ‘tsk tsk’ sounds. Thirty seconds later, he reappeared and placed down a shot of grappa, making some comment about this being needed to cancel out the coffee.

I smiled up at him, because that’s how Italians do it. (I know – I’ve spent 45 years doing things the opposite to how my Italian father thinks I should do them!) They’ll let you know they’re not happy with you, and absolutely don’t approve of your obviously wrong decision making. And they’ll remind you at every chance that they have.

And then? Then they’ll somehow offer a final fuck-you-and-fuck-your-bad-choices. And, really, there is nothing better than some oesophagus-destroying hard liquor to get that point across!

Viva Italia!

Perfect tiramisu.

DISLCOSURE

I was in Florence for DOCLab Advisory meetings. My flight to Florence from Amsterdam and two nights’ accommodation were covered by Lilly. The attitude during this meal was all courtesy of the rather cheeky waiter.

If I see another article about ‘guilt free’ Easter meal ideas, or read about how people will ‘be naughty’ and eat chocolate eggs, I am going to throw myself into a vat of Lindt Bunnies and not emerge until next Tuesday. It’s everywhere – and even more prevalent on diabetes-related sites.

Is it any wonder that so many of us with diabetes have a fraught relationship with food? With so many judgement-laden words associated with the foods we eat, our diets, and eating during festive periods, it can seem impossible to not feel that everything we put in our mouths comes with some sort of grading.

I don’t know how many times or in how many different ways I can say that food doesn’t have a moral compass. There are no good or bad foods. There is no one eating plan that works for all people.

And more than everything – it is not okay to tell a person with diabetes that they should feel guilty for eating a chocolate Easter egg (or anything else for that matter).

Being diagnosed with diabetes does not mean that you are now open for business for comments, criticism, advice or condemnation about the foods you choose or choose not to eat. Your eating choices are not for public scrutiny. No one has buy-in on your food choices unless you ask their opinion.

We are programmed from when we are young to think of foods as a way to measure our virtue. Unlearning all that messaging is really, really tough.

And diabetes makes it so much harder because we see the impact of what we eat and how our food choices affect our glucose levels. CGM may provide countless benefits, but it also lays bare what we have eaten. But, just as our food choices are no one else’s business, neither is what that food is doing to our CGM trace (or reading on our glucose meter).

My hope for all my diabetes tribe this weekend is this: may you find some chocolate of choice (or not, if your choice is no chocolate). And may no one pass judgement on what you are eating, pass comment on your glucose level, ask you what you ate, tell you to eat only half a hot cross bun, or belligerently ask you if you have bolused for it.

So yes, let’s have a guilt-free Easter. But I don’t mean that in terms of cutting out what we want to eat, or being made to feel bad about it. I certainly don’t mean it in reference to being made to feel guilty because we have a higher glucose number than we would like to see. I mean let’s just free ourselves completely from any guilt associated with food, or the numbers following eating that food. That’s actually one thing I am in favour of completely restricting.

Easter baking plans…

This post marks one thousand posts here on Diabetogenic*. That’s a lot of senseless rambling, ragey-moments, times celebrating and despairing about diabetes, and links to brilliant ideas and post… or to things that have either amused, frustrated, delighted or annoyed me.

A thousand posts in and diabetes is still a constant in my life (damn it). And I remain not good at diabetes…and I have many of those thousand posts to prove it.

There are clearly some recurring themes that I write about. I say that I am a one trick pony, but perhaps that’s not completely true. I seem to have a few tricks up my sleeve, really. And now I’m confused, because ponies don’t usually have sleeves and my metaphors are very, very mixed.

Here are the things that seem to have taken up a lot of writing time and words over these thousand posts…


Peer support

Most of the time, I am pretty positive about living with diabetes. Let me be clear: that doesn’t mean I love it, or even like it. But I feel that generally, I know where it belongs in my life and it seems to fit in that place as well and happily (begrudgingly) as it can.

I know that one of the reasons that I feel this way is people in the diabetes world I am lucky enough to call friends and peers. Online friends, in real life friends and those who cross both boundaries are a critical part of my living-well-with-diabetes strategy. Knowing that there are only a very few places around the world where I couldn’t find someone from this community to have a coffee/tea/prosecco/mojito with gives me an incredible sense of comfort. (And reassurance in case of diabetes emergency…)

I say that my peers with diabetes help me make sense of my own diabetes and that’s true. Knowing people who understand innately what it is like to share a body with diabetes means that I never feel alone. Diabetes is so isolating at times – even for those of us surrounded by great people who support and encourage us. As much as I need those people and am grateful for them, it is others living with diabetes that help me realise that I am never, ever alone in dealing with the ‘diabetes things’.

The diabetes online community is made up of lots of people and not all have diabetes. We each bring our own experience and perspective to it. I’ve learnt so much from those living arounddiabetes and how they incorporate it into life, because it comes with its own set of challenges and victories. That is why the community is so valuable – its diversity and range of experiences and perspectives.

I regularly talk about the value of community and diabetes peers and finding our tribe. It can take time to settle into just who and what that looks like, and it changes because there are always new people around. But it is so worth it. My tribe? I love them so hard.

Nothing about us without us

I am not the tattooing type but if I was, I think that I would have this phrase inked on my body somewhere (or maybe I’d be really pretentious, and have it written in Latin: Nihil de nobis sine nobis, according to Google translate.) It remains a frustration of mine that this isn’t the starting point for pretty much anything and everything to do with diabetes care. The fact that we still need to fight for a seat at the table – or a ticket to a diabetes conference – is, quite simply, not good enough. Having others speak for us, on our behalf thinking they know what we need, is offensive.  It should never be the case that non-PWD voices speak for us or over us. Ever. Our stories are powerful, but they are ours and we should have the platform to tell them in our own way; in our own voice.  Tokenism is rife and sometimes, that frustrates me even more than when we are completely excluded. The delusion of inclusion is, I think, worse.  Whilst there may have been some strides made to true co-design and inclusion, we have not come far enough and until we get this write, I’ll have a lot of content fodder for this blog.

Food

I like food. I write about it a lot. And I want to be Nigella. That’s really all I have to say about it right now…

Waffles in Brussels. Both were excellent.

More than numbers

Apparently, stating the obvious is still necessary in diabetes. We are more than numbers; our A1c does not define us; our worth is not wrapped up in our glucose levels. We have been saying these things for years…decades…and yet there are still times that this is what we are reduced to.

New treatments, devices, drugs, education programs are measured in reduction of A1c. Perhaps this is because it can be measured, but talk about only getting part of the story. I can’t help but think that if PWD were part of establishing research protocols, there may be far more than numbers to assess the success of a treatment or therapy. (See also: nothing about us without us…)

Women’s health

In recent years I’ve written about the issues specific to women, health, sex and diabetes a number of times because there is so little out there about it. And it seems it resonated with a number of women who wrote to tell me (and the HCP who saw me in the fresh produce section at my local Woolies and yelled how she loved my idea of giving lube in diabetes event bags).

Anyway…talking about the stuff that may not be the easiest is important. It’s the only way we get remove stigma and encourage people to share their stories. Which helps others. That’s why I have openly written and spoken about miscarriages and infertility. And eating disorders. (I know – not an exclusively women’s health issue.) There is nothing shameful or embarrassing about these topics. Other than we don’t speak about them enough.

Learning from and supporting others

The Interweb Jumbles I write are my favourite (and cheat’s) way of pulling together all the things I’ve seen that have interested me and leaving them in future place for (my) future reference. Plus, I love sharing what others in the diabetes community and world are doing.

I have always benefited from the generosity of others in this community who have shared my work and I pay that back whenever and wherever I can. Supporting each other is critical.

There’s so much going on in the diabetes world all the time and I highlight the things that resonate because I think that if they mean something to me, they may mean something to someone else, too.

Science. Science. Science

From pseudo-science rubbish, to ridiculous made-up diabetes cures to anti-vax delusions. How much writing material have they provided!

I live in hope that one day – and may that day be soon – we won’t still have to read about these charlatans trying to convince us that all that ails us can be cured with fairy dust and positive thought, or that vaccines are evil and cause diabetes, or that ‘wellness warriors’ are the true experts and professionals when it comes to diabetes.

While a lot of what I write is spent mocking these fools, there is an underlying seriousness to it all. Who can forget little Aiden Fenton who died after his parents stopped giving him insulin, instead leaving him to be treated by a ‘slap therapist’?

Anyone who is sprouting any treatment that is not based in science when it comes to diabetes or perpetuating anti-vax rubbish is as barbaric as the man who was charged with Aiden’s death.

The whole person

Diabetes happens because of something not working properly with our pancreas. But it affects every single part of us – something that astoundingly still seems to surprise some people.

Considering our mental health and emotional wellbeing is critical when assessing just how diabetes impacts on our every day. For some, diabetes seeps into every single part of us and for others, we keep it at bay and manage around us. For most of us, there is an ebb and flow of just how that works.

And while we’re talking about the whole person, diabetes-related complications may be specific to a particular body part, but those body parts remain connected to the rest of us.

For so long, we get metaphorically chopped up with as only bits of us get attention and focus. But nothing in diabetes is ever in isolation. That’s just not how it works.

And finally, language

The trick this (however-many-trick) pony is most known for is #LangaugeMatters and you know what, I’m happy to wear that. I really am. If I was to stop this blog today (thought about it…1,000 has a nice rounding off feel to it), and never spoke about diabetes ever again (oh, if only), I would not be disappointed if this was what people thought of when they thought of me and this blog.

Language matters. It does and I refuse to, for a moment, believe that it doesn’t. I am certainly not the only person playing in this space and I am so grateful to have a tribe of language matters peers and colleagues can rise above the small details to understand just why this issue does really matter.

___________

Thanks to everyone who has read one or more of these thousand posts. Thanks especially to the people who keep coming back. I can’t promise that there are going to be a thousand more posts. And I can’t promise that I will learn any new tricks other than the ones that I seem to have on repeat at times. These issues remain important to me and perhaps to you too.

* At EASD, my mate Bastian Hauck gave me a head’s up that I was getting close to publishing the 1,000 post on this blog. I’d not have had a clue otherwise. Thanks, Bastian!

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