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Last Friday, I took part in my first Facebook Live chat as part of The Lowdown campaign. (If you’ve not watched the Facebook live chat, you still can by clicking here.) I was joined by former AFL footballer, Jack Fitzpatrick, who has lived with type 1 diabetes for about six years.

Jack and I could not be more different. He speaks a language of sport of which I know barely one or two words. His perspective of the first few years of his life with diabetes are very, very different to mine. He talks about how, thanks to his workplace – and AFL football club – he had a doctor and dietitian working with him every day. He worked out how to fit diabetes into his job with the help of HCPs that most of us see a few times a year at the most.

But there are also similarities. We were both diagnosed as young adults and we had to learn how to manage a very demanding health condition at a time when there is far more fun to be had. On Friday, we spoke about hypos, and his stories made complete and utter sense to me.

The Lowdown campaign is a beautiful story telling initiative. That’s what has happened over the last week – PWD told their stories about hypos and time and time and time again, there were comments from other PWD who recognised that story. We recognised the way our heart might beat faster, or the confusion that heralds plummeting glucose levels. We nodded as we heard about people over-treating, because in the moment, that is all we feel we can, and must, do. We smiled at the silly things we read others do when low, (hello, HypoBoy).

Every time I saw a comment from someone who said a version of ‘That happens to me too!’ I felt tingles. That connection comes only when we feel that we are not alone, that someone understands what we are going through. I get it – it’s why I read diabetes blogs and listen to diabetes podcasts. I’m looking for real life, authentic stories, the lived experience.

As I said in the Facebook live chat, this campaign is a form of peer support. Because that is exactly what is happening – people with diabetes supporting each other, using stories that resonate, make us feel like we part of a tribe, helping us understand that our way of dealing with something is just as legitimate as anyone else’s.

We all do it – we all seek out those that stories mirror our own. That doesn’t mean that we have to think the same way or do the same things or feel the same way. It’s not about there being a one size experience or everyone having the same thoughts and ideas. In fact, the diversity in what we see and read is important because it means that we can find the ones that we connect with most and help us better make sense of our own experience.

Too often, the story of diabetes is told using statistics. That is the way researchers and healthcare professionals and governments talk. But for those of us actually living with diabetes, it will never be about the one in how-ever-many-thousand. We don’t want to hear how the dice is likely to roll or how the numbers keep getting more and more stacked against us the longer we live with this condition. We don’t connect with data, statistics or numbers. We connect with people and to their stories. That’s what we need to tell. And that’s what we need to hear.

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Yesterday, Diabetes Australia launched a new campaign called The Lowdown (please read my disclosure statement at the end of this post). It’s all about hypoglycaemia, and designed to get hypos out in the open by encouraging people with diabetes to share the realities of what hypos mean, look and feel like.

I love this campaign because it’s truly about people with diabetes. You’ll see and hear our stories and our experiences, and it will provide a forum for us to learn from each other. (Vote 1 peer support!)

There is stigma associated with hypos. Have you ever had a low and been asked ‘What did you do for that to happen?’. Or has someone ever asked you why you are not better prepared if you find yourself without enough (or any) hypo food on you? Has someone overreacted when you have been low, making you feel that you need to manage them at the same time as dealing with your hypo? Or has someone told you that you shouldn’t be having (as many or any) hypos?

All these things have happened to me and the result was that often I simply wouldn’t say when I was low, or I would downplay the situation. Reading stats such as ‘people with diabetes have on average <insert arbitrary number> of lows a week’ always made me feel like an overachiever, because I could guarantee that I was having more lows than whatever stat was quoted.

One thing I could rely on was that my friends with diabetes never made me feel like lows were my fault, or that I was hopeless because I didn’t have enough stuff with me. More likely, they would silently pass me a few jelly beans or fruit pastilles and leave me to deal with things myself, which is exactly what I need to do when low.

The last thing I need is someone throwing a million things at me (‘Here…I have juice, sweets, sugar, a glucose IV…’)and stressing out (or even worse – saying that Iam stressing them out) and asking every two minutes if I am okay. (I know that people are doing this out of concern. But seriously, the last thing any of us need when we are low is dealing with someone more flustered around us!)

This campaign is for PWD by PWD and that is why I love it. I’m hoping it will help us understand that others are dealing with the same crap around lows that we are. And that it is nothing to be ashamed of. Getting things out in the open is always a good way to reduce stigma and make people feel comfortable talking and seeking the help they may need.

So, let’s talk about lows. Share your story and read what others have to say – remembering that, as always, we are not a homogenous group and you are likely to read a variety of different stories. That’s great! Hypos affect people in different ways. For some they are significant and can be terribly scary, and for others they are simply an inconvenience that just needs to be dealt with and then they can move on. No one’s experience is any less or more legitimate than another’s.

Just some of the people who have already contributed to #TheLowdown2019

 

How to get involved

It’s easy!

Share a video or photo about how hypos make you feel. Share your post on your social media account (Facebook, Twitter, Instagram etc.) using the hashtag #TheLowdown2019. Please make sure you use the hashtag so we can find your contribution and share it and add it to our website.

If you’re not on social media, you can email a photo of yourself (perhaps holding up a card with one word which best describes how hypos make you feel) to thelowdown@diabetesaustralia.com.au

This page of The Lowdown website explains more.

Disclosure

I work for Diabetes Australia and have had some input into the development of this campaign. I am writing about it because I hope that it will get more people engaged and interested in what the campaign has to say, and encourage contributions.

I have not been asked by anyone at Diabetes Australia to write about The Lowdown here or on any other social media platform (but I’m sure they’re pleased I have).  

Transparency is always important to me and I declare everything relevant (and not relevant!) on Diabetogenic. You need to understand and consider my bias when I am writing and sharing. You can always contact me if you have any questions about this.

So, something happened to me in Berlin that hasn’t happened for a while. I had a hypo. Actually, I had more than one.

In one of those perfect storm situations where everything that could go wrong did, I found myself with a red Loop, no CGM, and in a pissed off mood. My Dex sensor had died in the morning and I couldn’t restart it because my transmitter died at the same time. I knew this was coming – I’d had the warnings. And I had a plan. I would use the reset app and get the transmitter going again.

Except it didn’t reset. I checked and double checked that I was doing all that I needed to do, but the bloody thing wouldn’t work. I still wasn’t too stressed – I had a back up transmitter with me, plus I was at a tech conference surrounded by DIY tech nerds (I say this with great fondness).

I put it all out of my mind, and focused on DOCDAY, launching our #SpareAFrown stunt and then getting on with the rest of the day.

Three hypos later (thanks conference hypo syndrome, running around Berlin like a headless chook and more activity than normal), I was exhausted at the end of the day.

But, as I gorged myself on fruit pastilles I realised a few things. I realised that fruit pastilles really aren’t all the tasty and actually a little gag-y when needing to get them down quickly.

Bleurgh

And I realised that the return of hypos made me very annoyed. ‘Three hypos today,’ I announced. ‘This is lousy.’ I complained to anyone who would listen, and probably stamped my foot a little too.

But there is a silver lining. Kind of. As I whinged and moaned about my day of lows, a friend asked if I had symptoms for my hypos. I stopped and thought about it for a moment. ‘Yes…I felt them all,’ I said. ‘You’ve got your hypo symptoms back,’ he said.

I hadn’t thought about that, but it was true. I had felt the undeniable heightened anxiety that indicated that I was low for each of the three hypos I’d had that day. My heart rate had increased a little – not too much, but enough for me to notice. And that feeling was confirmed with a finger prick check.

These hypos were relatively easy to manage – a few of the bleurgh fruit pastilles and all was good. If I had to explain them in one word it would be ‘annoying’. But I did feel exhausted and drained. I was more than just jet lag and conference-tired; I was jet lag, conference and hypo-tired.

By the end of the day, I had my back-up transmitter paired and the two hour warm-up passed. I calibrated and my Loop turned green, and said a little prayer of gratitude to the Loop gods. The hypos stopped, and the next day I went back to ticking along as I have become accustomed after eighteen months of Looping.

And that’s where I’ve been since then. Absolutely one of the best things about Loop is the way that it helps me manage lows. I’m not for a moment saying that the system is so perfect that there is no risk of lows. Of course there is. But these days, I get enough warning and the system does its bit so that a mouthful of juice or a couple of jelly beans is all I need to manage any incoming lows.

That day was the most I’ve thought about my own hypos in a long time. Of course, I think about hypos in general a lot. Being on the PAC for HypoResolve means that I talk and think about it a lot. And other initiatives, or talking with friends with diabetes means that it’s never a topic of conversation all that far from mind.

Which brings me to this…

There is a new website being launched by Diabetes Australia about hypoglycaemia. The idea behind it all is to reduce the stigma associated with hypos and also to encourage people with diabetes to share their own experiences of living with lows. Diabetes can be such an isolating condition – we know that. Hypos are part of the deal for so many of us. And yet, many of us are afraid to talk about it too much for fear we’ll be told that we’re not managing our condition properly.

This new project hopes to bring the conversation out into the open a little more and you can get involved.

If you are an adult with type 1 diabetes or type 2 diabetes on insulin, share what hypoglycaemia means to you, or even just share the word you would use to describe hypos. Email a photo and your words to thelowdown@diabetesaustralia.com.auand you could feature on the new website. Or, share a photo holding the word you would use to describe hypos using the hashtag #TheLowdown2019.

 

 

When I was diagnosed with diabetes, I was told about hypos. I was told about a whole heap of things, and hypos was just one of them. To be honest, I can’t really remember the exact way hypoglycaemia was described to me, other than it being a very matter of fact part of my overall introduction to type 1 diabetes.

There was other stuff that terrified me. If I close my eyes, I can still picture the images I was shown about diabetes-related complications. That discussion has had a long-lasting effect and I am still haunted by those photos.

But hypoglycaemia was explained as something that is likely to happen, that must be treated immediately and that there were certain things that increase the chance of it happening.

Diabetes-related complications sounded as though they had the potential to limit my life forever. Hypos on the other hand sounded just like a huge inconvenience. And an excuse to eat Nutella. (I was never advised to treat lows with Nutella. I just decided that myself.)

So with that introduction to it all, when did I start to fear hypos?

It certainly wasn’t after the first one. In fact, that was a just a little episode of curiosity. ‘Ah…so this is what that hypo thing is all about,’ I thought as I live commentated it for my poor mother.

For at least the first ten of living with diabetes, I had all my hypo symptoms. I’d woken at night time when I was low, treated and went back to sleep. Sure there were some lows that seemed to take longer to manage and to get over, but I always did so without any real issues. I worked out that there were different types of hypos with different personalities. When I was pregnant with our daughter I passed out from a hypo, and another time had a seizure in my sleep. But there was a direct line I could draw from pregnancy to low glucose level, so I just moved on.

So when did I get to the point of fear?

I don’t have any answers for this, and I can only speak of my own diagnosis experience. Hypoglycaemia was not presented to me as something that should terrify me.

Night time lows were also never presented as something scary. There were times I was advised to check overnight, but there were always reasons for that: when I started pumping, I was asked to do a 2am check for the first week. When I was pregnant I was told that if I woke up to go to the loo, it may be a good idea to check and bolus if I was high (not because there was concern about being low). When I have been playing around with basal checking, I might set an alarm to check overnight.

Where did the fear come from? I have no idea.

There are so many What if…?’questions woven into the tapestry of diabetes. With hypos, especially after a nasty one, I would spend a lot of time asking those questions. I have read posts I wrote after one of those lows and the terror is palpable, even though it’s been so long since I last actually had one. But despite the current absence of those difficult hypos, there is still a part of me that feels terrified.

Anxiety and fear about hypoglycaemia is obviously not only an issue for the person likely to experience the lows. (I wrote here about fear of lows from people with diabetes and how that can impact on us.) Perhaps that goes some of the way to fuel the fear, but it doesn’t explain where their fear comes from.

There are other aspects of diabetes that I don’t fear. I don’t fear highs even though I know they can be dangerous. I’ve had DKA and it was honestly one of the most awful experiences I’ve had. Yet I don’t fear it.

Somewhere, somehow, at some point I leant to fear lows. I moved from hypoglycaemia being an inconvenience to being something to fear. I don’t know when or how. But it happened.

Full disclosure: here I am eating Nutella to celebrate World Nutella Day earlier this week. Not because I was low.

I have just returned from two days of meetings for the HypoRESOLVE project for which I am a member of the Patient Advisory Committee (PAC). Read more about this project here (and watch the short video at the end of today’s post).

This is a huge project. Sometimes its scope hurts my little brain, but at the same time I love some of the almost audacious objectives and goals that have been set.

I left the two days of meetings with a similar feeling that I’ve felt after the previous meetings. And that is just how little we know and understand about hypoglycaemia.

This is one of the challenges when trying to define exactly what hypo is. Putting rings around something that is so personal, so diverse, so complex and so difficult to define for different people with diabetes is almost impossible. Our current classifications seem clunky at best; dismissive at worst.

I am one person with diabetes, but my own experiences of lows is inconsistent. I used to have lows that lasted for hours and hours and hours. But that doesn’t necessarily mean that they were the times I clocked the lowest reading on my CGM or BG meter. Those numbers could have just been sitting at or around the low threes for those couple of hours, not trending up – no matter how much glucose I inhaled – but, thankfully, not trending downwards either.

And then there are the lows that would send me into full overdrive of shaking and sweating and a pounding heartrate, but there may not have been consistency with the number. I could have felt like that at 3.3mmol/l or when my meter was not registering a number other than LOW.

I understand that classifications use numbers because when glucose hits certain levels, we can measure things such as cognitive impact or physiological responses. But numbers when it comes to hypoglycaemia – and all aspects of diabetes – are only a small part of the picture.

Sometimes I feel that the more I learn about diabetes, the less I know. And I have also come to learn that the allocation of numbers is sometimes almost arbitrary. They may make sense to researchers or regulators. But the reality is very, very different.

The problem with this is that there is no way ever that diabetes is going to be able to be classified by fixed numbers. There needs to be wriggle room and agility in interpretation.

I love that HypoResolve is trying to come up with innovative ways to satisfy all groups. Regulators need clear definitions to use as guides when considering new and different therapies. Clinicians and researchers need thresholds to point to. And people with diabetes? Well, we need to understand those definitions and the apply them to our own particular brand of diabetes…and how it may shift and change over time.

And that’s where the PAC comes in. Our role is to make sure the real life perspective is front of mind all the time, and to remind everyone else on the project that there is nothing static or simple about living with hypoglycaemia.

 

I have a very scientific way of collecting info to share in these Internet Jumbles. I make weird notes on my phone that absolutely make sense when I note them down, and then make absolutely no sense when I revisit them to put together the latest edition. (Case in point: ‘DMK mine’ had me stumped for a few hours until I realised that was shorthand for the HypoRESOLVE piece on Diabetes Mine. The DMK is because the meeting was in Copenhagen. Of course it makes sense. Perfect sense.)

Half the time, even after trying to work it out, I still can’t understand my notes, so there is a shedload of stuff I wanted to share that is still a mystery trapped in my iPhone.

But! Here are the ones I was able to decipher. Buckle up…it’s a long one. 

Ask patients? That’s novel

Results of a review of international literature examining patient involvement in the design of healthcare services showed that patient engagement can inform education (peer and HCP) and policies and improve delivery and governance.

I am always interested to read these sorts of articles, but must say, my response is often an eye roll and the words ‘No shit, Sherlock’ muttered under my breath.

More here.

Research and people with health conditions

What is the role of people with health conditions when it comes to research? This editorial from BMJ suggests that full partnership is the best way. 

And this infographic from Public Health Research and Practice about how to involve consumers in health research is also useful.

Thanks for listening

It’s so nice when people actually take home some tips and tricks from presentations I’ve been involved in. This tweet over the weekend from diabetes educator Belinda Moore (referring to a symposium at last year’s ADS ADEA meeting in Perth in which I was fortunate enough to be involved) was gratifying.

Peer support remains an absolute cornerstone of how I manage my diabetes as effectively as I possibly can. It is those others walking the same road who help me make sense of a health condition which takes delight in confusing the hell out of me!

The driver’s seat

This post from Melinda Seed underlines why she believes that the idea of diabetes being a ‘team sport’ is not especially accurate.

More here.

Complications and language

The awesome PLAID Journal (which you really should bookmark and read) published a piece just as ADA kicked off about why we need to change the way we speak about diabetes complications.

The piece was written by me and Chris Aldred (AKA The Grumpy Pumper), bringing together Grumps’ #TalkAboutComplications initiative and my constant banging on about language. (I first wrote about needing to reframe the way we talk about complications five years ago in this piece. Every word still holds true.)

You can reads the PLAID Journal piece here. And please share. This is a message that we need to get out.

Wellness is not the same as medicine

My huge crush on OB/GYN Dr Jen Gunter only increased after she published this piece in the NY Times last week.

I have written before about how damaging the ‘wellness industry’ can be in diabetes, including this piece on the language of wellness.

Diabetes Voice reboot

The IDF’s magazine has had a reboot and is not delivered in a digital format. Check it out here.

Well, that’s candid…

This photo of Cherise and me snapped at Diabetes Mine’s DData Exchange is hilarious in itself, but Amy Tenderich’s caption is gold!

(Click for source)

Right device, right person, right time

Dr Kath Barnard’s piece in Diabetes Medicine Matters reiterates her message from the 2017 ATTD meeting (I wrote about it here) about the importance of matching the right device at the right time for the right person.

More here.

What are the barriers to preconception care ?

This piece was just published in Diabetes Research and Clinical Practice looking at the reason women with diabetes may or may not attend pre-pregnancy care. (I was a co-author on this piece.)

‘If only there was a….online community for people with diabetes’

That comment came from a HCP at a diabetes conference a few years ago – just after someone (maybe me? I can’t remember…?) had literally just given a talk about the diabetes online community.

The DOC is not new – it’s been around for some time – and this great piece from Kerri Sparling gives a history of the DOC.

HypoRESOLVE on Diabetes mine

I was interviewed by Dan Fleshler from Diabetes Mine about HypoRESOLVE. You can read his piece here – it gives a great overview of the project.

On a break

I’m going to be taking a little Diabetogenic break for the next couple of weeks. The rest of the year is shaping up to be super busy, so I thought I’d use the next fortnight to get myself organised.

I’ll be sharing some old posts from the Diabetogenic archives and expect to be back just in time for the Australasian Diabetes Congress which kicks off in Adelaide on 22 August.

In the meantime, be well and be kind to yourself.

I’m back from a very busy week in London and Copenhagen. I arrived back in the door at home exactly two minutes after Harry and Meghan got hitched, so I missed the whole happy occasion. If only we had some sort of magical way to see photos and videos and relive beautiful experiences like that. Oh well, never mind.

The main reason for my trip was for the kick-off meeting for Hypo-RESOLVE, a new four-year project focusing on better understanding hypoglycaemia. I’m there as part of the Patient Advisory Committee (PAC), which is made up of advocates from across Europe. Obviously, it is now legislated that an Australian also be included in any European diabetes advocate activities. I believe it’s called the Eurovision Law.

The project is made up of eight work packages, each led and staffed by leading European diabetes researchers and clinicians, and after seeing just who was going to be in the room, I suddenly was struck down by the worst case of Imposter Syndrome I have ever experienced. This didn’t get any better when I was told that the presentation I had been asked to give was not only for the PAC. No – it would be in front of all eighty project participants. I looked at the list of who I would be standing up and speaking to, and cursed the meme- and photo-filled presentation I had prepared, wondering if I could pretend to understand statistics and graphs, and add some to my slide deck to at least try to sound smart.

I decided to stick with what I knew (memes, cartoons, photos of weird hypo tales), and left the slide deck as it was, hoping against all hope that I would manage to keep myself nice, and sound as though I understood what I was speaking about.

I was asked to give a talk about the real life experiences of hypoglycaemia. Fortunately I have kept a pretty good record of the literal lows of my diabetes (which, incidentally, was the title of my talk). Thanks to the search function on Diabetogenic, I was able to easily pull together a number of stories about the lows I’ve had. This proved to be more useful than I realised because these days, lows are few and far between. Since I started Looping, I’ve not had the sort of low that has made me want to write about it and try to analyse what it all means in my diabetes life. In fact, I’ve not had any lows that have required anything more than a mouthful of juice or a couple of fruit pastilles to treat.

Reading back through my blog posts was actually really quite confronting, and I found myself getting emotional as I read details of terribly scary lows and how they had impacted on me – in the moment, and in the days following. As I read, I remembered the anxieties I felt about something happening while low that would seriously affect my family.

I’ve not asked them, but I wonder if the fact that I have so few hypos these days makes Aaron and the kidlet feel calmer about my diabetes. They still see me sucking on a juice box every now and then, but it is done without urgency, and without the look in my eyes that betrays the calm I used to try (and fail) to convey.

In my talk, I really tried to express just how significant hypos have been in my life with diabetes. I tried to explain that even once a low is ‘fixed’ there are often residual effects – effects far beyond just trying to work out what my glucose levels would do after playing the how-low-can-you-go-hypo-limbo.

I spoke about how the emotional fallout after a nasty hypo can be crippling, leading me to second guess every diabetes decision I made, wondering what I had done to cause the low in the first place – because that is the ongoing narrative of diabetes….we did something wrong to cause the hypo (or the complication, or the high, or the technology failure). And I really tried to explain how sometimes there are no answers, no matter how hard we look, or how desperate we are to find something to blame.

Of course I spoke about the language of lows and how the words we use impact on the way that hypos are considered. There is no doubt that ‘severe’ hypos are serious and need urgent attention and investigation, but so-called ‘mild’ hypos can be just as burdensome.

Obviously, everyone’s hypo stories will be different and I took great pains to clarify that I was speaking of my own experiences only. In the past, hypos have terrified, paralysed and alarmed me. I was afraid to sleep, I was afraid of lows when awake. I was scared I would have a particularly nasty low around my daughter and scare her. I am fortunate that my deliberate non-compliance has resulted in almost no lows, and feeling safer that I have ever felt before. My fear of hypoglycaemia is manageable these days, yet I don’t take for granted that it will always be like this. I still carry hypo food around with me – there is no point tempting the hypo gods by not being prepared!

I’ll be writing more about Hypo-RESOLVE in coming days. I’m so pleased to be involved in such an exciting and interesting project; I’m honoured to have been selected for the PAC. I’m beyond thrilled that PWD are included in the DNA of the project – right from the kick-off, not brought in at the last minute for comment when all the decisions have been made. And mostly, I am grateful that hypoglycaemia is being given the attention it deserves. I honesty hope that one day no one ever needs to feel the panic and fear that so many of us have come to know.

Kicking off the kick-off meeting (Click for source)

You can read all about Hypo-RESOLVE in the Innovative Medicines Initiative media release from last week announcing the launch of the project. My flights and accommodation to attend the Hypo-RESOLVE kick off meetings were funded from within the project. PAC members are volunteers on this project.

Look who’s taken over Diabetogenic again! Grumps is back to share some wisdom about how he deals with hypos.

We know that when it comes to diabetes, there is the advice we’re given by HCPs. And then there is real life. I wrote about my ’reality versus what I was told’ when it comes to lows a few years ago, and today, Grumps is sharing his wisdom in the latest instalment of #WWGD.

________________________________________

About ninety mins after lunch today my BG started to drop.

It was a nice slow decline so having checked my insulin on board I decided to do bugger all about it and see what happened.

It kept on its slow decent until at about 6.0 mmol/l the carbs on board stalled and it decided to do an impression of a flying hippo and dropped like a stone.

What’s the advice for treating hypos?….

  • 15g carbs
  • Wait 15 minutes
  • BGL check
  • If “blah, blah, blah”……

Load of bollocks!

Hypo hunger kicks in.

So……

  • 4 Twix bars
  • 2 Twirl bars
  • A pre-emptive bolus and…..
  • Falling asleep on the toilet and waking myself snoring….

I land at 8.6mmol/l just in time for dinner!

Live Long and Bolus

Grumps

Want more from The Grumpy Pumper? Of course you do! Check out his blog here. And follow him on Twitter here

Grumps in Vienna

 

There’s a type of low I have.

It’s usually the middle of the night. I’m alerted to something not being quite right – this time, my iPhone beeped. This time I caught it before it became a complete white out hypo that I’ve no real memory of the next day. I switched into autopilot and started to do what I needed to do. I don’t know how it happens; it’s as though I am watching from above, telling myself what to do.

Renza, sit upright.

Renza, grab your meter.

Renza, there are no strips remaining in the canister.

Renza, get out of bed and walk to the diabetes cabinet and get new box of strips.

Renza, check blood glucose.

Renza, grab juice box from bedside table.

Renza, stab straw into juice box and drink, drink, drink.

Renza, go to kitchen.

Renza, cut slice of bread from sourdough loaf on kitchen counter.

Renza, slather bread with Nutella.

Renza, sit at kitchen table.

Renza, eat.

I was methodical, my movements slow and deliberate, almost robotic, like Hymie from Get Smart. I could almost feel my brain actually engaging with each body part, telling me what to do: walk, reach, drink, eat, chew.

I don’t know how long I sat at the kitchen table. I remember starting to focus on the pale light in the back garden and the shadowy figures the huge tree from over the back lane making. I heard Cherry the cat meow quietly at one point.

Renza, go back to bed.

I climbed back into bed, Aaron stirred. ‘Are you okay?

‘Hypo. One of those that I often don’t remember. You know – where you would be forcing me to drink pineapple juice and I’d have no memory of it…?

I stopped for a minute and realised I was cold but still needed to order my body parts to do what I wanted:

Renza, use your arms to cover your body with the doona.

I started shivering as I realized my hair and t-shirt were damp. I was tired, but couldn’t sleep. My overactive brain that had been busily directing my body, telling it what to do, wasn’t ready to shut down just yet. It was on high alert, and as often happens in that post-hypo murkiness, with the power to shut down the negativity completely deficient, all the scary thoughts started flying around. I thought about what could have happened; I thought about the times that the lows invaded everything and I couldn’t function at all, not remembering the spent juice boxes, empty wrappers, crumbs in the bed. The fear and darkness of hypoglycaemia threatened to overtake me and I knew that sleep that night would be lost forever unless I acted.

Renza…close your eyes.

Renza…don’t have another low…

Renza…get some sleep…

Max and Hymie

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?

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