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It’s day four of holidays for me. Already lazy mornings, easy days and gentle plans to meet up with friends and family are clearing my mind, and I can feel the backlog of stress and exhaustion – the things that are part of everyday life – start to make way for sharp thinking and smarter decision making.

And in terms of diabetes this means more attention paid to alarms and alerts on my various devices: the calibration alert on my phone for my CGM gets attended to immediately, the low cartridge reminder on my pump is heeded at the first warning. I stop and think before blindly acting, and calmly troubleshoot as I go along.

My head is clearing. I am starting to think about diabetes the way I like, at a level that feels safe and sensible and manageable.  I make rational decisions; I take the time to fine tune what I am doing. Diabetes has a place that is comfortable, I feel better overall and far more capable of ‘doing diabetes’.

miles-study-2-logo-hires-land-colour-e1426127802906Earlier this week, the findings from the Diabetes MILES-2 study were launched. (Quick catch-up: MILES stands for Management and Impact for Long-term Empowerment and Success and is the work of the Australian Centre for Behavioural Research in Diabetes (ACBRD). The first MILES survey was conducted back in 2011, with over 3,300 Australians with diabetes taking part. The MILES Youth Report was launched in 2015, reporting the experiences of 781 young people with type 1 diabetes and 826 of their parents. This study formed part of the NDSS Young People with Diabetes Project for which I am the National Program Manager.)

The MILES reboot (Diabetes MILES-2) once again provides a snapshot of the emotional wellbeing and psychosocial needs of Australian adults living with diabetes. Over 2,300 people participated in this study and the results are comparable to those from the first MILES study. The Diabetes MILES-2 survey included the addition of some issues that had not been investigated in MILES, such as diabetes stigma.

Some key findings from the report include:

  • 17% of survey respondents had been diagnosed with a mental health problem at some point of their life
  • The respondents most likely to experience moderate-to-severe depression and anxiety were those with insulin treated type 2 diabetes
  • The respondents most likely to experience severe diabetes distress were those with type 1 diabetes
  • The aspects of life reported by all respondents as being negatively impacted by diabetes included emotional well-being (for those with type 1 diabetes) and dietary freedom (for those with type 2 diabetes)
  • More stigma was experienced by people with type 2 diabetes using insulin as compared with people with type 2 diabetes not using insulin

Anyone affected by diabetes knows that the psychological and emotional side of diabetes is as much a part of the game as the clinical tasks. In fact, for me, it is the most difficult to deal with. What’s going on in my head directly affects how the I am able to manage the practical side of the condition.

When my head is clear – the way it is slowly, but surely becoming as I settle into holiday mode – and I have time and space to rationally think about, and focus on diabetes, the routine tasks seem manageable. The numbers present as nothing more than pieces of information: they allow me to make decisions, act, or not act. I am able to be practical and seem to have my act far more together.

But for the most part, diabetes is not like that for me. I don’t manage my diabetes the way I want and that is mostly because I am simply unable to due to the distress and anxiety I feel about living with a chronic health condition that terrifies me a lot of the time. I feel overwhelmed and, in the mess of life, diabetes becomes impossible. I am not proud of this – but I am honest about it.

If I am perfectly truthful, there is nothing in this report that surprises me. But it does provide validation for how I am feeling – and how many others with diabetes are feeling too. And I am so pleased that there is evidence to support what so many of us who live with diabetes feel.

It’s no secret that I am a very big fan of the ACBRD’s work. Diabetes MILES-2 once again shines a light on the ‘other side’ of diabetes and serves as a reminder that unless the psychosocial side of living with this condition is addressed, we simply can’t manage well the physical side. And it forces those who want to believe that diabetes is a matter of nothing more than numbers and mathematical equations to consider the emotional wellbeing of those of us living with diabetes each and every day.

The MILES 2 report can be read online here.

 

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.

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.

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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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.

 

What a week. World Diabetes Day (WDD) is over for another year, but there is still lots going on in the diabetes space and in my life in general. Here are just some of the things making my brain a minestrone soup of dot points.

Mayo Clinic in Oz

I was lucky enough to win a scholarship to attend the Healthcare and Social Media Summit run by the Mayo Clinic earlier this week. I haven’t even started to pick apart all the amazing things I learnt during those two days, but there will be more to come soon.

Crown

Downtime is bloody hard to come by these days (because: November). BUT!!!! Binge watching a new show helps with some mindless entertainment and winding down at the end of the day. And Netflix has come to the rescue with The Crown. I admit that this is just a space filler until the REAL EVENT…But in the meantime, it will do and is actually super enjoyable.

Talking diabetes without being rude

We often see ‘Things to not say’ lists. I wrote one here where I suggested the only thing to say to someone living with diabetes was to offer them a Nutella cupcake.

I still stand by that advice, however thought I’d use WDD as an opportunity to write a more comprehensive list and it was published on the Mamamia Women’s Network. You can read it here – and may want to consider sharing it widely.

One of the things that we need to aim for is talk diabetes OUTSIDE our diabetes world. This article was not written for people affected by diabetes – we already know to not say most of these things. It is for those who say the annoying things because they don’t really understand diabetes.

So – have a read. And then share it around. And add your own ideas in the comments section on the Mamamia page. Let’s see just how far this can go to stopping some of the comments we hear over and over and over again!

Gilmore Girls

One week to go. We are ready!

WDD Twitter Marathon

The force of nature that is Cherise Shockley managed to pull off (once again) a 24 hour tweetchat for World Diabetes Day that included moderators and participants from all over the globe with an impressive variety of topics.

There was a bit of national Aussie pride in there with 4 hours of the chat being moderated by advocates from Down Under. I moderated an hour – with a focus on diabetes stigma – at 5pm ET which was 9am (Wednesday 15 November) AEDT, meaning I was into hour 27 of WDD when it was my turn to ask the questions.

Blue fatigue

My hand is a pretty damn good indication of how I am feeling right now. Still hanging in there with the whole ‘go-blue-diabetes-awareness-rah-rah-rah’ thing, but only just. Half way through Diabetes Awareness Month; World Diabetes Day is over and I am really feeling a lot of blue fatigue.

It seems that I am not the only one. Kerri wrote this on Six Until Me the other day and it resonated with a number of people, me included.

But the people; the people!

I was lucky enough to spend World Diabetes Day with some great diabetes people. We had house guests from Germany with us and my neighbour Jo popped in for a bit too. And my Amazing family were also there and, you know what, we hardly spoke diabetes at all!


It reminded me that my diabetes world is about people – those I’ve met; those who support me through it all; those I connect with online and in real life. And I know that I couldn’t do this without them to help me through.

#IFLGseesawchallenge

And finally, diabetes is such constant balancing act, and I don’t know about you, but I rarely manage any semblance of equilibrium!

So, I love the Insulin for Life Seesaw campaign – as both a metaphor for diabetes and also as a way to raise funds for an important cause.

Get involved by uploading your photo depicting the seesaw challenge of living with diabetes. Add the tag #iflseesawchallenge to your pic and Medtronic Australia will donate $1.25 to Insulin For Life Global. $1.25 is the amount it costs to transport a week’s worth of insulin to someone in need in a developing country.

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.

November is a big month in diabetes. For those of us living in Australia, the main event is World Diabetes Day on 14 November, but I’m certainly happy to be swept up in the USA’s Diabetes Awareness Month.

For the next four weeks, there will be a lot of diabetes awareness about and it’s a great opportunity to speak about real life with diabetes, dispel some myths and set the record straight when someone tells you to increase your cinnamon consumption to cure your diabetes.

Get your blue on…

Blue is the colour of diabetes and, this month, it’s my colour of choice! (Including this potentially misguided nail colour. My manicurist actually said ‘Are you sure?’ when I picked it our yesterday.)

I’m stuck with these nails for a couple of weeks now, but plan to accessorise with a lot more blue (including the blue mascara and eye liner I bring out just for November!)

And a throwback to 2011 (seriously!) when Cherise got a few DOC folk together to make this video. Wear blue!

Diabetes is not about numbers. Until it is.

JDRF has this nifty calculator on their website that (somewhat scarily) adds up the numbers to show just how many diabetes tasks we’ve undertaken in our diabetes lives. Here’s mine (as of yesterday).

I am the first to say that diabetes is not all about numbers, but I do love this because it shows the magnitude of this condition and its relentlessness. You can get yours here.

(And JDRF UK has their own here.)

What is diabetes awareness month all about anyway?

In fact, what are ALL awareness months about? This beautiful and throughtful post from Jessica Apple from A Sweet Life (online magazine) is definitely worth a read.

And this take from a Diabetes Dad…

And Tom Karla (AKA Diabetes Dad) has this to say about just who this whole month is for. (Spoiler: it’s not for those of us already living with diabetes!) As I said on Twitter yesterday – I spend a week every July (during National Diabetes Week in Australia) trying to explain this. Will be forwarding Tom’s post far and wide from now on!

 7 day online peer support…

Did you know that there is a free online Peer Diabetes Mentoring Summit running right now (until 7 November). Diabetes Dominator, Daniele Hargenrader, has coordinated this fab event and you can claim your free ticket here. So many terrific sessions with great speakers to follow!

Photo challenge

There’s a fun photo challenge for the month from Project Blue November. Using the prompts they’ve provided, post a photo each day to your SoMe feeds to share your life with diabetes, tagging the pic with #ProjectBlueNovember. Here are the prompts:

 

What I’d tell myself at diagnosis..

Lovely piece from the team at Diabetes Forecast where some PWD share the wisdom they would give their newly diagnosed self. Read it here.

And here’s the letter I wrote to my newly diagnosed self a few years ago. It still holds pretty true!

Circled

The International Diabetes Federation’s WDD selfie app (download for free at the app store) allows you to add a blue circle – the international symbol for diabetes – to any photo you’d like.

Big Blue Test

And of course, November means that it is time once again for the Big Blue Test, brought to us by Diabetes Hands Foundation. Over 125,000 BBTs have been logged since the program started in 2010. Easy peasy lemon squeezy instructions are:

Get logging for good karma. There’s even an app you can use to make it super easy. (And yes – I’ll be logging before and after I take the pups for a walk!)

Keep in perspective.

It’s really easy to get overwhelmed by everything diabetes that’s going on this month. If your SoMe feeds are anything like mine, they will be overtaken by diabetes and there really does seem to be no escape.

Which is why it’s important to remember that we are about so much more than diabetes and find time in the month to do things that remind us of that. We have a couple of birthdays to plan and an upcoming trip to New York to think about – all things that will hopefully keep the whole month in perspective. Plus there is always baking…maybe some cookies…

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