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In the next couple of weeks, our kid gets to line up for her next round of immunisations. At twelve years of age, that means that she can look forward to chickenpox and Diphtheria-Tetanus-Pertussis boosters, and a three-dose course of the HPV vaccine.

When the consent form was sent home, she begrudgingly pulled it out of her school bag and handed it to me. ‘I have to be immunised,’ she said employing the same facial expressions reserved for Brussels sprouts.

She took one look at me and then, slightly sheepishly, said, ‘I don’t get to complain about it, do I?’

Nope,’ I said to her. ‘You don’t get to complain about needles because…well because…suck it up princess. No sympathy about needles from your mean mamma! And you have to be vaccinated because that’s what we do. Immunisation is safe and is a really good way to stop the spread of infectious diseases that not too long ago people died from. And herd immunity only works if…

‘….if most people are immunised so diseases are not spread,’ she cut me off, finishing my sentence. I nodded at her proudly, signed the form and handed it back to her. ‘In your bag. Be grateful that you are being vaccinated. It’s a gift.’ (She mumbled something about it being a crappy gift, and that it would be better if she got a Readings gift voucher instead, but I ignored that.)

Over the weekend, the vaccination debate was fired up again with One Nation idiot leader, Pauline Hanson, sharing her half-brained thoughts on the issue.

I hate that I am even writing about Pauling Hanson. I despise what she stands for. Her unenlightened, racist, xenophobic, mean, ill-informed rhetoric, which is somehow interpreted as ‘she just says what many of us are thinking’, is disgusting. But her latest remarks go to show, once again, what an ignorant and dangerous fool she is.

Her comments coincided with a discussion on a type 1 diabetes Facebook page about vaccinations preceding T1D. Thankfully, smart people reminded anyone suggesting that their diabetes was a direct result of a recent vaccination that correlation does not equal causation.

I get really anxious when there is discussion about vaccinations, because the idea that this is something that can and should be debated is dangerous. There is no evidence to suggest that vaccines cause diabetes (or autism or anything else). There is, however, a lot of evidence to show that they do a shed-load of good. And if you don’t believe me, ask yourself how many cases of polio you’ve seen lately. People of my parents’ generation seemed to all know kids and adults with polio and talk about just how debilitating a condition it was. And they know first-hand of children who died of diseases such as measles or whooping cough.

This is not an ‘I have my opinion, you have yours. Let’s agree to disagree’ issue. It is, in fact, very black and white.

A number of people in the Facebook conversation commented that their (or their child’s) diagnosis coincided with a recent vaccination. But here’s the thing: type 1 diabetes doesn’t just happen. We know that it is a long and slow process.

 

Click for reference.

What this shows is that even if onset of diabetes occurs at (correlates with) the time of a vaccination, it cannot possibly be the cause.

When we have people in the public sphere coming out and saying irresponsible things about vaccinations, it is damaging. People will listen to Pauline Hanson rather than listen to a doctor or a researcher with decades of experience, mountains of evidence and bucket-loads (technical term) of science to support their position.

The idea that ‘everyone should do their own research’ is flawed because there is far too much pseudo-science rubbish out there and sometimes it’s hard to work out what is a relevant and respectable source and what is gobbledygook (highly technical term).

Plus, those trying to refute the benefit of vaccinations employ the age-old tactic of conspiracy theories to have people who are not particularly well informed to start to question real experts. If you have ever heard anyone suggesting: government is in the pockets of Big Pharma / the aliens are controlling us / if we just ate well and danced in the sunshine / any other hare-brained suggestion, run – don’t walk – away from them. And don’t look back.

I have been thinking about this a lot in the last couple of days. I have what I describe as an irrational fear that my kid is going to develop diabetes. It keeps me awake at night, makes me burst into tears at time and scares me like nothing else. If I, for a second, thought for just a tiny second that vaccinating my daughter increased her chances of developing diabetes, she would be unvaccinated. If I thought there was any truth at all in the rubbish that vaccines cause diabetes, I wouldn’t have let her anywhere near a vaccination needle.

But there is no evidence to support that. None at all.

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
  • 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
  • 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
  • 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…?
  • Or, I need to work out how to convince the people at TSlim to launch their pump here 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
  • 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
  • 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
  • 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
  • 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.

My darling friend, Annie.

My darling friend, Annie.

On the last Tuesday of 2016, I stood on a street corner in New York squealing in delight, and without an ounce of shame, jumped up and down hugging my dear friend Annie, tears of joy forming in our eyes. We had finally pulled off a meeting of our two clans. It took our family to travel from Melbourne and hers from a couple of hours outside London, but we did it.

Once we remembered that there were other people on the street, we set to introducing our families to each other. Our husbands shook each other’s hands, and our girls shyly greeted each other with hugs. That was the last moment of shyness for the rest of the week.

Our families have had a week of being tourists in the most wonderful city in the world. We looked at the Manhattan skyline from across the Brooklyn Bridge; we soared to the top of the Rockefeller Building, gazing across the city as the sun started to set from dozens of stories above the ground; we sat in cafes, warming up on coffee and hot chocolate and wonderful conversation; we wandered through Central Park as snowflakes started to fall, the girls unable to believe their luck as they ran with their arms outstretched catching the snow; we saw in 2017 standing in Central Park with fireworks exploding over our heads with the promise of a new year. And throughout it all, diabetes was managed by those of us who wear our pancreas on the outside of our bodies – but didn’t for a moment affect the time we were having.

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Annie and I know each other because of diabetes. She is mother to three extraordinary girls, one (Pumplette) who happens to have diabetes. I’ve linked to her blog many times here, and if you’ve not popped by yet, please do!

We often spoke about how wonderful it would be to introduce our families – although we did have some concerns at our girls actually being able to discuss their neglectful mothers who, it seems, abandon them at the drop of a hat to rush off to some diabetes conference or another.

We made it happen this week, and our girls barely paused for breath, chatting constantly, getting excited at all the city has to offer and amusing themselves with endless rounds of Banagram. Our kidlet was thrilled to have three new friends and couldn’t get enough of spending time with them.

Friends for life.

Friends for life.

And then tonight, after a last meal, we said goodbye. As we rode on the subway from the restaurant to our apartment, the tears started. And  they continued as Annie, her husband and their beautiful three girls left our apartment for the last time to head back to their own. Our kid and Pumplette had not let each other go since leaving the restaurant and parting was particularly hard for them. They had really hit it off – in the same way that their mothers had. I watched my girl with Annie’s girl and knew that she had made a friend for life.

We closed our apartment door. Annie and her family headed for the elevator and I sat next to our kidlet on the couch as floods of tears started. I hugged her tight, promising that it would not be the last time that she saw the girls. I reminded her that Annie and I live on opposite sides of the world and are in contact all the time – that we speak and message and FaceTime frequently.

And I reminded her how wonderful it was that as 2016 ended and 2017 started she had made three wonderful new friends. She nodded and wiped away her tears. ‘I miss them already,’ she said. And I nodded too. Because I understand how that feels. I know the elation of seeing friends from far flung places and then, when saying farewell, not knowing when we will see each other again. But the beauty of it is that while it hurts to say goodbye, there is an endless promise of saying hello again. And I assured it that she would say hello and hug those girls again. Many, many times.

Happy New Year, everyone!

Seeing in the New Year.

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!)

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.

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.

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.

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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.

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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.

 

Yesterday, I had my annual eye screening. In an endeavour to calm me as much as possible from the anxiety I feel about this annual check-up, I made plans so that it would be the same as my check every year. My dad drove me there, sitting in the waiting room while I faced my fears in the doctor’s office.

I have been going to the same eye specialist centre for 15 years. I’ve seen the same ophthalmologist the whole time and his orthoptist has been the same absolutely delightful woman. She does a super job of calming me down, checking my vision and eye pressure and popping in the dilating drops. And then she sends me off to see her boss so he can have a look at the back of my eyes.

‘The main event’ part of my appointment is always fairly similar and I am fine with that. I know what to expect, I know the order of things and I know that I will have an opportunity to talk about anything concerning me.

We start with my ophthalmologist asking me how I have been and what has changed in my life over the last 12 months. I mentioned that I had changed jobs and we had a chat about that for a moment.

Then he asks if there have been any changes with my diabetes in that period and is always pleased (as am I!) when I report on the mostly boring nature of my diabetes. At this point, he usually asks about my family and any recent travels.

And then, the eye exam. The lights go out, I rest my chin on the contraption and he spends a good 10 to 15 minutes having a look at my eyes, explaining what he is looking at, what he is looking for and, most importantly to me, what he can see.

Or – what he can’t see. I am always hoping that he can’t see any diabetes-related eye disease.

‘Remind me how old you are, Renza,’ he said as he turned the lights back on.

‘I’m turning 43 at the end of the month,’ I said, blinking furiously as my dilated pupils tried to get used to the suddenly bright overhead lights.

And you’ve had diabetes for 18 years, right?’ he asked.

‘Eighteen and a half…,’ I said.

‘There is absolutely no diabetes-related anything going on in your eyes, Renza. It is all good news from me.  You should be really pleased.’

‘I am,’ I said, nodding. I could feel my breathing starting to return to normal, unaware until that moment that I’d been holding my breath.

‘Okay. So…I’ll see you in a year. Of course, come back sooner if there are any changes. But first, is there anything else you wanted to mention?’

‘Oh – yes!’ I suddenly remembered that I had written myself a note in my phone. ‘I have noticed that my eyes have been really watery lately – maybe in the last couple of months. I can’t go outside without tears streaming down my face. It’s a little better if I am wearing sunglasses, but not always.’

‘Let’s have a look,’ he said. ‘It could be a blocked tear duct.’

‘Wait – what are you going to do…?’ Panic was setting in again!

‘Just tilt your head back for a second and I’ll pop some drops in first. And then I’ll do what I need to do.’

I knew that it was not the moment to ask exactly what was going on. I also knew that he has been my eye specialist for 15 years and knows me and my anxieties. And I also know that I trust him completely! I could hear paper rustling – the sound of something sterile being freed from its package.

Renza, I want you to look right up over your head for a second.’ At that point, I saw the syringe. ‘Okay – in a second, you are going to feel some saline running down the back of your throat. Nothing to worry about.’

And at the moment I tasted the salt I realised that THERE WAS A NEEDLE IN MY EYE. AND I WAS AWAKE. And I was not screaming. Or in any pain.

‘That one is fine,’ he said. ‘Let me check the other one.’ And he repeated the procedure, again announcing all to be okay. ‘It’s all fine – nothing to worry about at all.’

‘Great,’ I said. ‘Um…did you just stick a needle in my eye?’

‘I will never say,’ he said, smiling at me.

‘I think we need to acknowledge this new phase of our relationship. I feel I have really grown as an eye patient.’ I said as I gathered up my bag. I thanked him for his time – but really I was thanking him for the awesome ‘report’ and the lovely way he deals with me.

‘I’ll see you next time, Renza. Everything is looking really good.’

I walked out of the room. My dad looked up from the magazine he was reading and stood up. ‘All okay?’ he asked. I nooded. ‘Told you!’ he said – just like he always does.

I smiled. ‘Guess what? I just had a needle stuck IN MY EYE.’ I told him. ‘Did you hear me? A NEEDLE STUCK IN MY EYE.’

I settled the account and made an appointment for the end of next year at the front desk and we got into the elevator. ‘I just had a needle in my eye,’ I said, this time quietly and mostly to myself.

And my eyes are all clear.’

 We walked to the car. All done for another year.

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Pupil still slightly dilated. But an all-clear from the ophthalmologist.

Read about Renza

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