I wrote this post on this day last year and today, when it came up in my TimeHop app reread it and realised it is a good one to consider at the beginning of the year as I’m trying to get myself in order. I’ve made some edits to some of the points due to changes I made last year in the way I manage my diabetes. (The original post can be found here.)

I suppose that I was reminded that being good at diabetes – something I’m afraid I miss the mark on completely quite often – does involve others who sometimes don’t necessarily understand what it is that I really need. And I can’t be annoyed if they don’t intrinsically know what I want and need if I can’t articulate it. This post was my attempt to do just that. 

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Sometimes, I’m a lousy person with diabetes (PWD). I am thoughtless and unclear about what I need, have ridiculous expectations of others – and myself, and am lazy. But I’m not always like that. And I think I know what I need to do to be better.

Being a better PWD is about being true to myself. It is also about reflecting on exactly what I need and I hope to get it.

  • I need to remember that diabetes is not going away
  • I need to remember that the here and now is just as important as the future
  • I need to remember that I don’t have to like diabetes, but I have to do diabetes
  • I need to remember that the diabetes support teams around me really only have my best interest at heart, and to go easy on them when I am feeling crap
  • I need to empty my bag of used glucose strips more frequently to stop the strip glitter effect that follows me wherever I go – edit: while this is true, I do have to admit to having far fewer strips in my bag these days due to my rather lax calibration technique
  • I need to remember that it is not anyone else’s job to understand what living with my brand of diabetes is all about
  • I need to remember that the frustrating and tiresome nature of diabetes is part of the deal
  • I need to be better at changing my pump line regularly – edit: even more so now that I am Looping and think about diabetes less than before.
  • I need my diabetes tasks to be more meaningful – quit the diabetes ennui and make smarter decisions
  • And I need to own those decisions
  • I need to see my endocrinologist – edit: actually, this one I managed to nail last year and even have an appointment booked in for a couple of months’ time!
  • I need to decide what I want to do with my current diabetes technology. There is nothing new coming onto the market that I want, but what about a DIY project to try something new? #OpenAPS anyone…? – edit: oh yeah. I started Looping….
  • Or, I need to work out how to convince the people at TSlim to launch their pump here in Australia – edit: even more relevant now after yesterday’s announcement that Animas is dropping out of the pump market in Australia
  • I need to check and adjust my basal rates
  • I need to do more reading about LCHF and decide if I want to take a more committed approach or continue with the somewhat half-arsed, but manageable and satisfactory way I’m doing it now – edit: sticking totally to the half-arsed way and happy about it!
  • I need to remind myself that my tribe is always there and ask for help when I need it
  • I need to make these!

And being a better PWD is knowing what I need from my HCPs and working out how to be clear about it, rather than expecting them to just know. (I forget that Legilimency is not actually something taught at medical school. #HarryPotterDigression)

So, if I was to sit down with my HCPs (or if they were to read my blog), this is what I would say:

  • I need you to listen
  • I need you to tell me what you need from me as well. Even though this is my diabetes and I am setting the agenda, I do understand that you have some outcomes that you would like to see as well. Talk to me about how they may be relevant to what I am needing and how we can work together to achieve what we both need
  • I need you to be open to new ideas and suggestions. My care is driven by me because, quite simply, I know my diabetes best. I was the one who instigated pump therapy, CGM, changes to my diet and all the other things I do to help live with diabetes – edit: And now, I’m the one who instigated Loop and built my own hybrid closed-loop system that has completely revolutionised by diabetes management. In language that you understand, my A1c is the best it’s ever been. Without lows. Again: without lows! Please come on this journey with me…
  • I need you to understand that you are but one piece of the puzzle that makes up my diabetes. It is certainly an important piece and the puzzle cannot be completed without you, but there are other pieces that are also important
  • I need you to remember that diabetes is not who I am, even though it is the reason you and I have been brought together
  • And to that – I need you to understand that I really wish we hadn’t been brought together because I hate living with diabetes – edit: actually, I don’t hate diabetes anymore. Don’t love it. Wish it would piss off, but as I write this, I’m kinda okay with it
  • I need you to remember that I set the rules to this diabetes game. And also, that there are no rules to this diabetes game – edit: that may be the smartest thing I have ever written. I’d like it on a t-shirt
  • I need you to understand that I feel very fortunate to have you involved in my care. I chose you because you are outstanding at what you, sparked an interest and are able to provide me what I need
  • I need you to know that I really want to please you. I know that is not my job – and I know that you don’t expect it – but I genuinely don’t want to disappoint you and I am sorry when I do
  • I want you to know that I respect and value your expertise and professionalism
  • I need you to know that I hope you respect and value mine too.

And being a better PWD is being clear to my loved ones (who have the unfortunate and unpleasant experience of seeing me all the time – at my diabetes best and my diabetes worst) and helping them understand that:

  • I need you to love me
  • I need you to nod your heads when I say that diabetes sucks
  • I need you to know I don’t need solutions when things are crap. But a back rub, an episode of Gilmore Girls or a trip to Brunetti will definitely make me feel better, even if they don’t actually fix the crapness
  • Kid – I need you to stop borrowing my striped clothes. And make me a cup of tea every morning and keep an endless supply of your awesome chocolate brownies available in the kitchen
  • Aaron – I like sparkly things and books. And somewhere, there is evidence proving that both these things have a positive impact on my diabetes. In lieu of such evidence, trust and indulge me!
  • I need you to know I am sorry I have brought diabetes into our  lives
  • I need you to know how grateful I am to have you, even when I am grumpy and pissed because I am low, or grumpy and pissed because I am high, or grumpy and pissed because I am me.
  • Edit: I need you to keep being the wonderful people you are. Please know that I know I am so lucky to have you supporting me. 
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These days, thanks to Loop, I think about diabetes a lot less on a daily basis. I guess it’s to be expected when suddenly my diabetes devices have become far more automated than previously which results in fewer button pushes, fewer reaches down my shirt to find my pump in my bra to make temp basal changes, or even boluses and fewer out of range numbers that need attention.

The downside of this (if there is a downside) is that I lose track of what’s going on.

Because diabetes is rarely front of mind, I’ve found it hard to remember when I did things such as pump line changes. One day during my holidays, as my CGM trace edged up inexplicably one day, I tried to troubleshoot why, but it wasn’t until I was drying myself off after showering that I became aware of how tender the site felt.

I stood there trying to remember when I had last changed the line, counting back the days, before I realised it had been almost a week. After swapping out the line for a new one and examining the site to make sure it wasn’t infected (it wasn’t – just a little red) I started setting a reminder in my phone so that I would remember when it was time for a change.

To be honest, the only times I can rely on thinking about diabetes these days are when that alarm goes off, or another alert reminding me that it’s time to refill my cartridge, restart my CGM sensor or change the battery in my pump. I’m completely dependent on those noisy reminder alarms to make sure I get things done, because my diabetes has become a little bit ‘out of mind, out of sight’.

It’s funny how quickly changes like these become the norm. And other routines have also been given an overhaul.

My waking habits, which always involved reaching for my phone to check the number on my Dex app, is different now. The other day, I came to realise that often I’d be awake, up and moving around for some time before remembering to check my glucose levels. In fact, often it wasn’t until I sat down for a coffee or something to eat that I bothered to glance down at my Apple Watch. I guess that’s what happens when all you see is a number in the 5s every single morning for six months. The novelty wears off and there seems to be little reason to actually check.

Of course, if I felt the gentle haptic of my watch, or vibration of my phone alerting me to an out of range number, I was right on it. But when there was no noise, I simply wasn’t listening to diabetes.

I suppose this is what I meant when I wrote this in my final post for last year: ‘I finish 2017 far less burdened by diabetes than I was at the beginning of the year.’ The burden of diabetes for me has been the monotony of it, the relentlessness of it, the way it permeates every part of my life. I would, quite easily, feel overcome and overwhelmed by these aspects of diabetes.

Without a doubt, that has changed. My new diabetes feels lighter and less encumbering. And with that, my attitude towards my diabetes has become somewhat kinder. I used to say I hated diabetes, but I think what I meant was that I hated how it was so present all the time.

These days, I feel less bitterness about my fucked up beta cells and the resulting long term health condition I have. Perhaps I feel ambivalent – but not in a ‘I’m over it and don’t care’ kind of way. No. Now, for the first time, I feel that diabetes and I are coexisting, if not happily, at least comfortably.

My day’s first though of diabetes is just before my first hit of caffeine. (Click photo for where to buy Casualty Girl pouch.)

My post at the end of last year about me limping to the end of 2017 was spot on. I don’t think I realised just how exhausted I was until the first day of my holidays when I slept until almost midday, not even getting up for a pee in the middle of the night. (Thank you, Loop!)

That pretty much set the tone for the next three weeks.

I’m not good at holiday holidays. You know, the ones where you spend all your time at home and just mooch around, losing track of which day of the week it is, and using public holidays as signposts for gentle reminders of how much time you have left until your return to the grind.

As it turns out, that was exactly the holiday I had and, most obviously, was exactly the holiday I needed. The initial pangs we all felt at not being in New York with friends, as we often are at this time of year, was eased thanks to visits from four different groups of NY mates all here either visiting family, or stopping by for their vacation. The brutal blizzards in that part of the world also made not being there a little easier, as instead, we managed to build up some vitamin D stores with leisurely walks around the neighbourhood, visiting favourite cafes or trying (unsuccessfully) to tire out the littlest dog at the park.

I spent time with my nose in books, scrolling through pointless social media feeds, trying to make sense of Trump (failed), binge watching Suits or just staring aimlessly at the sky.

I felt myself recalibrate, regroup and reboot until I knew that my breathing had slowed. The constant feeling of ‘what next’ gave way to ‘I’ll do it later’ and the most pressing thought was whether or not I really wanted to bake something right there and then. Usually, the answer was yes.

I realised that I started 2018 with a very different diabetes outlook to previous years. The same comfortable state in which I found myself once I started Looping seems to have moved in permanently. Perhaps it was having time to really notice it made me realise just how much my attitude to diabetes has changed.

I thought back to an early 2017 post last year where I decided that instead of making New Year’s resolutions I was going to have a word that became my guiding directive for the year. The word was ‘pause’ and I was going to do just that before taking on or tackling things.

Truthfully, I didn’t do too well with it all. I threw myself back into things with typical fervour, and the thing I’d hoped for by thinking ‘pause’ was that I would come to the end of the year and feel less overcome, exhausted and shattered.

Nothing changed and I think perhaps I’ve just come to the understanding that we all get like that at the end of the year.

Still no resolutions this year. But I do like the idea of having a word that I come back to when I need to feel centred. And it became clear and very obvious that my word for this year will be ‘focus’.

I don’t feel particularly unfocused. But I like the idea of a reminder to rein me back in when the distractions make it hard to concentrate on what’s important. Background noise can become overwhelming and losing the ability to stay focused and determined slips away all too easily.

And it’s a word that can mean lots of things. More focus on the diabetes issues that matter to me. Access and affordability to diabetes technologies, treatments and insulin will always be important to me both in my ‘real job’ and in my own advocacy efforts. Reducing diabetes stigma and ensuring language helps rather than harms people with diabetes. And peer support, because we need to know and feel that we are not alone. Plus, more focus on my family; more focus on ME.

We’ll see how it goes…

I’m back at work now: rejuvenated and ready to go. Happy New Year – it’s great to see you here!

Wearing stripes, carrying stripes, standing in front of stripes. Some things won’t change in 2018…

‘Grumps? Grumps? When are you writing for me?’

Last year, The Grumpy Pumper wrote a couple of posts for me in what was going to be semi-regular series called What Would Grumpy Do? Actually, the idea that it was going to be a semi-regular thing was news to Grumps, and because he doesn’t like to be told what to do, it’s been over a year between posts. 

Earlier in the month we were in Abu Dhabi at #IDF2017 together, and every second thing I said to him was a variation of ‘When are you writing for me again? Grumps? Grumps? Grumps? Hey, write something. Now! Grumps?’ As it turns out, four days of me asking the same thing yields results. Who knew?

So here’s Grumps’ recent diabetes complications story. and his efforts to get people talking about complications to reduce stigma.

Off you go, Sir Grump-a-lot…

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‘I’m afraid you have a diabetic complication Mr Pumper.’

(I’ve had the language matters talk, don’t panic)

How would you feel if you heard this? What would you do?

Well, at that point in time, I asked myself: What Would Grumpy Do?

To set the scene…

I had a bloody great hole in my foot.

I was at the podiatrist.

So, let’s face it, I did not fall off the chair in shock.

The conversation went something like this:

Grumps: What kind of complication? You can tell me straight. It’s my foot, right?

(Cue eye rolling by podiatrist. I don’t blame her. Dealing with me is a challenge at the best of times.)

Podiatrist: Yes. It’s an ulcer.

Grumps: Caused by the blister I told you about that burst, healed over but must have had some crap in the wound?

Podiatrist: Yes, that’s it.

Grumps: So it’s caused by my diabetes then?

Podiatrist: Oh no, not the blister, but your neuropathy means it will take longer to heal.

Grumps: So that big hole in my foot isn’t a complication of my diabetes; it’s complicated by my diabetes?

Podiatrist: Well. I guess so…

Me being me, I don’t care what it’s called, nor how I’m told, because if I’m totally honest it doesn’t bother me. Not much does. I’ll take whatever comes, deal with it and move on.

But I wanted to make a point. Things can be viewed very differently depending on who you are and how you feel about things. And how you feel about things can depend on how things are worded – that can massively influence things.

Anyway, to cut a short story long, a precautionary X-ray and a consultant later it was confirmed that there was no bone infection, which was good. It also showed that about a year ago I had broken two bones at the top of my foot and also smashed the joint in one of my toes – fuck knows how. (I remember a lot of swelling in the foot and bruising.)

Instead of healing, the bone had degenerated and gone ‘chalky’. Over time that hardened and went back to solid bone (as I understand it). So the toe joint isn’t a joint now, and the foot is slightly warped (just like my sense of humour). The Charcot (the chalky thing) is no longer active, but I am at risk of it happening again if I get another trauma to the foot.

All of which is good!

Why the hell would I think any of that was good?

The hole in my foot uncovered all the other stuff, so to be honest, I’m glad I got it. If I hadn’t, I would still not know. The Charcot isn’t active so there is nothing that needs to be fixed. I now know that if I get similar symptoms, or become aware of any trauma, I need to get it looked at ASAP. And I know the route to make sure that happens.

So, all good in my book.

I went home and did what any self-respecting Grumps would do: I waited until it was dinner time in the UK and then posted a gross picture of my foot for all to see. I described the issue and raised the subject of my complications.

This sparked a very good online discussion about compilations with other PWD talking about theirs and others seeing that they are not the only one with them. And there is no shame in having them. Sharing experiences and taking comfort from others; for me, that’s what peer support is about.

We are all in the same boat. It’s just that the boat is full of holes. If we try to bail out the incoming water on our own, at some point we will drown. It we help each other; we can keep our heads above the water.

I am not ashamed about my complications. I never will be!

I will Grumpily tell everyone that wants to listen, and post disgusting pics that pop up on your social media feeds just as you are about to tuck into your favourite meal.

I’m not sorry about this!

Complications are a hazard of what we have.

Not a failing of what we do.

#TalkAboutComplications

Live Long and Bolus

Grumps

Grumps’ snazzy new footwear.

Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here

Is anyone actually sprinting to the finish line of 2017? Or are you all limping, crawling and seriously prepared to default and just sit down where you are now, probably about fifty meters from the end and admit defeat?

That’s where I am. I’m conclusively collapsed somewhere near the end: I can see it – but have decided that, quite frankly, the effort it’s going to take for me to cross the line, get a participation ribbon and high five the finish line referee is just not worth it. And I don’t think I have it in me anyway.

So, here I am. At the end of a super busy year. But then all years are busy, right?

But it’s been a good year. A really good year, when I stop to think about it. (Which is what I am doing as I set up shop here at the not-quite-finish-line.)

Lots of highlights, so here’s a bit of a recap:

Kicking off the year at the ATTD conference and being inundated with diabetes technologies and wondering how and when they would actually make their way into the hands of people living with diabetes.

Learning the importance of reframing our stories to capture the positive, not only the tough parts of them – or rather, understanding that the tough parts of what we have to deal with are often positive. Nick Bowditch at HealtheVoices explained that so beautifully.

Being pulled back into why we do what we do with a chance encounter in a café and, in the same week having a technology reality check at the #DAdvocatesDay.

It certainly wasn’t a highlight, although the way the diabetes community came together to try to address the frustration of a health organisation trying to control information at #2017ADA was pretty damn awesome.

And still at #2017, language! Yes, language was on the agenda and this would probably be one of the all-time highlights of the year.

The 4Ts campaign during National Diabetes Week made a lot of people in the Australian diabetes community happy as Diabetes Australia’s awareness campaign highlighted the importance and urgency of HCPs and the community understanding the symptoms of type 1 diabetes.

Convening and being part of the DAPeoplesVoices at #ASDSADEA2017. Not only was I firmly amongst my tribe, but we provided a fantastic stream of information from the conference to people who couldn’t be there. Thanks to Mel, Frank and Ash for being part of it!

Celebrating 30 years of the NDSS and remembering why we are just so damn lucky here in Australia.

Being involved in the IDF2017 Congress – as Deputy Lead of the Living with Diabetes Stream of the LWD stream, chairing a number of sessions and presenting in the Peer Support Symposium. There could not have been a better way to end the year!

But undoubtedly, for me personally, the most important, impactful and significant thing to have happened to me in 2017 has been starting to Loop. Without a doubt, this technology has revolutionised every aspect of my diabetes, from the way I sleep, eat and live. I finish 2017 far less burdened by diabetes than I was at the beginning of the year. I measure time in range rather than A1c to understand why it is that I feel so much better.

I have claimed the label of deliberately non-compliant as my own, and I wear it proudly, strongly, and most, most appreciatively.

So, thank you to everyone who has dropped by here, commented or emailed me to share your story. I continue to write here because of the support and love I get from people (I know, selfish) and am so grateful to everyone who reads Diabetogenic.

I’m going to take a break and will be back sometime in January. Between now and then, I’ll be baking away all my stresses and exhaustion! Much love – and baked goods – to you all during the festive season.

How’s your Christmas shopping going? Have you managed to get it all done and wrapped everything up in beautiful vintage newspaper with contrasting artisanal twine? Have you hand-addressed all the gifts on mistletoe leaves, and had Christmas elves bless the bounty? Have you stuffed everyone’s stockings with scented candles, socks and undies, and photo frames?

Yeah, me neither!

Starting to panic? About to head to a frantically busy shopping centre with a million other disorganised and stressed shoppers? Or have you already popped into a local chemist to clear them out of their toiletries packs?

Well, put down the bath bomb! I can help. And the best bit – you can do it all from your kitchen table, while lounging on the sofa, or sipping an iced latte at your local café, which is what I am doing as I am writing this little post.

Children and adults are dying because they can’t access insulin. I don’t mean to rain down on your Christmas parade or tangle your tinsel, but this is the cold harsh truth. It is happening every single day. I know I don’t have to remind most people who read this blog that insulin is not a new or experimental treatment. You all know that it’s been around for close to 100 years.

Insulin should be easy to come by for every single person in the world who needs it to treat their diabetes, but unfortunately, that’s not the case.

I don’t know about you, but this fact makes me angry and despair.  The idea that people are dying because they cannot access the very drug that I can easily pick up at any chemist in my neighbourhood actually hurts my brain.

But what if you could make a difference and actually get insulin to those in need AND skip department store queues as you line up to pay for some gift that will probably end up being re-gifted in next year’s office Secret Santa? (Don’t look at me like that – we’ve all done it!)

Well, you can, and it’s as simple as making a donation to a charity that is helping to get insulin into the hands – and bodies – of those who need it most. You can make gifts in the name of any or all of your friends and family, and I bet that they will understand why you have forsaken the novelty cup you usually buy them to do this instead.

When anyone asks me what I want for Christmas – and even if they don’t ask – I say ‘Please make a donation to either Insulin for Life or Life for a Child’.

My parents are doing that for me this year, and truly, it is the best present they could give me – I couldn’t be more pleased.

Click image to donate to Insulin for Life

 

Click image to donate to Life for a Child.

No one loses here. You avoid screaming kids and whimpering adults at shopping centres, no one gets a pointless gift they have to pretend to have always wanted. And someone is given the gift of insulin, or rather, the gift of life.

Now that’s the spirit of Christmas!

After lunch on the first day of the Congress, the Living with Diabetes stream got all technical with a couple of sessions on diabetes tech.

The first was billed as a debate: #WeAreWaiting versus #WeAreNotWaiting, and the speakers in the session were Annie Astle (found on the interwebs as Understudy Pancreas) and Dana Lewis (found on the interwebs as Dana Lewis, because everyone knows Dana).

I loved this idea of this session, which was to give different perspectives about how people with diabetes are making decisions about the technology the choose – or choose not – to use.

I was acting as Chair and used my time when introducing the session and the speakers to highlight that the ‘My Diabetes, My Rules’ idea was going to be really emphasised in the next hour or so.

It’s hard not to get swept up in a movement as exciting, interesting and ground-breaking as the #WeAreNotWaiting movement. There are a lot of people speaking about it, and a lot of people extolling the benefits of using their DIY system. I know I need to rein in just how evangelical I am at times about my Looping experience, because I am so effusive about how transformative it has been for me.

And when Dana speaks, it’s even more apparent just how revolutionary the technology is, and how remarkable the evolution of diabetes DIY is in such a regulated and conservative ‘industry’.

But it’s not for everyone. And we need to hear from those people too.

Annie shared the story of her teenage daughter living with type 1 diabetes, Pumplette, and explained why her family is waiting and not jumping on board the DIY APS bandwagon. Let’s be clear here, this is not because they are luddites; they actually do embrace technology. Pumplette starting on a pump at the tiny age of one-year-old. (Annie showed a photo of baby Pumplette with her pump which was more than half the length of her leg.) Plus, Pumplette uses CGM with share capabilities, allowing Annie to stay connected to what’s going on with her daughter even while eight hours away. (Or, as my daughter and Pumplette like to say during their regular conversations ‘While our mothers abandon us’. Digression, but Annie, introducing these girls has paid dividends for our mother guilt, hasn’t it?)

While embracing commercially available technologies, Pumplette has chosen to not use Loop or Open APS.

And that sentence I have just written says it all. The decision to not use a DIY system is fundamentally Pumplette’s decision. What Annie wants is not relevant. Pumplette’s diabetes; Pumplette’s rules.

I have long admired Annie’s parenting approach. She has three daughters who are the most delightful, considerate, smart, sassy, talented, funny girls I’ve had the good fortune to get to know. I shouldn’t have been surprised when we met on the streets of NYC last year that they would be like this – I’d been reading Annie’s blog and had met her a number of times, and these great girls are the result of having been given freedom and independence while being supported, loved and nurtured. And this approach extends to Pumplette’s diabetes.

It’s really hard as a parent not to push what we want onto our kids. I know that I catch myself all the time from steering my kid in a particular direction because I think it’s the right one (or it’s what I want), when I know that really, she needs to make the decisions herself and the best thing I can do is step back, watch, support and encourage, stepping in when asked. I can only imagine how much more difficult this would be if with kids with diabetes.

Annie’s talk at the Congress showed me once again that she continues to parent at expert level. Her girls are so lucky.

Annie’s talk can be heard here (you’ll need to have a Facebook account to view it).

Disclosure

 

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.

…And this disclosure too

Annie is one of my dearest friends. I love her to pieces. But even though she is one of my favourite people in the world, everything I have written here is true and I am certainly not the only person to feel this way about her!

 

I was thrilled and honoured to speak in the symposium at #IDF2017 all about peer support. I shared the program with Chris Aldred, better known to all as The Grumpy Pumper, and advocate Dr Phylissa Deroze (you can – and should – find her as @not_defeated on Twitter).

Speakers in the peer support symposium at #IDF2017

When we were putting together the program for the symposium, the idea was that it would offer an overview of what peer support can look like, beginning with how diabetes organisations and community health groups can facilitate and offer a variety of peer support options, and rounding up with the perspectives of people with diabetes who provide and participate in peer support.

I spoke about how diabetes organisations in Australia, through the NDSS, offer a suite of peer support choices, urging the audience to think beyond the usual face-to-face or, increasingly, online peer support group. Activities such as camps for children and adolescents with diabetes, information events, education sessions (such as DAFNE) are all avenues for peer support. Peer support need not only take the form of a group of people sitting in a (real or virtual) room talking about diabetes in a structured or unstructured way. It can happen just by putting people with diabetes in the same space.

I’d never met Phylissa before, but I quickly learnt she is the definition of the word determined. She spoke eloquently about her own type 2 diabetes diagnosis which was anything but ideal. Instead of feeling beaten and overcome by how she had been let down by the healthcare system, she turned to her peers, finding a group that not only helped her diabetes management, but also gave her confidence to live well with diabetes.

Phylissa now facilitates an in-person support group for women with diabetes in Al Ain in the UAE, and is a huge supporter of, and believer in, the power and importance of peer to peer engagement and support in diabetes management. You can read more about Phylissa’s work on her website here.

Grumps, in true Grumps style, gave a talk about how his approach to peer support is more organic and certainly not especially structured. Although involved in some more planned peer support, he believes the most effective way he can support others with diabetes is on an individual, more informal way. Kind of like this:

Click image to see tweet.

And as if putting into practise his talk at the Congress, last week he started a conversation on Twitter about his own recent experiences of being diagnosed with an ulcer in his foot opening the door for people to speak about diabetes complications.

Click image to see tweet.

The way we speak about diabetes-related complications is often flawed. The first we hear of them is around diagnosis and they are held over us as a threat of the bad things to come if we don’t do as we are told. They are also presented to us with the equation of: Well-managed-diabetes + doing-what-the-doctors-say = no complications.

Unfortunately, it’s not that easy.

From then on, complications are spoken of in hushed-voices or accusations. Blame is apportioned to those who develop them: obviously, they failed to take care of themselves.

And because of this, for many people, the diagnosis of a diabetes-related complication is accompanied by guilt, shame and feelings of failure when really, the response should be offers of support, the best care possible and links to others going through the same thing. Peer support.

Back to Grumps’ raising diabetes complications on Twitter. After sharing his own story, suggested that we should not be ashamed to talk about complications.

That was the catalyst others needed to begin volunteering their own stories of complications diagnoses. Suddenly, people were openly speaking about diabetes complications in a matter-of-fact, open way – almost as if speaking about the weather. Some offered heartfelt sympathies, others shared tips and tricks that help them. But the overall sentiments were those of support and camaraderie.

The recurring theme of the peer support symposium at the Congress was that we need to find others we can connect with in a safe space so we can speak about the things that matter to us. It’s not the role of any organisation or HCP to set the agenda – the agenda needs to be fluid and follow whatever people with diabetes need.

END NOTE

While we’re talking peer support, how great is it to see that the weekly OzDOC tweetchat is getting a reprise this week, with Bionic Wookiee, David Burren at the helm. Drop by if you are free at the usual time: Tuesday evening at 8.30pm (AEDT). I’ll be there!

Disclosure

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered my travel and accommodation costs and provided me with registration to attend the Congress.

This week has been brutal. I arrived home from the IDF Congress very late on Saturday night after a very long journey from Abu Dhabi and since then, my body clock has had no idea where I am, despite my actual body being very much in the midst of Melbourne’s sometimes sweltering summer. My mind is all over the shop, sleep is something that happens if it wants (which it doesn’t really) and, for some inexplicable reason, I’m off coffee.

So, yes, I am a delight to be around right now. Want to hang out?

My time at the Congress, however, was one of those weeks that makes me feel so fortunate and privileged to do the job I do and have afforded to me the opportunities that come with it. Apart from a very full schedule of outstanding talks from leaders in the diabetes world, the congress was packed with advocates from around the world. I was totally with my tribe.

That’s me talking about diabetes and peer support!

There is lots to write about the Congress and I’ll do so in bits and pieces over the coming few weeks, but there were some stand out moments that I wanted to touch on and thought I’d try to do that now. (I’ve already started this blog post about four thousand, three hundred and twenty-eight times, so who knows how we’ll go here…)

Dot points – because they seem to take less energy and mental bandwidth…

  • This is the only diabetes conference primarily aimed at healthcare professionals that has a stream completely and utterly dedicated to ‘living with diabetes’ (LWD). This is, in equal measure, brilliant and problematic. It’s brilliant because it means that there is a real opportunity for people with diabetes to be on the speaker program, have their accommodation, travel and registration funded, and be part of the conversation at the actual meeting. But it can be problematic because it means that often, there are not all that many HCPs in attendance at the LWD sessions. I believe that one way to improve this situation is to include PWD in other sessions as well as have an exclusive stream. More on that another time, perhaps.

Click image to see tweet.

  • So with that in mind, if your HCP was at the Congress, I’d be asking them which LWD stream sessions they saw and have a stern talking to them if they reply with ‘not a one…’ Hopefully they will be more like UK Consultant Diabetologist, Reza Zaidi who not only attended a number of the LWD sessions, but also tweeted throughout them and asked questions.

(Click image to see tweet)

  • I patted a falcon (not a euphemism). There were falcons at the Congress. I am not sure why they were there. But obviously, I was terrified. I tried to overcome my fear of birds by being brave and patting one. I am still scared of birds.

  • There was a language session in the LWD stream (of course), but it was clear that a few of the exhibitors, presenters and those putting together posters for presentation could do with a refresher course on not using the word ‘compliant’. Call me, folks. I can help.
  • There was a fascinating discussion during the language session when it was explained by someone asking a question that the word for ‘diabetes’ in Japanese is literally translated as Sugar Urine Disease. And yes – you bet that adds to the stigma of diabetes…
  • And one final language point. There was a lot of talk about needing to ‘battle’, ‘fight’, ‘combat’ and ‘challenge’ diabetes as though this is a war. I’m not sure that this is a particularly useful way to think about it all.

Click image to see tweet.

  • Getting a break from the Congress proved almost impossible. So I was so grateful to the diaTribe Foundation for forcing us out of the conference centre and into an Art Gallery with one of their Art Walk series events. We got a guided tour of the brand new (as in, open for less than a month) Abu Dhabi Louvre. Stunning!

The amazing Abu Dhabi Louvre at sunset

  • For some reason, the IDF put me up in the middle of nowhere on a golf course. Perhaps they were hoping I would take walks. Or improve my swing. I did neither of these things.
  • I am more than used to getting asked about the ‘thing’ on my arm. My Dexcom sensor and transmitter are quite obvious and people are curious. I almost have come to expect it and I am happy to answer questions as long as they are asked respectfully. I don’t, however, expect this at at a diabetes conference. And yet, that happened over a dozen times. But possibly, the most surreal experience was stepping onto the Dexcom stand in the exhibition hall and having a few of the sales reps nearly tripping over themselves to ask what it was, how it worked, what it felt like and why it was on my arm. And then they wanted to see the iPhone and Apple Watch app and ask more questions, suggesting that Congress attendees visiting the stand ask questions of me and another person sporting one of their devices. Obviously, I should be on commission…
  • Diabetes conference exhibition halls can be confusing places. There are stands offering products that seem to be so far removed from diabetes that surely the exhibitors have accidentally turned up the wrong week for the wrong conference. I’m still confused by what the fluffy dolphin (pictured here with Annie, Georgie, Grumps and me) has to do with diabetes or what was happening on this stand.

Dolphins and diabetes… join the dots.

  • The Abu Dhabi National Exhibition Centre (ADNEC) might look like pretty much every other conference and exhibition centre I’ve ever been to (they all do), but jeez, it was certainly the largest I’ve ever been to. It was, in fact, quite cavernous and a lot of the time seemed quite empty, despite there being over 8,000 attendees. All that space, and still nowhere to get a decent coffee.
  • I chaired a really important session about diabetes complications. It was great to have an open, frank and honest discussion about living with complications and how they impact on the lives of people with diabetes. (Although, I could have done without the clip from Steel Magnolias to introduce the session on complications in pregnancy.)
  • Finally, it was so lovely to see the wonderful Wim Wienjen’s legacy on show during the hypoglycaemia talk. The book he authored alongside Daniela Rojas Jimenez is due for publication soon.

That’s it in dot points for today. I’ll be back soon writing more about the Congress. (I guess four thousand, three hundred and twenty-nine is a charm….)

Disclosure

I was the Deputy Lead for the Living with Diabetes Stream, and an invited speaker at the 2017 IDF Congress. The International Diabetes Federation covered by travel and accommodation costs and provided me with registration to attend the Congress. 

Last week, I received an email informing me that the weekly #OzDOC tweet chats would be coming to a close. Obviously, I thought of it as a sad announcement, but what a fantastic five years and five months of weekly conversations and support!

It takes a lot of dedication to run a diabetes support group, and the regular tweet chat format of #OzDOC meant that it was a once-a-week commitment, requiring a roster of interesting and engaging topics, and someone to direct the conversation and make sure that there was someone welcoming anyone who wanted to participate each and every week.

It takes work, time and effort, and, in most cases, support groups are run by volunteers who already have jobs and busy lives and families. The support group administration and activities are run in someone’s own time.

But despite what it takes – the planning, the commitment and the energy – there has been someone there since the beginning, taking responsibility to make sure that the #OzDOC tweet chat bus kept going. And that person is Kim Henshaw.

Kim talking #OzDOC at last year’s #MayoInOz meeting.

When the #OzDOC tweet chats started, there were three of us involved: Kim, Simon and me. We took it in turns each week to moderate the chat, come up with the questions and run ideas by each other. But circumstances change, and first I, then Simon needed to step back from being part of the moderating team.

Kim stayed on and has been the one responsible for herding the #OzDOC kittens and creating a safe, fun, supportive, reassuring online space for people in the Australian diabetes community to come together on Twitter each week. With a team of moderators, the chats continued.

Kim’s commitment to #OzDOC could never be questioned. In the very first tweet chat, back in July 2012, she was sent to Twitter jail for tweeting and retweeting too many times in the hour! She wanted to share as widely as she could, acknowledge as many comments from others as possible and encourage conversation at every turn. Until she was cut off from Twitter:

Oops…

Kim never wavered from her pledge to build and support the community. I shared the power of #OzDOC every chance I had – any time I was speaking about diabetes peer support, #OzDOC got a mention; I’ve written about it here over and over and over again. And I defended online channels and Twitter as a support platform, using #OzDOC as an example of just how a community could be developed.

But times change, and with Kim stepping aside and no one else available to take on the coordination of the group, next week will be the final time that the @OzDiabetesOC account is used for the #OzDOC hour of power.

I wanted to say a huge thank you to everyone who has been involved in the OzDOC tweet chats for the last (almost) five and a half years. I have met some incredible people through the chats, made some wonderful friends and learnt so, so much.

And mostly, I wanted to say thank you to Kim for delicately, dedicatedly and devotedly running the group. What a wonderful thing you created, Kim. Well done! Enjoy your quiet Tuesday nights – you deserve it!

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