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Last night, when my Dexcom was in the middle of its two-hour warm up, I had a hypo. A nasty, horrible, come-out-of-nowhere, almost-passed-out, who-the-fuck-am-I hypo. You know the type.
‘That was a pretty bad low last night, wasn’t it?’ Aaron commented this morning while we were in the kitchen drinking coffee. After I I nodded he said, ‘I know, because you were doing that fast talking thing.’
‘That fast talking thing.’ It’s one of my weirder low symptoms. I speak very quickly at the best of times, so I this particular low symptom sends me turbo-charged!
So, today I’ve revisiting this post from 2016 which perfectly captured one of those fast talking lows. We were in New York, I was all over the shop and Aaron, the person who has had more front row seats to more hypos than either of us would care to remember, was his ever-patient self. The fast talking was about green apple flavour, because what else is there to talk about when scraping the bottom of glucose numbers while on a New York subway platform?
I still talk fast when I’m low. I still love green apple flavouring. And Aaron? He still listens to me as I blabber at breakneck speed through hypos. He still doesn’t like green apple Mentos. The weirdo.
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On our last full day in New York, we walked down some stairs to the subway. My phone started vibrating and beeping and I knew that I was heading low.
I hadn’t really managed to get the whole hot-weather-walking-a-lot thing sorted out on this trip. I dealt with insane Conference Hypo Syndrome from literally the second I stepped foot into the conference centre in New Orleans, and just managed by setting a lowered temp basal rate and drinking a lot of juice.
And then, we were on holidays and while I know diabetes is for life, not just for X-mas, I couldn’t be bothered ‘doing diabetes’ and being smart about making some changes and addressing the lows properly.
For the most part, I was right. I responded to the rapid fall warnings on my Dex and avoided any super-nasty lows.
But this day in the New York subway, I was already firmly in ‘Deal With Me Now’ hypo territory. I had a bottle of juice in my bag, but walked into a little kiosk on the platform to see what I could use instead. And there before me I saw these:
I squealed.
‘Oh my god. Babe. BABE. LOOK!’ I said to Aaron as I grabbed a couple of packs and started to open them before paying. I think he fished out a couple of dollars from his pocket to pay the guy who was watching me carefully. ‘I love these,’ I announced loudly. ‘Green apple Mentos! I LOVE these!’
Aaron corralled me back to the platform and we sat down waiting for our train and I started to munch my way through the pack.
‘Want one?’ I asked him, pushing the tube into his face. ‘No thanks. I don’t like green apple flavour.’
This was a fact I knew well because every time I mention how much I love green apple flavour, he reminds me he doesn’t.
‘What? WHAT? Of course you do!’ I said. ‘It is the best flavour ever. EV-ER! Remember? It is everywhere in France. Remember, babe? Remember? And there was that time that I found green apple Mentos in Melbourne at a servo and got so excited that I bought, like, 40 tubes. Remember? Have one… Have one babe.’
‘No, I’m okay,’ Aaron said. He went back to reading something on his phone.
‘Babe. Do you remember that time at the servo? I told you, right? I was really low and I went in and saw them and got excited and was ranting and raving to the poor attendant about how excited I was and how I’d never seen them in Australia. Do you remember? The guy thought I was really weird because I couldn’t stop talking about how excited I was and how much I love green apple flavoured lollies. Do you remember?’
Aaron shut off his phone and turned to me. ‘I guess I’ll read this later,’ he said smiling.
I ignored him and continued. ‘So I told him how green apple flavour was EVERYWHERE in France, but not here in Australia and how you could get green apple gum and soft drinks and heaps of other stuff and how I love it. LOVE. IT! Remember how it is everywhere in France? Yeah? And then I asked him how many packs of Mentos they had and I dumped them all on the counter and bought them. I spent, like, sixty dollars on lollies. Green apple lollies. I was so excited and speaking really quickly. Like, super quickly. Almost ranting. Like the fast talked in Seinfeld. Remember Jackie the lawyer in Seinfeld? I was talking really, really fast. Like that.’
‘Kind of like now?’ Aaron asked.
‘Am I? Am I? I am… Aren’t I?’ I said. ‘Yeah – I guess. Maybe it’s the green apple. Do you think that’s what it is? Do you, babe? Could it be the green apple? I LOVE green apple flavour! I should have bought more. Will I go back?’
‘I think it could be because you are low. And I think maybe you should eat a few more of those Mentos instead of just speaking about them.’ Aaron said gently.
‘Do you want one? They are great! I love this flavour!’ I asked.
The train pulled into the station and we found a seat. I checked my iPhone and saw that I was no longer dropping. I took a deep breath and looked around the carriage.
‘I really like green apple flavouring,’ I murmured to Aaron. He reached over and took my hand.
‘I know. And you’re really funny sometimes when you are low.’
I rested my head on his shoulder and concentrated on my heart rate, which was slowing down. By the time we got off the train I was feeling fine. And happy. Because tucked away in my bag was a yet to be opened packet of green apple Mentos.
Two years ago today, I was at Melbourne airport, getting ready to board a plane to get to Nijmegen, via Amsterdam, for the second AGM for the HypoRESOLVE project. I have been part of the Patient Advisory Committee (PAC) since the project’s start, and am honoured to be included amongst such a terrific and passionate group of people with type 1 and type 2 diabetes to lend the lived experience perspective to the work. (Disclosure statement at the end of today’s post.)
A project this big has a lot of moving parts and there is a constant stream of work being done. Right now, one of the most exciting things that we are seeing is a survey for people with diabetes to share their experiences of how hypos impact the quality of life of people with diabetes and our loved ones.
I love that this project is looking at more than simply the clinical side of hypoglycaemia. I’d like to think that the PAC has been influential in this, however one of the things that made me so keen to get involved in the project was that, from its inception, the psychological burden was an integral part of the research. Work package 6, led by Jane Speight and Frans Pouwer, aims to provide just what the impact of hypos are on the quality of life of PWD and our families. I know that in the presentations I’ve given for this project (including at the launch meeting in May 2018), my focus has certainly been on how hypos make me feel emotionally, rather than physically. (I’ll link to pieces I wrote about these presentations at the end of the post today.)
Right now, it’s time for more than just the PWD on the PAC to have a say – to have Your SAY – by taking part in this new survey. It takes about 30 mins, although I’m seeing heaps of people saying they’re whizzing through it much quicker than that. To complete the survey, you need to:
- be 16 years of over
- be able to complete the survey in English
- have type 1 diabetes, diagnosed over six months ago
- have type 2 diabetes, and use insulin
- live with and be in a relationship with someone with diabetes.
Click below to go to the survey, and to find out more information.
The more people who provide their experiences, the more rounded and richer the research will be. Throughout the project, the PAC has repeatedly advocated for the voices of as many PWD as possible to be included (this certainly isn’t the first time a group extending beyond PAC members has been consulted), so please, if you can, take the time to do the survey.
Hypos are a tricky beast; trying to get a really good picture about how they affect our quality of life is essential in developing treatments to make them more manageable.
More about HypoRESOLVE?
This post, explaining all about the project’s launch meeting.
This post about a talk I gave at a satellite meeting at EASD which addressed the differences between how PWD define hypos and the official categories.
This post, about the difficulties of defining hypoglycaemia in ways that are meaningful for everyone.
Here’s a little video that we recorded at the kick-off meeting.
And stay tuned for the podcast!
DISCLOSURE
I have been a member of the HypoRESOLVE PAC since the project started. Until the beginning of this year, PAC members were volunteers on the project, with all flights, accommodation, meals and expenses covered from the project budget. Since the beginning of 2021, PAC members have been paid an honorarium for time worked on the project. I have not been paid to write this post, and my words here have not been approved (or read) by anyone on the project before publication.
Each year, as we stop, look back and take stock, the reason that we are feeling so tired becomes apparent. This year is no different for me; my work travel calendar was the most intense it has ever been, with nine long haul trips, some for only a day or two. Combined with regular domestic travel, I can truly say that I have seen the inside of airports far too much. I stopped adding up the trips I did once I passed 100 walks down airbridges to board planes because it was making me weepy.
But on top of the usual exhaustion this year, there seems to be an extra element of fatigue that goes beyond what I’ve experienced before.
But first, let’s talk highlights, because there have been many of them.
The year kicked off with Spare A Rose and whoa, did we start the year with a bang! With the true philosophy of SaR at the forefront (an initiative for the community, by the community), we not only reached our rather audacious target, we smashed it! A cheeky and opportunistic little extra push saw a smiling Grumpy Pumper unleashed to the whole world for just a moment The DOC didn’t break, but the final tally of for the campaign meant that 939 kids in under-resourced countries would be receiving insulin for a year. Amazing!
My favourite issue, #LanguageMatters, only went from strength to strength, and the publication of this piece in BMJ, followed by this podcast, was a brilliant way to get it outside of the diabetes echo chamber. The importance of language featured on the programs of major conferences such as ADA and #IDF2019 with stellar panels speaking about why it really does matter.
My diabetes turned 21 and tied up in all the emotion of that, my pancreas’ performance review didn’t go all that well. Maybe next year? (Unlikely.)
Possibly the most exciting, heart-warming, rewarding and humbling thing I did this year was co-facilitate a workshop in Manila with some of the most dynamic, compassionate and enthusiastic young diabetes advocates I have ever met. I’m thrilled have had a chance to catch up with a couple of the people from this meeting and can see the wonderful work they are doing in more than trying circumstances.
Peer support was never far away. One of my favourite digital campaigns came from Diabetes Australia (remember – I work there so consider my bias) with our The Lowdown campaign. What a brilliant way to showcase how a digital campaign can reach and connect people from all over the world, and encourage them to safely speak about a topic that doesn’t seem to get anywhere enough coverage. I spoke about the campaign’s success in a number of places this year.
My own personal peer support experiences happened all around the globe at conferences, advisory board meetings and other opportunities to see friends and colleagues with diabetes. These moments ground me and help me make sense of what I am seeing and hearing, and are critical for keeping me balanced.
A special shout out to these two peers and dear, dear friends: Bastian and Grumps. We saw each other an inordinate number of times this year, literally all over the globe, travelling on planes, trains and automobiles for our #DiabetesOnTour. I do think we should launch a calendar of the 2020 pics. (Admittedly, we may be the only ones remotely interested in that idea.) When I talk about my diabetes tribe, it’s friends like these two. We’ve celebrated through some pretty amazing things this year, stood up to elevate the lived experience over and over, and also counselled each other through the tough bits. We’ve held post-mortems of long days, sitting in hotel foyers and bars, trying to make sense of what has happened, working out how to always improve, and plotting and planning more and more and more. I am so grateful to them for being the scaffolding holding me up when I’m away from home and feeling overwhelmed.
So, now the reason for that elevated exhaustion…
When I first wrote about advocacy burnout back in January this year, I had no idea at the time that it would set the scene for a difficult and sometimes troubling theme for the year. I get tired and overcome at times throughout the year, but 2019 was different and I’m not really sure why.
There were moments this year where I did honestly wonder how much more energy I have to stand up over and over again to a lot of what I was seeing. I don’t like using war and battle analogies in diabetes, but I did feel that I was fighting a lot of the time. Diabetes advocacy is a tough gig to begin with. Adding burnout on top of it makes it seem shattering.
Being attacked by HCPs for daring to voice my thoughts and challenge their behaviour, or getting it from certain, more confrontational parts of the diabetes community, or having industry reps tell me I don’t know what I’m talking about for daring to suggest that maybe their lame attempts to simulate diabetes in gameshow-style gimmicks at conferences could be better directed at actually engaging and listening to PWD all added up.
Or perhaps it was the repeated examples of ‘diabetes for laughs’…and realising that we are a long way away from HCPs truly being allies in our daily encounters with stigma.
Or perhaps it was feeling that we needed to justify just how important the #LanguageMatters movement, and the decade of work we’ve done really is. I can’t even begin to tell you how upsetting this little incident was.
It added up and several times I’ve felt overcome. I feel like that today. Which is disappointing because on measure, the highlights, the positives and the amazing community should overshadow the negative encounters.
And that is why I’m taking a break from Diabetogenic. I need some time away from feeling as though I want to analyse what is going on and comment on it. I have a wonderful holiday planned with my gorgeous family where we will see friends and wander wintery streets, rugged up in pompom hats. And then, will warm up once back in Australia to finish recharging my seriously diminished batteries, ready for a new year that’s already shaping up to be so, so busy.
Until then, I hope you have a wonderful holiday season, celebrating however you see fit. Thanks for popping by. And I’ll see you in 2020, clapping my hands and raring to go!
I was speaking with someone who is thinking about starting to Loop the other day. I explained my own experiences – how simple the set-up had been (even after I’d delayed it for six months because I thought I wouldn’t be able to do it), how it is completely changed the way I think about diabetes, how much less time I have to dedicate to dealing with the daily frustrations of diabetes, how the highs and lows have been evened out and how glucose rollercoasters are a thing of the past.
‘So, you never have highs and lows? Ever?’ he asked me.
‘No; that’s not completely true,’ I said. I am frequently guilty of being evangelical about diabetes technology, and wanted to be sure that I wasn’t overselling DIYAPS. ‘After all, I still have diabetes!’
I have my range set to 4mmol/l – 8.0mml/l. It’s the mythical range that was presented to me as the ultimate goal the day I was diagnosed. It’s quite a tight range – I know that – and I probably could afford to ease up on that upper range. My target is 5.0mmol/l (it used to be 5.5mmol/l – another mythical number).
The reality is that for the very vast majority of the time, I am within that range, and hovering around that target number. If I was to check my Dex as soon as I woke up each morning, it would be boringly somewhere between about 4.8mmol/l and 5.3mmol/l.
But I still do spent time outside of the target range. The thing about Loop is that in most cases, I can explain the reasons when that happens.
I had a hypo the other night. A pretty terrible one, actually. I can’t remember the last time my Dex read LOW, but that was what I was staring at when I checked the app after my phone started screaming at me. I double checked with a finger prick and sure enough I was low. Really low. I treated (over treated) and was fine a short time later, albeit with a rebound leading to numbers I’ve not seen in a very long time.
How did that happen? Well, let’s start with the double bolus I gave myself. For some reason, I decided that the chicken soup with noodles I was eating for dinner needed not one, but two boluses. That was mistake number one. Mistake number two was not eating as much as I thought I was going to because I had a teleconference starting, so I left about half of my dinner in the bowl. Mistake number three was not realising mistake number one. And mistake number four was not doing anything to address mistake number two.
Following? Diabetes is fun!
The low resulted in an ‘eat-the-kitchen’ hypo that saw me eat six jelly beans, wait fifteen minutes and then recheck my glucose levels. Just kidding. I drank half a litre of juice, ate three bowls of breakfast cereal, chomped on a tube of fruit pastilles and then started attacking a homemade fruit bun my mum had delivered earlier in the day.
Because I was dying and all the carbs in the kitchen were the only way to prevent that happening.
The high that followed could be easily explained (see: juice, cereal, pastilles, fruit bun).
Other highs on Loop can usually also be explained quite simply. If I under bolus, I know pretty quickly, and Loop has already started doing its thing anyway to remedy that.
Stubborn highs generally mean one thing and one thing only: Renza, change your cannula. And as soon as I do, numbers come back into range fairly quickly.
Out of range numbers these days aren’t due to the unpredictability of diabetes. These days, they come down to one thing and one thing only: human error. My human error.
I trust Loop more than I trust myself. It is way smarter, completely and utterly unemotional, and an absolute workhorse, making adjustments every five minutes as required. It doesn’t get tired or busy or distracted. It understands numbers better than I ever will.
This is the cool tech I need to help me keep my diabetes moving. Of course, I still need the warm touch – the human connection – to help me make sense of my life with diabetes. But not having to think or do the diabetes numbers nearly as much gives me time and headspace I didn’t know I had. It keeps my numbers in range for the vast, vast majority of each day. And it means far fewer errors. Errors that I used to make all the time.
I am, after all, only human. Loop, on the other hand, is not.
I am not really the type to analyse reports of glucose data. I’ve never been like that, except for a brief period where I was overly obsessive. Or, as it is more commonly known: when pregnant. Then, I was all about entering numbers into Excel spreadsheets, (hey – it was the early 2000s), and I searching for patterns in the 15-20 BGL checks I was doing every day, circling anything even closely resembling a common theme in green. (Oh – green circles may always have been my thing…!)
These days, even with reports and graphs and all sorts of other fancy pants data at my fingertips, I don’t really do any analysis.
The reason I love Loop is because of how it makes me feel in the here and now. By reducing so many of the tasks I do, and my diabetes needing less urgent attention, plus dealing with fewer lows, fewer highs and fewer pretty much all the other shitty stuff, it means that my in-the-moment diabetes is far easier to manage.
Sure – I occasionally have a look at what my Clarity app is telling me, but it’s only ever the snapshot page: TIR, average glucose level and hypo risk.
Since being on Loop, my hypo risk has always looked like this:
Minimal risk. Take that in for a moment.
Diabetes – the condition that demands so much of us in terms of being able to complete highly complicated calculations factoring in pretty much every single variable imaginable and a million more, dosing a potentially lethal drug and really, no room for error.
Diabetes – the definition of a high-risk health condition.
And my personal risk of lows? Minimal.
So, remind me again: How is Loop (or other DIYAPS options) unsafe?
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.
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.
Diabetogenic 