Diabetogenic

Disconnect

September 7, 2016 in Advocacy, Awareness, Communication, Diabetes, Healthcare team, Real life | 1 comment

This photo* sums up why I do what I do, and why many people think I sound like a broken record, with a vocabulary of a mere seven words. Specifically, these seven words: ‘Have you spoken to people with diabetes?’

Because so often, the answer is ‘No’. Or ‘No – we’ll be doing that after we have had some meetings.‘ Or ‘Yes – we spoke to you‘ at which point I remind them that I pointed out when they did indeed speak to me that they should find other people with diabetes to speak with. Because I am but one person and speak for no one other than me. (Or, perhaps, another woman in her 40s who loves Nutella, boots, coffee, lives in inner-Melbourne, waves her hands around madly while speaking reallyreallyreallyreally fast, can recite Marx Bros movies from start to end, has what some would call an irrational fear of birds (and butterflies), can sing (badly) pretty much any song from the 1980s, has over 25 striped t-shirts in her cupboard and is battling an eleven year old daughter who has decided that she too loves stripes and wants to borrow all her mother’s clothes.)

Most people are not like that. (Fortunately.)

Anyway, this picture also demonstrates that those who have the privilege of designing services, activities, programs, settings for people with diabetes often miss the point – perhaps not by much, but nonetheless, they miss it. It’s usually because they forgot to ask us, or asked as too late, or didn’t keep coming back and asking and checking in. And then, when we don’t use what they design, we are branded ‘non-compliant’ or ‘disengaged‘ or ‘not interested in our health’, when the truth of the matter is that their design (without our input) just doesn’t fit our needs.

I have given so many talks and written so many pieces about this. But perhaps all I need is this on a t-shirt, tattooed to my arm (forehead?) and on the back of my business cards. Don’t design before speaking to the user. It’s actually really easy!

(*I don’t know the source of this photo, but if anyone does, please let me know so I can credit appropriately.)

The experiment continues

September 6, 2016 in Diabetes, Food, Health, Real life | 12 comments

There are few topics guaranteed to polarise and cause debate like food and what we are eating. Our choice of what we put in our mouths will always generate comments, whether invited (and welcome) or not. And add diabetes to the mix and it gets even worse. From ‘Should you be eating that’ to ‘Here, this is low fat, low sugar, high cardboard content’, we get it all!

I wrote a couple of months ago about how I had unintentionally started eating low(er) carb, and shared my thoughts on how that was going. I’ve also made a few comments on my social media feeds about some things I’d been trying. Interestingly, and as a result, I’ve been contacted by complete and utter strangers wanting to give me their thoughts. This in itself is not that odd; I frequently have messages from people I don’t know about my blog.

What is different here though, is the tone that is often used. And it is not always particularly positive. I’ve been accused from jumping on a bandwagon, loving Pete Evans (that one made me laugh for about four days straight!), letting down the team and being untrue to my Italian heritage. I ignored them all.

I’m a few months in now and couldn’t really care less what people think. I am trying something to try to improve my own diabetes management, not anyone else’s and I’m certainly not even considering suggesting that this is something others might like to try. The My Diabetes My Rules thing possibly applies here more than anywhere else.

The experiment has been continuing, and what I have been most interested in is not only the results regarding my diabetes, but I also really wanted to know if this change in my hearting habits is truly sustainable.

So, a couple of things I want to say to begin with. I have not adopted low carb high fat as a way of life for me. I am ad hoc at best. There are some things that I refuse to change and I have no problem with that at all. This lack of real commitment has drawn criticism from a few people who also thought they would message me to say that if I wasn’t doing low carb high fat properly that I was a fraud and should just shut up. I ignored them too. (That’s the beauty of writing your own blog – you don’t have to listen to people!)

The sustainability issue seems to have worked for me by muddling through the best way I can, making sure that I never say no to something I really want to eat. And perhaps, that was the ‘Aha’ moment for me. There is no right way to do this – except the way that works for me.

For example: I love bread. Love it. Adore it. Love. Love. Love. But there is bread and there is bread. When I eat bread, I only eat bloody good bread. Like a beautiful, chewy seeded sourdough from Baker D Chirico, bought fresh from the bakery and slathered with lashings of real butter – preferably French; always salted.

I’ve decided that there is no point eating a piece of highly processed square bread out of a packet that is not freshly baked and is full of preservatives. So I don’t eat it.

My breakfast most mornings continues to be a milky coffee. I’m nor cutting out the milk or the sugar, even though I know both do raise my BGLs. But I manage that as well as I can, hoping for no spike within half an hour of consumption. I am not good in the mornings without that first (and often second) coffee. And for the love of all that is good and those around me, it’s best that I just have my latte and get on with it.

Overcoming the mindset of needing to eat carbs has been a huge challenge for me. HUGE. It is possibly a combination of 18 years of conditioning about the need to include carbs in my meals and also generally loving carb-based foods.

But there are options. And as I work out what they are, meals are becoming easier.

Where I think I have been getting the biggest bang for my buck is adapting evening meals to be lower carb. This has resulted in far nicer glucose levels in the evenings, overnight and, subsequently, in the mornings. For me, it’s complete
ly and utterly undeniable that not loading with carbs equals diabetes that is far easier and nicer to try and manage.

So, here are just a few things that I’ve prepared recently to give you an idea of what I have been doing to lower my carb intake. Often, my evening meal is zero carbs which is generally what I have been aiming for as this offers the best post-prandial results.

For the colder months, the oven has been working overtime, cooking braises and stews for hours at a time. Or one pan wonders like this that combine chicken, chorizo, lemon, garlic and spinach.

I always love to serve them with mashed potatoes, but have tried mashed cauliflower instead. I refused to even entertain the thought of mashed cauli until recently, when I decided to try it and have found it it delicious. (I either steam or bake it first
and then pulverise it with a stick blender with salted butter (lots) and milk. Or cream if I have some in the fridge.) I can eat a huge bowl of it and my glucose levels do not shift a smidge. (I know this to be true because I have, on several occasions, eaten nothing but a huge bowl of it for dinner and then watched the flat line of my CGM.)

Actually, cauliflower has become a favourite food. And it’s insanely cheap at the moment. Roasted cauli has become another staple. My favourite way is to cut out the core and bake it whole, drizzled with olive oil, oregano and fresh garlic. But cauliflower is one of those veggies that simply soaks up flavours, so anything goes. I’ve also tried lemon, garlic and rosemary which works a treat. (I’ve worked out that steaming the cauli in the microwave for about 5 minutes first cuts the cooking time down, so usually I do that before shoving it in the oven.)

I made low carb gnocchi one night with hazelnut meal instead of flour and tossed them through a burnt butter and sage sauce, with tiny pieces of crispy fried pancetta sprinkled on top.

Do I feel as though I missing out on anything? Not really. Because if I want something, I still eat it. No foods are considered taboo, there are still no ‘good’ or bad’ foods. I still bake heaps and sample everything I make. (Case in point – these amazing squidgy choc-chip cookies I made the other day that are delicious!)

But what I do know is that minimising riding the blood glucose rollercoaster makes me feel better and this is by far the easiest way I have ever known to do that. It’s not perfect and there are still un-explained highs and lows. There is no name for this way of eating. But it is working for me, so for now, I’ll stick to it.

If I started differently…

August 31, 2016 in Communication, Diabetes, Diagnosis, Health, Real life, Wellbeing | 8 comments

There is a dance I do with diabetes each and every day. I praise, celebrate and highlight the good; I avoid, shut out and ignore the bad. The things that scare me are pushed away – as deep as they can go. When they threaten to rise to the surface, I do the equivalent of sticking my fingers in my ears and start chanting ‘la, la, la’ so they recede to where they belong. Out of sight. Out of mind.

I’ve done this for as long as I’ve had diabetes. From day one, I pushed away the ugly and scary images of diabetes complications. I conveniently ignored the warnings and threats. Obviously. Because no one wants to be scared or warned or threatened the day they find out they have a life-long chronic health condition. Or ever.

I am scared. Diabetes scares me a lot. It always has, but for some reason, it is more at the moment. I don’t know why. Nothing has changed. There has not been a frightening experience or a noticeable change in anything. But as days and weeks and months and years as a person with diabetes gets crossed off some imaginary calendar, I am suddenly feeling that it is a countdown to where the really difficult things start.

I worry about what each passing hour is doing to my body and to my mind. If I’m being particularly forgetful, I wonder if it is because my head is so full of diabetes considerations that there is no room for a synonym for fear (dread, anxiety, terror, dismay alarm….) or recalling what day my kid has library each week.

But thinking about it more, I think the fear comes from the lies we are sold about our diabetes. I was promised the day I was diagnosed by a lovely, but most likely completely out of touch doctor, that diabetes is a matter of maths and that if you do the equations properly, it can be easily controlled.

Diabetes can’t be controlled, and with each moment of failure – and there are many and they are constant – I have feared the consequences. And I fear diabetes. With each missed calculation or out-of-range number or confusion about how the hell this thing really works, I see failure. And fear.

Diabetes is not a matter of maths, and the idea that I can control it results in a constant state of high alert as I pretend to be a body part that, when working, is pretty damn perfect. I am not perfect. In any way. And neither is the way I manage my diabetes. It’s messed up. And I’m messed up about it.

And now, as always, there are the fears. And they seem bigger and bolder all the time. I fear diabetes-related complications – long- and short-term. I fear losing the ability to take care of myself and care for others. I fear diabetes becoming so intrusive that I am unable to do anything else. And I fear diabetes becoming the first, last and only thing others think about when they see me. Perhaps most of all, I fear diabetes becoming the first, last and only thing I think about when I see me…

I wonder just how differently I would feel about diabetes – the known and unknown – if I was told at diagnosis that I would get this wrong more times than I got it right. And that was perfectly okay, understandable and acceptable. I wonder how much less significant the feelings of failure would be. And how much more in check my fears would be.

9 March, 1998. 37 days before diagnosis.

The big sell

August 30, 2016 in Conferences, Devices, Diabetes, Health, Healthcare team, Social media, technology | 2 comments

I chaired an interesting session at the Roche Educators’ Day last week (it’s the kick-off event to ADS ADEA each year, held the day before the official conference starts) presented by Sydney endocrinologist Professor Steven Boyages.

The session was called ‘A connected ecosystem for healthcare professionals and their patients.’ (We’ll just ignore the use of the word ‘their’ because, quite frankly, I don’t belong to my HCP, but this post is not about language, so let’s move on….)

Steven started by highlighting there is nowhere to hide when it comes to the online world and diabetes (or any healthcare, really) with this statement: ‘Be prepared: patients will already have looked you up on line.’ (Indeed – the first thing I did when asked to chair his session was Google Professor Steven Boyages. Then I found him on Twitter!) He went on to dismiss any luddite attitudes with the comment ‘If I can do it, you can do it!’

Other important points included that healthcare has – and continues – to move away from being a patriarchal system where what the doctor says goes. And that technology is here to stay. In the case of diabetes, more and more people are expecting their HCP to be as tech savvy as we are, not only knowing about the latest technology, but also being able to use it.

But perhaps the most controversial part of Steven’s talk was when he asked this question: ‘What business are we in?’ Voices across the audience responded with ‘Healthcare’, ‘Caring for people’, and even just ‘People’. He shook his head and paused. ‘No,’ he said. ‘We’re in the business of selling.’

And therein lies the challenge. Because when you look at it, it’s kind of true. HCPs are selling something – health. And to get there, we often need to make changes or do things we don’t particularly like. And that is a bloody hard sell. No one wants to follow directions all the time – especially if those directions include things like jabbing ourselves, or eating lots of green things. (In fact, Steven gave the example of GPs being asked to follow the same BGL monitoring they expect of PWD. Only two out of twenty managed to do it for the week of the trial.)

There needs to be a more attractive proposition and that has to incorporate the tools designed to make diabetes management easier. Those tools include devices and technology as well as communication channels. We expect our connectivity to be outside the 9 – 5 hours of the traditional office and, as Steven said, if we can’t get help from our healthcare team, we’ll find someone available. We already bypass HCPs for most of our decision making – whether it be through the use of technology or advice from peers.

Healthcare has been transformed in recent years, and it’s just the beginning. There will be more and more changes, and more and more expected of the system and those working within it. Which is why everyone needs to get smarter about using the devices, the structures and the data.

During the discussion time at the end of Steven’s talk, someone said, ‘But surely all these new apps and programs add time and we don’t have time.’ They were referring to the program that is used with a new blood glucose monitor. I was shocked at that comment, because it misses one of the key benefits to diabetes technology, so I was pleased with how Steven replied. ‘Not at all,’ he said. ‘In fact, if we are using the technology properly and empowering PWD to use it properly, they will be able to do a lot more of the trouble shooting themselves.’

Knowing how to use devices, understand the data and respond to the information has meant that I rarely need to get in touch with my HCPs outside of when I am actually having a consultation with them. Most of the time, I manage myself. Because I have the tools available and know how to use them.

Being in the business of selling health is indeed tough. The products being sold are not shiny new cars or the latest mobile phones. It’s often not something tangible that can be held up as something aspirational. But health? Surely that is something we all want. We just need some smarter ways to sell it – so that we are willing to buy!

DISCLAIMER

I was invited to chair two sessions at the Roche Educators Day last Tuesday at the ADS ADEA conference. Roche kindly funded my travel to the Gold Coast (my return travel and accommodation were covered by my work). Roche also registered me for the ADS ADEA conference, covering related costs. The also gave me a lovely box of chocolates, most of which I ate myself without sharing, because: chocolate!

SoMe, HCPs and OzDOC at #adsadea2016

August 29, 2016 in Awareness, Conferences, Diabetes, DOC, Engagement, Peer support, Social media, technology | 2 comments

I’d already returned home to Melbourne on Friday morning when Dr Kevin Lee gave his talk on on healthcare social media. I wrote about his planning for the talk here after Kevin engaged OzDOC for some advice on important topics to cover. I’m really sorry I wasn’t there to hear his presentation, although felt there in spirit after I saw this! (Thanks, Ash!)

I reckon that this is the fourth or fifth year the ADS ADEA have spoken about social media and how healthcare professionals can use it safely. I remember seeing diabetes educator Natalie Wischer give a great talk back in 2012 highlighting the different social media platforms available and how they are being used in diabetes. This was just after we launched the weekly #OzDOC tweetchats and I stood up and gave a plug for our weekly online get-together, urging the HCPs in the room to have a look – to lurk – and see what we were so excited about.

I gave a talk the next year (that’s the photo Dr Kevin Lee used in his talk), encouraging HCPs to engage with the online community. And last year at the Roche Educators Day, I ran two practical workshops about how HCPs could use SoMe to connect, enhance and support diabetes care.

It has been on the agenda for a few years, and now it is time to stop talking about it and actually do it.

As mentioned last week, Symplur highlighted just who was talking online at the conference. As usual, the ACBRD team was doing a stellar job live tweeting sessions and promoting their excellent work. And, of course, advocates on the ground were doing their (our?) best to share and engage. There were over 2.7 million impressions on Twitter for the duration of the conference, which is certainly an increase from previous years.

I would really love the ADS and ADEA to be proactive about encouraging social media. I would love for them to look at what happened a couple of weeks ago at the American Association of Diabetes Educators conference and see how meaningful social media interaction between people with diabetes and healthcare professionals can and does happen. Safely. The real engagement and collaboration between the organising professional body and advocates saw impressions on Twitter of over 17.5 million, and over 860 people engaging online.

So, how do we go here in Australia about increasing online presence and discussion? In the room for Dr Kevin Lee’s talk were two of Australia’s most prolific and well-known patient advocates – both high-level users of HCSM. I’m referring to Kim Henshaw and Ashley Ng. I wasn’t in the room, yet was actively participating, re-tweeting and engaging – as were many others during sessions that I was sitting in earlier in the week. Having more consumers in sessions provides that connection with PWD not at the conference to hear and see what is going on.

I also think there was, perhaps, a missed opportunity at the session speaking about social media use. Having an advocate on the panel or chairing the session (and remember: Kim and Ashley were in the room!) would have added significant value to the discussion. Dr Kevin Lee went straight to the source when he was putting together his talk. Think about how great it could have been had one or two of those who helped him pull together his information were on the stage elaborating on their comments. Perhaps next year.

#ADSADEA2016 highlight pics

August 26, 2016 in Advocacy, Awareness, Communication, Conferences, Diabetes, Health, Peer support, Real life, Social media | Leave a comment

I’m back home after three days on the Gold Coast for part of this year’s Australia Diabetes Society – Australian Diabetes Educators Association conference. More to come next week, when I’ll try to pull together my very messy notes.

For today, here are some pictures!

As I took the stage to chair one of two sessions at the Roche Educators Day in Tuesday, I realised I had already been up for seven hours. It was only 11am. Sentences were difficult until my fourth coffee of the day kicked in!

On the job. Professor Steven Boyages’ talk: A connected ecosystem for healthcare professionals & their patients’ was full of practical tips about using technology to support people with diabetes.

This was the moment I opened the new NDSS Diabetes and Emotional Health Handbook (for health professionals supporting people with diabetes) and I saw Diabetogenic on page 24! Thanks for capturing, Professor Jane Speight!

Proud moment!

Advocates running amok. We actually behaved ourselves quite well. Mostly.

Although, we were mighty busy! Three of the top four influencers at the conference happen to be consumer advocates, sharing information from the conference specifically with the intention of reaching other PWD who could not be in the room.

Martha Funnell used this in her talk on day one. Sums up many, many days!

Rather proud of this special young lass. Here’s Ashley presenting on her work focussing on the needs of young people with type 1 diabetes.

This is a combination of jet lag and exhaustion. (Jet lag belonged to Harriet.)

The NDSS stand looked very bright thanks to these beautiful resources from the Young People with Diabetes Program.

And another proud moment. Kim’s outstanding work on the national roll out of Mastering Diabetes means this resource is in the hands of those who need it most: children with type 1 diabetes, their families and schools. Well done, Kim! (And I’m holding Moving on Up which I am equally proud of!)

Spot the diabetes devices….

Gold Coast.

Proper wrap up coming next week. Enjoy your weekend. I know I certainly will! (But you can play catch up by checking out all the #ADSADEA2016 tweets.)

Driving diabetes tech

August 22, 2016 in Devices, Diabetes, Driving, Real life | 1 comment

My first car was a 1970s Fiat 128. It was bright yellow (‘limone’) and was my pride and joy. It cost me under $2,000 back in 1993 and it remains the coolest car I have ever driven.

I longingly think back to the days of driving around in a little zippy car that was bright and fun. Other Fiat drivers would toot their little horns when they saw me on the road, and I would raise my hand in a friendly wave of vintage-car solidarity.

But it was very basic. There was absolutely nothing fancy about this car. In fact, today, it would struggle to pass a road-worthy check.

I had to keep a little container of spare fuses in the glove box because the electrics were shot. When it rained, the wipers would stop working. (Useful, I know!) As water leaked through the bonnet and onto my shoes, the wiper fuse would blow after sparking dramatically. I became incredibly efficient at reaching over and into the glove box stash for a new fuse, removing the dead one from the fuse box located just under the steering wheel, and replacing it with one that would get my wipers swiping again. All while continuing to drive through the rain, squinting through the water droplets on the windscreen until the wipers sprung back into action and I could see properly again.

Oil needed to be checked daily as it would frequently leak from the engine, and I was terrified of blowing the head gasket if I let the oil tank run dry.

The speedometer read in MPH, so I had used specks of Liquid Paper to mark 60kms and 100kms in a lame endeavour to remain within the speed limit – something that I only did rarely anyway.

I developed enviable muscles in my upper arm steering the little thing because power steering hadn’t been invented when this car was built.

And, of course, it was a manual car, because automatic cars were for wimps who didn’t know how to drive. This idea was beaten into me by my cousins who taught me to drive on the winding Kew Boulevard near home with no instructions other than ‘Don’t brake around corners. And don’t go below 60KPH’. I learnt to drive with the attitude and confidence of a Roman taxi driver.

I grew up being driven around in Fiats and Lancias. Even now, my dad drives an Alfa Romeo. So does my sister. And most of my extended family. These days, when I drive up to family gatherings in my sensible German-made car, they look at me with pity, and then turn away as they continue to look at their stylish reflections in the stylish windows of their stylish Italian cars.

The kidlet has already decided that her first car will be a Fiat Cinquecento in pale blue. I think she is ashamed and embarrassed to be seen in my boring and decidedly uncool silver Merc, preferring a zippy little Italian number so she can legitimately shout obscenities at cars driving too slow on the road while waving her hands at them. (#HerMothersDaughter)

These days, I drive an automatic car that pretty much does everything for me. It alerts and alarms and warns me if there is anything likely to interfere with my driving. It reminds me when it needs servicing, and is easy as easy to drive. Everything is programmed and instinctive, and perfectly set out, in brilliant, efficient, modern and safe German order.

In fact, my car today operates much like the diabetes tech I use: the latest equipment; the most efficient. I was an early adopter of pump therapy, one of the first people to start using CGM here in Australia, and have always liked to have the newest and snazziest BGL meter in the little Marimekko purse in my handbag.

I have no sentimental feelings towards any of my tech – I’m more than happy to ditch whatever I am using as soon as something newer, faster, brighter, smarter comes along.

I can’t for a moment imagine wanting to go back to using diabetes tech from 1970 (was there any diabetes tech in the 1970s?), but the thought of my mid-seventies Fiat makes me swoon. It was also a time before diabetes. Maybe the rose coloured glasses that are firmly placed on my face when thinking about my Fiat, also reflect a time when I didn’t need technology to keep me alive.

The other day, I saw a little yellow Fiat like the first one I owned. They are pretty rare these days and I get incredibly excited when I see one. I was in my car, stopped at a set of lights, and there, in my perfectly aligned, safety-glass rear-view mirror, I saw a flash of yellow. The Fiat pulled up next to me on the passenger side of my car. There in the driver’s seat was a woman about my age. She looked over at me and I smiled.

I flashed back to being 19 years old, driving around Carlton feeling like the coolest kid ever, without a care in the world. I didn’t have to think or worry about diabetes then. I didn’t have to check my BGL before starting the engine. Or make sure I had a supply of hypo foods hidden away. I didn’t have to wonder if I was going low on a long trip and pull over and check my glucose levels to make sure I was safe to keep driving.

In fact, the only thing I had to check before I got in the car was that I looked sharp and cool. Oh and that I had enough fuses in the glovebox for the fifteen-minute drive to Uni!

22 years ago! My gorgeous little Fiat 128. And me looking like an extra from ‘Friends’ in my 1990s jeans!

Interweb Jumble #18

August 18, 2016 in Diabetes, DOC, Health, Language, Peer support, Stigma | 1 comment

So many things on my radar at the moment. Here is just a taste!

Gila Monster and diabetes

Over the weekend, federal health minister, Sussan Ley announced the drug Bydureon would be listed on the PBS from 1 September 2016. Bydureon is a once-weekly injection used in conjunction with oral medications for people with type 2 diabetes.

Fun fact: Bydureon is the brand name for exenatide, which is a synthetic form of a substance found in the saliva of a lizard – the Gila Monster. (Please can we talk about how someone worked out that this would be a good treatment for diabetes?)

News from ACBRD

The team from the Australian Centre for Behavioural Research in Diabetes don’t sleep. At least, I am pretty sure they don’t. My office is on the same floor as them and I can tell you that I’ve never seen any of them asleep at their desk. Instead, they work really hard and produce things like these:

The latest about the MILES youth survey – the survey methods and characteristics – was published this week.

Centre Foundation Director, Professor Jane Speight, is straight talking at the best of times, and her commissioned article published on Monday in the Medical Journal of Australia pulls no punches in putting forward a strong case highlighting the need for behavioural innovation in the treatment of type 2 diabetes.

Dr Jessica Browne from the Centre has been leading work on diabetes and stigma, and this piece published recently in Diabetes Care is about the development of the Type 2 Diabetes Stigma Assessment Scale.

Over-achievers the lot of them. And how grateful I am! (If any of you are reading this, stop it now and get back to work!)

AADE / DSMA / diaTribe / Language

I cannot even begin to express how excited I was last week to see so much focus on and discussion about diabetes and language at last week’s American Association of Diabetes Educators conference.

I sat in my office in Melbourne last Friday morning in tears as on the other side of the world in San Diego (where it was Thursday evening) Cherise Shockley directed a tweet chat about language and diabetes. (And a huge thanks to Cherise for reaching out before the chat!)

In this piece from diaTribe, Kelly Close also wrote about language. Check out this BRILLIANT ‘Diabetes: Starting the Conversation’ infographic. I love this SO much!!

Rachel Soong – Diabetes Infographic @DiaTriibeNews

Molly’s blog

I am always on the lookout for diabetes blogs to read and share and this one is just brilliant! Molly Schreiber’s blog, And Then You’re at Jax, is about living with not only type 1 diabetes, but also rheumatoid arthritis. (Another one of us who collects autoimmune conditions…)

For beautiful, sensitive and honest writing, this is where it’s at! Check it out here.

ADS ADEA next week

Next week is the Australian Diabetes Society – Australian Diabetes Educators Association Annual Scientific Meeting on the Gold Coast. Program is live here.

I’ll be writing and tweeting from there for a couple of days next week. Keep an eye out on the #adsadea2016 hashtag to follow along!

New resources for young people from the NDSS

There is little more satisfying that seeing the end result of something that has taken a lot of effort, time and expertise. I am thrilled to show off these beautiful resources that have been produced out of the NDSS Young People with Diabetes Program that I manage as part of my day job.

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They look beautiful (the graphic designer is an absolute gem!) but even more importantly, they are full of important and useful information

An online version of Mastering Diabetes can be found here.

And an online version of Moving On Up can be found here.

More about the inclusiveness of the DOC…

My post about the DOC from earlier in the week has generated a lot of really interesting and valuable comment, both on this blog, on Twitter and Facebook and with many messages sent to me privately. Thanks to everyone who has contributed and, mostly, thanks to everyone for being so positive and respectful in their comments.

The purpose for writing was to try to encourage a discussion about how and why some people feel more included than others. I know this is not the first time this has come up and I doubt it will be the last.

I have noticed some common themes in how people feel and am trying to write something about that, but keep feeling clumsy and inarticulate. I’ll keep trying and see if I can make sense of anything – mostly in my head!

Banjos, banjos, banjos

Last week I went to two concerts at the stunning Melbourne Recital Centre. Both showcased banjo players and both were brilliant. One of the concerts was TWO banjo players and nothing more. I don’t know who I am anymore…

But I can’t stop listening to this at work.

And this.

The Melbourne Recital Centre stage ready for Punch Brothers.

Welcome or not?

August 16, 2016 in Diabetes, DOC, Peer support, Real life, Social media | 10 comments

I’ve been interested to read a few things lately on Twitter about the DOC not being a particularly welcoming environment. I am both saddened and surprised to hear that some feel that way, because I have always found the community to be very, very supportive and welcoming. Perhaps I am fortunate, or perhaps I have just found – and engage with – people who are friendly and happy to embrace new people in the community.

I’m unsure if feeling unwelcome is because there is a sense that the community may be a little like a high school clique. There are people who have known each other many years in this space, so they have a comfortable and easy banter as they share stories and inside jokes. I know that when I started, I was worried about that, but anytime I tried to engage, I found nothing other than friendly responses.

When I first walked into the DOC playground a few years ago now, I was considering starting a blog after years of reading what others were saying about their lives with diabetes. I’d lurked around a few online platforms to see how people interacted and what people said.

Then, one day, I decided I would join a tweet chat, and I tentatively said ‘hello’ to the #DSMA world. The rest is history and now I am a regular contributor and participant – both online and off – in the community.

But it did take me a while to understand the lay of the land and to get a handle on online communication. Trying to adequately put across a point in 140 characters or fewer leaves little room for qualifying comments, so often it’s only the bare bones that can be offered. This can sometimes leave people feeling a little taken aback at the directness of discussions.

I am, by nature, very direct. I take the ‘tell-me-what-I-need-to-know-and-leave-it-at-that’ approach, so Twitter is a perfect platform for me. Say what I want and get out! But I know that sometimes, I come across as being very direct; some may even say confrontational. People who meet me after having only engaged on Twitter say they are surprised that I am a lot warmer in real life that online. (I never know whether to apologise or say thanks to that…)

I had to learn that just because people had differing opinions didn’t mean that they were attacking me, or that I wasn’t welcome in the discussion. In fact, some of the people I respect most in this community are people who I don’t usually agree with. They challenge me to think about things differently and to step out of my comfort zone. I’ve engaged in some really robust and heated discussions about different aspects of diabetes. As long as it is done with respect, (and an understanding that an opposing opinion isn’t a character flaw!), I’m happy to not agree.

And, possibly most importantly, I learnt that I didn’t need to love everyone in the community. I’ve written about that before, and how it came as a huge relief when I realised that I wasn’t going to be friends with everyone; there would be some people I just didn’t really feel any connection to – just as there are many who don’t gel with me.

The DOC is a big community; there are many of us. And when there is a community, there will always be people who are more vocal and more active. But they are not the only people in the community. It really does come down to finding people where there is some sort of synergy, or some way to connect. Just like in real life!

So what’s the take away from this? I hate for people to feel that they can’t be part of the community because they have a different view to others. I have not come across another person in the DOC who I agree with all the time. But equally, I’ve not ever had someone attack me for having a different opinion to them. (Trolls excluded in that last comment, because trolling is attacking and just not necessary.)

I guess the struggle is that when you have a lot of very passionate people given a microphone and a stage, we get very, very worked up at times and defend our position fervently, challenging those who don’t agree, building alliances with those who do. We can be a vocal bunch, we like to be heard and listened to, and we want to defend, defend, defend what we say. I am guilty – if that is the right word – of being and doing all these things.

But I genuinely do want to hear from everyone. I don’t have to agree, or even like, what you are saying, but I want to hear it. Any community is stronger with diversity of opinion, experience and outlook. And the community is weaker when people do not feel that they are free to share their thoughts.

The sex talk

August 10, 2016 in Communication, Diabetes, Health, Real life | 7 comments

I had a call the other day from one of my favourite diabetes HCPs who is writing about diabetes and female sexual health. I wanted to shout ‘Halle-fucking-luiah!’ but didn’t because I am polite and never swear.

Anyway. The reason I was so excited to hear this is because when it comes to diabetes and sex, women rarely get a look in. Let me reframe that. When it comes to information about diabetes and sexual health, women rarely get a look in. (Hopefully women with diabetes who are wanting sex are getting plenty of looks in…so to speak…Yeah, this is not going to be awkward at all, is it?)

When talking about the complications of diabetes, erectile dysfunction*** frequently is mentioned. It is actually one of the things that often get men to the doctor because, well, because…erectile dysfunction. There is information about it and it is a well acknowledged complication of diabetes in men.

But women also report problems with sexual function, yet there is very little information about it and it is spoken about very, very rarely. Or, when it is, it’s discussed around changes in sexual function relating to menopause, which may be an issue for all women – diabetes or not. I guess the thinking is that ‘this is when it is likely to be a problem, so let’s talk about it now’, which doesn’t really help those who may have concerns with sex and sexual function earlier than menopause.

So today, let’s talk about women’s health and diabetes – all of it, including the sex stuff.

(For the record, there is no kissing and telling in this piece. There will be no personal sharing of sex stories. This is for everyone’s benefit! Plus, I learnt that it is not cool to discuss my sex life in a public forum after I once mentioned in a talk to a group of first year med students that I hypo pretty much every time after sex, and then made some silly comment about it being because my partner was so good in bed. This would have been fine if it all stayed in the room. The next night, when out for dinner, a group of Uni students came up to me and told me that they had been at my talk the day before and it was great. Then they looked at my husband who was innocently eating a plate of pasta and one of them said ‘Well done, mate.’ I was mortified. Anyway, let’s move on…)

So, what is out there now for women who want some information about diabetes and sex? Well, while working at Diabetes Victoria we developed a nifty and gorgeous looking booklet which talks about contraception choices. It’s called Sexual Health and Contraceptive Choices for Young Women with Type 1 Diabetes, and I can’t for the life of me find it online, but if you can get a copy, it’s terrific!

There are also some great Australian resources available on diabetes and pregnancy – both for women with type 1 and type 2 diabetes – which provide information about pre-conception planning as well as what happens after conception, during the pregnancy, during delivery and post-partem.

There is some (limited) information about diabetes and breastfeeding. (So wish there had been more eleven years ago because, seriously, I bumbled my way through for almost 24 months and it was horrid at times, diabetes-wise…)

But where is the stuff about everyday diabetes and women’s health and sex – not necessary tied up with trying to get pregnant. (We’ll ignore the ‘tied up’ comment there, okay?)

On the day I was diagnosed, a lovely diabetes educator told me that sex is exercise. Exercise often causes hypos. Hypos are not fun. Not fun kills the sex stuff. Moral of story – keep jelly beans beside bed. I was terrified that I was going to pass out during sex and that it was going to be unpleasant for everyone involved. (Not that there would be a cast of thousands…)

Yawn – it was boring information and it made me think that in future, sex was going to very unsexy. What I wanted to hear was ‘you absolutely can still have sex and, if you want to, you absolutely should. There are some things you might want to consider such as the possibility of going low… I’m talking about your blood sugar, get your mind out of the gutter, Renza, and wipe that smile off your face… so Nutella body paint is a good idea.’

Now that would have made me smile, think of Nutella as a medical necessity and therefore how diabetes now justified me keeping a jar of Nutella by the bed. And on the kitchen table. In the bathroom… basically anywhere! As an emergency contingency, of course.

No one ever spoke to me about what orgasms may do to my BGL. Nor was I told much (in fact, anything!) about how high BGLs might impact on sexual function.

And then there is the minefield that is body image and diabetes, and thinking about how we feel about ourselves and its impact on how much we want to have sex. Or how it makes us feel when we are actually having sex.

Plus, the visible signs of out so-called invisible illness impact on how we feel about undressing in front of someone. I have scars all over my abdomen and hips from heeling pump sites. There is usually a CGM sensor strapped to my arm and a pump cannula in my tummy or hip. There are dregs of tape from old sensors and sites and sometimes tiny bruises. There are tubes and a little vibrating machine (pump, people…I’m talking about my pump).

All of these things point to the fact that I am not perfect and that my body is not perfect and that I need devices and drugs to keep me ticking along. This makes me feel crap at times, wonder what my partner is thinking and want to hide all the reminders that I am not a perfect woman away. This sucks even in my situation where I am married and have had the same partner since diagnosis. Add to that the idea of exposing and explaining all this to someone new and you bet that will impact on how one feels about one’s body and the very idea of sex.

I remember being warned a million times about how women with diabetes MUST PLAN PREGNANCY. And this is excellent advice. However, it made me so terrified of getting pregnant with a sub-perfect A1c. I learnt that fear is an absolute libido-killer. Even when pregnancy would have been welcomed, I was terrified to fall pregnant before I’d been given the green light by my endo.

…which for a while made me feel like there were more than just the two of us in the room trying to make a baby when we were…well…trying to make a baby.

My diabetes loomed overhead, and every moment, I was petrified of my BGL. I started pondering ridiculous things like ‘If I conceive right now and my BGL is not in range, what will that mean? Is it possible that my baby may not have eyelashes if that happens?’ Way to go being drawn out of the moment and into a weird space of imagining babies without eyelashes and how they would hate me forever and ever, and never be able to wear mascara.

So, who do you talk about if you want to have a chat about diabetes and sex? I have never ever been asked about my sexual health from any of my healthcare professionals. Of course there have been discussions about contraception and pregnancy planning and actually being pregnant. But no one has ever said ‘Does your diabetes in any way impact on how you feel about sex? Or do you think diabetes might impact on actually having sex?’

For the record, (and this is a personal bit), I did find that my attitude to sex changed after I was diagnosed. I am sure that was connected to how I felt about my body, so there was some psychological stuff I needed (and continue) to work through, but there was also a noticeable difference in actual function and how I felt. I couldn’t find any information about it, so naturally, thought it was just me.

Of course, it wasn’t. And as soon as I spoke to a group of women the same age as me who were all experiencing similar things, I felt heaps better. But it took me a long time to find those women and feel comfortable speaking about it (yay for prosecco!).

I don’t really have any answers in this, but I wanted to write to start a discussion. I know of many women who say that they believe diabetes has an impact on their sex life – both physically and emotionally. Also, I have come to understand that if it is an issue for one, it is usually an issue for many. Anything anyone want to share? Feel free to do so – anonymously if easier.

***LANGUAGE DIGRESSION

Erectile DYSFUNCTION? Can we please come up with a different term for this? Dysfunction sounds like failure – or at least like a penis has failed. It has not.