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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.

 

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After a wonderful couple of weeks of real holidays – sun in Italy, less sun in London – I headed to Berlin, saying good bye to my family as we headed in different directions. I was bound for meetings before EASD officially kicked off. And they were headed to Wales and canal boats with extended family. We could not have found ourselves in more different settings!

My first day in Berlin was dedicated to HypoRESOLVE, the Innovative Medicines Initiative (IMI) funded project looking to provide a better understanding of hypoglycaemia. I am on the Patient Advisory Committee (PAC) for this project, which kicked off back in May this year in Copenhagen.

The project is divided into eight work packages (WP) and it was WP 8 that convened the first meeting. I was there as part of the PAC, and also to provide the personal perspective on hypoglycaemia.

Back in May at the kick off meeting, I had given a talk called ‘The literal lows of my diabetes’, where I spoke about my own experiences of 20 years of diabetes and how hypoglycaemia had impacted on my everyday life. This was a very personal talk, where I spoke about the fear and anxieties of lows, my different hypo personalities and the terror that comes with impaired hypo awareness.

But for this new talk, I wanted to do something different. I didn’t want to highlight my own experiences, because I am but one person and it is important that the audience never feel that they have ‘done diabetes’ and understand the ‘patient view’ because they have listened to one person.

I wanted my focus to be on the disconnect between how hypoglycaemia is regarded in the clinical and research world as compared with the real-living-with-diabetes world.

So, I used the tools at hand, and the fact that there is a vocal and ready to help diabetes online community just a few clicks away and sent out this tweet:

It was apparent straight away, as the responses came flooding in, that the way hypos are described and classified in clinical and research terms is very, very different to the way those of actually experiencing lows see them.

Here is how hypos are categorised in the literature:

Straight forward, neat, tidy, pigeon-holed.

And yet, when I asked PWD how they would describe hypos, here is what they came up with:

Some of the words were repeated multiple times, others appeared only once. Some of the words are the words I use to describe my own hypos, many I had not considered. Yet every single word made sense to me.

Hypoglycaemia, in the same way as diabetes, is not neat and tidy and it cannot be pigeon holed. I hope that my talk was able to illustrate that point.

And I hope I was able to highlight that using simple words and simple categorisations only service to limit and minimise just how significant and impactful hypoglycaemia truly is for those of us affected by diabetes.

You can keep an eye on the progress of HypoRESOLVE on Twitter, and via the website.  

DISCLOSURE

The HypoRESOLVE project funded my travel from London to Berlin and provided me with one night’s accommodation. I am not receiving any payment for my involvement in the Patient Advisory Committee.   

Previous disclosures about my attendance at EASD 2018, can be found on this post.

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 is one word – actually an abbreviation of a word – that strikes particular fear through every fibre of my body: ‘Gastro.’ I hate even talking about it. Just typing the word sent a shudder down my spine. (I am nothing if not dramatic…)

A work friend and colleague was telling me about how she had been struck down with gastro a couple of weeks ago – a lovely gift from her kinder-aged daughter. Just the mention of the nausea and vomiting was enough to have me sweating and getting nervous. For the record – and so you understand my irrational fear of the topic – we weren’t sitting next to each other in an office while she was telling me. She was on the other end of the phone. Two states away in Queensland. I was in Melbourne. And yet I was still looking around me wondering what I should disinfect.

A couple of weeks ago, on a Tuesday night I went to bed with my plans for the next couple of days clearly organised and sorted in my head. I had a most-civilised mid-morning flight the next day, and then a couple of days of meetings in Adelaide. I’d booked a cab, checked in online for my flight, half-packed my overnight case and mentally gone through the check list of what needed doing in the morning before I needed to head to the airport.

And then, a couple of hours later I woke up startled, with a very unsettled feeling in my stomach. ‘That doesn’t feel good,’ I said to myself. I lay there for about thirty seconds trying to convince myself that it was all in my head and I was fine and that it would be best to close my eyes and go back to sleep. Before I jumped up and ran to the bathroom, making it there just in time before vomiting. For the first time.

I spent the next few hours alternating between throwing up and being flaked out on the sofa willing myself to not throw up. I was cold and sweaty and hot and clammy all at the same time. My heart rate was racing, and every time I stood up I was dizzy. I gripped onto the walls as I stumbled down the corridor to the bathroom, tripping over nothing but my own two feet.

At about 6am, I sent an email out saying I wouldn’t be getting to Adelaide and cancelled my flight. I crawled back into bed, still nauseous, thinking the worst was behind me. For the most part, it was. I threw up a couple more times before my official alarm went off at 7am.

I feel like death,’ I told Aaron. ‘And I bet I wind up in A&E.’ I used some choice words, mostly words beginning with ‘f’ and ending in ‘uck’, and started to work out how much time I’d lose in an emergency bed having to deal with HCPs wanting to remove my devices from me and ‘look after’ me.

‘Should I stay home?’ asked Aaron. ‘I can take you in that way.’ I told him it wasn’t necessary and that if I really needed to get to hospital my dad could take me. He got ready for work and the kid got ready for school and the two of them left, leaving me in bed, switching between dozing, holding my tender stomach and glaring at my iPhone and my Dex trace. I was hoping if I stared daggers at the trace hard enough it would stay in range.

My Loop was working overtime. I spent most of the morning between 3.5 and 4mmol/l thanks to my Loop cutting off all basal insulin. By about 11am, I could see my CGM trace starting to inch up closer to 5 and then 6, and Loop was making tiny micro adjustments to my basal rates.

I was able to keep water and some dry ginger down, and chewed on small blocks of ice. I didn’t feel dehydrated; I wasn’t going high. I didn’t have ketones. Things were looking good!

By 1pm, I was feeling comfortable enough to call into the meeting I should have been at in Adelaide. My nausea was less pronounced. I felt washed out, achy and tired, but I hoped I was out of woods, and needing to go to A&E was becoming less and less likely. Thankfully.

I have generally been pretty lousy at managing gastro and diabetes. I usually do end up in A&E, needing to be rehydrated and given some anti-nausea meds though an IV as I’m unable to keep them down after taking them orally.

But of course, it ends up being far more of an ordeal than simply lying on a bed with fluids being pumped into me. There is the inevitable request for my insulin pump to be removed so that insulin can be administered via IV – even if it’s clear my pump is working just fine.

Nurses insist on checking my glucose levels, refusing to pay any attention to the CGM spitting out readings every five minutes. My requests (demands?) to self-manage my own glucose levels – and diabetes generally – are ignored. I’ve no idea what would happen if I tried to explain the DIY APS thing I have going on these days, but suspect that wouldn’t go too well.

Usually, it takes me making an emergency call to my endo for things to go the way I really want them to – fluids, dark room, anti-nausea meds and home in about 4 hours (at the most).

By the time I leave I often feel worse for wear – and certainly more battle scarred – than I did when I first walked in there, doubled over and trying to not throw up on anyone.

But I avoided all that the other week. I managed to spend the day in the comfort of my own home, breathing in fresh air from the open windows and generally feeling comfortable and content. The only gastro hangover I had was a little exhaustion and abdomen discomfort. All in all, it was a good outcome. (But I’m still terrified of the word ‘gastro’…)

A much preferred view to a cubicle in A&E!

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?

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.

 

Fade in to bedroom in middle of the night…

Diabetes: Helllloooooo! It’s me; Diabetes!

Me: Piss off!

Diabetes: Rude! You don’t like me very much, do you?

Me: Um…no…It is 3am and you have just woken me up. I guess you’re okay. I mean…I guess.

Diabetes: Pfft. You’re a lousy liar. I hear the words you use when talking about me. We should discuss your language. You swear like a trucker a lot of the time.

Me: My language? You want to talk about my language? It’s 3am. I’ll tell you what you can do with my fucking lang….

Diabetes: Yeah – that’s what I’m talking about…

Me: Well this has been fun. I might go back to sleep now.

Diabetes: Oh – I’m not done yet. We have so much to catch up on. Let’s talk.

Me: About what…?

Diabetes: I was wondering… Do you think there is any way that you could like me? Any way at all? What would I have to do?

Me: Is leaving me alone and finding a way for my beta cells to start working again an option? Could you do that for me?

Diabetes: Not so much.

Me: Okay. Is just being in the background and not bothering me and responding the same way to the same things each time an option?

Diabetes: No. Not really.

Me: Um…is never again waking me in the middle of the night a possibility?

Diabetes: Again, no – I get lonely and it’s fun to have you around when it is dark outside.

Me: Okay. Then to answer your question: no. I don’t believe there is any possible way that I could like you. In fact, I think that I will pretty much dislike you for the rest of my life. Which I hope to be a very long one. We have nothing in common and you have no redeeming qualities. So…

Diabetes: I’m sad to hear that, my friend…

Me: I am not your friend.

Diabetes: Whatevs.

Me: That is not a word.

Diabetes: Totes is.

Me: It is not. And neither is ‘totes’ unless you are referring to a bag.

Diabetes: You know; you’re actually kind of annoying.

Me: Pot. Kettle. Black.

Diabetes: Use verbs!

Me: I had no idea that my diabetes was so into grammar and language.

Diabetes: Yeah – I love it. And punctuation.

Me: You do?

Diabetes: Yep. I do.

Me: Wow. That’s kind of interesting…

Diabetes: It is, isn’t it?

Me: I love punctuation, too.

Diabetes: I know. I can’t decide if my favourite punctuation symbol is the interrobang or acclamation point.

Me: Oh – they are two of my favourites as well! … So, what else do you want to say to me?

Diabetes: Oh – just this…You’re low and probably should do something about it.

Me: What the fuck‽

Diabetes: Renza! Language! Drink some juice. (But excellent use of an interrobang!) … Also, if you find yourself talking weird punctuation marks with your chronic autoimmune health condition – I’d suggest that you think about what could be going on with your glucose level. And then do something about it.  

Renza: Do you know what this punctuation mark is:

sarcmark

Diabetes: No. What is it?

Renza: It’s a sarc mark. And this one? This one is a snarc mark.

snark-markRenza: You should consider pretty much everything I ever say to you to conclude with one of those – take your pick.

Diabetes: That’s not very nice.

Renza: Neither are you.

Diabetes: Drink some juice, you moron.

Renza: Don’t tell me what to do! Great; now I’m wide awake.

Diabetes: And it would appear my work here is done. See ya…

Fade out to sound of expletives, all  punctuated with a certitude point.

certitude-point

I had a low last week that knocked me for six. It certainly wasn’t the worst hypo I have ever had – far from it actually. But it had been a while since I had one like this. In fact, since I started eating low(er) carb. (I’m still reluctant to call it low carb, because I am really not trying to stick to a certain amount of carbs per day. But to give you an idea, it’s a rare day that I eat more than 80 grams.)

But last week, I did. My usual Japanese food takeaway place was out of sashimi which is my favourite quick lunch. So, I ordered a sushi roll and a cup of miso and off I went.

Now white rice is evil to me. It really is. I love it, but have never managed it! In 18 years of type 1, I have never worked out how to bolus for it. I am better (although not great) with pasta and other carb-heavy foods. But rice? Just hopeless! I would just guess, hope that I was close to right and then kept a close eye on my numbers afterwards, correcting as necessary.

On Friday, I was nowhere near right. No.Where. I watched my CGM line start to rise and rise and rise pretty quickly after I ate, resisting the urge to bolus before I hit the upper limit on my graph. And I am so glad I didn’t because after the spike, came the plummet. Insulin still on board, and two arrows pointing down.

I tried to intervene, but it was too late. Suddenly, my lips starting tingling, I realised I was sweating a lot and my thought process was all over the place. I read the same email five times, started five different responses and had no idea what I was trying to say.

I grabbed a juice box, and drank the lot in one gulp. The desperate low feeling of ‘I.Am.Going.ToDie’ overtook me as I stabbed another straw into another juice box and looked around for what else I could consume that would help, grabbing a handful of jellybeans; spooning honey from the jar and pouring some milk into a bowl with cereal.

And then I stopped. I willed myself to breathe, counting up as I inhaled, down as I exhaled, trying to not get the numbers messed up. I concentrated on my heartrate. I walked away from the food on the kitchen counter and sat at the table, focusing on the artwork above the wood-fire oven that the kidlet and I had done years ago when she was only about 5 years old. I thought about us spreading down a drop sheet on the front veranda of our old house, sitting the large canvas on top of it and emptying tube after tube of paint onto it. ‘It’s like a Jackson Pollock painting,’ she said, signing the finished artwork with her name and then adding ‘and Mummy’ afterwards.

Slowly, my heartbeat returned to normal. I could count my breathing without difficulty. I stopped thinking that I was going to pass out. My clothes were drenched from the sweating, though and now I was shaking because I was cold. I gingerly walked into the bedroom, pulled off my top and put on a thick jumper, wrapping a scarf around my neck for good measure.

I looked at my CGM graph on my iPhone and saw the quick spike and the sudden crash – a sight I’d not seen for some time. I lay down on my bed and closed my eyes for a moment, which became an hour and when I woke, the ‘hit-by-a-bus’ hypo hangover had taken over my body.

All this because of a sushi roll gone wrong. It wasn’t even a delicious doughnut or cupcake, I thought. It took me almost 24 hours to get back on track. The over-treating had to be corrected and I tried to not over correct, but that failed and another low in the middle of the night messed me up a little more.

This was a forgotten low. And I’m not particularly inclined to have another one in the near future to remind me again.

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