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DISCLAIMER AT THE BEGINNING TODAY

I work for Diabetes Australia and have been involved in our National Diabetes Week campaign. I am referring to this year’s campaign in this post, as well as previous campaigns (which I have also been involved in). This is a commentary piece on what I think works and what doesn’t. This is all my opinion – thoughts my own and mine alone.


It’s National Diabetes Week in Australia this week, and that means the socials are all in the key of D, with lots of news and stories about that little health condition that many of my friends and I know a little bit about.

And campaigns. There are lots of diabetes campaigns.

The other day, I re-watched a lot of old NDW campaigns from years gone by. It was no secret at the time that I wasn’t all that enamoured by some of them. The campaigns that really concerned me was the ones about complications using graphic images of an eye being operated on, or a heart that was (apparently) seriously damaged, or what a kidney looks like when on dialysis. While some people’s concerns about these ads was on the ‘unintended consequence’ of how people already diagnosed with diabetes might feel when seeing these, mine was that have always struggled with isolating body parts from the whole person living with diabetes. It doesn’t work that way – even if we have a diabetes-related complication in one part of our body, it still remains intact and attached to the rest of us. (I think this piece I wrote with Grumps for diaTribe explains best why this is problematic.)

In recent years, I feel that we have become a lot smarter and more systematic about our campaigns. This is as much about the approach to how we have done things, as well as the actual campaigns themselves. Previously, there was a theme and it was rolled out for a year, and one year only. Each new NDW meant a new campaign theme. And then, as soon as the week was over, we shelved it.

It’s not just diabetes organisations that are guilty of throwing all their energy at ‘their’ health week and building up a big campaign that they yell and shout about for the week and then, in a puff of smoke, it all disappears – often never to be heard of again. It’s as though there is a collective sigh and then everyone ticks a box as if ‘that’ issue has been done and doesn’t need to be done again.

Back in 2016, Diabetes Australia ran a campaign called 4,400 Reasons which addressed diabetes-related preventable amputations. There was clear calls to action behind the campaign and one was to highlight the need to reorientate the Australia health system towards early intervention and the implementation of more foot care teams across the country.

The campaign wasn’t graphic – there were no images of amputated limbs or blaming and shaming those who have had a limb amputated. It had a very clear focus on how the system is letting people down – not that people with diabetes were not looking after themselves.

Since then, we have continued to push the message of this campaign. Screening is important and it needs to happen systematically.

And then yesterday, at the start of another NDW, the federal government made an announcement about a new funding initiative that would start to build a national screening and treatment program called ‘Foot Forward’.

That’s how to do it – find a way to address an issue, make it a focus, keep going, continue to push the same messages, talk to the right people, make it happen. We’re not done, by the way. This is the start of a national screening program, but until we know that preventable amputations are happening far less frequently – or not at all – we keep working at the problem.

For this NDW, we are continuing to promote the importance of early diagnosis of both types 1 and 2 diabetes.

Our T1D campaign is the 4Ts and is a community awareness initiative to increase knowledge of the signs and symptoms of T1D.

Why are we doing it again? Because each year there are well over 600 Australians who are diagnosed with diabetes when they are very, very unwell. Most will have already been to the GP once, twice or even more times and have been misdiagnosed. Type 1 diabetes is fatal if it is not diagnosed in time. That’s the bottom line here. Until this stops happening, we need to teach people the 4Ts.

And when it comes to T2D we need a national screening program that means people are not living up to seven years with type 2 diabetes before they are diagnosed. Early diagnosis equals early treatment and that means better outcomes. That is a goal we keep working towards.

What can we learn about how to put together a meaningful public health campaign?

Time and time again, I hear people say, ‘Why can’t you run a campaign about the difference between the types of diabetes?’I want to ask you if you knew what those differences were before you or a loved one was diagnosed with diabetes. Think about other health conditions and just how much you know about the realities of life with those.

When it comes to health messaging, the airwaves are flooded. We have but a second to grab people’s attention. If we only talked diabetes 101 education to the general community, who do you think is really going to listen to that? I reckon it will be people already affected by diabetes – people who already get it. Do you sit there and watch or read about every other public health campaign for conditions that don’t have anything to do with you or someone you know? I know I certainly don’t.

I know nothing about stroke, however did learn FAST – because it was simple and important to know. Have I bothered to learn about what day to day life with someone who has had a stroke is? Or about the different types of stroke? Not really.

This week, you will see a lot of diabetes out there in traditional and social media. Share what you will and can. We already will share the things that are more relevant to our own experience – that makes sense. I’ll admit my bias and say that I am committed to getting the 4Ts message out that you’ll be seeing a lot of that from me. I have heard too many of my type 1 tribe talk about their horrid diagnosis stories.

I keep saying this – I don’t want or need or expect people to know the intricacies of my life with type 1 diabetes. Honestly – I don’t particularly to know that. But I would like people to be diagnosed with type 1 sooner. I would like them to be diagnosed correctly. I would like HCPs to know the 4Ts and have them front and centre.

I don’t want shock campaigns that scare people into inaction. But equally, I don’t want wishy-washy campaigns that offer nothing and have no call to action. I want more campaigns that deliver. And I think we’ve made great strides in that direction.

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It’s been a long time between drinks blog posts from the Grumpy Pumper on Diabetogenic. But it seems that I have found out a way to get him to write for me here: get him to Australia, ply him with non-stop decent coffee, stick a laptop in front of him and chant ‘Write! Write! Write!’ until he delivers. It works! At least it did this morning. 

So, here he is, talking about making some changes to his diabetes management. (Being in Australia is a good start!)


Following on from my recent post on how I’m not burnt out but I am smouldering, and that ‘something needs to change’, I am left with the question: What?

There a shitload of things I could change:

  1. Diet – Let’s not be hasty
  2. Exercise more – Less likely than diet
  3. Quit alcohol – Fuck that!

I don’t what to change my lifestyle and even if it needs it, I’m not in the right frame of mind to sustain it even if I start. That means I’m likely to end up as demotivated as when I started, or worse.

So, if I don’t want to make lifestyle changes what about changes to my management?

Actually, that may work. I can make small changes and won’t have to wait long until I see a difference. It may not be the difference I want but at least I can work out where to go from there. I have never expected this to be a straight and open road. Diabetes management is a winding path that has may obstacles along the way and the occasional roadblock that you need to negotiate.

However, there is a lot that goes into this:

  • Basal checking
  • Insulin sensitivity
  • Carb ratios
  • Pre-bolus timings
  • Extended bolus

So, I am going to start with none of these…

Of course, you are now asking yourself (if you are still awake):

Where am I going to start?

What would Grumpy do?…

Actually, I’m going to get my A1c done…

I’ve not had it done for two years now. Not because I’ve been avoiding having it done. It’s a combination of cancelled appointments due to a busy life and a cock up with the paperwork the time I did get bloods taken.

Why, given that it is likely to be a lot higher than my last one two years ago would I want it taken before I’ve tried to make the changes I need to try and make? Won’t it just demotivate me and make me feel worse?

Actually…no!

Because I genuinely don’t care what it is. That number, however high, will no way reflect the effort I have been putting into living with diabetes, and my related complication.

Right now, it’s the easiest thing I can do to make a start. It will draw a line in the sand behind me and be the starting point from which I move forward.

Much as I’m not a great fan of A1c as a measure, I can use it as a milestone. After all, you can’t find your way back if you don’t know where you are.

Live Long and Bolus.

Grumps!

You can get more from The Grumpy Pumper by checking out his blog here. And following him on Twitter here

My favourite answer to give when someone asks me how I went at any diabetes-related medical appointment is ‘Nothing to report.’ I love being able to say that things are boring. If there is ever a time in my life that I want to be unexceptional and routine, it is when I am hearing or sharing news about my diabetes.

For as long as I live with diabetes, I want to forever be told ‘It’s nothing,’ or ‘There’s nothing.’ I want there to be nothing there when my eyes are screened; nothing to report when I have my kidney function checked; nothing new, nothing scary, nothing to worry about.

The thing is: to get to nothing, we put in a lot of effort. We push ourselves and do things over and over and over and over. Because we’re told if we do all the things, all the time, nothing will happen.

But sometimes, despite all that effort, it’s not nothing; it’s something.

We have done everything possible – everything we possibly can – and we walk in and expect to hear another nothing. But instead, this time we’re told there’s something and we can’t help but wonder why we didn’t do more.

That’s just how diabetes works. There is no rhyme or reason. There is nothing fair about it. But we keep doing it – whatever we can manage at that particular moment.

And we ask and hope for nothing – absolutely nothing – in return. Except our health.

Which, as it turns out, is absolutely everything.

Hoping for nothing.

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!

It’s that time of year in Australia. The weather is cooling down, leaves are turning, daylight saving ends over the weekend, and we are reminded that soon it will be time for our annual flu-vax.

This has coincided with a significant number of different pieces in the media about vaccines. Some of them are well written and well informed pieces focusing on the science behind why vaccines work. Some of them are not. (Cheat sheet: science-based pro-vaxx stories good / crazy no-science anti-vax stories bad.)

There often seems to be a groundswell after some celebrity chef, wellness blogger, person famous for being famous or, (as we’ve seen recently) WAG comes out and explains why vaccines are the devil and we should all rely on ionised water, sunshine and pixies rather than evidence and science.

So, today, I thought I’d share some of the things I’ve seen recently which support the vaccination message.

No platform for anti-vaxxers

I’m going to start with this. Meet Zubin Damania, MD – or as he’s known on YouTube, ZDoggMD. I know – I cringed, too. But he speaks sense and the first time I watched this video, I was nodding in agreement. ZDogg (cringe again) has decided that he is not going to in any way entertain any discussions with anti-vaxxers anymore. He’s not going to enter debate, he’s not going to try to show them the science or the facts and debate them. Instead, he’s going not allowing them a platform on any discussion he is involved in. Where he has previously permitted anti-vaxxers to share their views, he won’t be doing that anymore.

I like this approach. Previously when I have written about this topic, people disagree and put forward their ridiculous hippy-dippy delusions about the dangers behind vaccines. Not any more. I will be deleting any anti-vaxx comments on this blog from now on. This is a pro-vaccine place only. I believe the science. So science we shall speak.

What’s it going to take to stop anti-vaxxers?

According to this piece from the New York Times there is no stopping the anti-vaxx brigade because they are not willing to listen. Instead, they believe in conspiracy theories and their own ‘alternative’ facts with no foundation in science.

When a doctor advises against childhood vaccines…

This piece from Melbourne writer, Van Badham, is heartbreaking. Her mother had been advised by their family GP to not give Van the measles vaccine. Van caught measles at 17 and almost died.

Can I just add here, if your doctor is sympathetic to anti-vaxx views, find a new doctor (or nurse or any other HCP for that matter).

Measles in Europe

A recent piece in BMJ explains how measles cases have tripled from 2017 to 2018. That’s one year. More than 80,000 people in 47 European countries had measles in 2018.

A fall in type 1 diabetes and the rotavirus vaccine

A new study by Melbourne Researchers says that the drop in the number of children aged 0 – 4 years diagnosed with type 1 diabetes could be associated with the introduction of the rotavirus vaccine of Aussie infants. It’s the first time we’ve seen a fall in diagnosis rates since the 1980s.

Record-breaking measles cases in NSW (this is not something to be proud of)

Just this week, this article appeared in the Sydney Morning Herald telling of two babies contracting measles. They were too young to be vaccinated. There have been 29 cases of measles in Sydney since xmas and NSW is looking to have the highest rates of measles in five years. Measles – a vaccine-preventable disease.

Show this article next time you hear an anti-vaxxer selfishly claim their children are ‘perfectly healthy & don’t need to be poisoned by toxic vaccines’.

Ten year study shows that MMR vaccinated children LESS likely to develop autism

From Denmark: a ten year study which examined data on over 650,000 children showed that not only is there no link between MMR and autism, but children who were vaccinated were seven per cent less likely to be diagnosed with autism than children who were not vaccinated.

You think flu is not serious?

Dr Jen Gunter wrote this great piece where she shares her own experience of ‘flu as well as those from others who commented on twitter. The ‘flu is not a cold. It is not a little inconvenience. It can and does kill.

Smart kids; foolish parents

But perhaps my favourite story about vaccines lately is this one which tells of rebellious children defying their anti-vaxx parents by getting vaccinated. Let’s just remember that most of those parents preventing their children from being vaccinated probably didn’t have foolish parents and are, in fact, vaccinated themselves. But they think nothing of exposing their children to vaccine-preventable diseases, and putting others in the community at risk.

These teens are amazing and good on them for believing the science and fixing what their parents didn’t. Maybe there is hope…

Evil Mr Vaccine…

Diabetes and the flu-vaccine. It’s time.

I hate that almost every week scientists have to come out and debunk the latest claims made by some completely hopeless anti-vaxxer: some footballer’s wife is running workshops highlighting the (made up) dangers of vaccines and is telling anyone and everyone who’ll listen that she will not be vaccinating her unborn child; a former swimmer says that people should weigh up both sides and make up their own mind; a celebrity chef endorses anti-vaxx campaigners, (while at the same time advises against using sunscreen).

And every time something like this happens, scientists have to stop doing their important science work, and go on breakfast radio and TV to explain patiently why these comments from these village idiots are rubbish, and then defend their own work and the work of their colleagues.

There are very few people in our community who for medical reasons cannot be vaccinated, and the rest of us need to be to protect them, and other vulnerable populations. Herd immunity works. And so do vaccines. Just vaccinate. There is no debate.

Today I’m talking about cervical screening checks. Because yesterday, I had mine. (Oh, did I mention that I’m an over-sharer?)

Let’s be honest. No woman ever gets excited about having a cervical screen. At least, no woman I’ve ever met. Maybe if they handed out lollypops at the end, (or something more applicable for the area being screened?), we might get more excited, but as things go, rocking up for our scheduled cervical cancer screening is not really one of those things we anticipate with glee. (Or maybe you do. And if so – good for you!)

My OB/GYN – who is now purely my GYN because the OB part of me has shut up shop for good – called me (well, his receptionist did) while I was in Berlin. The call came at some ridiculous hour of the night, so I ignored it, rolled over and went back to sleep, making a note to return the call when I got back to Australia.

I knew that was I was well overdue for a check-up – I’d been thinking I needed to make an appointment and was also a little confused about the new screening procedure and process. It’s changed since my last screening. I knew that pap smears were a thing of the past and that a new cervical screening check had replaced it.

But I didn’t really understand about the change to timeframes or just what the new check was all about. So, I made, and prepared myself for, the appointment.

I’ve known my gynaecologist for a long time now – about seventeen years. He knows diabetes and pregnancy which was why I started seeing him. He was the one who I went to for all my pre-conception care and then he was my OB each time I was pregnant. He has seen me at my absolutely lowest as I dealt with the heartbreak and trauma of recurrent miscarriages. But he also was the one who handed me our daughter the day she was born, so he has seen me at my most elated, too.

This time, I walked in with absolutely no intention of talking about babies, other than mentioning that mine is now fourteen which obviously makes no sense because surely I am still only 36 and I had her when I was three days shy of 31. (This is a lie. No one believes it.) I was there to talk about how hopeless I was because I’d completely neglected thinking about needing a cervical screening check. And have the said check.

There is a reason that I continue to go back to the same doctors for seventeen years. It’s because they don’t judge, and they treat me as though I have a life outside the body part in which they specialise. (Which is good when seeing this particular doctor, because I am more than my vagina.) Before getting to the reason I was there, he asked me how I was and what I was up to. We spoke about the work I was doing. He asked specific questions about my health and asked me how I found the Dexcom that was clearly visible on my upper arm. We started to talk about DIYAPS, and how that was working for me. He wanted to know about my family and how they were, and what sort of a kid the tiny baby he delivered on that day back in November 1998 had become. (She reads a lot more now. And has more sassy opinions.)

Then I mentioned that I had been a little remiss in organising my cervical screening check and started to say how I was usually a lot better at this and that I always, always make sure my diabetes screening was up to date and that I NEVER miss an appointment with my ophthalmologist, but that this one had slipped through the cracks. He didn’t shake his head and tell me to be better. Instead he said, ’It’s great you’re here today. Life is busy and there is a lot going on.’ It may not be healthy to love your gynaecologist, but after that comment I remembered why I had always been so fond of him.

He then explained how the new screening worked, and why the changes were made. He spoke about what was involved today and how long it would take for me to get the results. ‘We call you whatever the result,’ he said and I realised that was a really useful piece of information. If I had a missed call from his rooms in seven to ten days’ time, not knowing that calling everyone was routine, I would have worried that something was wrong until I’d been able to speak to someone.

He started by taking my blood pressure. ‘Is your blood pressure usually okay when you have it checked?’ he asked. ‘Yep. Always fine. Why? Is it high?’ My heart rate was slightly elevated, and I was anxious. (See point above about no one wanting to have this particular screening check.) ‘A little,’ he said. ‘But I know that you’d be anxious about this. It’s nothing to worry about if you have recently had your BP done and it was okay.’ 

I have always appreciated how this doctor, when asking questions, explains why he is asking them. ‘Any changes to your period, bleeding in the middle of your cycle, or bleeding during or after sex?’ He asked, going through what each of these things could mean.

The rest of the examination took all of about 5 minutes. He explained everything that was going on, and I distracted myself during the bit where I had a piece of cold metal inside me by asking about the HPV vaccination.

I’m not sure if that was necessarily the best time to have a conversation about why it’s important to have this vaccine (there’s more about it here, including who the vaccine is for and when they should have it). He told me it protects against the types of HPV that cause around 70% of cervical cancer, as well as other cancers (vaginal, vulval, anal, throat and penile), and protects against genital warts.

We then both had a lot to say about our frustrations with anti-vax lunatics and their anti-science idiocy, and why Pete Evans should be sent to an island (one other than Australia) and left to his paleo devices where he can’t harm anyone else. (Thankfully the cold metal instrument has been removed, and I was covered up by a sheet again by this stage. We were both getting a little ranty and I was waving my hands around; being completely exposed could have made that awkward…)

When I was dressed and sitting opposite him again, he asked if I had any questions. I had a few, and he answered them clearly. I mentioned again that I would make sure that I had future checks as scheduled and he suggested I be less hard on myself.

He’s right, of course. Diabetes alone puts so much pressure on us – as well as all the screening we need to keep on  top of there is the daily stuff too. (I love that he understands diabetes and realises just what it takes to deal with it.) Add to it the other things we need to stay on top of – such as screening of our lady bits – and it’s no wonder that sometimes something will slip through to the keeper.

And of course, there are a number of other reasons that we delay or postpone having this particular check done. For some women, there can concern or embarrassment. Even if we know that the actual procedure takes only minutes, it’s not especially comfortable. And then there are concerns about the state of our lady garden. According to a 2018 survey by a British cancer charity, a third of women won’t make an appointment for a cervical screening if they haven’t waxed or shaved their pubic area, and are embarrassed about how their vulva looks. I could scoff and say how ridiculously shallow, but you bet that I have had that concern too.

I know that this, as with all screenings, is important because early detection of any changes means early treatment and that is always the best approach. And so, I’m trying to stop beating myself up for the fact that I was overdue getting this done and instead pat myself on the back for actually having made and kept the appointment. I’ve done my bit. I now wait for the results and then take it from there.

More information about cervical cancer screening here.

Click for source of image.

Welcome to January when suddenly the only thing that I seem to see on social media feeds, giant billboards around the city, and TV advertisements is details of weight loss programs. Because, of course, that’s what we should all be aspiring to, right? If we were happy to see the back of 2018 after a hard year, losing a few kilos will obviously set us on the track to eternal happiness in 2019.

Right?

Of course not.

Nevertheless, wellness gurus, celebrity chefs, local gyms, celebrity trainers, everyone who drinks green juice and has an Instagram account come into their own when January ticks over, heralding the birth of a new year and, while the fireworks are still bright in the sky, urging us to start a new (and completely unsustainable) diet, detox, and/or exercise plan to lose weight.

Under the guise of pressing us to be the best person we possibly can, they remind us that we have been slobs for all of December and need to shed weight because that will make us happy. Oh, and buy this teatox/12 week program/juice cleanse/lemon fast for a small monthly fee of $39. That’s not much, right? And what value can you put on your happiness, right? Lose weight; be happy. The equation is simple.

Except, it’s not. And when the emotional burden of diabetes is added to this – when there is something else that we are made to feel we need to fix – the start of the year suddenly doesn’t feel full of shiny and bright and new promise. It feels like we are about to fail. Yet again

I like the idea of stopping and hitting the reset button (oh – did you read yesterday’s post?) and if weight loss is your goal, then that’s fine. But we need to stop equating happiness and perfect health with a number on the scales. We need to stop being made to feel guilty because we may have eaten a little more than usual over the holiday period. And we need to stop being made to feel that we should be seeking redemption for our sins of enjoying the holiday period. We need to stop being sold the idea that the road to happiness and health is signposted by losing kilos

Because the reality is that all these messages actually add mental weight. And no one needs that shit in January. Or any time of the year.

But, I have found some ways to shed that weight.

You could start by getting of social media completely. But that’s as laughable to me as suggesting I should be running 5Ks a day and consuming only kale and kombucha. It is, however, worth acknowledging social media – actually, any media – is a fucking nightmare at this time of year, maybe even more so than at other times. But, there are some bright lights out there that, instead of suggesting that we are full of faults and problem areas that need fixing, encourage us to just damn well like (or even love!) who we are. Here are just some things you may want to check out:

Nina Mills is a Melbourne-based dietitian who just gets it. Her blog, Twitter and Insta feeds are well worth following for their no-nonsense approach to eating and anti-diet messaging. She nourishes the SoMe soul with delicious recipes and sensible ideas, and a healthy dose of self-deprecating humour too (her food fails posts are hilariously honest!). It is no secret that I have had very few positive experiences with dietitians – both personally and professionally – in my 20 years with diabetes, but had I met someone like Nina years ago, I would have a very different story to tell.

You can follow Nina at Feel Good Eating on Insta.

Body Posi Betes is run by my mate Georgie, who thankfully has returned from Paris and made Melbourne feel right again. The diabetes thread that weaves its way through her posts is life-affirming, as is the complete and utter refusal to subscribe to any sort of diet culture. She is sassy, sweary and fucking fabulous.

Start with Body Posi Betes on Insta.

Claire Christian is one of my kid’s favourite writers and her Insta stories are full of great ideas and strong feminist messages. She is a high school teacher as well, and if you have teenagers, (especially teenage daughters), check her out. (I have no issue with swearing…obviously…but if you do, you may find some of her posts a little confronting. But if you can push through that, she is just such a great role model for young girls, and 45 year old women too!)

Follow Claire on Insta here.

Watch Dumplin’ on Netflix. And then watch it again! It is so, so gorgeous. It’s completely PG, and totally appropriate for kids. Plus, Dolly!

It’s not hard to love Jameela Jamil, and her amazing #IWeigh campaign continues to remind women that we are so, so much more than a number on the scales. She tore strips through celebrity weight loss products at the end of last year with a hilarious video of her spruiking a (fake) detox program. Her posts are brilliant, she is brazenly feminist, and calls out any bullshit she sees.

Her Insta is here. And here’s what I wrote about the #IWeigh campaign last year.

Obviously, there are so many other great thing to check out, and if you have any suggestions, please share them in the comments. This is a great time to curate what and who we follow by removing anything that makes us feel that we have faults or need fixing. Because we don’t. There is nothing wrong with wanting to be better or to find ways to make ourselves feel happier and healthier. But shaming or guilting us into it, or focusing purely on how we look is not the way to happiness. That just weighs us down.

Ice cream is not a reason for guilt. Tastes good, though…

It’s Melbourne Cup Day today and I’m bound for Brisbane for the HIMSS Asia Pacific conference. I’m speaking in the consumer partnership track, which allows me to get on one of my high horses (Cup reference #1) to speak about the importance of including health ‘consumers’ in…well, in everything.

Right out of the gates (Cup reference #2) I will be speaking about how a health conference that doesn’t allow for people living with that health condition to attend is already not partnering properly.

I want to look at the word ‘partnership’, which I actually think is a bit of a misnomer most of the time in healthcare. There remains such an imbalance of power and representation in most cases of the development and delivery of services, activities and resources, yet partnership suggests that everyone is equal. I can’t count the number of times I have been ‘the’ consumer representative in a roomful of healthcare professionals, researchers, administrators, industry reps and policy makers. They will all be there in droves, and there I am a lone voice.

If I’m being honest, I think that the idea of partnership needs to be questioned, because that suggests that everyone’s voice should be equal. Perhaps it’s a little radical to think this way, but quite frankly, I don’t think everyone’s voice should be equal. I think the most amplified voices – yes voices – should be those of the end user – the consumer.

My talk is also going to highlight tokenism in consumer partnerships and engagement. The idea that ‘any consumer will do’ is rife. How do I know that?

Well, I get contacted every week asking me to be a consumer rep on something or other. Most times I say no and recommend someone better suited. Such as the time (just a few weeks ago) I was invited to sit on a committee looking at programs to support men with type 2 diabetes diagnosed in their 50s, living with erectile dysfunction? When I pointed out that finding a few men with type 2 diabetes diagnosed in their 50s would actually make sense, I was told that I would do a fine job representing them. Yeah – no I wouldn’t. Because I know nothing about being a man, being in my 50s, having type 2 diabetes, or erectile dysfunction. How’s that for a quadrella? (Cup reference #3)

But the one issue I want to focus on – because I think it actually is a super easy concept to grasp – is the issue of influence, or rather the consumer’s ‘power to influence’. This is a biggie because for me, it is the cornerstone of engagement, and it is actually quite easy to measure. We can have whatever framework in place – the policies, the procedures, the advisory boards and the teams dedicated to putting the consumer first – but if those consumers do not have the power to influence what is going on, they are being excluded from having any real power and we then we need to question if there is true partnership.

I keep coming back to this – I spoke about it at the co-design session at the Australasian Diabetes Congress this year. I have also written about it a lot here. And I talk about it a lot when I am speaking with organisations and industry about whether their so called engagement program is truly going to matter.

I’m not trying to oversimplify this – I understand there are a lot of factors to consider, and sometimes there is legislation and governance to work through. But governance can be restructured. As can legislation.

But maybe I am. Maybe I am trying to make it easy because too often there is fear and uncertainty about how to engage, and this leads to either things being done poorly. Or not at all. And to be honest, I’m not sure which one is worse.

I’m heading to Sydney this morning (it’s early…too early) for the Australasian Diabetes Advancements and Technologies Summit – ADATS, (follow along at #ADATS2018), which had me thinking about the conference last year where I spoke about Loop, scared a shitload of HCPs, was almost traumatised into never speaking again in public (almost – didn’t happen) and was happy to be branded non-compliant.

Today will be a far gentler experience – my role is as a member of the organising committee, and as a session chair. Surely no one will want to sue me for that. Right?

As I ponder that, and reminisce about last year’s talk, here are some links. So many links that I have been wanting to share. So, have a cuppa, have a read, and share stuff.

Also, being deliberately non-compliant is kind of fun…

(Disclosure first: My flights from Melbourne to Sydney are being covered by the National Association of Diabetes Centres (NADC), the organisers of ADATS. I am on the organising committee for the conference.)

_________________________________________

Finally DIYAPS makes it to the mainstream media in Aus

I’d heard of The Saturday Paper, (which was a surprise to the journalist who interviewed me), but apparently not all that many people have. It’s a weekly newspaper (somewhat unimaginatively named – it’s a paper and comes out each Saturday) with long-form articles. One of those articles was about DIYAPS and came about after journalist Michele Tyde heard about the Diabetes Australia DIYAPS Position Statement.

Read the article here.

Read the DIYAPS Position Statement here.

The body part is connected to the PWD

‘Talking about the “diabetic foot,” the “diabetic kidney,” or the “diabetic eye” suggests they are somehow separate from the person whose body actually hosts the diabetes. This language suggests the diabetes-complicated body part is more like a malfunctioning car part that needs service – if only we could be provided with a courtesy foot, eye, or kidney to use until our own is better!’

The language at ADA this year (all the way back in June…all the way over in Orlando) didn’t really set off too many alarm bells. Until we had a good look at the program. I wrote this piece with The Grumpy Pumper for diaTribe about how it seems that #LanguageMatters a whole load less when talking about diabetes-related complications…and that needs to change.

Conference blogs

It’s great to see the Ascensia Diabetes Care team continue to support diabetes bloggers by inviting them to write up their thoughts on diabetes conferences. The latest contribution is from Sascha Stiefeling (who blogs at Sugar Tweaks) where he gives some insights into the start of EASD. (It was written in German and translated into English.)

Oh – and here’s the post I wrote for them about the Australasian Diabetes Congress a couple of months ago. (I was not paid to write this, or supported by Ascensia to attend, but I did work with them on their Social Media Summit.) 

No weakness at all

On Mental Health Awareness Day this year, UK writer and poet David Gilbert wrote this beautiful post about the strength – not weakness – of living with mental illness.

How we are wrong about obesity

This piece about obesity is a must read. It talks about how weight bias from healthcare professionals and stigma often results in higher weight people avoiding going to the doctor because they fear discrimination, not being believed and being shamed.

More on weight stigma

And read this piece (also on diaTribe) about how weight stigma hurts people and affects health outcomes.

Keep Sight

This week, Diabetes Australia officially launched the first ever national eye screening program, Keep Sight. The program will make it easier for Aussies with diabetes to get their eyes checked. You can read about the program here (from when it was announced back in July).

Disclosure: I work at Diabetes Australia, but was not asked to write about this program. I’m doing so because it is important.

Your story is important

True champion of listening to ‘the patient’, Marie Ennis-O’Connor wrote this wonderful piece about the power of storytelling in healthcare.

Always be kind

I’m always fascinated to read stories from HCPs who write about their experiences on the other side of healthcare. Moving from care-giver to the one needing care can be life-changing. In this BMJ Opinion piece, health researcher Maria Kristiansen writes about how important compassion and kindness from healthcare professionals were for her and her family during her young son’s illness and death.

More on kindness (because we can never have enough)

The first sentence of this article in BMJ by Dr John Launer had me hooked: ‘I’m not a clever doctor, but I’m a kind one’. Have a read.

Diabetes in hospital

I know I’m not the only one to be terrified of needing to go into hospital, worrying about a lack of knowledge about type 1 diabetes treatment and my technology, and having to fight to maintain ownership of my own diabetes care. Adam Brown at diaTribe has written about his recent trip to A&E, surgery and subsequent recovery after his appendix ruptured. Lots of great tips for anyone who may wind up in hospital.

Digital diabetes

How can digital medicine and research, and artificial intelligence transform diabetes? That’s the question research scientist in diabetes, Dr Guy Fagherazzi, asks in his (open source) review in Science Direct that you can read here.

Bake these!

And finally…It’s nearly the weekend and if you have a spare 20 minutes, you really, really should think about baking these! They are crackled parcels of molasses, spice and all things nice and are, quite possibly, one of the best things I’ve ever baked.

Earlier this week, Professors Jane Speight (ACBRD) and Frans Pouwer (Southern Denmark University) published a blog post on the ACBRD site, with their wrap up of EASD, specifically, the lack of psychosocial sessions at the conference. In the piece, Jane and Frans quite rightly say:

‘Psychology is not an optional extra. If diabetes care is the seat of a three-legged stool, then it is supported by three legs: psychology/education, treatment/technology and complications screening. It seems ironic that so much funding, resource and effort is put into strengthening and promoting the treatment/technology and complications ‘legs’, while the psychology/education ‘leg’ remains short and weak.’

EASD is the largest diabetes meeting on the calendar this year. It draws a truly international audience, with healthcare professionals and researchers from all disciplines. It is possible to speak with endocrinologists, diabetes educators, allied health professionals, general practitioners, psychologists, and researchers from all spheres of the diabetes care spectrum.

And yet, it is undeniable that the conference has a true clinical focus, almost forgetting that diabetes does not only impact specific parts of the body (so, so much about the ‘diabetic foot’!) but the whole person (absolutely not enough on the ‘diabetic mind’!).

I am not for a moment saying that the scientific and clinical elements of diabetes should be removed from a diabetes conference, or that they are not important. But I am saying that by demonstrating ONLY this aspect of diabetes, the picture presented is very, very incomplete.

I have written before that this is a frustration of mine at EASD, along with the continued lack of ‘patient representation’ on the conference program. It astounds me that there are no advocates on the official program, giving the ‘lived experience’ standpoint to what is being discussed. With hours and hours of sessions focusing on complications, how valuable it would be to have a PWD who is living with complications standing up there to give a little perspective to all the science. And a psychologist to speak about how complications affect far more than the part of the body that has become…well, complicated.

I urge the organisers and program committee to step up, and find a way to fill in the gaps and start to present a far fuller and more complete picture of diabetes.

While this would involve including more focus on the behavioural side of diabetes with the relevant professionals on the program, it must also mean including PWD into the program – in a meaningful way. If it is too much of a leap to include PWD alongside HCPs in the scientific program, introduce a Living with Diabetes Stream as the IDF has done in their last four World Congresses. It can be done. It can be done well. (And I say that with full disclosure that I am leading the stream at the 2019 Congress and was deputy lead for the 2017 Congress, and spoke at the 2015 Congress in the LWD stream.)

The thing is, it would actually be very, very simple to include PWD in the EASD program because we are already there. This year in Berlin marked the seventh EASD conference I have been fortunate to attend. I have always gone because of satellite events designed specifically for PWD. Initially, these were run by Johnson & Johnson, and more recently Roche, who has taken the ‘patient engagement’ to a new level, running events with up to seventy bloggers. That’s seventy people who have a story to share about their own diabetes experiences.

And I know that many of those seventy people would want to talk about all aspects of living with diabetes, including the psychosocial impacts.

As a leading annual diabetes meeting, EASD could be better. It ticks a lot of boxes. But it could, quite easily, tick a whole lot more by being far more wholistic in its approach. Focus more on the behavioural side of diabetes. And have PWD front and centre where we belong. After all, we’re the ones all this information and research is meant to be benefitting.

DISCLOSURE

Roche Diabetes Care (Global) covered my (economy) travel and accommodation costs to attend their #DiabetesMeetup Blogger event at #EASD2018 and present at their media event the day before EASD. Roche Diabetes Care also assisted with providing me press registration to attend all areas of the EASD meeting. As always, my agreement to attend their blogger day and participate in their media event does not include any commitment from me, or expectation from them, to write about the company, the events or their products. 

With Jane Speight at EASD in Berlin.

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