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Let’s talk about perimenopause, periods, and diabetes. I’ll just wait a moment while a heap of people log off right now.

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If you’re still here, hi! Shall we go on? 

For the first, I don’t know, maybe 12 years I had my period, I had absolutely no regularity to it at all. I could never understand people who told me they got their period like clockwork, because for me the clock worked intermittently. It was less ‘that time of the month’ and more ‘that time of whenever’. Sometimes it came every three months. Sometimes every four and a half. It was a little surprise that showed up without warting when it felt like it, stayed for a few days, was minimally annoying (never particularly heavy and hardly any cramps at all), and then disappeared again, only to appear when it next felt like it. I spoke with my GP, and they weren’t concerned, and told me to celebrate the fact that I didn’t need to deal with period palaver each and every month. 

This was all good and well until I was ready to have a baby.  A regular period suggests that ovulation is happening regularly and that is kind of important if you need an egg to be fertilised. That wasn’t happening for me. Some fun fertility treatment (‘fun’, in this instance, means ‘frustrating, lots of tears, desperation and wondering why my body wasn’t doing what it was meant to do’), and I managed to get pregnant and have a baby. 

And then, from six months or so after I had our daughter, my periods started happening regularly. Like clockwork. It was as though pregnancy had rebooted the reproductive bits of my body and for the last 18 years, I’ve been paying GST on period products every month. 

During this time, I learnt that periods and diabetes don’t play nice. I’ve struggle to find patterns in my cycle so as to run different temp basal rates on my pump to accommodate. Anytime I’ve thought I’d nailed it and settled into a neat routine, the next month everything would go haywire. I guess I settled into another routine: a routine of no routine, where I just had to wing it at whatever time in my cycle things started to look a little sketchy. Loop certainly helped. I could see there were days each month when it was working overtime for no apparent reason, but those days didn’t correspond with the days the previous month. Or subsequent month…

And so, that brings us to present day when it’s time for another life transition or whatever euphemism you want to use to avoid using words that distract attention from hormones, uteruses, blood, and vaginas. 

The pretty regular cycles have stopped. I’m not back to three or four (and a half) monthly, it’s more like six weeks or three weeks or some other weird timeframe. My period is on the most bizarre schedule now that is, quite frankly, bloody (yes, I know) annoying. And when it does deign to stop by, it either stays around longer (as in days…) or pops in for just a day or two. Or, even worse, seems to be done after a few days, only to return a day afterwards. Truly, it sucks!

I have made an appointment with my gynaecologist to check-in (it’s probably cervical screening time again) and for a check-up. I know that my experiences are in line with what heaps of other diabetes friends have experienced (yeah, we turn to each other because where else is there to go?), but I have a heap of questions to ask, and accept that there may not be answers. 

And I’ve spoken with my endocrinologist. I think that I only ever think of my endo as my ‘diabetes doctor’ but really, her expertise in hormones is pretty bloody useful right now. And the fact that she does some work in a menopause clinic is hugely useful! 

But here’s the thing. There are not pages and pages of information out there about diabetes and menstruation or diabetes and menopause. Or how diabetes affects your period during perimenopause. In fact, as with so many things that affect those of us dealing with periods (when they start, when they happen and when they stop), there is a dearth of information and very little research. I mean, it’s no surprise, because the patriarchy in health (as everywhere else) is all powerful. (Don’t believe me? Look at the number of resources about, and treatments for, diabetes and erectile dysfunction as compared with diabetes and menstruation or diabetes and menopause…)

Meanwhile, I just keeping trying to work it out, and speak with friends with diabetes to listen, learn and laugh as they share their stories. And watch as we start to open up more and write more and talk more in our own communities and advocate for more attention. Because that’s the story of diabetes community – we start the conversations that need to be had and that sets off a chain reaction where others get on board. So…get on board!

A photo of my hand holding Dr Jen Gunter's book 'The Menopause Manifesto'. Black writing and a megaphone on the pink cover. There is a blurred bookshelf behind.
Dr Jen Gunter’s Menopause Manifesto is really an incredibly useful resource. It’s not diabetes specific (although, there is general information about diabetes that is excellent). Click on the image for where to purchase. 

More? Here’s The Diabetes Menopause Project.

One of my favourite memes on social media is the response to people who tell the world they’re taking a break from or leaving social media groups or platforms: ‘This is not an airport. There is no need to announce departures.’ (Aussie airports at the moment are full of cancelled flights, so departure announcements seem to be few and far between, but I digress.)

And so, I didn’t announce that I was taking a little break from the online world. It wasn’t really planned. But it has coincided with a couple of weeks break from work and it’s been nice to step away a little and just be. Plus, it’s given me a lot of time to write and write and write and smash deadlines for some of the freelance work I never seem to have enough time to get done. (My submission emails inevitably start with ‘I’m so sorry for the delay in getting this to you…’) But here on Diabetogenic, I’m the editor, so delays are only holding me up and it would be weird to apologise to myself for repeatedly missing deadlines, especially when I don’t even have deadlines (mostly because I don’t set them because I know I’d never meet them) and there I go digressing again and is it any wonder I get nothing done?!

Having said that, I’ve received dozens of emails from people asking when to expect a new post, so to everyone who has messaged or wondered: ‘I’m so sorry for the delay in getting this to you…’.

But here I am back again, with a heap of great things I’ve seen recently and I want to share them here in a bit of an interweb jumble!

I’m writing

Yes, I know it’s weird to share my own writing on my own blog, but whatever! Plus,, there is nothing wrong with a bit of self-promotion. I’m back writing for diaTribe and absolutely delighted to have had these two pieces published recently.

This one is about how it’s important to tell stories of people with diabetes who choose to not run marathons or climb mountains in amongst stories of those who do. 

And this one is about a new type 1 diabetes screening program for Australian children. I write about the reservations I had about having my daughter screened when she was little, but how things might be very different with research like this. The response to this article has been lovely and a lot of parents with diabetes have reached out to say that they have had similar concerns and feelings to those I articulate in the post. 

Advocacy through art

I’m a huge fan of Jenna Cantamessa’s artwork, and this beautiful image and accompanying post is one of the reasons why! Click on the artwork to be taken to the TypeOneVibes Instagram account to read Jenna’s words.

Stripped Supply

I’m always happy to promote smart women doing smart things and so let me introduce you to Ashley from Stripped Safely. Here we are at the recent Australian Diabetes Congress.

When Ashley’s boyfriend was diagnosed with type 1 diabetes, she realised there was a gap in the market when it comes to mail ordering NDSS supplies. Remember the old days when we used to be able to easily place an order online and have our pump lines or BGL strips delivered straight to our front door? Well, Ashley is making that happen again. It’s a subscription service and is super easy to use. Details about how to use Stripped Supply here.

Gong

You bet I’m proud to share this! Diabetes Australia’s Heads Up on Diabetes campaign recently received an award from the Australian Patients Association. The campaign was recognised as the Best Patients’ Campaign and how wonderful that shining a spotlight on diabetes and mental in such a powerful way has been awarded. 

I’ll just say that while it is truly amazing to be acknowledged in this way, the real measure for me of the success of a campaign is how the diabetes community responds and it was clear from year one of this three-year campaign that people with diabetes from across the world absolutely loved it, as evidenced by the number of times the campaign videos were shared online. Oh, and there’s something quite incredible about sitting in a conference room and seeing our work played back to us by someone from outside the organisation. Yeah – that’s happened a number of times! 

The Human Trial

So much buzz in the diabetes world at the moment about the incredible documentary out of the US, The Human Trial. Until 9 September, you can stream the film for free by going to this link. You will be prompted to make a donation if you can. All funds raised go to diabetes research.

More about this documentary soon.

Advocacy through poetry 1

At the recent Australian Diabetes Congress, I had the honour and pleasure of chairing a session with an brilliant array of diabetes advocates from Australia and across the world. One of the speakers was Ash Byrne who began her presentation with an incredibly powerful poem and then went on to speak about the mental health burdens of diabetes. You can see Ash readying her poem, Invisible, at this Facebook link.

Advocacy through poetry 2

Aussie diabetes advocate and #dedoc° voice, Leon Tribe shared this poem on Twitter earlier this week which beautifully explains the power of language and communication between people with diabetes and our healthcare professionals. (You may need to click on the image to read the poem more easily.)

Stigma – diabetes and beyond

I have a new thing, and I didn’t want to talk about it. In part, because of stigma. Mostly, because of stigma.’ 

This is the start of a powerful post from Dana Lewis where she shares how the stigma that comes with diabetes has influenced how she feels about being diagnosed with another autoimmune disease. Read it here.

TEDx does diabetes advocacy

I’ve been a long-time fan of Grainne Flynn’s advocacy work and have shared her posts here before. Recently, she did a TED Talk about grassroots advocacy. It is all shades of brilliant and an absolute joy to watch. So… watch!

#dedoc° is busy! 

There is a lot going on in the world of #dedoc°! Here’s just a taste of upcoming events that everyone can get involved in. Plus, the #dedoc° voices program will be kicking off again later this month at EASD with a cohort of new voices and alumni on the ground in Stockholm as well as following along virtually. 

I’m so excited to be part of the #dedoc° symposium at EASD! Delivering a community led and focused symposium as part of the scientific program at a professional is a Big.Deal. We’re continuing to live and breathe #NothingAboutUsWithoutUs in the most impressive ways!

Disclosures

As always, I am thrilled to share things that I’ve found interesting, but disclosures are important. I’ve not been asked to share anything you see here, but figure if I find something interesting (or feel like doing same shameless self-promotion) you might too. I also figure that being transparent is important as is reminding you to consider my bias when sharing things.

  1. I am a paid contributor to diaTribe
  2. I am the Head of Communities & International Affairs at Diabetes Australia
  3. I am the Global Head of Advocacy at #dedoc°

A new diabetes bag arrived in the mail yesterday and isn’t it an absolute joy and delight?

I have so many of these bags from Monica at Casualty Girl, but when I saw this new colour way, I knew this rainbow design was was being added to the collection as soon as I saw it on Monica’s Instagram. As my guitar-collecting husband keeps telling me, the right number of guitars is ‘one more’. Guess the same can be said for these pouches!

You can get your own bag just like this (or one of the many other designs) from the Casualty Girl e-store. She also sells gorgeous clothing, phone cases and other things to inject (yeah, I know) a little bit of fun – and colour – into diabetes. Which is always a good thing.

(I purchased my own bag because supporting diabetes artists and creators is good for the soul.)

(And no, I didn’t buy it just to style this photo, but it was literally the first thing I did as I took it out of its packaging and I’m not mad about it.)

It’s very late in Australia and I’m hypo. And I’m angry, so there’s a trifecta that suggests the last thing I should be doing is publishing words. Especially when it’s a post about something I’ve written about a heap of times before.  

And yet, I’m going to write about it AGAIN because for some reason people down the back have not yet got the message that diabetes is not an amusement park ride for their entertainment, and the devices we use to, you know, keep us alive, are not trinkets to play with for kicks. 

Just stop it. 

This is, of course, off the back of yet another article by another person without diabetes who whacked on a CGM and then was horrified because their glucose trace trended upwards when they ate carbs. It obviously returned to an in-range number within a short time because their body works as it is meant to. I don’t know about you, fellow friends with diabetes, but I really am sick of people with working pancreases wearing diabetes devices to demonstrate to us that they don’t really need to be wearing diabetes devices. We get it; your beta cells know what to do. Stop showing off. 

In this article, the writer referred to wearing a Libre for two weeks as ‘an experiment’. Cheers for that. People with diabetes wear these devices because they keep us alive, give us data that is essential for accurately dosing the drugs that keep us alive, and alert us to glucose levels that can plummet or skyrocket, two things that we try to avoid. So we can stay alive for longer. It’s less of an experiment and more an act of survival.

Using this tech to prove to yourself that a high GI piece of fruit or a bottle of Coke makes your glucose levels go high is not an experiment. It is basic science that anyone with year 8 biology, or access to an iPhone and IFL Science could figure out. 

But okay, call it ‘biohacking’ and knock yourself out as you believe that this little investigation is contributing to scientific discourse.

Look, we can just think this sort of stuff is a bit of mindless, meaningless faff, and it would probably be good for my blood pressure if I could do that. But honestly, I think it is far more problematic. 

Last year, we had some influencer talking about how she uses CGM as a weight loss tool. What a mind-bending disaster that was as I tried to hold onto years of retraining my thoughts, and not fall down the rabbit hole of diet culture and lousy body image that has hounded me for pretty much my whole life.  

In this latest article we have gems like this one: However, my daily graph unfolds like a polygraph test: reaching as high as 7.9mmol/L after I’d had dinner.’

Sure, let’s present the food decisions people with diabetes make as lie detector tests. We already are made to feel guilty for looking sideways at a piece of cake, so cheers for adding to that. 

And while we’re here, let’s demonise food and food groups, because the thing we want now is for able bodied people to start judging people with diabetes for eating half a banana, or a chocolate croissant. (Two examples given in the article that resulted in glucose spikes. Because of course they did and many people with diabetes could explain why.)

I really don’t know why people without diabetes keep doing this. I don’t understand what they are trying to achieve. Every single time an article like this gets published, it annoys and infuriates people with diabetes. And nothing new is shared. There is literally nothing in this article that we don’t already know or hasn’t been written by the latest non-PWD who decided to whack a Libre on their bicep. There is no illuminating factoid that suggest wearing a diabetes device is a good idea of people without diabetes. There is nothing that makes me think that people with diabetes will be better off because of this article. 

And, by the way, if you think that non-PWD wearing diabetes devices will bring prices down, that’s not going to happen. Ketone strips have not magically come down in price because every keto bro worth their bone broth keeps a stash in the bathroom cupboard. In fact, the only effect that this increase in demand has caused for folks with diabetes is that it has become more difficult find ketone strips on the pharmacy shelf. 

I’ll say it again: There is absolutely no reason for anyone without diabetes to wear diabetes devices. If you’re doing it because you think it will give you an insight into what it’s like for PWD to wear them, it won’t. Want insights? Ask people with diabetes for their experiences, listen and learn. 

And if you are doing it for some biohacking experiment, just stop it. Please. It’s highly likely that in your excitement to share that the chocolate bar you ate in the afternoon spiked your glucose, the flow on effect will be stigma, blame and judgement hurled at people with diabetes. I get that probably wasn’t the intention, but because the writer lacks the nuances to communicate about diabetes, it is likely it will be the outcome. 

But, if you insist on wearing one, please at least do people with diabetes the courtesy of not writing about it and publishing it in a daily newspaper for clicks. Or perhaps if you do hit publish, and call that article ‘I wore a glucose tracker for two weeks – it’s bad news for my favourite breakfast’ you could acknowledge the good fortune you have of being able to draw a line through ‘wear a diabetes device’ after 14 days and know you don’t have to do that every day for the rest of your life which is what we have do to. 

This year’s eye screening appointment had aspects that were comfortingly familiar, and anxiously new. And I’ve come home with a very different feeling to the way I usual feel.

I’ve been going to the same private eye clinic for twenty years. I usually see the same orthoptist and always see the same ophthalmologist. This year, I saw a (new for me) orthoptist who opened with the clanger ‘Do you check your glucose levels?’ (I wasn’t aware it was a choice…) and followed up with ‘What is your glucose level usually?’. (This is not a question.) The rest of that appointment was comfortingly familiar – no changes in what I can read on the eye chart, excellent eye pressure and no vision changes. She put in drops and sent me to the next waiting room to wait to see my dreamy ophthalmologist.

And he is dreamy. I adore him. I mean, I hate seeing him and I tell him that each year. Then he laughs and thinks I’m neurotic, because I am neurotic, and that is how pretty much each and every year’s appointment starts. Comfortingly familiar. 

This year was no different. He always asks how I am, how my family is, how work is going, what’s going on with my diabetes and other friendly chatter to settle me in and get an idea of what is going on in my world. He asked if I’d had much of a chance to travel and how I was dealing with COVID times, or, as I now think of it, normal life. Comfortingly familiar.

As was the way he shone the Very.Bright.Light in my eyes, made reassuring ‘hmmm’ noises and told me that there was absolutely no hint of any diabetes-related eye stuff going on in my eyes and that was truly great after twenty-four years of diabetes. I always do appreciate the way that he is such a great cheerleader for diabetes longevity and acknowledges what a slog it can be. Comfortingly familiar. 

So,’ he said. ‘It’s all great news again from a diabetes perspective. However…’

Huh? ‘However…’? We don’t do ‘However…’. We do me standing up and promising to return the following year. Not ‘However…’ Yet, here we were. The anxiously new part. 

‘…However, I can see really early age-related macular degeneration in one eye. Really early. There’s nothing to worry about at all.’ He looked at me. ‘You don’t need to worry.’

And then I laughed, and he laughed because the idea of me not worrying is hilarious, and I had already jumped beyond worried and landed somewhere near stressed, anxious and ready to burst into tears. (I at least managed to wait until I got home for the last part.) 

I had questions and he patiently answered all of them. We spoke about family history. Apparently if a parent has AMD, their kids have a 50% chance of developing it. (Looking at this as a positive because it means that my sister might be right. Happy to take this one for the team, Toots!) He then spoke to me about things to do at this stage that help. The first is to not smoke. I’ve never been a smoker, so that’s an easy one. Then he asked, ‘Do you eat well?’ My heart sank. Another food-related thing? Turns out that eating leafy greens is protective which is fine because I love vegetables and it’s mandated in the hipster suburb where we live to eat three serves of kale a day. And finally, keeping up with regular appointments. Annual visits are still final.

‘So, Renza, It’s not diabetes. This is because of your age. After all, you’re 50 next year.’

‘Settle down!’ I said and suggested he dial things back a little. ‘I’m not even 49 yet.’ He looked at my chart again and needlessly pointed out that regardless of my current age, I am still turning 50 next year. (I’ll just point out that this was also comfortingly familiar because he frequently mentions that I am getting older.) 

I sighed. And got into the car with my dad and told him my news, opening with the comfortingly familiar and then moving onto the anxiously new. We went for a coffee, and I tried to focus on the positives. And then I got home and had a little cry. 

Because here’s the thing. I expect things to break. I’ve been told that things are going to break thanks to diabetes since the day I was diagnosed. And so, whenever something doesn’t break, it comes as a huge surprise. I’ve been holding my breath all week in anticipation of today’s appointment. I know that this is just a tiny hairline crack at this point, but it still has triggered a lot of stuff in my head right now. Sure, this may not be a catastrophe and sure, there is enough rational thinking to know that it’s early, I’m linked in with great healthcare professionals, and we know what to look for. But still. It’s another thing. Another worry. Another concern. Another part of my body not working completely properly, or at least indicating that it’s not going to work properly in the future. 

And so, I’m home now with a very different feeling to the way I usually feel after my annual eye screening. I’m already turning to the community to see who I can find there who might have some advice and understanding. I’m involved in a European ad board which relates to AMD and DME, so know that there is a whole network there who I can talk to. And I’m writing here to see if anyone out there has an experience to share. Because that’s what I do. Turn to community. I have the HCP stuff sorted. Now I’m looking for my people in the real world…

Waiting with diabetes (after dilating drops are in.)

More about eyes

How having a brilliantly kind ophthalmologist means I never miss an eye screening.

A chance encounter with an optometrist friend.

The comfort of knowing how eye screening appointments go.

The time I had a needle in my eye.

Always a worrier when it comes to eye screening.

All about my first cataract surgery. And after my second surgery.

What my dad has to do with my annual eye screening.

Psst…forgotten something?

If you’re in the northern hemisphere right now, you’re possibly all caught up in the sunshine, splashing around at the beach or spending time off work just taking time out. If you’re from the southern hemisphere, you’re either smart and have taken a holiday to Europe because EVERYONE.IS.IN.EUROPE.RIGHT.NOW, or under fifteen quilts in front of a roaring fire, counting down the days until it gets warmer. Sadly, I’m in the latter group.

I get it. Things slip by either way. 

But! You only have a few days left to make sure you don’t miss out on applying for a #dedoc° voices scholarship. Wherever you are, a scholarship means you have something to look forward to in a couple of months’ time and the absolute thrill of either virtually or in-person attending a global diabetes conference or two. That’s right – TWO! EASD (European diabetes conference) and ISPAD (paediatric diabetes conference) are the next international conferences on the diabetes conference calendar. Both will be hybrid, with the in-person locations being Stockholm and Abu Dhabi respectively. 

We’re well over two years into the #dedoc° voices program now, and the awesome thing about it is that it’s not just about the few days of the conference where you get to learn from incredible researchers and clinicians, while waving the lived experience flag and being surrounded by others with diabetes. I mean, that is all pretty great. But being a #dedoc° voice goes way beyond that!  Once you receive a scholarship you are part of a network of remarkable diabetes advocates from across the world, and this network is the most supportive, encouraging, brilliant group of people, always ready to help. Every single week, I see people reaching out for support and advice and the responses are swift and many. I’ve not seen a single example of anything other than support, and have watched advocates truly flourish as they have worked with others, developed mentoring relationships and been supported to do brilliant things. 

Unless you’re part of the program, you wouldn’t know this. And here’s the deal: anyone can become part of it. The #dedoc° voices program is open to people from across the world and everyone is in with an equal chance. You just need to spend some time completing an application. It is a competitive process, and places are limited. The people who get accepted are the ones who have taken some time with their application and really been able to demonstrate just how they are going to #PayItForward to their diabetes community if successful. No one is a shoe in; having a high follower count on socials means nothing if your application is sub-par. We take people who are new to the diabetes advocacy space, and are looking for a hand carving out their space, as well as seasoned advocates who are keen to work with others and become part of a global network, outside their own country.

So, get on it! Click on the image below, fill in the form and join us! You get to work on your advocacy while giving back to the community, all while wearing the #NothingAboutUsWithoutUs badge. How amazing is that?!

More on #diabetogenic about the #dedoc° voices program:

#dedoc° voices helping people with diabetes get into professional conferences

How #dedoc° voices supported people with diabetes in Ukraine

More on why to apply to join the #dedoc voices program

Disclosure

I have been an advisor for a number of years, and am now working with them as Head of Advocacy. 

There are days working in diabetes advocacy that are pretty special and today is one of those days. 

Because from today, all Australians with type 1 diabetes are eligible for subsidised CGM products. That means, all 130,000 Aussies with type 1 can access affordable CGM and Flash GM in the same way as all other diabetes supplies.  

It’s July 1 and kick off is today, so there are likely to be some hiccoughs. And it’s going to take some time for everyone involved – from those of us with diabetes, our HCPs and pharmacies, plus anyone else – to become fluent in it all. 

All the information is on the NDSS website, and I know it seems that there is heaps of detail (there is), but it’s worth taking the time to work out which group you are in and understand the process that will be required for you to access subsidised CGM.

I know that there are some people who are a little (a lot) annoyed that one of the regulations that has been put in place. Some people who are new to the NDSS CGM scheme won’t need to see a HCP before being eligible to access subsidised supplies. The rules to be in that group are as follow:

  • Must be already using CGM or Flash GM
  • Must have ordered CGM or Flash products from the supplier between 1 January 2022 and 1 June 2022

If this is you, there is an easy form to fill in, requiring just a few details including the product you intend to use so that the NDSS can validate that you have indeed ordered within the required timeframe. If you’ve ordered outside that timeframe, you’ll need to have your eligibility form completed by a HCP.  

These rules will mean that some people with diabetes who have been using CGM for some time, but have not placed an order with a supplier between 1 Jan and 1 June, will not be fast-tracked, and will need to wait until they next see their HCP to fill in the required form (or have their HCP fill it in online before their next appointment).

I’m in that situation. Despite having used CGM for over 10 years (long before most diabetes HCPs even knew what CGM was!), I will still need to see a HCP to have my form filled in. I’ve been using expired G5 sensors or G6 sensors donated or purchased from pharmacies or others with diabetes for the last couple of years. I did place an order recently to take advantage of a super cheap offer that had been made to lure users, but that was after 1 June. 

While frustrating (and I know a lot of people who have found themselves in the same situation), I do understand why it’s necessary. I have heard of dozens and dozens of people who have never used CGM or Flash, who jumped in to get the super cheap introductory offer AMSL were offering for Dexcom G6, and others who ordered a free Libre sensor. 

Sure, we can argue that people with diabetes are able to work out how to use tech without HCP instruction, and that probably the case for most people. But there are some people who might find it difficult and that might mean they are not able to get the best out of the device. There is no point using any sort of diabetes technology if it’s not being used properly and I say that as someone who used a pump for the first three years without decent training and education and, because there were so few pumpers around at the time, no peer learning opportunities back then. I was self-funding in 2001 when I started, paying around $300 a month and getting absolutely nothing of value out of it. What a waste of money. 

The NDSS is a taxpayer funded initiative and I guess, as a taxpayer, it’s reasonable to want to know that those accessing it are benefiting from it as much as possible. 

If we can look beyond the initial teething issues that are inevitable and step back to look at the big picture, Australia’s entry into the #CGMForAll people with type 1 diabetes is incredible and stands up when compared with what is available elsewhere in the world. 

There criteria is pretty broad meaning that absolutely no one with type 1 diabetes should miss out. And while initial forms need to be completed by a HCP for many, there isn’t an assessment process that becomes a barrier to access. I have friends with diabetes in other parts of the world where in writing there appears to be #CGMforAll, but the reality is that HCPs wield a lot of power before that becomes a reality. The hoop jumping here in Australia is relatively minor (even with the matter mentioned earlier in this post).

I certainly think that within a few months everyone who wants to access CGM through the NDSS will have been able to. And in a couple of years’ time, subsidised CGM access will just be part of what we get here in Australia, and will be expected. I suspect, however, that the ten plus years of advocacy I’ve been involved in won’t be forgotten. This win has been hard fought. But jeez was it worth it!

DISCLOSURE

I work for Diabetes Australia who administers the NDSS on behalf of the Australian Government. I do not work in the NDSS team. My access to the NDSS CGM initiative is the same as for every other person with type 1 diabetes in Australia – I’ll be seeing my endocrinologist at the end of July to get her to complete the relevant form so I can access subsidised product. 

The fiction new releases section at Readings Books in Carlton is on the lefthand side, right as you walk into the store. It’s often the first place I stop on my frequent visits to my favourite local bookstore. 

On Sunday night, as we wandered in after grabbing a coffee and bigne San Giuseppe at Brunetti’s across the road, I turned left as we walked in. I slowly wandering around the high table in the middle of the section before turning my attention to the shelves along the wall, book covers facing outwards, enticing browsers to read them. 

That’s when I saw this:

Click image for more details.

I quickly picked it up, opened it to a random page about a third of the way in and realised quickly that one of the characters had diabetes. That was enough for me to buy the book. 

I spent the Monday public holiday wrapped in quilts, slurping tea and whizzing through the book. I couldn’t read it fast enough!

After finishing, I searched online and found an interview with author, Sascha Rothchild, where the book was referred to as ‘diabetes noir’, a genre where tales such as Reversal of Fortune (which is based on a true story) and other death-by-insulin crime thrillers, along with a few episodes of Law and Order, neatly fit. Perhaps ‘insulin noir’ would be a better label.

It turns out that the author’s husband has type 1 diabetes, and that was the catalyst for her writing a book featuring a character with diabetes. I’m not going to give anything away, other than to say that it was diabetes that hooked me in, and it was diabetes that saw me turning pages at lightning speed, even though I could see just where the storyline was headed. 

The details about diabetes are accurate, and only mildly sensationalist. Really, only one aspect is slightly overplayed, but I willingly overlooked that because it was necessary to the narrative. There were certainly some very clever diabetes observations that wouldn’t be out of place on any given day in the DOC, such as the protagonist commenting on how, when finding out about someone with diabetes, random strangers insist on sharing their own ‘worst case scenario’ stories, which inevitably involve someone losing a limb and being blind, and what the bedside table of a PWD might look like.

This isn’t really the story of a person with diabetes, and diabetes is not the main character. But it threads its way through it, popping up now and then in a way that, for this reader with diabetes, kept my attention throughout. I suspect for people not familiar with diabetes, or new to the diabetes world, it could be a little chilling and unsettling, but probably not for anyone familiar with the story of Sunny and Claus von Bülow.

Obviously, I’m desperately keen to hear what others with diabetes think of the book. I know I can’t be the only PWD drawn to narratives about diabetes to see just how we are represented in literature and on film. 

So, please go read it. It’s available everywhere online and from bookstores. It’s also available to download and as an audio book. Ask your local library to get a copy in if they don’t already have it. And then get in touch so we can have an informal book group chat about it. I’m sure that we’ll have lots to say!

Stress impacts diabetes in different ways. And of course, everyone’s response is going to be different. 

Before Loop (which now feels like almost a lifetime ago), the effect of stress on my glucose levels was tricky and unpredictable. At times, it would make me high. Other times, I’d be in Hypotown (the town no one wants to visit) for hours, without any respite. The clever Loop algorithm tidies most of that up for me these days. 

But when it comes to diabetes, stress doesn’t only impact what I see on my CGM trace. It’s far more than that. Loop can only do so much… Insulin automation doesn’t mean diabetes automation. And it certainly doesn’t mean life automation. 

Let me talk about how it’s affected things in the last couple of months …

To some, it might look as though I have become lazy about my diabetes management. I have run out of insulin in my pump more times than I care to admit, scrambling to find my spares bag to refill the canula. I ignore the alerts, silencing alarms and putting the task that needs to be done out of mind. 

I’ve let the batteries on my pump and RileyLink wear almost right down. In fact, the batteries have got to the point where they are so crucially low Loop has stopped working. Even the Red Loop Of Doom on my Loop app hasn’t been enough to swing me into action. 

I’ve almost run out of insulin. I never do this. Ever. I have a system that works for ordering new scripts to make sure that there is always at least two weeks’ supply, and then back up plans for my back up plans. And yet, there I was, staring down the last few drops of insulin in a penfill. I don’t use insulin pens. I use vials. But I’d run out of vials and was using a penfill that I have for absolute emergencies. 

This had become an emergency. 

Same goes for pump consumables. I was reduced to searching the depths of my diabetes cupboard and discarded handbags looking for an infusion set, desperately hoping that there was at least one, somewhere, that would do the trick before I had to knock on the door of my neighbour, asking her to tide me over.

This is one part of diabetes burnout for me – the way that I deal with my diabetes tasks. It’s not feelings of resentment that I must do those tasks; it’s not feeling distressed that I must do them. It’s not even feeling a paralysis about doing them. It’s simply not caring enough about them to take the time and energy to engage my brain and actually do it. 

I know that when I am stressed, something’s gotta give, and for me, that’s always been doing diabetes. 

I cannot tell you how much having automated insulin delivery sweeps up a lot of it. Forgotten boluses get sorted by Loop. Sure, it may take a little extra time and mean a bit of extra time above my upper range limit, but if I don’t engage, Loop will bring me back in range soon enough. 

The low-grade nausea I’ve been living with for the last month means that eating is sometimes difficult, but I don’t even need to think about what that means for glucose levels, because Loop mostly does it for me. 

And sleep! Sleep the gift that Loop keeps giving has been interrupted, not by diabetes, but by waking stressed. Or, as has happened twice in the last week, with a splitting headache, so painful that the throbbing has woken me from a deep sleep. Pre-Loop, sleep disturbances would wreak havoc with my glucose levels (often because most of the time those disturbances were because of my glucose levels). But now, as I see the upward spike start because I’ve been woken in the middle of the night and glucose is being dumped because apparently, I’m now up and awake, Loop kicks in with an ‘I don’t think so’, and that spike is shut down quickly.

But the nausea is debilitating physically. And being woken in the middle of the night is exhausting. And the stress is leaving me feel a little hopeless all around, to be honest. Teary, emotional, tired. And burnt out. 

Many years ago, after a couple of periods of intense burnout, I did a smart thing and found a psychologist to help me. Together, we learnt to identify the triggers that precipitated burnout. This has truly become one of the most powerful tools in my diabetes emotional wellbeing arsenal, because learning when I am heading down the slippery slope of burnout, and realising it’s coming, has meant that I’ve been able to address it before I get so deep into that dark space, it becomes challenging to come back from. 

So, right now, I know this is happening. I can feel the stress and the physical manifestation of it, and I can see how it is influencing my diabetes. Today, I spoke with my psychologist – in a way waving a white flag of surrender knowing that I need someone else to come in and help me through this, because I can’t do it myself. 

The win is that I’ve seen it and I’ve recognised it. The win is I’m seeking help. The win is that I’ve caught it before I’m plunging to dark depths (I hope). 

It’s not a win that I’m feeling this way. It’s not a win that this level of stress has started to affect so much, including my diabetes. It’s definitely not a win that I’ve reached the point where I’m staring down the path to diabetes burnout despite the reason being un-diabetes-related stress. 

But that’s how it goes. Diabetes becomes part of it. Of course it does. Because diabetes is always part of it. Always part of everything. Always hand in hand with whatever else is going on. Stress and diabetes leading to burnout. One of the few equations in diabetes that I can count on.

I saw this image by illustrator Alessandra Olanow and thought it perfectly summed up what is going on inside my head right now.
(Click to be taken to Instagram for details.)

How are two separate Twitter incidents in the DOC related when one was started after someone without diabetes made some pretty horrid comments about diabetes and the other was a conversation diminishing the whole language matters movement to something far less significant and important than what it is truly about.  

Let’s examine the two. 

EXHIBIT A

Sometime over the weekend, someone I’d never heard of came out with some pretty stigmatising commentary about diabetes. This person doesn’t have diabetes. But hey – joking about diabetes is perfectly okay because, why not? Everyone else does it. Jump on the bandwagon!

She deleted her original tweet after several folks with diabetes pointed out just how and why she was wrong. And also, how stigmatising she was being.

In lands where all is good and happy, that would have been the end of it. We would have moved on, lived happily for a bit, until the next person decided to use diabetes as a punchline.

But no. She decided to double down and keep going. It was all bizarre and so out of touch with what the reality of diabetes is, but perhaps the most bizarre and startling of all was her declaration that there is no stigma associated with diabetes. Well, knock me down with a feather because I’m pretty sure that not only is diabetes stigma very real, but I’ve been working on different projects addressing this stigma for well over a decade now. 

EXHIBIT B

At the same time this mess was happening, there was a discussion by others in the DOC about being called a person with diabetes versus being called (a) diabetic. I’m pretty sure it was a new conversation, but it may have been the same one that played out last month. And the month before that, and a dozen times last year. Honestly, to me, this conversation is the very definition of bashing my head against a brick wall. If you’ve played in the DOC Twitter playground you would have seen it. It goes something like this:

‘I want to be called diabetic.’

‘I don’t care what others say, I like person with diabetes.’

‘Why should I be told what to call myself?’ 

‘I am more than my diabetes which is why I like PWD.’

‘My diabetes does define me in some ways, which is why I like diabetic.’ 

(And a million variations on this. Rinse. Repeat.)

I have no idea why it keeps happening, because I’m pretty sure that at no time has anyone said that people with diabetes should align their language with guidance or position statements to do with language. I’m also pretty sure that at no point in those statements does it say that people with diabetes/diabetics (whatever floats your boat) must refer to themselves in a certain way. And it’s always been pretty clear that those adjacent to (but not living with) diabetes should be guided by what those with lived experience want.

AND it’s also been pointed out countless times that it’s not about single words. It’s about changing attitudes and behaviours and addressing the misconceptions about diabetes. And yet, for some, it keeps coming back to this binary discussion that fails to advance any thinking, or change anything at all. 

Is there a great discussion to be had about person-first versus identity-first language? Absolutely. And looking at long-term discussions in the community there are some truly fascinating insights about how language has changed and how people have changed with it. But does it serve anyone to continue with the untrue rhetoric that people interested in language are forcing people with diabetes / diabetics (your choice!) to think one way? Nope. Not at all. It’s untrue, and completely disingenuous. 

These two seemingly separate situations are connected. And that is completely apparent to people who are able to step back and step above the PWD / diabetic thing. People who know nothing about diabetes keep punching down because they think diabetes is fair game. And people with diabetes are the ones who are left to deal with these stigmatising and nasty attitudes.

I woke this morning to this tweet from Partha Kar. 

I was grateful for the tag here because the frustration Partha has expressed mirrors the frustration I am feeling on the other side of the world. 

I don’t know why this keeps coming up, I really don’t. I honestly do think that most people understand that we talk language in relation to stigma and to discrimination and to access. That was how it was addressed at the WHO diabetes focus groups earlier this year. That is how it was addressed at the #dedoc° symposium at ATTD. It is how the discussion flowed in last year’s Global Diabetes Language Matters Summit. Most understand that these issues are far more pressing.

If people want to keep banging a drum about the diabetes versus diabetic thing, that’s fine. But I reckon that many of us have moved well beyond that now as we seek to address ways to change the way people think and behave about diabetes so that we stop being the butt of jokes or collateral of people punching down on Twitter. 

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