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Sam Seaborn : You wrote a concession?

Toby Ziegler : Of course I wrote a concession. You want to tempt the wrath of the whatever from high atop the thing?

Sam Seaborn : No.

Toby Ziegler : Then go outside, turn around three times and spit. What the hell’s the matter with you?

This is from a scene in an episode of the West Wing, one of my all-time favourite TV shows. It’s election night, and President Bartlet’s staff are waiting for the call to be made. His communication director, the ever-curmudgeonly Toby Ziegler, is admonishing his deputy, Sam Seaborn, for making any sort of prediction or assumption about the outcome of the election, even though the President is a shoo-in for his second term. 

I get it – the idea of jinxing things is one of those superstitions that many of us hold close. I believe in science and evidence and research and nothing else, but even so, I throw salt over my shoulder, tap the table (or my head) and say ‘touch wood’ anytime I predict or claim something positive is going to happen. 

This introduction is purely to lay the foundations for a lot of tapping on wooden doors and tables, throwing salt over my shoulder, wearing an evil eye charm, and making the ‘cornuto’ sign (Italians will know…) at my laptop at the end of each sentence, because I am sure that by the end of the week (if not sooner), this post will not have aged well at all.

But anyway, here goes…

COVID has made its way to Casa Diabetogenic. We’ve spent the last two years desperately doing all we could do avoid it, obsessively following health orders to the letter, being super cautious about being in crowds, amassing a huge collection of masks (and wearing them any time we left the house), and being a pin-up family for vaccinations, getting our jabs the minute we could, and boosted to boot. 

Despite that, COVID announced itself on Sunday morning after a round of RATs. In the olden days, we would go out to brunch. In the present days, we do a saliva test to see if we have the plague.

Two of the three inhabitants of the house were positive. The one with diabetes (me!) was not. And I remain that way (salt over shoulder) forty-eight hours later, (touch wood). 

The positive tests became hour zero and from then on, we were in full isolation mode. Aaron was confined to our bedroom, the kidlet to her own. If either of them need to leave their room for any reason, they send out an alert, and mask up, and wipe down any surface they’ve as much as looked at sideways, and empty half a can of Glen20 in their wake. 

I prep and deliver all food and drinks to rooms and am at the beck and call of the infirm. We Facetime each other throughout the day to chat and check in on symptoms. I bossily remind them to keep up fluids and eat the segmented oranges I’ve delivered to them. I am annoying myself, so can’t even being to imagine how much I’m annoying them. We haven’t been in the same room as each other at all, and only see each other in the flesh when we are eating meals in the garden – sitting away from each other, necessitating speaking in very loud voices, giving our poor neighbours unwanted insight into our conversations. 

It’s slightly absurd. Until those two lines appeared on those two tests on Sunday morning, we had been carrying on as normal and not giving a thought to needing to isolate from each other. I’d just gotten out of bed, a bed I’d been in for eight hours with my COVID positive husband lying right there. I’m pretty sure the night before I’d handed him my fork so he could have a taste of something I was eating. While we were super cautious about being around others, we didn’t for a second think that we needed to worry about our little unit. Home was meant to be a sanctuary. Now I’m trying to elude the little virus that could from inside our own home. It’s the shittiest game of dodgeball I’ve ever played. 

My anxiety has remained mostly in check. I’ve gone into fight mode as I desperately try to disinfectant spray any hint of the virus. I only care that my family is okay and not feeling too poorly or taking a turn for the worse in any way. I’m worried that they won’t recover easily and quickly. I can’t stop thinking about long COVID.

And then there are the flashes of terror (like the middle of the night when I’m lying awake) and I wonder how my body WILL behave when (if?) it gets COVID and then, for a few moments in the cover of darkness, I find myself becoming a statistic, explained away by my underlying condition. They’re the words that ring in my ears thanks to every single presser from the NSW government. It’s so bleak and terrifying in those moments, and all I can do is remind myself that even though there are no guarantees, I am doing all I can. 

I’m obsessively checking my CGM because if ever there was an early warning alarm system, it’s my glucose levels. It’s a reliable tell to let me know that an infection is brewing. Straight, steady, in-range numbers greet me in the mornings, insulin doses not needing to be superpowered by Loop to keep me that way. 

All the while, I’m trying to understand how it is possible that I remain COVID free (cornuto sign). Because that makes no sense at all. Other than to believe I am some sort of extraordinary, turbocharged powerhouse of immunity (I mean, the vaccines and boosters probably have something to do with it too…)

Friends and family keep checking in and I boast about how, for once, my broken body is being legendary. ‘Are we…superhuman,’ asks my friend Georgie who has also managed to remain COVID-free despite being exposed left, right and centre, even though her immune system and mine match in their hopelessness. (Georgie, I just waved my evil eye charm around for you.)

I have developed this ridiculous superiority complex that is bound to be my downfall. Is it possible that my stupid, fucked up, overactive immune system that hasn’t shown any reason for me to believe it knows what it’s doing and keeps killing off things it shouldn’t has decided to be overactive in the right way, destroying COVID as it’s tried to move in? Do I have an invisible protective shield around me that has transformed me into some sort of crusader, fighting the evil coronavirus and winning? (There is a small salt mountain now behind me. Also, I’m an idiot.)

But then I remember that pride comes before a fall, and that this body of mine and this immune system of mine are not the sharpest tools in the shed at the best of times. And that thinking, let alone writing for anyone to see, that perhaps I might escape this round of COVID is only going to come back to bite me. And I think that I really should listen to Toby Zeigler, because truly, the last thing I want to do is to tempt the wrath of the whatever from high atop the thing. Probably best I don’t hit publish in that case…

The West Wing

Christmas eve and Melbourne is turning it on. Gorgeous sunshine and divine mid-twenties temperatures. It seems perfect and would be if it weren’t for the C word’s new O variant that is looming heavily. I went to the Queen Vic Market this morning with my sister for our traditional oyster breakfast, and kept having to talk myself off the ledge of overwhelming anxiety at the thought of being amongst far more people than I’ve grown comfortable.

But amongst it all, Christmas is here. A huge jar of buttery shortbread stars sits on the kitchen counter, grabby hands reaching in anytime we walk by. Crostoli have been made, eaten and more made. The Christmas tree is decked and glittery, wrapped gifts strewn. There is freshly assembled tiramisu in the fridge, time doing its magic so that when it’s served up tomorrow, it will be a perfectly pillowy delight of coffee and mascarpone. There is lasagna ready for this evening’s small gathering here. Tomorrow will see another two family get togethers and Boxing Day will be the final of the family assemblies.

I feel oddly relaxed, which is lovely because often at this point of the game, I’m a stressed mess with a list the length of all the versus of the 12 Days of Christmas, wondering where I can still find wrapping paper, and hopeful that the local bookshop will still be open for those last minute presents I forgot.

And so, I’m signing off for a few weeks as I enjoy some time off, dappled sunshine to light my days, memories to be made with my beautiful family, a new kitten cuddle, pups to take to the park, friends to hang out with, including some I’ve not seen in two years who somehow miraculously booked tickets on flights that actually made it to Australia. There will be walks along the beach, afternoons languishing on the back deck with my Christmas books (presumptuous of me, but it’s a good bet), outdoor tables at cafes where I’ll sit for hours, alternating between hot and iced lattes, and lots of food. And as little time as possible dedicated to dealing with diabetes, because I am so lucky that Loop has been part of my life

Two years ago, I was wrapping up one of the busiest advocacy years I’d ever had. My passport had been stamped well over twenty times as I flew in and out of countries across the world, presenting, running workshops, sitting in ad board meetings, fighting the good fight. It was exhilarating, exhausting, exciting. And 2020 started off in the same way. Until the world changed. But the advocacy efforts haven’t stopped. In fact, this year was probably my busiest ever. 2022 is already shaping up to be just as involved as this year, more so probably. I’m already scared to look at some months on my calendar, as dates are filling fast. I wouldn’t want it any other way. But that’s next year.

Thanks to everyone who has stopped by this year. I’ve had the most gorgeous messages from people – words of support, asks for help, messages of solidarity. I’m always so grateful to people when they reach out. And I’m grateful to everyone who has taken the time to read my words. I’ve always said that hearing the stories of others helps me make sense of my own diabetes. I hope that perhaps my stories here have helped others in similar ways.

And so, there is only one thing left for me to do before I close my MacBook and let the battery run flat over the next couple of weeks. And that’s make a donation to Insulin for Life’s Secret Santa campaign. Thanks to everyone who has already donated to #IFLSecretSanta this year. Hundreds of dollars of donations followed my earlier post about it. If you’ve been meaning to make a donation, please do. It is truly one of the most important things you can do at this time of the year.

I’m dedicating my donation to diabetes friends who have been incredibly important to me over the last year. Peer support continues to be a cornerstone of my diabetes management – I can’t see that changing any time soon. And I can’t see a better way to say thank you to those who have helped me by supporting a charity that helps others with diabetes.

Icing sugar rain on freshly made crostoli.

It’s been a while since my last diabetes in the wild encounter. It makes sense. I’ve barely left my house for the last 20 months and I’ve not really been frequenting the places where I would usually have those happenstance meetings – cafés and airports. Gosh, remember airports? Remember the queuing and the waiting and the frustrations and the delays and the cancellations? Anyway, I digress…

It shouldn’t surprise me that it was a café that provided the setting for my accidental encounter with another person with diabetes. I was working away, happy to not be in my house, even happier that someone kept bringing me outstanding caffeine. Happiest because I knew that every single other person sitting there was fully vaccinated. 

I was doing the sort of work I do best in a café – editing. I get into a zone, concentrate on the task, and just read and edit in a super-efficient and fixated way. I don’t get distracted by anyone around me, and the noise becomes a reassuring beat that I work to. I completely block out anything on around me. 

Including the fall rate alert on my Dexcom app. Anyone who uses Dexcom knows that this is a particularly urgent, loud and unforgiving wail. It cuts through absolutely everything. I absentmindedly nodded in the general direction of my phone when I heard it, but didn’t make a move as I was totally focused on rewriting a particularly sticky sentence. (Probably like every bloody sentence in this post…) 

And so, I didn’t notice a woman sitting nearby get up from her chair and walk in my direction. I didn’t notice her stop right at my table. In fact, it wasn’t until she cleared her throat and said ‘Excuse me’ that I looked up, realising there was someone right there. She was fixing her mask behind their ears at the moment I looked up at her, my eyes focusing away from my MacBook. I blinked a few times and smiled, and then reached for my own mask before realising it was already on my face. I exaggerated my smile, so I was smiling with my eyes. 

There was a slightly awkward moment as I waited, because, look, I’ve forgotten how to engage with people. I probably should have said ‘hi’, but I’ve really lost the art of chatting with people. How do conversations start? So, I was thankful when she introduced herself. And then she asked, ‘Are you okay? I heard your Dexcom a couple of times. I just wanted to check you are okay.’

And that was how I broke my streak of having conversations about diabetes with other people with diabetes I’ve never met before. 

Turns out, I’ve missed it. Really, missed it.

We spoke for a while, sharing the usual things, comparing notes about which HCPs we see, and talking about which tech we are using. She is about to start looping, so I answered a heap of questions, remembering that I need to not be too evangelical and gushy about it. I toned down my ‘It’s the best thing I’ve ever done for my diabetes’ (because it is) by adding ‘But, of course it’s a learning curve and can be tricky.’

We told self-deprecating stories about how crappy our attitudes to diabetes have been at different periods. We shared our Covid-19 vaccination stories and compared when we’d be getting boosters. And we spoke about how we felt every time diabetes was mentioned in connection to Covid-19. 

Through it all my Dexcom kept squealing and I ignored it because I just wanted to slurp up a diabetes conversation with someone in real life, where all we really had in common was diabetes. It felt like a therapy session, a confession, and catching up with a long-lost friend all in one fifteen-minute encounter. 

When our conversation ended, she turned to return to her seat, and I settled back, searching for the sentence I’d been working on. But before I could do that, she turned back towards me and said, ‘I read your blog. I’ve seen you here before…well, used to see you here before Covid…and I wanted to say something. It’s really lovely knowing that there is someone like me who comes here.’ 

And then I cried. Because I remembered just what it is to connect. How real it feels. It’s why I started this blog in the first place – because I wanted to meet others just like me. Well over ten years of writing about diabetes, twenty years of diabetes advocacy, and that feeling of connecting never gets old.

Lots more diabetes in the wild stories on this blog post from earlier this year.

I shared this photo to Twitter the other day:

I couldn’t care less if there are diet books on bookshelves at bookshops. Clearly there is a buck to be made with the latest fad diet, and so, diet scammers gonna scam and publishers gonna publish. 

What I do care about is the framing that health is limited to weight loss and dieting. 

Living with diabetes has the potential to completely screw up the way food, weight and wellbeing coexist. My own disordered thinking has come from a multitude of different sources. I know that even before diabetes I had some pretty messed up ideas about weight loss and my own weight, but once diagnosed all bets were off and that thinking went haywire! I know it didn’t help when, in the days before diagnosis as I was feeling as though I was slowly dying, someone effusively told me how amazing I looked after having lost some weight that I really didn’t ‘need’ to lose. And look at that! A little weight bias in there already as I talk about ‘not ‘needing’ to lose weight’. 

I remember that afternoon very clearly. It was Easter Sunday and my whole family was at my grandmother’s house. I’d had a blood test the morning before because I’d gone to my GP with a list of symptoms that these days I know to be ‘The 4 Ts’. (In hindsight, why she didn’t just do a urine check or, capillary blood check, I don’t know.) I was feeling awful and scared. I knew something was wrong, and suspected it was diabetes. 

But there I was, literally slumped on the floor against the heater (at my grandmother’s feet) because it was the only place I could feel any warmth at all. Sitting opposite me was a family member who felt the need to tell me how amazing I looked because I’d dropped a few kilos. I could barely see her across the room because my vision was blurry, but hey, someone told me I looked skinny. Wonderful!

That road to further screwing up my thought processes about weight and diabetes was pretty rocky and I was on it. I learnt that thing that we know, but we don’t talk about anywhere enough routinely, and that is that high glucose levels equal weight loss equals compliments about losing weight. (We don’t talk about it because there’s not enough research, but also because in the past a lot of HCPs have gatekept discussions about it because they think that by talking about insulin omission or reduction for weight loss will make people do it. Sure. And sex education for school-aged kids is a bad thing because by NOT talking about sex, teenagers don’t have sex. End sarcasm font.)

It has taken years of working with psychologists to undo that damage – and the damage that diabetes has piled on. I employed simple measures such as stopping stepping on scales and using that measure as a way to determine how ‘good’ I was being. As social media became a part of everyday life, I curated my feeds to ensure I was not bombarded with photos that showed a body type that generally is only achievable when genetics and privilege line up. I learnt to not focus on my own weight and certainly not on other people’s weight, never commenting if someone changed shape. I did all I could to reframe how I felt about different foods, because demonising foods is part of diabetes management.  

I was determined to parent in a way that didn’t plant in my daughter’s head the sorts of seeds that had sewn and grown whole crops in my own. While a noble ambition, I realise I was pretty naïve. Sure, we absolutely never talk weight at home, we never have trashy magazines in the house celebrating celebrities’ weight loss or criticising their weight gain. I’ve never uttered the words ‘I feel fat’ in front of my daughter even when I hate absolutely everything I put on my body. Food is never good or bad, and there is no moral judgement associated with what people eat. But the external messaging is relentless and it’s impossible to shield that from anyone. All I could do is provide shelter from it at home and hope for the best. 

But despite doing all I can to change my way of thinking and changing my own attitudes and behaviours, it takes a lot of work…and I find myself slipping back into habits and not especially healthy ways of thinking very easily. 

Which brings me to my favourite bookshop over the weekend and standing there in front of the health section. I was looking for something to do with health communications, or rather, the way that we frame life with a chronic health condition like diabetes. I wondered if there was anything that spoke not about ‘how to live with a chronic health condition’ but rather ‘how to think with a chronic health condition’. I didn’t want to read more about what to do to fix my body; I wanted to find out how to help focus my mind and love my body. But there was nothing. Nothing at all. 

Instead, there were shelves and shelves of books about losing weight, dieting, fasting, ‘cleansing’ (don’t get me started) and then more on fad diets.

When I tweeted the photo, one of my favourite people on Twitter, Dr Emma Beckett (you should follow her for fab fashion and fantastic, fun food facts), mentioned that it is a similar story in the ‘health food’ aisles of the supermarket, where there seems to be a focus on calorie restriction.

How has the idea of being healthy been hijacked by weight loss and diets? How has the idea that restricting our food, limiting nutrients, and shrinking our bodies equates health?

How did we get so screwed up at the notion that thin means healthy; that health has a certain look? Or that dieting means virtue? How is it that when we see diabetes represented that it so often comes down to being about weight loss and controlling what we eat, as if that will solve all the issues that have to do with living with a chronic condition that seeps into every single aspect of our lives?

It takes nothing for those disordered thoughts that are so fucking destructive, thoughts that I have spent so long trying to control and manage and change, to come out from under the covers and start to roar at me. Diabetes success and ‘healthy with diabetes’ seems to have a look and that look is thin. (It’s also white and young.) 

Health will never just be about what someone weighs. And yet, we keep perpetuating that myth. I guess that steering away from the health section of bookstores is selfcare for me now. Because as it stands, it just sends me into a massive spin of stress and thinking in a way that is anything but healthy. 

A couple of crappy anxiety days have left me feeling a little spent and exhausted. Add to that some low-key diabetes burnout, and I’m wondering if I can somehow leave diabetes out for the upcoming hard rubbish collection in our neighbourhood. 

The anxiety was mostly to do with a work thing yesterday which involved a live Q&A about type 2 diabetes remission. When I’m on my game, that sort of thing has me pumped! I know that the discussion will be lively and that there could be some contention in what we’re saying, and I thrive on robust debate.

But right now, I’m not feeling completely on my game. Burnout, lockdown and just feeling tired, combined with feeling a very long way away from friends and colleagues a lot of my work is with, has left me a little weary and downbeat. So instead of the fire I usually feel when I need to deal with something that could be a little controversial and provocative, I was dreading it.

A moment of light came after the live Q&A when I had a call from who wanted to speak with me about the new Type 2 Diabetes Remission Position Statement from Diabetes Australia. After watching, they decided to take the time to reach out to me and admit they were wrong about me. They thought I’d been dismissive and negative about the way they manage their diabetes, when in fact, it seemed I was the complete opposite of that. When I asked why they had thought that of me, they said, ‘You just seem so confident and assertive, and I mistook that for thinking you were really rigid in your beliefs about diabetes.’

It’s funny how we form impressions of people. Sometimes we can be spot on. Other times, not so much. I’ve been totally wrong about people in the diabetes community because once I’ve looked beyond the tweets, I see that there is far more to them than the soundbites that get all the attention.  

When people tell me (or, more likely, subtweet) that they think everyone should think the way I do about diabetes, manage their diabetes in the same way, feel the same about the issues important to me or that I think I speak for others with diabetes, I’m genuinely confused. I’ve never said any of those things. The about me page on my blog states: ‘This blog does not provide medical information or advice. I write about my own experiences of living with diabetes but please don’t think that you should take on board what I’m doing and apply it to you. We’re all different and our diabetes varies. Significantly. Get thyself to an appropriately qualified healthcare professional to help yourself out with your own particular brand of diabetes.’

I throw the caveat “my diabetes, my rules” around like glitter and anytime I do speak about diabetes, I am very clear that I am but one person in a very, very large choir, and that the audience should make a point of listening to lots of those voices. 

So, it is with no surprise at all that it seems that some corners of the LCHF world think that I completely and utterly condemn their chosen way of managing diabetes. What a lot of rubbish! I can only assume the reason they think that about me is because I have been pretty vocal about the way some in that community respond to others who have different ideas. I call out stigma and shaming, and I call out anyone saying that everyone should follow the same way of eating.

I stand by that. And I stand by it in all aspects of all types of diabetes. If anyone truly believes that there is one way and one way only to manage diabetes, they are very misguided.  

In case I was feeling too pleased with myself after that phone call yesterday, I was dragged back down to earth with a shouty email (in ALL CAPS) demanding to know why I don’t advocate remission in type 2 diabetes. Sweetie, I don’t advocate anything other than the rights of people with diabetes to do what they want to manage and treat their diabetes in a way that works for them. I advocate choice. Choice is critical and my passion lies in ensuring that people are given choice. 

I love my pump, I love LOOP, but I don’t reckon everyone should be on it. I don’t think everyone should do DAFNE or wear a Libre. I don’t think everyone should just follow what their doctors tell them to do. I don’t think everyone should be eating LCHF any more than I think everyone should be eating a vegetarian or Mediterranean diet. I wouldn’t try a vegan diet because the thought of no bacon makes me weep, but hey, if it works for you and you like it, can sustain it, can afford it and are happy doing it, high five!

Anyway, in a roundabout way, this post is to say that there is a new position statement about type 2 diabetes remission available and you can find it here if you’re interested

And it’s also to say that forming opinions of people in the diabetes world is perfectly fine and we won’t all agree or love each other (and that’s fine too). I know I’ve formed opinions of people based off one tweet, or one encounter. It’s probably quite unfair on my part, and when I’ve re-engaged with some of those people, I’ve found that they have a lot more going on that just that one idea of them I had. I’m glad I did try again. 

My anxiety is a little better today. I weathered yesterday’s storm and came out of it only mildly battered. I’ll call that a win. 

DISCLOSURE

I work at Diabetes Australia. I was not involved in the writing of the position statement that was launched yesterday. I’m writing about it because it’s interesting and relevant to my diabetes today and yesterday. 

I facilitated an event for Ascensia (disclosures at the end of this piece) last night/early morning and the crappy time was partly (mostly) my fault, because although I sacrificed the Aussies and suggested we draw the short straw in the time zone lottery, I forgot that daily saving would have kicked in for us meaning kick off time was 11pm and not 10pm. That may not seem much – I mean, what’s an hour? – but there is definitely a psychological barrier about doing work after midnight. (Anyway, I digress, and that paragraph has just about put me to sleep). 

The reason for last night’s adventures after dark was a facilitating gig for Ascensia’s latest Diabetes Social Media Summit (DSMS). The thing I love about (and why I am so keen to be involved) in these Summits is because they have tacked some difficult topics that are often hidden away. 

This one was no different in that we looked to address something that needs more attention – diabetes and women’s health. In my introduction, I wanted to make the point that diversity and inclusion is important when speaking about any aspect of diabetes, and that for us to be truly inclusive in a discussion about women and diabetes, we needed to hear from women who represent all corners of the diabetes world. I particularly referred to needing better representation from women in the LGBTQIA+ community. 

The other thing that we had wanted to make sure that we didn’t focus too much on diabetes and pregnancy, because so often that is the only easily information about women’s health and diabetes that can be easily found (and saying that, there does seem to be a bias towards women with type 1 diabetes). Of course, understanding and being aware of how diabetes can impact on pregnancy is important, but it is certainly not the only issue that women with diabetes want or need to know about. 

In fact, one of the discussion points was that for some women, pregnancy is not a topic they want discussed. There is the assumption that all women of childbearing age need information about having a healthy baby when that is not the truth. Contraception discussions do not necessarily equal an invitation for pre-pregnancy counselling, and there needs to be some sensitivity in how healthcare professionals in particular raise the topic, and rid themselves of the belief that all women want to have kids.   

There is so much more to talk about. So, so much more. 

We touched on how much our cycles can impact and influence glucose levels (and a very amusing tangent where we joked about how when we see monthly perfect glucose patterns, they clearly don’t belong to people who menstruate – or people who understand the absolute havoc hormones can wreak on CGM traces).

We spoke about birth control and how the OCP can also make a significant difference to glucose levels, yet many of us were not told about that. 

Of course, we spoke of menopause, but only briefly; briefly not because it’s not an important topic (or a super relevant topic), but because we just got caught up talking about other things (and perhaps my facilitating skills weren’t as tight as usual).

And we spoke about how cultural gender issues need to be shown and understood so that the experience of privileged white women with diabetes are not seen as the only experiences. 

For me, the central message that I heard time and time and time again was that topics about the very things that occupy a lot of the headspace of women with diabetes are simply not discussed with us. And there is little research to inform our decision making, or even to help us form the right questions to ask. At best, we are given some piss-weak explanation that points a finger at diabetes being to blame. At worst, we are dismissed. 

I do wonder when research and diabetes education will catch up. I know that there are some wonderful researchers doing some important work here, but we are so far from normalising discussions about women’s health and diabetes as part of our typical healthcare routines. We’re miles away from getting rid of the preconceived and outdated ideas about women’s sexual health. 

Beyond discussing different women’s health matters, we also spoke about just how these discussions fit in the diabetes community. This was a completely unplanned turn for the summit (it was not a topic on the agenda), but I’m glad we had it and I’m glad that I am writing about it. Because of the nature of women’s health, sex and diabetes, there is a lot of taboo, shame, fear, and vulnerability. I know that some of the rawest and most open I’ve been in my writing has been when I have been dealing with moments in my life that were so, so hard and I was so, so vulnerable. When I look back, I sometimes wonder if I was right to hit publish after writing, and perhaps I should have tucked away the paragraphs until I was feeling stronger. Or not published at all. While I have been told that my words have provided some comfort to others facing similar challenges, it left my gaping, open wounds very public and visible. 

After writing about miscarriages, I’ve been called selfish for wanting to have a child and potentially passing on diabetes to them. Writing about my fears of passing on diabetes to my child I’ve been told that perhaps I should have thought of that before I got pregnant. Speaking about body image concerns, I’ve been told to toughen up and stop being so shallow. I’ve seen and watched other women with diabetes experience the same thing, and I feel their pain as I watch them navigate the muddy, and sometimes distressing waters. 

We spoke about how women are treated in the diabetes community, particularly when we write about struggles and difficulties, and the words and terms that are thrown our way when we dare to share how we are feeling. The ‘angry woman’ trope that I’ve written about before has been directed to many others too. 

These discussions are real, and they are necessary. I am one of the loudest, most vocal supporters of peer support and have spoken about the value and importance of diabetes peer support and the online community on stages literally around the globe. Peer support saved me at times when I thought I was broken beyond repair. But it also can be a source of pain and bullying and nasty confrontations, and perhaps we need to have those discussions too so that when someone decides that they are ready to share and be especially vulnerable that they look out for themselves as much as looking out for the community. It’s all very well to want to share to connect and help with our own and others’ isolation but leaving ourselves exposed isn’t easy. 

One of the attendees last night reminded us that we could share with selected friends in the community, still allowing for that peer support but under the protection of a safe space. It’s interesting, because until maybe two years ago, I had never experienced how unsafe the community can be to individuals. I’d not felt that before. While I still share a lot, these days  I’m more inclined to turn to those trusted friends in the DOC who I know will be honest, open, but never nasty or judgemental. 

Online spaces are different for women than they are for men. The misogyny that is inbuilt to even those that we think are allies comes out, often surprising us, as throwaway comments about a woman’s age or appearance. It is ever present in the diabetes community too. I’ve rolled my eyes as some of the most vocal advocates who have loudly aligned themselves as being supporters of women, revert to type, with snide sexist commentary. I’ve seen people in the DOC referred to as ‘angry old women’ for daring to be furious, older than 25 and a woman! I roll my eyes now when I know someone has called me angry. I also know that they’ve just announced to everyone how threatened they are of women who dare to not go quietly, and how they expect us to remain in our place!

There was so much more that we could have spoken about last night. We didn’t touch on body image and disordered eating (and yes, I know that this is not the domain of women only, but this is about us!), we didn’t talk about sex all that much either, even though it is often highlighted as an issue that needs more coverage and information. Again, it’s not because they are not important topics; it was because the fluid conversation took a feminist turn that highlighted a highly biased social and healthcare environment where it is seen as perfectly fine that the needs, and concerns of fifty percent of the diabetes community are barely considered.

Perhaps if we had a more feminist approach to, and model of, healthcare, the misogyny that has meant the topics important to us have not been researched, and are not discussed, could be eliminated. And women with diabetes would not be feeling ignored.

Disclosure

I was invited by Ascensia to help plan the agenda for #DSMSWomen and facilitate the discussion. I have been paid an honorarium for my time. 

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.

__________________________________

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.

Do your diabetes appointments take on an eerily familiar routine? When I was first diagnosed, each appointment would open with the words ‘Let me see your book’. My endo was referring to my BGL record, an oblong-shaped book that I was meant to diligently record my minimum of four daily BGL checks, what I ate, what I thought, who I’d prayed to, what TV shows I’d watched and how much I exercised. 

I did that for about the first two and a half months, I mean weeks, okay, days and after that the novelty wore off and I stopped.

I’m not ashamed to admit that I did that thing that pretty much every single person with diabetes does at one point or another – I made up stuff. I was especially creative, making sure I used different coloured pens and splotched coffee stains across some of the pages here and there, little blood speckles for proof of bleeding fingers, and, for a particularly authentic take, OJ, to reflect the made-up numbers that suggested I’d been having a few lows. 

I’d show those creative as fuck pages – honestly, they were works of art – when requested, roll my sleeve up for a BP cuff to be attached, and step on the scales for my weight to be scrutinised. Simply because I was told that was what these appointments should look like, and I knew no better. 

And then, I’d walk out of those appointments either frustrated, because I’d not talked about anything important to me; in tears, because I’d been told off because my A1c was out of range; furious, because I hated diabetes and simply wasn’t getting a chance to say that. And anxious, because looking at the number of kilograms I weighed has always made me feel anxious. 

The numbers in my book, on the BP machine or the scales meant nothing to me in terms of what was important in my diabetes life. They stressed me out, they made me feel sad and hopeless, and they reduced me to a bunch of metrics that did not in any way reflect the troubles I was having just trying to do diabetes. 

These days, not a single data point is shared or collected unless I say so. I choose when to get my A1c done; I choose when to share CGM data; I choose to get my BP done, something I choose to do at every appointment.

I choose to not step on the scales. 

I don’t know what I weigh. I might have a general idea, but it’s an estimation. I don’t weigh myself at home, and I don’t weigh myself at the doctor’s office. I think the last time I stepped on a set of scales was in January 2014 before I had cataract surgery and that was because the anaesthetist explained that it was needed to ensure the correct dose of sleepy drugs were given so I wouldn’t wake up mid scalpel in my eye.  Excellent motivator, Dr Sleep, excellent motivator. 

Last month, I tweeted that PWD do not need to step on the scales at diabetes appointments unless they want to, and that it was okay to ask for why they were being asked to do so.

There were comments about how refusing to be weighed (or refusing anything, for that matter) can be interpreted. I’ve seen that happen. Language matters, and there are labels attributed to people who don’t simply follow the instructions of their HCP. We could get called non-compliant for not compliantly stepping on the scales and compliantly being weighed and then compliantly dealing with the response from our healthcare professional and compliantly engaging in a discussion about it. Or it can be documented as ‘refusal to participate’ which makes us sound wilfully recalcitrant and disobedient. It’s what you’d expect to see on a school report card next to a student who doesn’t want to sing during choir practise or participate in groups sports. 

What surprised me (although perhaps it shouldn’t) was the number of people who replied to that tweet saying they didn’t realise they could say no. it seems that we have a long way to go before we truly find ourselves enjoying real person-centred care.

Being weighed comes with concerns for a lot of people, and people with diabetes often have layers of extra concerns thanks to the intermingling of diabetes and weight. Disordered eating behaviours and eating disorders are more common in people with diabetes. Weight is one of those things that determines just how ‘good’ we are being. For many of us, weight is inextricably linked with every single part of our diabetes existence. My story is that of many – I lost weight before diagnosis and people commented on it favourably, even though I was a healthy weight beforehand. This reinforced that reduced weight = good girl, and that was my introduction to living with diabetes. 

From there, it’s the reality of diabetes: insulin can, for some, mean weight gain, high glucose levels often result in weight loss, changes to therapy and different drugs affect our weight – it’s no wonder that many, many of us have very fraught feelings when it comes to weight and the condition we live with. Stepping on the scales brings that to the fore every three months (or however frequently we have a diabetes healthcare appointment). 

Is it always necessary, or is it more of a routine thing that has just become part and parcel of diabetes care? And are people routinely given the option to opt out, or is there the assumption that we’ll happily (compliantly!) jump on the scales and just deal with whatever we see on the read out and the ensuing conversation? And if we say no, will that be respected – and accepted – without question? Perhaps another positive outcome is that it could encourage dialogue about why we feel that way and start and exploration if there is something that can be done?

It shouldn’t be seen as an act of defiance to say no, especially when what we are saying no to comes with a whole host of different emotions – some of them quite negative. Actually, it doesn’t matter if there are negative connotations or not. We should not be forced to do something as part of our diabetes care that does not make sense to us or meet our needs. When we talk about centring us in our care, surely that means we decide, without fearing the response from our HCPs, what we want to do. Having a checklist of things we are expected to do is not centring us or providing us the way forward to get what we want. 

How do we go about making that happen?

There are two boxes on my desk today because I am recording a little video for a new series at work. In my diabetes store cupboard, there are lots of boxes from currently using and past diabetes devices and products. 

These boxes all contain promises and hope – promises to make diabetes easier and the hope that some of the significant time dedicated to something that no one really wants to dedicate time to is gained back.

Burden is very personal. One person’s significant diabetes burden is another’s mild inconvenience. Some look at a CGM and see life changing and lifesaving technology and others see a nagging device of torture. I vacillate between the two trains of thought. 

No diabetes device is perfect and does all things. Most rarely even do what they promise on the box. 

And yet when we look online often all we see is the perfect stuff. With diabetes tech companies getting smart and becoming all social media savvy, they have looked to the community to see how we communicate and share. It’s not a silly thing to do. Many of the decisions I’ve made about diabetes tech choices have been based on what my peers have to say. But I’m selective about who I search for when looking for those personal experiences and testimonials. I look either for people I kind of know, or people who have a history of being open and honest and real about their experience.

I’d make a lousy ambassador, even though I am asked almost daily to either become an ambassador for a company or promote their product, with lots of free stuff thrown in. Some offer payments. Sometimes I agree to try something, but there are never any strings attached, and while I will accept the product, I will never be paid for using it, or for writing about it. (You can see that in my disclaimers when talking about product. I always say that I’m sharing because I want, not because it’s part of the arrangement for me to use gifted or discounted product. I’ve never done that.) That’s not to say that I have not had arrangements with different companies and been paid an honorarium for my time and expertise, but that is always in the capacity of being an advisor, or consultant. 

I’m too honest about the challenges of different diabetes technologies – you bet I love Dtech, but not everything about all of it! It’s why I am always wary of anyone spruiking any diabetes product who has only positive things to say. In the last 20 years, I’ve used or tried pumps from Medtronic, Cozmo, Animas, Roche and Ypsomed. I have loved them all. And hated them all. I’ve never had only good things to say about any of them – even the Cozmo which remains my favourite ever pump, and anytime I see one, I have strong happy feelings of nostalgia…but despite that, it still had its failings that I spoke about often when I used it. 

I’ve used CGM products from Medtronic, Dexcom and Libre and had few good things to say about some generations, better things to say about others, but never loved every single aspect of any of them. Because there is always something that isn’t perfect, or even almost perfect. 

And finally, I’ve used countless blood glucose monitors from every brand in Australia and some I’ve picked up on travels, and it’s the same deal: love some things, drop the f bomb about others. 

The times I have been gifted products, I have always been honest when talking about them, highlighting the pros and cons. Even though I always write about the positives and negatives, I’ve always urged people to read or listen to whatever I have to say understanding that there is a lens of bias with which I see them through. Of course there is, and others should consider that. I also know I have never consented to having anything I’ve said or written reviewed or amended by the company who has kindly gifted product, or have I promised to do a certain number of posts or tweets or Insta pics about them. The sharing I do is always on my terms as are the words in those shares.  

I have, however seen many contracts these days that are very prescriptive when it comes to the expectations and commitments of the people being given product. I don’t have an issue with that; I couldn’t care less really. But I don’t think that simply putting the words #Ad on a post gives people the true picture behind the arrangement in place, which is important for the reader if they are to consider just what bias could be at play when reading someone’s opinions.

I am always pleased when I see that industry is engaging with PWD. There should be clear lines of communication, and hearing what PWD say is critical – far more so, in my mind, than what the shiny brochures have to say. But just as I read what the company’s PR messaging has to say with some scepticism, I do the same when I am not clear of the pact between the company and the PWD. 

Diabetes devices rarely, in fact, I’d go so far as to say NEVER, do all that they promise on the box. I think I’ve known that all along, but it wasn’t until I started using something that doesn’t come boxed up in sparkly, fancy packaging that I truly realised just how much that wasn’t true. 

Those promises to do less diabetes – to reduce that burden – was only ever true to a small degree. And sometimes, there was added burden that you could only truly learn about if you knew where and how to access others with diabetes, in particular those that didn’t sound as though they were simply regurgitating what the brochures said. 

Using an out of the box diabetes tech solution isn’t all perfect. There are somethings about DIYAPS that annoy me. A red loop on my Loop app can be frustrating – even if it’s a simple fix. Needing to carry around an OrangeLink and making sure it’s in range gets irritating. Not having a dedicated 1800 number that I can call 24/7 and handing over any concerns to someone else means that the troubleshooting burden falls squarely on my shoulders – even if there is a community out there to help me through. 

And yet, even with all that, it is the first time ever that I have been able to say that I do less diabetes. How much less? Well, I think that Justin Walker’s assessment from a presentation at Diabetes Mine’s DData event back in 2018 is right. He said that using a DIYAPS has given him back an hour a day where he no longer needs to think about diabetes

Last week, I hit four years of Looping.  That’s 1,460 hours I’ve clawed back. Or over 60 days. If DIYAPS came in a box (and with a PR machine and marketing materials) and it promised me that, I wouldn’t believe it based on previous experience. But I guess that’s the thing. There is no box, there is no marketing juggernaut. It’s just the stories of people with diabetes who have worked through this and worked it out for themselves. 

An out of the box marketing solution for an out of the box diabetes technology solution. I’ve never trusted anything more. 

More on this:

Advertising in Diabetes

Friends, how’s your mental health today. Mine. Is. Shit.  

Gosh, I feel as though I have been through the wringer, hung out to dry and then, just at the moment that everything was looking good again, dropped in a muddy puddle and trampled on by a herd of bison. I mean, not really, because bison are not typically found in the especially hipster part of downtown Melbourne I reside, but hopefully you now have a picture of how I’m feeling. 

Not even the overabundance of sparkly necklaces (and ever-present red lipstick) I threw on this morning can distract from the fact that I am exhausted, look as though I’ve been weepy for most of the day (because I have) and am just feeling so damn over everything right now. 

Not a good mental health day.

Somehow, I held it together for a live Q&A about diabetes and mental health which I may or may not have treated as my own personal therapy session. (You can watch the video here.) Thankfully, psychologist, the ever-wonderful Dr Adriana Ventura, offered some fabulous tips for how to take care of our mental health during this time that is still being referred to as unprecedented times, but I’ve taken to calling the clusterfuck period. 

The moment today that was the most difficult for me to deal with was just after 11am when the NSW Premier told us the grim news out of her state. I know that I probably should stop watching the pressers, especially the ones out of NSW. It’s not my state, so most of what is being said is actually not all that relevant to me and my family, and the repeated lies that are casually thrown around like confetti at weddings we can’t have anymore make me furious. And yet, even knowing that, I find myself sitting through them most days, yelling at the screen while madly tweeting my fury. 

But today, instead of yelling, there was crying. The NSW Premier said ‘We extend our condolences to the family of a man who has died. He had received one vaccination. And he DID have underlying health conditions.’ She accentuated the word ‘did’ to underline what she was saying. 

And so, where back, or perhaps still, at this point. That point is where we dismiss those with health conditions as nothing more than covid collateral.

I cried as she said it, angrily wiping away tears at how easily I was once again being made to feel expendable. I felt sad and broken and just so damn beaten. I have spent the last twenty months doing all I can to protect myself, knowing full well that those efforts protect others too. I rarely go out; I never leave the house without a mask; I’ve washed my hands and rubbed so much sanitiser into my skin that I feel the dermatitis that has started will never leave; I’ve followed all restrictions; when I do go anywhere, I check in at each location; I’ve had a covid test every time I so much as feel sniffly; and I got vaccinated the second I was eligible.

I have been deliberately compliant when it comes to covid.

And when it comes to diabetes, my deliberate non-compliance has meant that I am continuing to manage in a way that, according to every HCP and researcher I’ve ever met, is giving me the best chance to live well and to live long with diabetes. 

And yet, despite all that, if I get covid and die, the message is it’s because I had an underlying condition. I already have one foot in the grave; covid just gave me a gentle push the rest of the way. 

Well, fuck that.

I know I’ve written about this before, and honestly, this far into it all, I should be better at just ignoring it. But when it is coming from our politicians and the media, and I’m hearing it from people in the community, it’s hard to not take it personally.

The man the NSW Premier referred to, died from covid, not his pre-existing health condition. It certainly may have meant that covid was complicated for him, but if he’d not got covid in the first place, he probably would still be alive. His underlying medical condition doesn’t make him any less worthy, or any less of a loss. It doesn’t excuse his death.

I don’t know when people will stop with this hurtful and harmful rhetoric. I’d have hoped that by now the communication efforts from those who stand up every day to tell us the bad covid news would be more nuanced and more respectful. 

I guess that’s too much to hope for.  

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