You may not have noticed, but the festive season is upon us. (Actually, according to Woolies, the festive season has been upon us since the first week of September which was when I first saw mince pies on their shelves. And as Louden Wainwright III says ‘It’s a season, it’s a marathon….’ Sorry; digression.)

Anyway, it’s the festive season and with it comes lots of messaging about eating with diabetes during this time of the year. Now, I’d like to leave my diabetes behind whilst eating during the holidays, but I’ve come to learn that diabetes is a shit and doesn’t work that way. Because, diabetes IS for Christmas….and every other bloody day of the year as well. Happy holidays!

I saw an article this morning about how to keep your eating and drinking in check during Xmas and other parties, and by the time I finished reading, I was weeping uncontrollably and wanted to shoot myself. (Except not really because I’m a huge supporter of gun control and don’t own a gun.) I also wanted a drink, but it was 6.45am and I was feeling the judge-y eyes of the writer staring at me and the Moscow Mule I was about to make for breakfast.

All articles about diabetes and festive-season-eating demand limiting everything – alcohol, food, happiness. Quite frankly, limiting alcohol at family gatherings is not an option for many people, which seems to be lost in the horrific and laughable suggestion of taking your own water to water down drinks. (I lost the will to live at that suggestion.)

Obviously, a blow-out is best avoided, but that is wise even if you don’t have diabetes. There is nothing worse than feeling as though you literally cannot move from the sofa – mostly because it means you could be stuck sitting next to a distant relative who wants to tell you, in detail, about their recent adventure in passing kidney stones, or (worse) about their neighbour who died from diabetes complications. Diabetes – the gift that keeps on giving.

So, here are some of the things I’ll be doing to survive the next few weeks.

  • Acknowledge that this time of year is about food and that is okay. This is definitely the case for my family, and I am already counting down the days until I gorge myself on my mother’s freshly made zippoli.
  • Throw any thoughts of guilt out the window (along with suggestions of BYO H2O).
  • Make a game out of my CGM by seeing if I can spell out any swear words in the ain’t no mountain high enough/valley low enough trace.
  • Remember that even though I have diabetes, I have every right to enjoy whatever I feel like eating. Or don’t feel like eating. The low(er) carb thing may or may not stick over the festive period. Obviously, my mother’s zippoli are carb- and fat-laden parcels of perfection, so the low(er) carb thing can fuck right off once they are set down in front of me, but I probably will still avoid other carb-y things because dealing with high glucose levels or inadvertently overdosing on insulin does not a festive occasion make.
  • Seriously, give me a huge bowl of cherries for dessert and I am a happy chicken. (The non-watered-down alcohol has probably helped get me to that state, but cherries also make me undeniably happy.)
  • Brush up on my responses to ’Should you be eating that?’, which (thankfully) I probably won’t need to use anyway. Funny how I only ever needed to hit someone once over the head with a spoon after they asked me that…
  • Find red and green Sharpies and write ‘My Diabetes; My Rules’ in festive script on the inside of my hand to remind me to do whatever works for me. And to shove in the face of anyone who does actually ask ‘Should you be eating that?’
  • Thank the Xmas angels that Brunetti in Carlton is open on Xmas morning, meaning that we can make the ten-minute dash there, drink coffee and eat pastries before the onslaught of family, food and festivities.
  • Make a donation to a diabetes-related charity because not everyone gets to decide if they will use extra insulin to cover the second slice of passionfruit pav. Here are three ideas:

Spare a Rose, Save a Child

T1International

Insulin for Life Global

This blog is not about giving advice, but I am going to give some now as I believe this is possibly one of the best ways to survive until the end of the year:

Don’t read any articles telling you to eat nothing but cardboard or watered-down grog. Or suggesting you take your own plate of crudités to parties. I don’t care that it’s a French word, it just means carrot sticks. And having spent the festive season in France, I can tell you no one was serving carrot sticks for the family Xmas dinner. Plus, if I’d taken my own, I probably would have been mocked in French, and not been allowed to drink any of the delicious non-watered-down red wine or bûche de Noël for dessert.

Here’s some Louden Wainwright III. He makes everything better. (Bonus points if you know his character in M*A*S*H…without consulting Dr Google for the answer!)

Last week, my Timehop app reminded me of this snapshot in time.

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This photo was taken at the 2013 International Diabetes Federation’s World Diabetes Congress in Melbourne, and that look on my face is of pure anger. I was listening to a speaker – a doctor – referring to ‘non-compliant diabetics’ as he was telling of the ‘poor outcomes’ of ‘patients’ in his practise.

The old language chestnut came up again on the second day of the #MayoInOZ conference during the innovation showcase was held. In this session, nine speakers were each given five minutes to present how they are using social and digital tools to improve healthcare. (This is where Kim spoke about #OzDOC and how healthcare professionals use the hourly tweetchat as an opportunity to engage and learn from people with diabetes.)

The final speaker in the innovation sessions was a late addition and it was great to see diabetes again being represented. I know I am biased, but I do always get excited when I see diabetes on the program!

Andy Benson from Coffs Endocrine and Diabetes Centre presented on the project she has been working on: telling the story of diabetes in a series of documentaries to be screened on the BBC.

So, first things first. I love this idea. I am a huge fan of having diabetes out in the ‘public’ space, pulling it out from diabetes groups and diabetes-specific forums, because in most of these cases, we’re preaching to the converted. It’s one of the reasons I love writing for Mamamia Women’s Network where I know that most of the readers probably don’t already have a connection to diabetes.

If these documentaries are screened on the BBC, imagine the audience! It is so refreshing to see people thinking outside the box and looking for ways to present to a new audience – and to tell stories, real stories of real people who actually live each day with diabetes.

Andy showed two short video clips from the still-in-development documentaries. As healthcare professionals on screen spoke about diabetes, I automatically prickled, my language and stigma sensors being alerted straight away.

I wasn’t the only one. In a room with two other diabetes advocates – Kim, Melinda Seed (Once Diabetes), as well as several very vocal health advocates and activists, there was a sense of discomfort at what we were seeing.

I inhaled – maybe ‘gasped’ is a better word – when one of the HCPs used the words ‘diabetes plague’ in his introductory words. There was an undeniable sense of blaming the person with diabetes in the words being used and the sentiments being expressed.

The Twitter conversation from both people in the room and those following along was honest and candid. And, quite frankly, it was uncomfortable too. Andy had disclosed that she has type 1 diabetes, and I didn’t want to be actively criticising the work of a fellow PWD.

However, I could not keep quiet either. When Andy came over to chat after her talk, we had a very open discussion. I was probably quite blunt in my comments.

It is not okay to use language that is stigmatising. The format of the information being presented (i.e. unscripted interviews) doesn’t preclude anyone from being courteous and respectful, and I don’t believe that PWD were being treated either courteously or respectfully in the way about which we were being spoken.

I understand that there is a desire for authenticity and genuineness when interviewing documentary ‘talent’, however it is possible to be clear from the outset that language needs to be respectful at all times. Not sure where to begin with this? How about the Diabetes Australia Language Position Statement which actually provides suggestions for inclusive, non-stigmatising language?

I think it is really important to acknowledge that the road to satisfaction in the way we use language that is inclusive and non-stigmatising is a very, very long one. Also, I genuinely don’t believe that there was any malice intended on the part of the film makers or the interviewees.

We also need to acknowledge that the language used in what has been (and many would argue continues to be) a patriarchal health system is entrenched in the thinking of many – it was part of their training and is a habit that will take time to break. But by acknowledging it, we are not saying it is okay.

As I said, I love the idea that diabetes is a topic for a documentary that is being made for a non-diabetes-specific audience. However, if those people walk away thinking that my healthcare condition is a burden to society (and therefore I am too!) or that they believe it is okay to continue to use words that stigmatise, then there is the potential for this work to do more harm than good.

And finally, a call to not only the coordinators and owners of this work, but to all who are developing any sort of health information using any sort of platform: talk to people with the condition. Lots of them. It is not okay to have one token consumer representative; there should be many – as many as (if not more than) any other expert being consulted.

One of the discussions at #MayoInOz turned to the divide between personal and public social media use – especially relating to our loved ones. ABC National Medical reporter, Sophie Scott, explained the rules she’s put in place to define her professional and personal life, trying to keep the two distinct to protect her children.

It’s something I frequently think about. I use social media a lot. But despite possibly appearing to be a (social) media whore, I have rules about how I use it when it comes to my family – especially our child. The first photo I posted of her was when she was three years old. She is standing in the front garden of our old house, under the weeping silver birth tree, dressed in one of the fairy dresses that was on frequent rotation at the time. She has a cheeky smile on her face and looks quite delicious. I’ve since posted baby photos of her – usually around her birthday and on the pregnancy diary I recently published.

These days, she gets to veto whether or not I post a photo of her. If she is happy for me to share, I do. If not, I don’t. She often asks who will be able to see the photo before deciding if it is okay for me to share it.

But when she was wee, I had a very easy rule for sharing photos of her. If I wouldn’t share a photo of me doing something, I wouldn’t share a photo of her doing the same thing. So, no photos of her in the bath, naked on the floor on a towel, throwing a tantrum, crying, when she was sick, doing something embarrassing or looking grumpy. I don’t want photos of me in any of those situations online, so how could I justify it as okay for me to post photos of her like that – even if she is a kid?

This isn’t necessarily about me being worried that someone is going to do something nefarious with the photos. It’s about how she’d feel knowing others have seen her like that.

The same goes for sharing stories about her. I would never tell a story that would embarrass her – now or later in life.

The discussion at the conference turned to how parents of children with health conditions and disabilities share photos and stories of their child, perhaps not thinking about the repercussions for their child. I have commented on this in the diabetes world, and been told in no uncertain terms that I don’t get a say in this discussion as my child does not live with diabetes.

I understand that my perspective on diabetes – diagnosed as an adult – is very different to that of a child’s or the child’s family. But I am an adult with diabetes. And when I see a photo of a kid in hospital with tubes coming out of them because they are in DKA, all I can think about is how that child is feeling at that exact moment.

I’ve had a couple of DKA hospital admissions thanks to gastro bugs. I am not being melodramatic when I say that I felt that I was about to die. Between the throwing up, unstoppable nausea, desperate need to quench my thirst, weakness, rapid heart rate and feeling terrified, all I wanted to do was curl up and feel better. Or die. I would be horrified if someone shared photos of me at such a vulnerable time. I don’t want anyone to see me like that – ever.

The same goes for when I am having a weepy hypo, unable to stop the tears or the unintelligible stream of consciousness babbly coming from my mouth…or a giggly hypo where I am borderline hysterical. I don’t want that recorded for all to see. (I once filmed myself having a scary low and when I watched it back a couple of days later, it was truly shocking. I deleted the video, terrified that it would somehow find its way onto YouTube or Facebook – probably posted by me when I was next low!)

When I’ve asked parents of children with diabetes about this, they say that they do it as an awareness-raising opportunity. By showing their kid during the more serious diabetes times, they feel they can give an accurate picture of life with diabetes. It shows the pain and the fear and the relentlessness of it. I understand that – trying to tell the story of diabetes in a way that resonates with those not actually living with it is important. It’s one of the reasons I share my story.

But how do we do that without it seeming almost exploitative – especially if the story or photos we are sharing is actually not directly ours?

I was glad for the discussion at #MayoInOz, because I’ve started several posts about this issue, but have always felt clumsy and as though I am overstepping. I still hear the words ‘You don’t get a say’ and delete whatever I have written for fear I will be chastised and told to step away.

But after the conference, I decided I did want to write about it and, perhaps, start a discussion that points specifically to the diabetes world. Where is the line drawn between showing the world what diabetes is about and exploiting or exposing our loved ones? And who gets to decide? Is consent an issue here? Or is the child’s story inextricably tied up with their parents and therefore there is no line?

Thankfully, someone has written about this in a far more eloquent and elegant way! One of the other scholarship winners at the conference was Carly Findlay. Carly is a well-known blogger, writer, speaker and appearance activist, and this piece she wrote last year is definitely worth reading. (She’s also a genuinely nice person who didn’t even flinch when I once accosted her in Lygon St, almost yelling at how beautiful she looked at her recent wedding because she absolutely did and I just needed to tell her, in a ridiculously excited and animated manner. She was most gracious to this bumbling mess!)

Postscript

I don’t think I have really done this issue justice. I do know that some of my favourite bloggers are parents of kids with diabetes and I think that is possibly because I have never felt uncomfortable about what they have written. While Annie Astle is a very, very, very good friend of mine and my family’s, she is also a brilliant writer and when she shares her family’s story, it is never at the expense of Pumplette’s dignity. (Annie’s own dignity is often given a bashing because she is so bloody self-deprecating!) I recommend her blog to every parent with a newly diagnosed child because her posts are beautiful, honest and never manipulative.

A couple of weeks ago now, I was incredibly fortunate to win a scholarship to attend the Mayo Clinic’s Healthcare and Social Media Summit in Melbourne. I’m a little slow in getting anything out about it, because…well because November. But November is over! And finally, the first of the few posts I’ve started is here and the others are coming. #Tardy

Five scholarships were offered for consumers to attend, and I was encouraged to apply. So, I diligently filled in my application, hitting ‘submit’ moments before the deadline. (Not to self – always have an up-to-date bio available!) And then, the week before the conference, I squealed aloud in a meeting when I received the email, letting me know my application was successful.

The scholarship recipients. (Click photo for source.)

Before the event even started, there was online chatter about making sure the consumer reps in the room connected. Which we did! Before and throughout the conference, calls to ‘find your tribe’ resonated, and I certainly felt I had found mine! It was an absolute delight to meet and an honour to wave the consumer flag alongside Carly, Mel, Liat and Belinda.

And others in the tribe made me realise just how high the bar is set! Lisa Ramshaw, event organiser, is a force of nature. There is no other word for her enthusiasm and dedication to healthcare social media. I suspect Melissa Cadzow has #patientsincluded tattooed on her body somewhere so great is her commitment to the inclusion of consumers in all activities that affect us!

Kim giving her talk

And of course, the five-minute presentation in the innovation showcase from Kim Henshaw about OzDOC presented another strong consumer voice to the event. Kim spoke about how healthcare professionals use the weekly tweetchat as a platform to learn and engage with consumers. Kim did the OzDOC community proud with her talk, using her time to accurately crystalise the very essence of the power and influence of an online network.

It’s these people that are the reason I love these sorts of conferences – and their like-minded attitude, and endless promotion of the importance of the consumer voice and the value of using social to connect, inform and support. This is mostly a huge positive, but it does get me thinking that the people who should also be in the room probably aren’t. Organisation CEOs need to be better represented to be taken on the journey of why HCSM cannot be dismissed as ‘the way of the future, so we’ll get to it soon’, but rather ‘It’s here. We need to Do.It.Now.’ This would inform a true real top down / bottom up approach to embracing healthcare social media within their organisations.

The diabetes contingent: Me, Kim and Mel

The underlying message of the conference – at least for me – was reinforcement of something that I have known and promoted for a long time: health social networks bring people together. Before online social platforms, we did it face-to-face. The message of the ‘modern day kitchen table’ was brought home to me again and again and again, and I understood that the barriers to using social are absolutely not insurmountable – despite feeling that way at times with all the justifying we seem to have to do.

And the message of ‘Connected communities get more done’, rang so true. I thought to the first morning of the conference when I was late because I’d been moderating an hour of the 24 hour World Diabetes Day tweetchat, talking diabetes stigma with people from all over the world, affected by diabetes. I thought to the Spare a Rose; Save a Child campaign. I thought about #DSMA and #DeDOC and #OzDOC and all the ways that our own diabetes community connects to get things done.

My conference fees for the two days of the #MayoInOz conference were covered through the consumer scholarship program. I was not expected to write anything in exchange for the scholarship. Thank you to the organisers of the event, Consumer Health Forum Australia and Melissa Cadzow for the scholarship. You can read more about the conference by clicking on this link for tweets.


I’m reading a fabulous book at the moment. It’s called In Other Words, written by one of my favourite writers, Jhumpa Lahiri. My sister introduced me to her writings a couple of years ago, and I have read most of what she has written now.

The backstory to the book is quite lovely: the writer wanted to learn Italian – really learn Italian – and after years of study, moved her family to Rome. While there, she started writing only in Italian, retraining her brain to speak and think in Italian first.

The book is presented in both Italian and English. When the book is open, the left-hand page is in the original Italian and the right-hand side is in the translated English. As someone with basic Italian, I’ve been enjoying reading the Italian words, saying some of them out loud to feel them roll around on my tongue.

I start by reading the Italian side and work my way through, understanding as much as I can. What I find is that I get the general gist of what is going on, but there are gaps. The detail is completely lost at times, but I am able to piece the story together and understand what is going on. When I read the translation, all the gaps are filled in, the detail is there – adjectives provide description and narrative and help round out the story.

I cover up the English page so that I can only read the Italian, but try as I might – as I rack my brain to remember what a word means – there ends up being a lot missing from the story. But there is the safety net of being able to remove the paper hiding the translation when I simply can’t work out the holes in the story, resulting in a satisfying – and full – understanding of the beautiful story.

Yesterday, I spent the whole day feeling like I was living in the Italian side of my book. I trudged through, with a general idea of what had happened overnight, but there was a lot missing.  I’d had a hypo in the middle of the night – a terrible, terrible low. I can’t really say much more because I don’t know what happened. Parts of it are really clear, but a lot of the particulars are completely missing.

Aaron has filled in some of the gaps – how he knew I was low from the way I was moving around in my sleep; how he managed to get me to drink some juice, and then some more before I was fully able to understand him and the situation; how when he reached out to me I was drenched in sweat.

I’ve filled in the gap of the no sensor alarm – problems with the Dexcom app at the moment meant that when I grabbed my phone, angry that we had both missed the alarms, I was greeted with the message ‘Transmitter not found’. That explained why I’d not been alerted to the impending low, allowing me to treat before things turned nasty.

Because of the app problems, there is no data showing how long I’d been low, or the trajectory of my glucose levels. I know that I was sitting in range when I went to bed, and had been for some time. But that was at 10.30pm and this was three hours later. A lot can happen in three hours.

My bedside table was littered with three empty juice boxes and a couple of other wrappers in the morning, letting me know exactly what was consumed until I felt safe again.

I have a pain in my ribs. When I stood up and felt the painful twinge, I thought perhaps I’d had a seizure during the hypo, but Aaron was able to assure me that didn’t happen. The reason for the pain is a mystery, but I know it wasn’t there when I went to bed, yet was when I stood up to change out of my sweat-soaked t-shirt.

I’ve spent the last couple of days trying to piece together what I do know as I endeavour to search for the missing parts of the story. I close my eyes, desperately searching in my mind for a little hint as to what happened before Aaron realised I was low and sprang into action. Or the way I moved that now means it hurts when I breathe.  I wish I could pull away a curtain – or piece of paper – and that would expose the full story.

But there is no safety net here. All I have is what I can remember and what Aaron has been able to tell me. The gaps cannot be filled in; the detail is completely lost. I feel incredibly unsatisfied, and the uncertainty also means that I am feeling very vulnerable and exposed. If I don’t have the full story, how do I understand it all?

And how can I possibly stop it from happening again?

On Saturday, we gathered the family for an afternoon tea to celebrate the kidlet’s twelfth birthday.

My sister arrived with the most beautiful and delicious cake. She always makes my kid’s birthday cake – has done for pretty much every party. Now, Toots has come up with some amazing cake creations over the years – 3D representations of Mary Poppins, Wizard of Oz, fairies under toadstools, teddy bear picnics, beachside parties. This year, the cake was decorated simply with the Marimekko poppy pattern – my daughter’s (and my) favourite design ever. It was the simplest, least elaborate cake Toots had ever made. But it was, in my mind, the most beautiful.

As I laid the cake on a platter, I was reminded that simple, most basic, things can have a huge impact.

Once, during a tough time, someone asked me if I was sleeping and eating, and I looked at them and shook my head. ‘Not much,’ I said. ‘It’s on the list, but there are two things ahead of it – I need to breathe and I need to hug my kid. I know that she is getting plenty of hugs so I feel that I am getting that right. And most of the time I don’t have to remind myself to breathe, although there are times that I find myself staring into space, holding my breath and I have to concentrate on exhaling. I eat a little; I sleep a little. But I breathe. And I hug her and that has to be enough. That is enough. There is no space for more.’

I have come to learn about finding space for the basics and not beating up myself for things that don’t get done. Of course, sleeping and eating matter, but I worked out that doing the minimum of those things got me through. I did what I could until I was at my limit. And then: there is no space for more. Six words of permission accepting I was full. Nothing fancy – just do the basics.

Understanding this has become essential to my survival – even when not going through a crisis period. I focus on what there is space for and that is usual the most basic and simple things. There is space for love and the people who support and value and encourage me. They understand the ebb and flow of what can be managed.

I have space for work that is fulfilling and enjoyable and challenging and I am fortunate that, almost twelve months into what I am still calling my new job, my work is all of these things; the decision to jump without a safety net is justified each and every day.

I have space for small things that bring great joy, remembering that it’s not necessarily the grand gestures or big events that necessarily have the greatest impact.

It was my birthday on Sunday and it was, quite possibly, one of the best birthdays I’ve ever had. It involved a sleep in, breakfast at our favourite place, a late lunch of dumplings, wandering around with my family and then sitting at home watching Gilmore Girls. It could not have been simpler or quieter. And it was perfect because it was exactly what I had space for.

Diabetes and happiness – do they go together? On Tuesday night, the #OzDOC tweetchat asked that very question and I’ve been thinking about it a lot.

The longer I’ve lived with diabetes, the less inclined I am to be positive about it. I spent a lot of time in the first fifteen years being very ‘rah-rah-rah-diabetes-won’t-stop-me’ about it all, but in the last few years, I seem to feel that there are two words that more than adequately sum up how I feel about diabetes:

diabtes-sucks

I am not an unhappy person – I’m annoyingly chipper and perky most of the time. I just don’t feel that any of my happy nature can in any way be attributed to the fact that my beta cells are AWOL.

Maybe I’m burnt out – diabetes burnout, end-of-year burnout, thank-fuck-diabetes-month-is-nearly-over burnout. I’m exhausted and trying to think about how happiness and diabetes fit just made me realise how they don’t.

So to put a positive spin on things, I’ve tried to come up with a list of things about diabetes that do make me happy. It wasn’t easy, but here we go.

Diabetes happiness is:

  • Day five of a pump infusion set
  • Working out that even with the low cartridge warning, there is enough insulin in my pump for the night and I don’t need to get out of bed, find insulin, refill old or fill new cartridge, rewind pump, load and prime cartridge and infusion set… (AKA delay much needed sleep)
  • Sitting down to a meal of mystery carb content food, closing my eyes, SWAG-ing a bolus and winding up under 7 two hours later
  • A healthcare professional calling my name at the exact time of my appointment, resulting in no need to sit in a waiting room flicking through Readers Digest circa 1984
  • The sound of silence – no Dex alarm for five or more hours
  • Naked showers – days where the planets align and I need to change both my infusion set and sensor on the same morning, standing in the shower with absolutely nothing on my body at all
  • Finding a couple of rogue glucose tabs at the bottom of my handbag when I am stranded in the middle of nowhere and get a ‘fall rate alert’ alarm on my Dex
  • Diabetes in the wild
  • A night of no disturbances – no alarms, alerts, treat-me-now lows or need-to-pee highs
  • Walking through a crowded room and not having anyone say ‘What’s that?’ while pointing to my arm
  • Catching an impending low and treating it perfectly
  • No.Rebound
  • Seeing complete strangers wearing blue on Fridays and thanking them for raising diabetes awareness without even knowing it
  • Renza, I see no sign of diabetes-related eye problems’
  • A door handle that doesn’t get in the way
  • Bras that fit perfectly and perfectly house my pump
  • Diabetes friends who swear as much as me
  • The end of stupid lists about diabetes.

Our beautiful girl turns twelve years old today. It’s both a lifetime and a minute in time and I sometimes look at her and still cannot believe that she is here.

When I was pregnant, I kept an online diary for a diabetes website. That site is no longer there, but I still have the diary and have been waiting for the right moment to publish it here on my blog.

Today is that day. It’s a long read – a short entry for each week of the pregnancy – but it takes me back to exactly how I was feeling and coping throughout the pregnancy. My favourite part is the last part – our baby’s arrival – which I wrote when she had been home for only days and my head was in a new-parent fog and I was desperate to try to put in words what had happened and how I felt on the day. It’s funny, because it was starting to get murky then, but today, I can remember everything about it.

We tell our daughter her birth story occasionally – often around her birthday. And in there amongst the way we felt when we first heard her cry and saw her face for the first time, is the story of how much she is wanted and the path we took to actually make that happen.

It’s all here, so please have a read if you’d like. Yesterday, when giving my talk to some healthcare professionals one of them asked if I would mind sharing how I felt when pregnant and what a diabetes pregnancy is like.

And I said: It was the most difficult thing I have ever done emotionally. It was the most intensive time of diabetes care I have ever experienced. I saw my healthcare professionals more frequently than I saw my friends and family. I was checking my BGL over 20 times a day – there was no CGM here then. I had never felt such anxiety or fear as I did at that time. But equally, it was the most magical time because in amongst all the diabetes stuff, was my daughter and now – now all I think about is how it was the best thing I could ever have done. 

Twelve years old and growing up into such an amazing young woman. I could only have hoped on the day she was born that she would be as wonderful as she is today. Happy birthday to our magical girl. I never thought I would be able to love her more than I did the day she was born and yet, somehow, that love just keeps growing. We’re so excited to see what you do next darling. And we’ll be right there alongside you, continuing to cheer you on.

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Today, I gave a talk to healthcare professionals at a hospital in outer Melbourne. I was invited months ago after the organisers heard me speak at another event, and they wanted me to speak about living with diabetes.

As I said in the introduction to my talk, I am dead boring. Plus, I am only one voice. So, to create some balance and some interest, I reached out through Facebook and asked this:

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As usual, the online community didn’t disappoint. I had over forty responses and weaved them into my presentation, adding real impact to what I was saying, reinforcing my comments with the comments of others walking a similar path of life with diabetes.

I started by asking the audience a question…

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And then I said that I would be talking about life with diabetes. Except, I reminded the audience that life with diabetes was very different depending on where in the world you were diagnosed and that my story is about my ‘first world diabetes’ and I checked my privilege almost as a disclaimer.

I used that point in my talk as an opportunity to speak about those who cannot access or afford insulin and how this is simply, not okay. I could sense the surprise in the room as I said that people are dying because of lack of access.

 

Then I spoke about what diabetes is to me and here is what I said:

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It’s boring and tedious and frustrating.

experts

It’s made me an expert. And that we need our HCPs to acknowledge the hours and hours and effort we put into managing our own brand of diabetes and the expertise we develop from living so closely with this condition.

images-2

It’s about humour – because laughing is a tool I use to get through this and that’s okay.

jrwiv9f2It’s about words, because language matters and sticks with us forever.

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It’s about stigma. I asked if they could think of another condition that was so stigmatised and surrounded by blame – and that while we experience it with type 1 diabetes, I said that I believed my brothers and sisters with type 2 diabetes have it so much worse.

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It’s invisible – despite the bright blue patch surrounding my Dexcom, most of the time it is hidden away and not on show for all to see.

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It’s about people and community and the DOC and the people that are like the air I breathe – without whom I would not be managing at all.

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It’s about my family. And then I explained, fighting back tears, that this is the hardest part of life with diabetes for me. I’ve written about it a lot, spoken about it often. But thinking about how diabetes impacts on Aaron and the kidlet breaks – absolutely shatters – my heart into pieces. The worry I cause my parents makes me feel guilty and resentful. And every day I regret the time I told my sister that my life expectancy had been cut thanks to my type 1 diagnosis because I will never forget the look in her eyes indicating the pain I had just caused her.

I answered a couple of questions and then my talk was done. I thanked the audience for listening, stepped down from the stage, took a deep breath. Someone came up to me as I was gathering my bags and said that she learnt more about real life with diabetes in that talk than in all her years nursing.

This is the power of story telling. The comments I read out and shared have so much power in them. We need to keep telling our stories, turning the way we talk about diabetes on its head. It’s not about the numbers, the tools or anything else. It is about people.

Thank you so much to everyone who shared their comments with me on my Facebook post yesterday and today. 

In the lead up to our daughter being born, I was told that it was most likely that she would need to go to the special care nursery immediately after she was delivered because of low blood sugar. This had been the case for most of the dozens of other women with type 1 I’d spoken to beforehand, and I was resigned to the fact that there would not be many cuddles for a day or two.

The reality was a little different. As soon as she was delivered, her heel was pricked and her blood glucose was checked. ‘She’s good to go straight to your room,’ said the paediatrician charged with making sure our precious baby was all okay. He placed her in my arms so I could drink in the beautiful little munchkin

No; wait. She needs to go to special care. I have diabetes, remember?’ I said, as I lay on the table being stitched up after the C-section, looking in awe at the wriggling, full-cheeked munchkin who had just been lifted from my body.

‘Her blood sugar is fine,’ the paediatrician smiled at me. ‘Aaron can take her to your room and as soon as you are out of recovery you can join them. Lots of cuddles this morning – skin to skin contact is good for you both! We’ll keep an eye on her and do hourly BG checks to make sure she is okay.’

An hour later, I was stitched up, out of recovery and wheeled back into my room where Aaron was sitting holding our new daughter. He stood up and brought her over to me, positioning her on my chest and I pulled away my hospital gown and her swaddling so I could feel her against me.

With the help of a wonderful nurse, we started to learn how to breastfeed. There in my arms was our daughter. I couldn’t stop staring at her and couldn’t believe she was finally with us.

My endo walked into the room to meet her, and see how I was doing at the same moment another nurse walked in to do the first BGL check. As I held our baby, I cringed at the lancet going into her tiny, tiny heel and the tiny, tiny whimper she made.

I looked at the nurse and saw her turn white. “She needs to go to special care. Now. Her BGL is really low.’

My ever-calm endo, looked at the result. ‘I don’t think that is right. Can you check again? Maybe using Renza’s meter?’

‘No!’ said the nurse, starting to panic. ‘She needs to go right now.’ And she snatched the baby from my arms, put her back in her crib and headed quickly out of the room.

Go with her!’ I said to Aaron, but he was already on his feet scurrying after our baby girl.

I was in shock. What had just happened? Our baby had been peacefully snuggling with me, drinking in some of the tiny bits of colostrum she could manage. What was the problem?

In the special care nursery, Aaron watched as the doctors and nurses tried and tried and tried to get an IV line into our tiny newborn baby before they finally decided to just give her some formula.

As it turns out, her BGL was fine. They needn’t have bothered trying with the IV. The meter used on the ward was probably faulty. She could have stayed with me and all would have been okay.

But I wasn’t upset – or surprised – because I understood exactly what I was seeing. This was hypo anxiety from healthcare professionals and I’d seen it before.

When in hospital having my appendix out, a nurse walked in when I was checking my BGL. When she saw the 4.2mmol/l on the meter, she insisted a drink two glasses of juice and eat a sandwich, despite my protestations that I was fine and a few jelly beans would more than do the trick to keep me in the safe zone. She stood there watching me as I forced the juice and food down my throat.

In A&E once, an emergency doctor wanted me to disconnect my pump, because it was sending me low, even though my BGL had been sitting pretty in the 5s for most of the time I was there.

Another time, at work, a diabetes educator jumped up to grab me juice and almost shoved a straw in my mouth when she noticed by CGM trace heading downwards, even though my BGL was still 6 and I had plenty of time to treat before going low.

And it’s not just HCPs. In a meeting once, a senior staffer I’d worked with for over two years asked me if I needed a nurse to ‘help me’ after I excused myself for eating a couple of jelly beans because I was preventing a low. ‘A nurse,’ I said. ‘Why?’ I was confused at what was going on. ‘Because you are hypo. To make sure you are okay.’ And then I was more confused because what possible would have ever suggested that this very easy-to-treat hypo would need the assistance of a nurse?

There is a lot of anxiety around hypoglycaemia. Fear of hypos in people living with diabetes and their loved ones can be paralysing. I know that after a particularly nasty or sticky hypo, I get anxious about lows and I see my loved ones watching me more closely.

But I also work really hard to try to keep some perspective about managing them. And those around me know that keeping calm while I’m low and gently asking if they can do anything is helpful, but panicking is not. Interestingly, no one with diabetes has ever been flustered when they see me going low (nor I when around one of my friends having a hypo).

In each of the situations I described above, I needed to do a lot more to settle and reassure the person panicking than to manage my own low blood sugar. Having to calm down the anxieties of others is not really what I want to do while low.

Unfortunately, low blood sugar is a reality of diabetes for many people. I see it as a short term complication – something I do all I can to minimise, and treat as well as possible – that just needs to be managed. Of course, it can be scary. But doing all I can to keep calm yields far better results: I tend to not over treat and eat the whole kitchen when I am calm.

But what I want to know is why so much anxiety from those around us? If we know that the best way to manage a hypo is calmly, rationally and with measured treatment, why the panic? What are HCPs being told about hypos that send them into a spin so they overreact? And what could be done better to ensure those around us help rather than make things worse when we are low?

Calmly. Quietly.

 

Read about Renza

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