A couple of days ago, I woke up at 5am low and stayed that way until about 12pm when I decided to have a sushi roll for lunch. My thinking was that if white rice didn’t solve this low, nothing would! I’d already thrown a lot at it – juice, black tea with sugar, jelly beans – sitting there watching my CGM trace stay in the red area apart from very occasional and very small rises before dropping back below that comfort line.

The rice did the trick. And then some. I watched the spike as the evil rice did its thing and sent me into the mid-teens. Thanks rice; thanks you very much. (I know, I know…we’re not supposed to think of food as good and bad, but rice is the freaking devil.)

I then watched the spike change direction and start to plummet. I’d done everything ‘right’… dosed at the right time, calculated the carbs, delivered the correct amount of insulin… Rice is my food nemesis. I’ve tried everything and just can’t get it to work which is why I rarely, if ever, eat it. But I was getting nervous at the non-budging CGM lows and knew that rice was a sure-fire way of getting me out of low-zone.

Rice: evil little grains of misery.


Everything fell back into place by the afternoon and then that night, dinner consisted of a low carb meal. The roasted cauliflower, warm salad of broccoli and green beans, avocado and cucumber salad with pepitas, and roast beef barely caused a blip on my CGM graph for the rest of the evening. The tiny bolus that accompanied the meal did its trick and the line stayed in-range and mostly flat. The dark chocolate and cup of tea I had before bed had no effect either.

Before I started using CGM, I had no idea just how different foods truly impacted my glucose levels. Carb counting can be pretty hit-and-miss, but I wasn’t too horrid at it – at least for most of the time.

Doing the recommended four or five checks a day hid most of the truth about what was going on for most of the time. Sure, my glucose levels may have been not too horrid when I checked before meals or before bed, but in between those random checks, there was A LOT happening to which I was completely oblivious.

CGM doesn’t necessarily need to translate to being more limited (or more boring) about food choices. But it does arm us with a lot of information about how our glucose levels react to certain things, which means that we can make more-informed choices about what we eat, and how we eat it.

Using CGM means that I can be much smarter about timings of boluses (and the types of bolus), and even the times I choose to eat different things. I know I am more insulin resistant in the mornings, so it’s a lot more difficult to manage with high carb foods at that time of day. I learnt that delaying my morning milky-sugar-added coffee by just half an hour results in less of a spike.

Of course, we need to remember that food is not the only factor that impacts our glucose levels. CGM has offered great insight into hormonal changes, effects of stress and different meds and eating a certain way cannot guarantee a flat CGM trace.

For the record, THIS is one of the main reasons I use CGM. I get a little tired of the constant focus there is on the technology ‘saving lives’. Do I honestly believe that my CGM has saved my life? Sure, it makes me feel safer – especially when travelling on my own – but for me, the real reason I use it, and its real benefit, is to be armed with information about how to best deal with diabetes.

DISCLOSURE

I probably just should mention that I generally self-fund all my own CGM costs. This includes the $540 I just spent on a new transmitter! When I’ve been given product while participating in trials, or in exchange for speaking gigs, I’ve always disclosed on this blog.  

I also have some very generous friends in the US who have most kindly given me sensors when they’ve had spares. They are wonderful, wonderful people and I am so grateful for their generosity!

There’s a war going on and it’s getting very, very messy.

Fat or carbs? These are the two big hitters in our diets, and when it comes to diabetes, are demonised by some, celebrated by others. And it’s confusing to say the least.

It’s also incredibly polarising and some of the most brutal arguments I’ve seen online within the diabetes community are about the foods we choose to eat or the eating plans we choose to follow.

My own personal decision to eat a lower carb diet was met with almost comical responses. Both sides of the fence told me I was being an idiot, all of which I happily ignored and continued doing what I was doing. Because it was working for me and is none of anyone else’s business.

When we look at the science of food, it’s confusing. I don’t for a minute pretend to understand how things work, I really don’t. I know how different foods impact my glucose levels, I know foods that make me feel better and I know that I like to eat.

But having made all of those disclaimers, I am health (and food) literate and I do understand some aspects of the science. I understand the basics of the carbs versus fat argument. But mostly, I understand that choice needs to be the driving force, along with acknowledging no one way of eating will ever work for every person. (Because if that were true, we’d all just eat Nutella ALL the time, because it tastes so bloody good and if you believe their spin, it’s a health food! Don’t believe their spin.)

What I really don’t like about the debate though is the acrimony. It makes me uncomfortable when either side take to cheap shots or aggression. Exhibit A is in the form of a tweet which I’m not sharing, because its writer is selling diet books and I’ve no intention of giving her any publicity here. But the gist of her tweet was condemning dietary guidelines and slamming carbs because she doesn’t (and this is a direct quote) ‘want to be fat and diabetic’.

The tweeter managed to food shame, fat shame, stigmatise and judge – all in 140 characters. As well as get things wrong. There are plenty of people who do follow dietary guidelines and eat carbs, yet do not have diabetes and nor are they overweight.

I get that there is some real anger, particularly within the LCHF community because there is so little recognition of how eating in this way can, for some people, help manage weight, diabetes and overall health. And some feel cheated that LCHF is frequently not even presented or recommended as an option, instead ignored or claimed to be dangerous. I get that this is frustrating for people who have seen great results after adopting this sort of diet.

I’m actually one of those people. But I refuse to think for one minute that just because this is working for me that everyone else should do it, too. I’ve never subscribed to thinking that any aspect of diabetes management is one size fits all.

So, what’s the answer? Well, I’ve no idea really. Ever since taking an interest in different eating habits, I’ve been astounded at just how many new diets are released. Obviously some of them are more sound than others, but regardless, there are always new ideas out there.

Perhaps the answer is to be patient. The ‘in’ and guideline-approved way of eating changes every decade or so. Perhaps those who are cross that their chosen eating plan isn’t the plan de jour just need to wait a few years before it is. And then they can say ‘told you so’. At least, until it’s old hat and replaced by some other new trend.

This is the first of a couple of food/diet-related posts I have ready to go over the next few days. I’m really interested to hear what others have to say about what works/doesn’t and why. And also how people deal with the judgement and commentary that inevitable comes when we are talking about what we eat.

Easter seems to be a feast for eating. ‘Feaster’, if you like. It’s a four-day holiday and a chance to catch up with family, bake and eat. Sounds like a pretty perfect long weekend, if you ask me.

But it’s also a loaded time of year for me. I was diagnosed just after the Easter Bunny visited. I can still remember the way I felt at our huge extended family gatherings on Easter Sunday, desperately trying to quench a thirst that was simply unappeasable, visit the bathroom frequently and squint as I tried to bring into focus whatever I was looking at.

You’ve lost weight; you look amazing,’ remarked a family member, clearly blind to the fact I was slumped on the floor by the heater, distractedly trying to warm up my shrinking body which was virtually falling apart. ‘I feel like shit,’ I replied. ‘But, thanks. I think.’

This Saturday will mark nineteen years I’ve lived with diabetes. It feels like forever to me in some ways, yet there are moments of life before diagnosis that are still crystal clear, and achingly unattainable.

If someone was to ask me what the most valuable piece of advice I could share with someone else living with diabetes, I wouldn’t hesitate. It has nothing to do with the foods we eat, the drugs we take, the devices we use. It wouldn’t be able the healthcare team to bring along on the ride or the hospital to visit. It wouldn’t be about the best time to inject or the supplements to take or the way to think about diabetes.

It would be simply to advise people to be kind. If you have diabetes, be kind to yourself. If you are affected by diabetes in any way, be kind to yourself and to those actually living with diabetes.

I don’t have many answers when it comes to living with diabetes. I muddle along, learning what is good for me at that moment and doing what I can to live as well as I can. I try to be kind to myself, although often need a reminder. I probably am my own harshest critic – a lot of others are probably in the same boat.

Nineteen years down, and a lot of personal criticism in there. A lot of self-blame. Not enough kindness to myself. I judge myself in ways I wouldn’t tolerate from others. I am harsh when I should be kind.

So this weekend, as I go about my ‘Feaster-ing’, I’m going to make a real effort to be kind to myself. And to help remind me, I have my heart on my sleeve to remind myself to be gentle and kind. It makes life easier. It makes life with diabetes easier.


On Saturday, Medtronic Australia hosted their first Diabetes Advocates Day. Ten or so advocates from across Australia came together to hear about new technologies and talk about real-life application of technology in our diabetes lives.

There were some familiar faces and some newbies too which is always great to see. I, most opportunistically, used my role as facilitator for the day to get book recommendations from as part of the ice–breaker session. (Truthfully, this is always one of my favourite parts of these events, but it can also be a challenge when the people in the room are all over-sharing bloggers!)

There were a couple of standout moments throughout the day worth sharing.

Melbourne endocrinologist, Professor David O’Neal, gave a great talk on the future of diabetes technology.

David is one of those endos who after you meet and hear speak, you want to make him your endo for life. He is ridiculously tech savvy and his knowledge of diabetes technology is hard to beat. If you Google him, you’ll see that he is a regular contributor to diabetes journals and is involved in a lot of diabetes tech research.

Which is all good and well, but the real reason David is so wonderful is because he completely ‘gets’ diabetes and what technology can actually offer us. As a tech geek, it’s easy to be completely and utterly captivated by the technology, but David readily admits it has limitations.

This is really important to remember. Too often we forget that the tools we have today are not perfect, and cannot seamlessly mimic a fully functioning pancreas. Most importantly, this is not the fault of the person using the tech. David acknowledged both of these points in the opening to his talk.


I really love that David mentioned this because so often when technology doesn’t work the way it is meant to, there is an assumption that it is the fault of the user. We mustn’t have pressed the right button, at the right time, in the right order, with the right calculation.

But actually, the tools are just not smart enough to account for the daily changes and variabilities and inconsistencies that play a pivotal role in life and impact our diabetes. As David said, insulin requirements overnight can fluctuate by up to 200%. There is nothing available at the moment that is equipped to deal with that sort of variation.

Add to that, the effect of exercise, food, stress, hormones, illness or pretty much anything else, and there is no way the tech can keep up – or those of us using it can work out how to factor it all in.

This constant need to makes changes is what sets diabetes technology apart from other medical technologies which are often ‘set and forget’ for the wearer. With diabetes devices, there is no such luxury, which is why we need to remember that often, technology actually adds work to our already significant list of diabetes tasks.

Another absolute gem from the day came from blogger and advocate Melinda Seed. During a discussion about HCPs reticence to deal with PWD’s research online, was her comment (as tweeted by Georgie Peters):

This really is turning the whole ‘Dr Google’ thing on its head. Instead of fearing the internet – and PWD who use it to research and better understand our health condition, surely HCPs could engage to discuss safe ways to do that research. Being part of the solution rather than just fearing it makes a lot of sense.

And perhaps, look at it the way David O’Neal chooses to:

In a roomful of tech-heads, there was also a moment where we considered those who have no interest in using any sort of newer tech available. With the dawn of new hybrid closed-loop systems that take even more control away from the user, how do we make that leap to completely trusting the device? And is this particularly difficult for those of us who identify as control freaks when it comes to our diabetes management?

Affordability and access also came up, reminding me – and hopefully those from the company producing the devices – that this needs to be a consideration at all steps of the conversation. There is no point in developing and releasing onto market whiz-bang tech if people can’t afford to use it. (And we also must remember that as every new piece of tech is released, the divide between the haves and have-nots becomes more and more cavernous – especially when you remember ‘have-nots’ refers to not only the unaffordable tech, but also to basic needs such as insulin…)

DISCLOSURE

The Diabetes Advocates Day event was hosted by Medtronic Australia and was supported by Diabetes Australia. I am employed by Diabetes Australia as Manager of Type 1 Diabetes and Consumer Voice, and attending and facilitating the event was part of this role.

There was no expectation by Diabetes Australia or Medtronic Australia that I would write about the event, and my words here and in other online spaces are mine and mine alone. For more, check out the #DAdvocatesAU hashtag on Twitter and keep an eye out for blogs by other attendees.

It’s been a big week in diabetes. And even though it’s Friday, it’s not over yet. Tomorrow, I’ll be facilitating an event for Medtronic Australia when they bring together some diabetes advocates from across the country. (More on that another time.)

I don’t often feel overwhelmed by the diabetes world. Of course I feel overwhelmed by my own diabetes – frequently, if the truth be told.

This week, I have found it overwhelming. The NDSS CGM Initiative announcement last weekend has, as expected, resulted in a lot of interest and a lot of work. It’s been long hours in the office and then longer hours at home. (In case you missed last night’s webinar, you can watch/listen here.)

Yesterday I called Aaron and the kidlet who are enjoying school holidays and begged them to come and meet me for lunch so I could have an hour of diabetes-free time with my favourite people.

We sat outdoors at a café in Carlton, talking about anything but my work and it was lovely. The kidlet told us about the book she had her nose planted in, announcing proudly ‘I can swear in Gaelic now’ delighted her, and reminded her parents why we should never have encouraged this reading palaver!

The sun was shining, the weather was warm, the food was great. And the coffee was taking the edge off the frenzied place I’d been lost in for most of the week.

As we were chatting about something (possibly the many languages our child can swear in), I looked up at the exact moment a young woman walked past our table. And there, firmly attached to the waist band of her jeans was an insulin pump. An Animas Vibe pump, boldly fastened just above the pocket, catching the sunlight. I jumped in my seat a little.

Look!’ I hissed, pointing. ‘Look!!’ (Yes – I am all decorum and subtlety. Obviously)

Aaron and the kid turned around and immediately noticed what I was getting excited at.

At that moment, I knew I just needed to go and say hello. I knew it was exactly what I needed. In fact, the words I used were: ‘I’m going to say hi. I need some diabetes in the wild right now.’

I think what I meant was that I needed some ‘anonymous’ diabetes. A connection with someone who wouldn’t know the constant madness that has been so present this week.

I walked into the café. The girl was standing there with a young man and another woman who I figured was her mother.

Excuse me,’ I said to her. I then noticed my kid had followed me in, eager to see this encounter.

The girl spun around and looked at me.

Hi,’ I said, smiling widely. ‘I’m sorry to be so intrusive…but…um…I noticed your pump, and um…I have one just like it. Oh and this!’ I pushed my left arm forward, lifting the sleeve of my shirt to show her my Dex.

Hey!’ She said. ‘I used to use one of those!

I introduced myself and she told me her name. I apologised again for rushing up to her.

No! I love it and I don’t mind at all,’ she said. ‘I stopped using the CGM after summer, but I really loved using it.’

‘You know there was an announcement about a funding initiative just this week. Do you mind if I ask…? How old are you?’ I ask.

‘I’m twenty. And yes, I know. I’ll only be able to access it for about 6 months, but it’s great.’ 

‘I’m so pleased!’ I said. ‘It really is such useful tech…I wouldn’t – I couldn’t – be without it.’

I looked at her mum and smiled. She asked me how long I’ve had T1D. ‘Nineteen years this month,’ I said.

Wow…so…’ she looked at the kidlet who was watching all of this in interest. ‘Is this your daughter? Did you have her…’ she let her voice trail off, thinking about what she wanted to ask. I smiled gently, knowing full well what she was about to say.

I introduced the kidlet to the group. ‘I’d had diabetes for 6 years when I had her. It was hard, but it was absolutely the best thing. She’s 12 now. I used a pump, but there was no CGM in Australia just yet. The tech is so much better now.’

I could see the look of relief flood over the mum’s face. ‘It’s the thing I’m concerned about. She’s still young…but it feels like the next big thing to deal with. When she’s ready.’

I mentioned a few different things she may like to check out and we chatted a bit more before we said our farewells.

The kid and I walked back to our table. I sat down and took a deep breath. I felt myself fill up. I’d just connected with one of my own and that small interaction refocused my energy and eased a lot of the pressure that had been pushing down on me throughout the week.

This week has been huge. It has been busy. I have felt overwhelmed. But it has been great. It took this brief encounter to help me pinpoint the reason for it all. People. I wasn’t really sure how I’d forgotten that.

This is me standing next to my favourite poster drinking from an excellent coffee mug:

And this is a close up of said coffee mug:


And this is the back of same said coffee mug:


Decompressing today and grateful for this little reminder! I love homewares that give a pep talk.

More information about Bill Polonsky and the Behavioural Diabetes Institute here. And more from me about Bill Polonsky here. (And you can buy your very own version of this mug right here.)

Brutal. That’s the way I’ve been describing my week. It’s been super busy and there is no hint that will change any time soon.

But there is so much stuff out there to read. Here’s just some of it…

CGM

Oh, did you hear? CGM is now funded for children and young people under the age of 21 who meet eligibility criteria. It’s been ALL OVER the interwebs, but for the most up-to-date info, go here!

(And yes, I know, people 21 and over need CGM and need support. This isn’t over yet…!)

A psychologist who knows diabetes? Yep!

A good psychologist is worth their weight in gold. A good psychologist who understands the impact of living with diabetes on our overall wellbeing is like a unicorn – rare and magical.

So, I was delighted when someone from my office who has been a Research Fellow with the ACBRD for a number of years came to tell me that she is starting a private psychology practice. Dr Adriana Ventura’s research has focused on the psychological, social and behavioural aspects of living with type 1 and type 2 diabetes.

Adriana understands that living with diabetes (and other chronic health conditions) can be challenging. And she understands that these challenges can make it tough to take care of our health the way we would like.

Details about Adriana’s practice can be found here. (Adriana works with adults and older adolescents – 16 years and over)

Really? REALLY?

Seems that we’ve all been doing diabetes wrong. That lancet thing that we joke about never changing? This is how you use it according to the pic accompanying a BBC Radio 2 tweet.

Apparently it is really hard to do some decent research. (And if the image wasn’t enough of a deterrent, the article looks shit too, so didn’t bother reading it.)

My maths teacher was right

So, as it turns out, I do use maths every single day. Diabetes has certainly put my algebra skills to good use!

This article from The Conversation is all about how an applied mathematician developed an algortithm to help treat diabetes. As you do.

Words that over-promise

I can’t remember the number of times I’ve heard that a diabetes cure is ‘just around the corner’ or any other version of ‘five years away’.

But how do these promises affect people living with health confitions? This article from Medivisor asks just that.

March for Health

While we were celebrating the CGM announcement on Saturday, I was very mindful that my US friends were getting ready to continue their battle for fair healthcare. March for Health was held across the US on 1 April calling for affordable access to quality health care for all people. I don’t know about you, but that doesn’t sound unreasonable to me.

Check out more at the website here.  

And this, by the way, is possibly one of my favourite promotional posters from the March.

Women’s Health Survey … Quick!!!

And while we’re talking women’s health…There are still a few days left to do the annual Jean Hailes Women’s Health Survey, which identifies gaps in current knowledge when it comes to women’s health.

Click here to do the survey.

College Diabetes Network

There are some really wonderful groups out there supporting people with diabetes, and my friend from the US, Mindy Bartleson emailed me with some really useful information about the College Diabetes Network (CDN). The Network empowers and connects young people with diabetes and their are CDN Chapters on college campuses across the US.

The Network is certainly US based, but some of the information will be relevant to those in Australia (and elsewhere). Their resources provide information about how to prepare for the transition from high school to college or university. Do have a look!

Information for students can be found here.  And information for parents can be found here.

Peanut butter cookies

I made these cookies and jeez were they delicious!

They are gluten free, which I know is important for many people. For me, I need cookies that take no more than 10 mins to mix together and then taste perfect. Honestly, they are possibly the best tasting biscuit/cookie I have ever made… and I bake a lot.

The recipe can be found here. (I used smooth peanut butter as the recipe suggests, but I reckon they would taste awesome with crunchy. Also, do pop the mixture in the freezer before trying to shape the cookies. The dough is mighty-soft and sticky, and this step helps to get the dough from the bowl onto your cookie tray. AND DON’T SKIP THE SALT ON TOP!! This is what ties it all together and makes the magic happen!)

And finally……

… a little New Yorker Cartoons funny, which may not be directed at diabetes, but boy it certainly shows how I feel most days living as a diabetes tech cyborg!

Hi Lady

I was a little snappy to you the other day. But then you were rude, so how about we call it even? I wrote this just after our little encounter and I hope you take it in the spirit in which it was written. That spirit being ‘pissed off’.

I didn’t say anything when you first started making comments directed at me. We were sitting in a busy café. A small, busy café with lots of people and some kids, and a woman trying to juggle a screaming baby and drink her coffee, and quite frankly, I was paying more attention to her to see if she needed any help trying to locate whatever it was she was desperately searching for amongst her gear.

So when you made your ‘Ugh – does she have to do that?’ comment while staring at me – and then pointing, I ignored you. I didn’t say ‘Yeah, I do. I’m checking my BGL to calibrate my CGM. The buzzing on my phone (because I should have already done it) is pissing me off and probably everyone around me. So, yes, I do have to do that.’

And then when you announced to your friend – and everyone else I the café (did I mention it was a small café) that I ‘must have diabetes,’ I ignored that too, even though I didn’t really see how my medical condition was any of your business, or of any interest to the rest of the people trying to have a morning coffee and prepare for the day.

I did throw a death stare at you when you moaned about the crying baby. I know that the kid had a set of lungs on him, and I know that he was loud, but I promise you that he wasn’t doing it on purpose. And no matter how uncomfortable it was making you feel, that’s nothing to how it was making his mum feel. I didn’t say that because that was the moment that I did lean over and offer to pass the mum the dummy she was reaching for in her baby’s pram, and then we had a bit of a chat after her little one settled down.

I looked away, but was listening intently, as you complained about how you’d seen people with diabetes inject in public and that you hate the thought of me leaving blood around the café after I’d finished calibrating my CGM. In no uncertain terms you announced with misplaced authority that ‘diabetics’ (your word; not mine) should use the bathrooms provided to do whatever it is we need to do.

I tried not to listen when you shared the story of someone you knew who had all sorts of nasty diabetes complications, because you were starting to sound like a cliché and I really don’t like to hear about end-stage renal failure before I’ve had at least two cups of coffee. I wasn’t there yet. Not nearly there yet.

But then, when you started your ill-informed rant about diabetes, I couldn’t stay quiet any longer. When you started saying that I probably shouldn’t have just added sugar to my morning coffee because I am ‘diabetic’ and that if only I ate better and did some exercise I’d be cured, I decided that it was time for us to have a little chat.

Could I have been more polite? Yeah, absolutely. But then, so could you. So I’m not actually going to apologise for my manner.

You probably didn’t listen to what I said, so I’ll lay it out for you again:

Yes, I have diabetes. No amount of exercise or different eating is going to change that fact. But that’s not really the point. The point is that it’s not your concern that I have diabetes, and certainly none of your business to suggest how I could better manage my condition – especially when not asked. Diabetes cannot be cured, so you should probably strike that piece of advice off your playlist for good.

It’s not appropriate to chastise someone for doing a task that needs to be done to manage that condition. I’m pretty sure I’m right when I say that no one voluntarily jabs their finger to check their BGL because it’s fun and they’ve nothing better to do. I can also promise you that your claim that I’ve left ‘blood all over the café’ is completely groundless. I generally don’t splatter blood from my tiny finger prick test on every surface nearby.

But this is the message that I really hope got through: It’s not your place to comment, criticise, or appraise someone’s health condition. Nor is it okay to judge someone. We get enough of that – often from ourselves. Really, you should have said nothing. Nothing at all.

After I finished what I was saying, I stood up and went to the counter to pay because I wasn’t interested in hearing your reply. You’d already said more than enough. But I did leave you my card with the address this blog. I’m hoping that you typed in the URL and started to read. (Actually, I hope you’re doing it after I post this, so you can read this letter because you did, after all, inspire the content here today. Thanks for the content.)

And I hope that you click on a couple of other posts and have a read about what it’s like for me to live with diabetes to give you an idea of just how wrong you seem to have the whole diabetes thing.

If you see me again in the café, feel free to come up and say hi and we can have a chat. As long as you have remembered your manners and can be respectful, I promise to be polite in return. I’ll even buy you a coffee and answer any questions you might have.

Best

I’m still getting my head around the #HealtheVoicesAU conference – there was so much that happened over the event that it’s taking time to write about it all and really nut out what I took away from each session. (Previous posts here and here.)

When I looked at the program, I was probably most excited to hear from Nick Bowditch. I knew nothing about Nick other than what the program told us: He is the only person in Asia Pacific to have worked at Facebook and Twitter; he’s an entrepreneur who helps small businesses here and across the globe shape their online presence. And his personal health story is that Nick is a mental health advocate as someone who has lived with depression for many years.

I knew Nick’s talk would have lots to offer, and title of his talk that had me excited: ‘The Art of Storytelling’.

I’ve written before about why I love story tellers and story-telling. And telling my own story. It’s reading and hearing the stories of others with diabetes that helps put in context my own experiences. Others’ perspectives shape my own and I learn so much from how others deal with the clusterfuck that diabetes can be.

The first slide Nick showed us was of the wonderful Jamaa el-Fna in Marrakech. He told us how he spent an evening captivated in the square. There amongst the snake charmers and the men walking around with monkeys on leads and the little girls selling tissues and the vendors hawking fresh orange juice, were story tellers. And although he couldn’t understand a word they were saying, he was enthralled as they animatedly told their stories.

That’s the beauty and magic of a good story teller – you don’t necessarily need to understand the detail; just getting the gist of the tale is enough.

And then, Nick gave us the snapshot of his story. In a nutshell, he told us this:

Slide from @NickBowditch

It’s easy to make assumptions and think that you know what Nick might be living with if you see that list. But you’d probably be wrong. I know I certainly was. My initial ideas of what life must be like for Nick were turned on their heads as he put into context what each of the above aspects of his life actually means to him:

Slide from @NickBowditch

By turning our assumptions on their head and reframing how he lives with mental health conditions shows us that Nick is not ‘just coping’, he’s living. His words were: ‘These are not my defects. These are my superpowers.’ And it challenges us to reconsider our preconceived ideas. I know that those of us who speak about diabetes often challenge what others think.

The image of T1D being all about kids and needles and blood is not really what it’s about for me. And the far-too-easy idea that T2D is all about older, overweight, inactive people is wrong too.

When we tell our stories – and reframe the narrative – the truth comes out.

Possibly the most powerful thing Nick said was this: ‘Telling the truth is not brave. It’s easy. The hard thing is not being authentic.’ We’d come full circle back to the first speaker of the day who implored us to find authenticity in what we were saying. And it reminded me of why I have always been an advocate of having people with diabetes sharing their stories in any forum where people are talking diabetes: the legitimacy of lived experience cannot be found in any other way than actually having someone tell their story.

I see first-hand the power that having a person with a health condition stand alongside a healthcare professional and put into context the theory and research that they have just presented.

There is an art to storytelling. We do it every day that we tell our story. We do it every time we put words on a page for a blog post, or in a diary or in a letter, ot when we stand up and tell it like it is. Some do it far more elegantly and eloquently, but the things is; it doesn’t matter. As long as we’re authentic.

DISCLOSURE

Thanks to Janssen (the pharma arm of Johnson and Johnson) for covering my travel and accommodation costs to attend the #HealtheVoicesAU conference. There was no expectation by Janssen that I would write about the event and everything expressed here (and on Twitter Facebook and other social feeds) is mine and mine-alone! To read more, check out the conference hashtag, #HealtheVoicesAU, on the socials. 

A few people read this blog. I actually checked the stats just before, and was surprised to see that each day a significant number of people check in and read what I have to say.

So, given that people seem interested in what I have to write, I’ve decided I should take advantage of this. With this profile, I am going to do good for the world.   

Just so you know – because I’m all about disclosure – I’m a classically trained flute player. Also, I like to cook. And I’m quite good at air hockey. Also, I write some mindless crap a few days each week and publish it here, so that OBVIOUSLY qualifies me as MORE than suitable to give advice – any sort of advice I’d like, but specifically medical and nutrition advice. In fact, I’d argue that I am probably more qualified than most people who have gone to medical school, because they have been brainwashed by all the evidence and peer-reviewed journals they’ve been forced to study. I haven’t.

I think that it’s fair for me to advise that insulin is actually really poisonous. It’s dangerous and it’s dodgy. Doctors, of course, won’t tell you this. They want to keep you on insulin because they are in the pocket of Big Pharma, and like their holiday houses on the Peninsula, so they won’t tell you what they know.  

Really, you should all be off insulin and use air and water, and maybe some cinnamon, which is NATURAL and can be found in NATURE and is ORGANIC. Because NATURE’S NATURAL ORGANICS are health care. Medicine (such as insulin) is sick care.

Also – if you are ingesting grains, dairy, fruit, vegetables, sugar, protein, carbs, caffeine, flowers, condiments, oils, sauces and/or food (except organic kale) and drink (except organic kale juice), you should stop. Dietitians know this, but they won’t tell you that because they are in the pocket of Big Food and they want you to be sick so you’ll go to doctors who are in the pocket of Big Pharma.  

It’s the circle of life and everyone everywhere is trying to keep you sick. Okay? OKAY?????

And, finally, I’ve seen the way and realise now that vaccines are really dangerous and I wish that I’d never vaccinated my kid and will be cancelling my flu vax appointment for early next month. I’m trying to work out if I can actually somehow withdraw the vaccines I had injected into my kid last week so she doesn’t have those evil pollutants floating around her otherwise perfect self. Vaccines are full of toxins and heavy metals and evil pixies. Plus, vaccines cause frizzy hair, skin tags and bugs to fly into your mouth making you cough. Doctors know this, but won’t tell you because … well, you know why…

Also: kale. Because KALE, KALE, KALE, KALE, KALE!! (Must be organic.) 

I know. I sound like a lunatic, right?

Actually, I sound kinda like Pete Evans. To be honest, I didn’t watch Pete Evans’ interview last night. I’m not interested in seeing him being allowed to spruik his dangerous crap on a television station that employs him (poor form, Channel 7), plus he’s full of shit. Most importantly, we were watching ‘Shut Up and Sing’ in preparation for seeing the Dixie Chicks next Saturday night and needed to bring the kidlet up to speed with her political education. #TeachingMoment

But I did catch up online with some of his rubbish claims and am once again flabbergasted that people actually believe what he has to say and defend his right to say it.

If Pete Evans said ‘You know, it’s always best to eat fresh, healthy, in-season foods and as a chef, I’m going to share some recipes that will show you how to make an easy and healthy dinner’, I’d be ALL over it. I’d love that! I’d make his recipes and then Instagram the shit out of them. Because I care and share.

But that’s not what Pete Evans does. Pete Evans tells you that fluoride is bad and that babies should be fed bone broth and drink camel’s milk and that sunscreen is pointless. He blunders about in a way that is oddly (and frighteningly) similar to fools including Donald Trump and Pauline Hanson who seem to think that just because they have a public profile, they are qualified to give health advice.

And people believe their claims and then blindly follow them.

I (somewhat stupidly) had a look at Pete Evans’ Facebook page today and found this:

I’m not here to debate whether any people are taking medicines they maybe don’t need to take. I’ve no qualifications in health (real or imagined) and it’s not my place.

But this sort of meme is really damaging because it lacks any sophistication at all. It suggests that if a doctor puts you on any drug, they do not have your best interests at heart.

Could our HCPs be more holistic about the way they treat us? Maybe. Do some doctors over- and unnecessarily – prescribe drugs? Possibly. Do ALL doctors do this? Absolutely not. Most doctors – the vast majority, in fact – do not prescribe drugs that people don’t need. (I’ll just let the conspiracy theorists make their ‘ALL DOCTORS ARE IN THE POCKETS OF BIG PHARMA claims for a bit…Done? Okay, let’s move on.)

And, of course, I’m not stupid, and I know that when Evans puts up a meme like this on his Facebook page, he’s not really about people like me who need insulin to stay alive.

But the problem is that not everyone realises that.

Just last week, we heard another case of a child dying after his parents took him off insulin to treat his diabetes using ‘natural methods’. I still have people telling me to try <insert ridiculous and pointless herb> to treat my diabetes. There will always be people who just need a tiny push to stop the drugs they’ve been prescribed, because meds are bad, right? And natural is good, right? No. Not right.

Evans (and his ilk) speak in generalisations and sound bites that make sense to some people. But he fails to in any way address the intricacies of health. And he certainly has no concept of the complexities of living with a chronic health condition and how the drugs we take HELP keep us well (and alive).

This could be because he is a chef and doesn’t need to. And if he stayed being a chef and shut the fuck up about health, I wouldn’t be writing this blog post. Or getting into online arguments with members of his ‘tribe’ who keep offering me unsolicited and wrong medical advice*.

*Also – note to self: You are a fool for voluntarily falling down the rabbit hole and engaging with conspiracy theorists!

Read about Renza

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