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Six weeks ago, my sister almost died.
They are seven of the most awful and terrifying words I’ve ever typed and my heart breaks and mind wobbles just looking back at them.
Almost died.
She contracted bacterial meningitis, and if not for everything happening in the way and in the timeframe it needed to, I fear that the word ‘almost’ would be missing from the first sentence of this post.
Let me tell you about my sister. She is incredible. She is smart, funny, savvy and sassy. She scares me which is bizarre because I am the older of the two of us, she is five foot (and half an inch) and is, in my mind, still fifteen years old. But the reality is that she has a ferocious presence. She is a force in meeting rooms. And in family discussions in living rooms. I’ve watched her take down real estate agents and beat them at their own game at auctions. I’ve seen her negotiate, walking away when every one of her demands has not been met, only to have whoever she was negotiating with chase her down the street, not only giving in, but throwing in a proverbial set or steak knives for her troubles. Shakespeare may have written the words ‘Though she be but little, she is fierce’ hundreds of years before my sister was alive, but those words were written in preparation for her.
So to suddenly see her helpless, scared and incredibly vulnerable and horrifically sick was a shock.
My sister has never been really unwell before. She doesn’t have the firsthand knowledge of navigating the health system the way I do. She doesn’t ‘speak medical’. She hates hospitals, and other than a quick stay for a tonsillectomy when she was 5, has never spent the night in one. And so, knowing that she was being taken away in an ambulance with so much uncertainty, and not being allowed to have anyone with her, was horrid. I knew she’d be terrified. COVID restrictions meant that there were no visitors in A&E, but then, when she was moved onto a ward she was put in isolation because, in addition to bacterial meningitis, she also had an unknown infection. She spent four days without anyone able to console her, hold her hand, rub her back, and tell her everything would be okay. And remind her how very much she is loved.
She’s recovering and has come through it with some effects that she is going to have to learn to manage. She is also dealing with the trauma of it all, and piecing together in her mind exactly what happened. Watching her go through it is hard because she is second guessing herself at every step and I just want to tell her how incredible she is; how incredible her brain is, doing it all it can to repair itself and manage the trauma. But mostly, I want to tell her that more than anything I am so glad that she is here. She will start to feel like her old self, even if she is forever changed. We will laugh and giggle and be mean to each other and relentlessly make fun at our parents like we used to. She will continue to kick arse at every single thing she does. She will keep on being the best sister I’ve ever known, and a fabulously inappropriate aunt. She will just do it all now with this horrible experience in the review mirror. Right now, it’s still really close, but it will move further and further into the distance. I have promised her that.
Six weeks ago, my sister almost died.
I don’t know who I would be without her. I’m holding her very close at the moment. Sisters are weird. We can oscillate between loving each other and needing space within minutes. But now, I just want to fulfil my role as big sister and protect her while she heals.
My sister read this post and consented to me sharing it. She didn’t consent to the photo, but I’ll deal with the backlash when I next see her.
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.
When I was planning for pregnancy, and while I was pregnant, I read everything I could about how pregnancy might impact on diabetes (and vice versa). There is a lot of information out there about pregnancy and diabetes (especially pregnancy and type 1 diabetes) I wrote this online diary sixteen years ago, with weekly updates throughout my pregnancy. Heaps of new parents with diabetes share their early parenting stories – with great tips about managing glucose levels during those new days of having a small person completely reliant upon you, while having to manage a health condition that is also reliant upon you!
But what happens when your kid is older and the impact of diabetes on a daily basis seems to be less? It doesn’t seem all that relevant really, but I do wonder if there is a long-lasting impact that I don’t consider. Just how has diabetes influenced the way I parent? Indeed, has it impacted at all? And has diabetes affected my relationship with my daughter? What does it mean for her to have a parent with diabetes?
It’s not my story to tell from the perspective of my 16-year-old daughter. I have asked her many times what it’s like having a mum with diabetes; what it’s like having been around diabetes all her life. One day, she might like to share her feelings with others, but they are her feelings and experiences and I completely respect that it is not my job to share her thoughts. Plus, my interpretation will always be clouded by my own version of events, and my own fears and biases.
When she was younger, my diabetes and its impact on my daughter caused me a lot of unease. I have never stopped worrying that I have passed on my messed-up DNA to my daughter, but it was more of a regular concern (panic?) when she was small. I spent a lot of time with a psychologist learning how to rein in those feelings because they spilled out a lot into anxiety and fear. I had to understand that those worries were about me and my feelings of guilt, not about her – something she told me without hesitation one day when I wanted to check her glucose (for probably no good reason).
These days, I rarely find myself questioning how much water she is drinking or wondering if she seems to have visited the loo more frequently than usual. Perhaps it’s because I feel confident enough that she knows the four Ts – of course she does – and if she ever were concerned, she would come to me. Or make an appointment to take herself off to the GP. (In those moments when I have noticed that I am starting to get really concerned about this again, I make an appointment to see my psychologist, because sometimes I do need help to keep things in perspective and keep the dread at bay.)
One way that diabetes has definitely clouded the way I parent is how I respond and react to times she is feeling poorly. I am not a sympathetic parent – mostly because diabetes has taught me to just get on with things – even when it is being a royal pain in the arse. I jump to a diagnosis of hypochondria any time she says she’s not feeling well. (To be fair though, that is my diagnosis for anyone claiming to feel unwell, not just my own child).
I was not a parent who, when the kidlet was an accident-prone toddler, jumped at every tumble or scratch. Sympathy is hard to come by with me – a point she made keenly when she was about three years old and tripped as we wandered down the street. She responded to my ‘Oopsie, up you get,’ with a tear-stained, overly dramatic ‘Just once I’d like you to ask me if I’m okay.’ I promised that if there was gushing blood or a visible bone sticking out that I would ask her if she was all good. But otherwise, up you get and off we go to the park.
Living with diabetes and the needles that come with it has meant that she doesn’t even get to voice any nervousness when it’s vaccination time. My ‘toughen up princess’ approach to even the start of a frown because a needle is imminent has taught her to not even go there! That sympathy will need to come from persons who do not jab themselves on a daily basis.
My Italian mamma tendencies do show up with bowls of steaming chicken soup for runny noses, and pastina con burro for tummy aches. But once they are prepared and consumed, there is an expectation that life goes on without moaning or much downtime. I think my own parents find me a little mean, but they more than make up for it by piling on sympathy and compassion, while muttering about what a cruel and indifferent mother she has.
Understanding my need for the right HCPs at the right time has meant that I’m more inclined to outsource than do things myself. I can’t count the number of times I’ve asked if she would like to see a psychologist because surely, the angst of the tween years or the teen years, or any of the obviously nightmarish parenting she has had to deal with is far better dealt with by a professional. But instead, she has seemed mostly happy enough to chat over homemade cookies and a cup of tea when she has needed to talk something out, so I guess that my nasty, unsympathetic ways haven’t resulted in her thinking that she can’t confide in me when she wants.
I write a lot of this very tongue in cheek, but I do believe that it is impossible to live with a chronic health condition like diabetes and not have it somehow impact on all relationships, including those with our children. Having diabetes and getting pregnant – and then holding on to that pregnancy – was probably the hardest thing I have ever done, but it is also the most wonderful, incredible, important and worthwhile thing I have done. Fertility difficulties before and after that one successful pregnancy have made me acutely aware of just how fortunate I am, and not a day goes by where I don’t, at some point, think that, and marvel at the amazing human I have a front row seat watching grow into a truly remarkable person.
Because in amongst it all, I also wonder if diabetes will rob me of some time with my beautiful girl. Will it cut short the number of years I get to be with her? What will I see? How much of how her life turns out will I be witness to?
These days, I think that is probably what scares me most about diabetes – that I won’t get to have as many of those years and see as many successes and struggles as I hope to. Which makes me horribly sad, because the first sixteen years have been nothing but a delight. Of course, I love her – I adore her! But also, I really like her. I want to be around for as long as I can and to see as much of that as possible. I fear that diabetes will be limiting – limit what we can do together, and simply minutes, hours, days, years together. It’s these thoughts that are locked away in the dark parts of my mind and don’t get to see the light of day much. Because when they do, I feel a sadness like no other and a terror far bigger than anything I have ever had to face.
Last year, at the IDF Congress, after a full and busy day of talks and sessions, there was a night of fun with a group of diabetes mates at a Korean BBQ restaurant. As we sat around the fiery pit, we were talking about some tricky things with diabetes and what helps and what doesn’t when we’re having one of those days.
Wielding a pair of tongs and other cooking implements as I pretended to have superior BBQ skills (I don’t), I explained to the table my cup of tea theory, how it is exactly what I need on one of those crappy diabetes days, and how my husband has absolutely mastered it.
‘I don’t need anyone to help, or try to fix the situation – especially as often the situation cannot be fixed. I want someone to tell me that diabetes sucks and then bring me a cup of tea.’ Two of the men sitting opposite me had a complete and utter Venus/Mars look on their faces. ‘A cup of tea? What’s that going to do?’
‘It’s not meant to ‘do’ anything,’ I said, flipping over some steak, and trying to not burn myself or others sitting near me. ‘Because he can’t ‘do’ anything about my diabetes being there or what is pissing me off. It just makes me feel less stressed out.’
‘Okay – well, if I ever see you on the side of the highway with a flat tyre on your car, I won’t stop and help. I’ll make sure to drive on past, find a café and come back with a cup of tea for you,’ one of them said with a cheeky smile.
‘That would be lovely,’ I told them. ‘By the time you got back, I’d have changed the tyre over and be ready to drive off, so tea would be great. Bring some wipes too to clean my hands. BUT, that’s not what I am talking about anyway, and you know that!’
This isn’t about not wanting help and thinking I can do everything by myself. Or that I need to be some sort of superhero, (because there are no superheroes in diabetes). It’s that most of the time there is no way to make things better or actually fix things.
I hate to be gendered, but in my personal experiences, it is men around me that quickly jump in to offer suggestions and offer solutions. I understand why. My dad struggles with the idea that I’m doing things tough and doesn’t like to not be able to help. He doesn’t really believe that sometimes the act of just being there provides me with bucketloads of support and reassurance. When I was first diagnosed, Aaron wanted to stop or fix the crappy moments because he didn’t want me to have to experience them. While I always appreciated people wanting to ease the distress, frustration and annoyance of diabetes, I also knew that their ideas and suggestions were something that I’d either already tried, or thought of and knew wouldn’t work.
And sometimes, the truth about diabetes is that there is just no fixing the situation. Instead, it’s a matter of riding it out.
These days, when I’m going through those shitty diabetes moments (or hours, or days or weeks, or 2020s…), Aaron is likely to gently set down a freshly brewed cup of black tea and a biscuit, accompanied with a back rub and the proclamation ‘Diabetes sucks’. And for me, that is worth more than troubleshooting or trying to work out why diabetes is behaving particularly nastily right now.
I talk about this often to loved ones of people with diabetes. Obviously, this is my experience and what works for me, but it is also mixed with plenty of tales from friends who speak about how when low they don’t want someone asking them how they got that way, of if high why they forgot to bolus. They don’t want someone suggesting they call their diabetes HCP or try something different or eat a different diet. They would rather notdiscuss diabetes right then.
I know that burnout happens for those around diabetes as well as those of us living it. It’s different and it impacts people in distinctive ways. But I suspect that some of that burnout may come from the constant desire to make the crappy diabetes stuff stop or not happen in the first place, even though that is not really a likely outcome. Perhaps one way to address that loved one burnout is to step back for a moment and not try to swoop in and repair what has gone wrong, or what is upsetting us, but instead to let us know that you are there for us in whatever way we need. And sure, for some people that may be going through a checklist of what happened during the day and talking through, step by step, how to make it different next time.
But for me? It’s a cup of tea and a shared understanding of the complete and utter suckiness that often accompanies diabetes. It may not seem like much; it may not seem to solve anything, really. But it gives me time to breathe and not have to talk or think about diabetes, or feel as though I have done something wrong. A cup of tea. (And maybe don’t forget the Tim Tam…)
This post is dedicated to my friend Amin who I am missing terribly, even though he teased me mercilessly in that Korean BBQ restaurant about my cup of tea theory. But I do want to thank him for the many virtual cups of tea he has sent me this year when I’ve really needed one.
Every morning for the last few months, my husband has posted a Facebook update on Victoria’s COVID numbers, along with a cheery message of congrats and motivation for fellow Victorians, in particular Melburnians.
My beautiful city has emerged from a long winter, spent very much not only indoors, but also within a 5km confine of our homes. The lockdown that saw us absolutely smash our second wave of COVID-19 was tough, but clearly necessary to regain control of numbers that were starting to look very, very scary.
I struggled with a lot of what was going on during that time. I am so lucky that the cocoon in which I live felt safe and secure and happy, because there was a lot going on that was not like that.
I had to stop watching the daily pressers from our Premier, not because the numbers were too overwhelming, (although the days we peaked at 700 new cases a day were tough), but rather because the media’s approach to just how present the information became too difficult to watch.
I’d already been stressed with reporting of those of us deemed high risk. That sense that we were disposable and didn’t matter with the dismissive ‘It’s nothing unless you’re old and already sick’, was a recurring theme from the moment the pandemic started.
But now it was more than that. It was the relentless negativity that was being thrown at the Premier and the Chief Health Officer that became unbearable. I realised that once I could recognise the voices and knew the names of the Murdoch hacks that hijacked the daily updates with their attempted gotcha-questions, that those who were meant to be reporting the news had become the news. I’m sure that’s not what journalists are meant to do.
Our whole state was desperately trying to understand just what was going on and how safe or at risk we were, but the loudest corners of the media seemed more focused on trying to bait politicians into admitting that they are the devil.
The same went for the way that opposition politicians who instead of being voices of support for their constituents, hampered, undermined and outright sabotaged the public health efforts that were clearly working.
This constant stream of negativity was impacting my mental health more than any curfew, needing to wear a mask, or limit to being permitted out of the house.
I also had to turn away and stop engaging completely with COVIDIOTS and conspiracy theorists who were outdoing each other with their stupidity. I still am incredulous that ‘anti-maskers’ is a thing. Except I’m not, because most of them are also anti-vaxers, and I’m pretty sure there is a direct correlation between the two. And so, I started using the mute function deliberately. Words, phrases and people that fed my anxieties because of their fear mongering were suddenly silent, and amazingly, I saw how much better I started to feel.
What I realised is that it comes down to this: in times when things are difficult and overwhelming, the fuel that keeps us going is not anger and negativity.
I am an annoyingly positive person by nature. It drives people around me nuts sometimes as I try to find the upbeat spin to pretty much everything. It wasn’t always easy during our long lockdown, but I tried.
Those daily number updates from my husband were really not about the numbers – most mornings I’d fed him the stats because I was the one tuned to Twitter until the DHHS daily update. It was the way he was sharing the news. I turned to him one morning and said ‘You’re like a cheer squad for Victoria. It’s lovely!’ I wasn’t the only one. Many people commented on how they waited for his injection of sunshine to get their day started.
Luckily for Aaron, he wasn’t the only person I was relying on for that positivity. On days where worries about diabetes-ing during a pandemic were creeping into my mind, I turned to friends in the diabetes community – both IRL and online. But again, I got smarter about how I did that. I completely isolated myself from whole corners of the DOC – again using mute – and found that my new curated DOC provided a source of support, entertainment and decent information. It’s amazing how much nicer one’s feed is without the passive aggressiveness and sub-tweeting that is just so common. (And yes, that last sentence could be considered an example of said shitty behaviour!)
The message group of my squad of four diabetes friends in particular lightened the load considerably, and helped talk me down from ledges of feeling scared and overwhelmed, with a mixture of reassuring messages, updates from their parts of the world, goofy animal pictures, sweary-ness and general inappropriateness, and a level of understanding that helped me breathe freely again.
I wonder what I’ll remember in years to come when I think back to 2020. I don’t think it will be the crappy media and sabotaging politicians. I know it probably won’t be diabetes because apart from occasionally heightened anxiety about the intersection of diabetes and COVID-19, my diabetes was manageable.
I suspect it will be the people around me – both physically and virtually – who made this dark time a little brighter. It will be my tightknit bubble of family and friends. It will be those friends who sent ridiculous memes, and made me laugh. The friends who shared pics of what they were cooking or book recommendations or how they cleverly were keeping their kids entertained while distance learning was happening. It will be the people who reached out as soon as Melbourne went into lockdown to ask how we were coping.
And so, now as there is so much more light here in Melbourne (both literally and figuratively) I’m keeping all of this close. Who knows where this pandemic will take us, or if there is a third wave coming? But if there is, perhaps I’ll feel better prepared, and know what to do.
I wrote this piece six years ago today when one of the most well-known, and one of my whole family’s long-time favourites – turned 28. Today, Marios is still going strong and has hit thirty-four years of operation. We are still frequent visitors to this cafe. It has become our kid’s choice for weekend brunch – she and I have a standing date their every second Saturday when Aaron is at a rehearsal. And at least one weekend day will see the three of us eating together. And drinking coffee. Yes, Marios is where my kid together with one of the cafe’s namesakes, ganged up on me and broke my ‘no coffee until you are eighteen’ rule, and started drinking coffee when she was just a teenager.
Marios at home.
During this time of COVID-19 we have been desperately missing Marios. Even though it’s only ten minutes from where we live, it’s outside the zone of where we have comfortably been travelling for our daily caffeine hits. But last weekend, we decided we needed a meal of pasta from there – the ultimate in comfort food – so called in an order and went to pick it up. I teared up as I walked into the cafe and was greeted by the gorgeous staff. It had been six weeks since I had last walked in that door and I can’t remember another time (unless travelling) where I have gone that long without paying them a visit.
As have many other small business, Marios has adapted to the new rules about dining. Takeaway and delivery is available, and they have turned the front of the store into a provedore with tables of dried and fresh (made in house) pasta, sauces, jams, coffee and fresh fruit and veggies. I loaded up a bag with the pantry staples as I chatted with the staff waiting for my pasta to be ready.
Marios will always – always – have a special place in our heart. And will be back as soon as this is over, making up for lost time. But until then, we’ll get takeaway and support them as we can. I’m sharing this post today (with a couple of edits) because it feels the only thing to do.
With one of the Marios a couple of weeks ago when I picked up dinner.
Today, my all-time favourite café turns 28 34 years old. Marios café (named for its two owners, Mario Maccarone and Mario De Pasquale, hence no apostrophe) is celebrating its birthday and remains the ultimate in Melbourne café culture. It’s unapologetic (still doesn’t serve skim milk, although did succumb a couple of years ago and started to offer soy) and reliable (never had a bad coffee!).
I’ve been going to Marios for pretty much all of its 28 34 years – first with my parents and then with friends. Once I left school, meeting up with people at Marios was the epitome of cool! Great jazz on the stereo, a gorgeous changing art display showcasing local talent, and the best coffee in Melbourne. Plus tablecloths on the tables, smartly dressed waiters and breakfast served all day. There have been many times that I’ve ordered scrambled eggs or a blueberry bagel at 10pm!
Back in my uni days, it was the location for many first dates and I could always tell if there would be a second date by whether or not the guy knew of Marios when I suggested we meet there. Aaron and I had our first date there, eating cheesecake late at night after seeing a movie. He knew about Marios; there was a second date! In any relationship break up in the division of cafes and pubs and places we’d hung out, I always got Marios!
Marios is where I take overseas friends when I want them to have a truly Melbourne café experience. DOC friends from home and abroad have been taken there and just a couple months ago, a group of us got together to catch up. It’s where I meet up with friends who have moved overseas when they come home for a visit. My beautiful friend Shannon who moved from Melbourne to Hong Kong and then the UK over 15 years ago and I have a standing date any time she’s in town so she can get a fix of Marios lasagne! Recently, I caught up with a long-lost friend and there was no doubt about where we would meet.
There have been many memorable visits to Marios including the night before my daughter was born, where I checked my watch every ten minutes, counting down until the time I would meet her. The day we brought her home from hospital, we took a pit stop to Marios to show her off to the waiters and introduce her to the place she would be spending a lot of time.
I’ve laughed, cried, and had some of the most serious conversations of my life in Marios. I’ve said goodbye to friends and welcomed them back into my life. I’ve met up with people for difficult, heartbreaking chats because it’s always felt safe.
I can still remember my first trip to Marios after I was diagnosed with diabetes. It was only a week or two later and it was the first time I was eating out. It was where I did my first ‘public injection’ and I can remember my heart racing as I pulled my insulin pen out of my bag and tried to jab my stomach secretly. I was sure everyone was watching me, judging me, waiting to jump on me and tell me to put it away. No one noticed and if they did, said nothing. I searched the menu for food that the ridiculously old-school dietitian I had seen would approve of and I wondered if it would be okay for me have chocolate sprinkled on top of my cappuccino. I fought back tears as I asked the waiter for sugar substitute and then explained why I was asking. My coffee was on the house that day.
Now, I don’t hide away my BGL checks or pulling my pump out from under my clothes when I am out, and it was at Marios that I realised that I had nothing to be ashamed about when it came to ‘public displays of diabetes’. Marios normalised eating out with diabetes – the new reality of my life.
I felt safe there. I knew I would not be questioned. I knew that I would still be the old me there and Marios would never change. It felt like it always did. It felt like home.
These days, I usually don’t show my glucose data online. When I first started Looping (about two and a half years ago), I regularly posted the flat CGM lines that amazed and surprised me. I also shared the not-flat lines that showed how hard my Loop app was working as temp basal rates changed almost every five minutes. The technology worked hard so I didn’t need to, and the results were astonishing to me. I shared them with disbelief. (And gratitude.)
I stopped doing that for a number of reasons. It did get boring, and I definitely recognise my privilege when I say that. I also acknowledge my privilege at being able to access the devices required for the technology to work. And there was the consideration that sharing these sorts of stats and data online inevitably lead to comparisons and competition. That was never my intention, but I certainly didn’t want to add to someone having a crappy diabetes day while I blabbed about how easy my day had been.
But today, I’m sharing this:
This was my previous 30-day time in range data from the Dexcom Clarity app on the day I arrived back home in Australia after returning from New York. (My range is set to 3.9mmol/l – 8.1mmol/l.) I’m not sharing it to show off or to boast. I don’t want congratulations or high fives. In fact, if anyone was to see this and pat me on the back, I would respond with the words: ‘I had very little do with it’.
I can’t really take credit for these numbers and would feel a fraud if anyone thought I worked hard to make this happen. Using an automated insulin delivery system full time means that I do so much less diabetes than ever before while yielding time-in-range data that I could once only dream of.
I want to share it, not to focus on the numbers (because it’s NEVER about the numbers!), but to explain what happens when diabetes tools get better and better, and what that means in reality to me.
Those thirty days included the following: End of year break up parties for work and other projects (four of those); ‘We-must-catch-up-before-the-end-of-the-year’ drinks with friends (dozens of those!); actual Xmas family celebrations (three of those over a day and a half– and I’m from an Italian family, so just think of the quantities of food consumed there). Oh, and then there were the three weeks away in NY with my family. Our holiday consisted of long-haul flights from Australia, frightful jet lag (there and back), a lot of food and drink indulgences, out-of-whack schedules, late nights, gallons of coffee, no routine, and more doughnuts than I should admit to consuming.
Add to that some diabetes bloopers of epic proportion that had the potential to completely and utterly railroad any best laid plans: insulin going bad, blocked infusion sets, sensors not lasting the distance, a Dex transmitter disaster.
And yet, despite all of that, my diabetes remained firmly in the background, chugging away, bothering me very little, with the end result being time in range of over eighty per cent.
This graph is only part of the story of why I so appreciate the technology that allowed me to have a carefree and relaxed month. Diabetes intruded so little into our holiday. I bolused from my iPhone or Apple watch, so diabetes devices were rarely even seen. Alarms were few and far between and easily silenced. I was rugged up in the NY cold, so no one even commented on the Dex on my upper arm. The few times I went low, a slug of juice or a few fruit pastilles were all it took, rather than needing to sit out for minutes or hours. Diabetes didn’t make me feel tired or overwhelmed, and my family didn’t need to adapt and adjust to accommodate it.
That time-in-range graph may be the physical evidence that can point to just how my diabetes behaved, but there is a lot more to it, namely, the lack of diabetes I needed to do!
As I spoke about this with Aaron, he reminded me of my well-worn comments about not waiting around for a diabetes cure. ‘You’ve always said that although you would love a cure, it’s the idea that diabetes is easier to manage that excites you. Ten years ago, when you spoke about what that looked like, you used to talk about diabetes intruding less and being less of a burden to your day. That is what you have now. And it is incredible.’
On the first day of IDF, a star of the Diabetes Spotlight was Ella Adams. We wanted to hear about how children with diabetes are best supported, what works and what could be improved. In the past, we usually don’t hear directly from the young person themselves. But at the IDF Congress this year, the Living with Diabetes program team was committed to hearing the lived experience as much as possible. Ella’s dad, Jason, gave a brilliant overview of how he and his wife have supported Ella, but then he stepped aside and Ella told her own story. And she did it beautifully.
Ella shared stories about how best laid plans sometimes just go a little haywire. Admirably, she just gets on with things, dealing with her diabetes around whatever situation she is in. She is fiercely independent and is doing such a stellar job of working out she wants to do diabetes in a way that works for her. She has taken on more and more responsibility for her own diabetes, her parents stepping back as she has felt ready to step up.
We had two young people on the program in the Living with Diabetes stream this year and I am so proud that we stayed true to our wishes of handing the microphone as much as possible to people living with diabetes. We saw a different type of program and Ella was very much a part of that.
Jason filmed his daughter’s presentation and shared it on YouTube, and they have given me permission to share it here. So here’s Ella. What an absolute star!
DISCLOSURE
I was the Chair of the Living with Diabetes Stream at the IDF Congress in Busan. My flights to Busan were covered by Ascensia Global (in order for me to get to Busan in time to co-facilitate their Social Media Summit). Flights home and accommodation were covered by the IDF.
Happy World Diabetes Day to you all. This year, the IDF is building on last year’s theme about diabetes and the family.
I wrote this last year, which explained how my diabetes family extends beyond my immediate family. It includes my friends living with diabetes – the diabetes tribe that I found and love so hard. I know that without them, there is no way that I would be living the diabetes life I have now. This tribe of PWD is spread across the globe, but is literally at my fingertips anytime I need them. A day does not go by when we are not messaging about the saucy goings on in the diabetes world.
Tribe
Everyone’s diabetes family looks different. While for some it is their partner, kids, parents and extended family, for others it may include their friends, healthcare team, local diabetes organisation or next-door neighbour. You do you when finding your tribe! Here’s a collage of just some of the tribe I’ve been lucky enough to see this year.
The greatest thing my own tiny little family unit – Aaron and the kidlet – have done for me with my diabetes is to let me do it my way. Aaron was there the moment I was diagnosed, and not once in the last twenty-one years has he tried to make diabetes about him. He will never know how grateful I am for that. Those middle of the night hypos where he was awake alongside me, toasting bread or pouring juice, or the hospital visits or the days interrupted by misbehaving glucose levels were done with not a single mention of how he has been impacted by my diabetes. I never heard him say how exhausted he was the morning after a particularly wakeful night, or how my diabetes has affected him.
But perhaps the greatest support that my family has given me is never making me feel limited by diabetes. Building independence when living with a chronic health condition isn’t only something that is relevant to children and adolescence. Last night, I slept alone in a hotel room and didn’t for a moment feel fear because of my diabetes. I travel the world alone for work – jump on long haul flights, spend twenty-hour days at conferences and day-long meetings – and I do that with complete and utter confidence that I can manage my diabetes alone.
I hear others with diabetes say that their loved ones are worried and fearful when they are away from them, and that in turn makes them feel nervous. I hear of struggles of how to share CGM data constructively and how much others get to be involved in the PWD’s diabetes life. It’s a delicate dance we do here, and Aaron and the kidlet have always been led by what I need. And what I need is not to feel fragile or as though I could break at any moment if they are not there.
I love that they don’t limit me in any way because of my diabetes. And I love that they trust me enough to know that I will reach out when I need to, and that when they ask and ask and ask, all that does is make me feel like a burden. And I love that they never, ever make diabetes about them.
So, they’re the stories that I’m looking for today – the stories of people with diabetes, showing how they have been supported to do their very best. And at the same time, I’m sending a thank you out to these two for supporting me in exactly the way I need.
My people
Our household is very sad today because last night we had to say good bye to our beautiful Jasper pup. Jasper came to live with us as a puppy almost sixteen years ago. We already had a little white dog called Lucy who had very much been Aaron’s and my fur baby. But we were planning for a human baby and felt that Lucy needed another four legged friend for when our attention was drawn to a new baby. As it turns out, Jasper came home to us just after my first miscarriage and his gorgeous puppy antics were a welcome distraction from the pain I was feeling.
Jasper was one of those dogs that had to be in everything. Until he went deaf about three years ago, he had this innate ability to hear even the smallest piece of food being accidentally dropped on the floor. If I uttered the word ‘Oops’ while in the kitchen, he would be at my side in a flash cleaning up whatever I’d knocked to the floor. He was social, funny, and an absolute delight to have around.
In recent years, we had noticed that he was really getting old. He had become a bit of a grumpy old man, only wanting to be around his family, and not really interested in the other pups or cat we have running our family. He was happy to sit at our feet and just be there. In the last few months, he had become less mobile, and yesterday, he finally couldn’t walk at all. We knew it was time.
It is never easy saying good bye to a family pet. Jasper had been a constant companion for a long time. We used to tell the kid that we had a last in first out policy, and Jasper had been there longer than she had. He was very, very loved by us all, and today, our home is a little quieter and our hearts are a lot heavier.
So, today I’m revisiting an old post of when our gorgeous little pup accidentally became a diabetes alert dog, waking me when I was low. This wasn’t a one off – he did it again a few weeks after I wrote this piece (and I shared that here). I’m sad to say that Jasper’s hypo detecting abilities were not especially reliable, but I still do think that he was a wonderdog in his own special way.
We love you, Jasper. Thank you for bringing so much joy to our family. We are going to miss you very, very much.
We have two dogs and one cat. (Ed – actually, that number grew to three dogs and one cat because clearly we are soft touches when it comes to tiny puppies…) They are fluffy, cute and very much part of our family. And while I like to think that they are wonder animals, they’re really not. Bella, the Maltese/poodle cross used to sleep under the coffee table and every time she woke up, hit her head. She did this for three years. Until we got rid of the coffee table. Jasper, who is getting old now, has only one thing on his mind – food. He’ll eat anything, including the green leaves at the top of a strawberry and watermelon rind. Cherry the cat is, as most cats, quite brilliant, and manages her staff (the three humans of the house) in typical cat aloofness with a side of purring cuddles thrown in so we remember how much we love her.
Gorgeous? Yes. Smart? Not so much.
For years of I’ve heard stories of dogs and cats that can sense if their owners’ BGL is dropping. Clever hypo alert dogs are being used by people with impaired hypo awareness to notify them of undetected lows. I’d read these stories. And then think of our little pets whose skills don’t go much beyond sleeping, eating and looking cute. I was resigned to the fact that none of our pets would save me in a sticky situation. Except, I think that the other night, Jasper may have done just that.
Until recently, Jasper slept at the end of the bed. A new, higher mattress and his old age have meant that jumping up was becoming harder and harder. Instead of effortlessly leaping up, he would run from side to side of the bed, front paws on the mattress, his boofy head popping up, looking a little like a meerkat as he waited for one of the humans to lift him up. After getting sick and tired of this routine, we bought him a bed and he now sleeps in a corner of the room.
The other night, I put myself to bed early and promptly fell asleep. After about an hour, I stirred because Jasper was doing his meerkat impersonation, but only on my side of the bed. Suddenly I felt him gently tapping at me. I told him to leave me alone and go back to his bed. But he refused. Dozing in and out of sleep, I could feel his paw on my arm and then he stared whining.
Finally, wide awake and annoyed at being woken, I started to get out of bed, thinking he needed to be let out or wanted his water bowl filled. As soon as I stood up, it hit me. I was low. Really low. I slumped back on the bed and grabbed the lolly jar from the bedside table and threw down a handful of jelly snakes. Jasper sat down at my feet, watching me earnestly. As I started to feel a little less woozy and could sense my BGLs coming up, Jasper padded back over to his bed, got himself comfortable and fell back asleep.
I ate a couple more jelly snakes and checked my BGL. It was back in range. I could hear him snoring gently in his corner and ten minutes later, as I started falling back asleep, I thought that maybe he is a wonderdog after all.
Jasper the Wonderdog
Diabetogenic 