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Look! A t-shirt that explains what I am made up of:
Insulin and coffee: that pretty much sums it up.
Some days it makes sense to wear diabetes on my sleeve (and chest…). You can get your own by clicking on the image and going to the The Diabetic Survivor‘s e-shop. Lots of fun stuff to check out, including tees, bags, phone cases and more. I’m a bit taken by the ‘Dead Pancreas Gang’ merch.
I bought this shirt myself because it’s cute and I like to support folks in the diabetes community.
7am alarm.
Alarm off.
Out of bed.
Check pump site – looks a bit red so rip it out.
Into the shower.
Remove glue residue from old pump site.
Dry off.
Moisturiser.
Refill pump.
New cannula in.
Prime pump.
Apple watch on.
Check Loop app is working on watch.
Get dressed.
Tuck pump away in my bra.
Tuck RileyLink away in bra, too.
Dexcom app alarm sounds.
Calibrate CGM.
Make up on.
Run fingers through hair – that will do.
Check handbag for low supplies.
Loop low battery notification.
Get battery and coin out of spares bag.
Change battery in pump.
Double check supplies in spares bag.
Add another battery.
Throw Riley Link charging cable in handbag.
Say good bye to family.
And dogs.
Red lipstick.
Dexcom sensor expiring warning.
Clear alarm – restart will be later in the day.
Walk out door.
Get in car.
Check Loop on watch. Green and steady.
Drive to work.
Sing loudly in car.
Get to work.
Open laptop.
Grab coffee cup.
Bolus for coffee.
Walk to café.
8.14am Coffee.
Diabetes like you mean it.
This post marks one thousand posts here on Diabetogenic*. That’s a lot of senseless rambling, ragey-moments, times celebrating and despairing about diabetes, and links to brilliant ideas and post… or to things that have either amused, frustrated, delighted or annoyed me.
A thousand posts in and diabetes is still a constant in my life (damn it). And I remain not good at diabetes…and I have many of those thousand posts to prove it.
There are clearly some recurring themes that I write about. I say that I am a one trick pony, but perhaps that’s not completely true. I seem to have a few tricks up my sleeve, really. And now I’m confused, because ponies don’t usually have sleeves and my metaphors are very, very mixed.
Here are the things that seem to have taken up a lot of writing time and words over these thousand posts…
Most of the time, I am pretty positive about living with diabetes. Let me be clear: that doesn’t mean I love it, or even like it. But I feel that generally, I know where it belongs in my life and it seems to fit in that place as well and happily (begrudgingly) as it can.
I know that one of the reasons that I feel this way is people in the diabetes world I am lucky enough to call friends and peers. Online friends, in real life friends and those who cross both boundaries are a critical part of my living-well-with-diabetes strategy. Knowing that there are only a very few places around the world where I couldn’t find someone from this community to have a coffee/tea/prosecco/mojito with gives me an incredible sense of comfort. (And reassurance in case of diabetes emergency…)
I say that my peers with diabetes help me make sense of my own diabetes and that’s true. Knowing people who understand innately what it is like to share a body with diabetes means that I never feel alone. Diabetes is so isolating at times – even for those of us surrounded by great people who support and encourage us. As much as I need those people and am grateful for them, it is others living with diabetes that help me realise that I am never, ever alone in dealing with the ‘diabetes things’.
The diabetes online community is made up of lots of people and not all have diabetes. We each bring our own experience and perspective to it. I’ve learnt so much from those living arounddiabetes and how they incorporate it into life, because it comes with its own set of challenges and victories. That is why the community is so valuable – its diversity and range of experiences and perspectives.
I regularly talk about the value of community and diabetes peers and finding our tribe. It can take time to settle into just who and what that looks like, and it changes because there are always new people around. But it is so worth it. My tribe? I love them so hard.
I am not the tattooing type but if I was, I think that I would have this phrase inked on my body somewhere (or maybe I’d be really pretentious, and have it written in Latin: Nihil de nobis sine nobis, according to Google translate.) It remains a frustration of mine that this isn’t the starting point for pretty much anything and everything to do with diabetes care. The fact that we still need to fight for a seat at the table – or a ticket to a diabetes conference – is, quite simply, not good enough. Having others speak for us, on our behalf thinking they know what we need, is offensive. It should never be the case that non-PWD voices speak for us or over us. Ever. Our stories are powerful, but they are ours and we should have the platform to tell them in our own way; in our own voice. Tokenism is rife and sometimes, that frustrates me even more than when we are completely excluded. The delusion of inclusion is, I think, worse. Whilst there may have been some strides made to true co-design and inclusion, we have not come far enough and until we get this write, I’ll have a lot of content fodder for this blog.
I like food. I write about it a lot. And I want to be Nigella. That’s really all I have to say about it right now…
Waffles in Brussels. Both were excellent.
Apparently, stating the obvious is still necessary in diabetes. We are more than numbers; our A1c does not define us; our worth is not wrapped up in our glucose levels. We have been saying these things for years…decades…and yet there are still times that this is what we are reduced to.
New treatments, devices, drugs, education programs are measured in reduction of A1c. Perhaps this is because it can be measured, but talk about only getting part of the story. I can’t help but think that if PWD were part of establishing research protocols, there may be far more than numbers to assess the success of a treatment or therapy. (See also: nothing about us without us…)
In recent years I’ve written about the issues specific to women, health, sex and diabetes a number of times because there is so little out there about it. And it seems it resonated with a number of women who wrote to tell me (and the HCP who saw me in the fresh produce section at my local Woolies and yelled how she loved my idea of giving lube in diabetes event bags).
Anyway…talking about the stuff that may not be the easiest is important. It’s the only way we get remove stigma and encourage people to share their stories. Which helps others. That’s why I have openly written and spoken about miscarriages and infertility. And eating disorders. (I know – not an exclusively women’s health issue.) There is nothing shameful or embarrassing about these topics. Other than we don’t speak about them enough.
Learning from and supporting others
The Interweb Jumbles I write are my favourite (and cheat’s) way of pulling together all the things I’ve seen that have interested me and leaving them in future place for (my) future reference. Plus, I love sharing what others in the diabetes community and world are doing.
I have always benefited from the generosity of others in this community who have shared my work and I pay that back whenever and wherever I can. Supporting each other is critical.
There’s so much going on in the diabetes world all the time and I highlight the things that resonate because I think that if they mean something to me, they may mean something to someone else, too.
From pseudo-science rubbish, to ridiculous made-up diabetes cures to anti-vax delusions. How much writing material have they provided!
I live in hope that one day – and may that day be soon – we won’t still have to read about these charlatans trying to convince us that all that ails us can be cured with fairy dust and positive thought, or that vaccines are evil and cause diabetes, or that ‘wellness warriors’ are the true experts and professionals when it comes to diabetes.
While a lot of what I write is spent mocking these fools, there is an underlying seriousness to it all. Who can forget little Aiden Fenton who died after his parents stopped giving him insulin, instead leaving him to be treated by a ‘slap therapist’?
Anyone who is sprouting any treatment that is not based in science when it comes to diabetes or perpetuating anti-vax rubbish is as barbaric as the man who was charged with Aiden’s death.
Diabetes happens because of something not working properly with our pancreas. But it affects every single part of us – something that astoundingly still seems to surprise some people.
Considering our mental health and emotional wellbeing is critical when assessing just how diabetes impacts on our every day. For some, diabetes seeps into every single part of us and for others, we keep it at bay and manage around us. For most of us, there is an ebb and flow of just how that works.
And while we’re talking about the whole person, diabetes-related complications may be specific to a particular body part, but those body parts remain connected to the rest of us.
For so long, we get metaphorically chopped up with as only bits of us get attention and focus. But nothing in diabetes is ever in isolation. That’s just not how it works.
The trick this (however-many-trick) pony is most known for is #LangaugeMatters and you know what, I’m happy to wear that. I really am. If I was to stop this blog today (thought about it…1,000 has a nice rounding off feel to it), and never spoke about diabetes ever again (oh, if only), I would not be disappointed if this was what people thought of when they thought of me and this blog.
Language matters. It does and I refuse to, for a moment, believe that it doesn’t. I am certainly not the only person playing in this space and I am so grateful to have a tribe of language matters peers and colleagues can rise above the small details to understand just why this issue does really matter.
___________
Thanks to everyone who has read one or more of these thousand posts. Thanks especially to the people who keep coming back. I can’t promise that there are going to be a thousand more posts. And I can’t promise that I will learn any new tricks other than the ones that I seem to have on repeat at times. These issues remain important to me and perhaps to you too.
* At EASD, my mate Bastian Hauck gave me a head’s up that I was getting close to publishing the 1,000 post on this blog. I’d not have had a clue otherwise. Thanks, Bastian!
It’s that time of year in Australia. The weather is cooling down, leaves are turning, daylight saving ends over the weekend, and we are reminded that soon it will be time for our annual flu-vax.
This has coincided with a significant number of different pieces in the media about vaccines. Some of them are well written and well informed pieces focusing on the science behind why vaccines work. Some of them are not. (Cheat sheet: science-based pro-vaxx stories good / crazy no-science anti-vax stories bad.)
There often seems to be a groundswell after some celebrity chef, wellness blogger, person famous for being famous or, (as we’ve seen recently) WAG comes out and explains why vaccines are the devil and we should all rely on ionised water, sunshine and pixies rather than evidence and science.
So, today, I thought I’d share some of the things I’ve seen recently which support the vaccination message.
No platform for anti-vaxxers
I’m going to start with this. Meet Zubin Damania, MD – or as he’s known on YouTube, ZDoggMD. I know – I cringed, too. But he speaks sense and the first time I watched this video, I was nodding in agreement. ZDogg (cringe again) has decided that he is not going to in any way entertain any discussions with anti-vaxxers anymore. He’s not going to enter debate, he’s not going to try to show them the science or the facts and debate them. Instead, he’s going not allowing them a platform on any discussion he is involved in. Where he has previously permitted anti-vaxxers to share their views, he won’t be doing that anymore.
I like this approach. Previously when I have written about this topic, people disagree and put forward their ridiculous hippy-dippy delusions about the dangers behind vaccines. Not any more. I will be deleting any anti-vaxx comments on this blog from now on. This is a pro-vaccine place only. I believe the science. So science we shall speak.
What’s it going to take to stop anti-vaxxers?
According to this piece from the New York Times there is no stopping the anti-vaxx brigade because they are not willing to listen. Instead, they believe in conspiracy theories and their own ‘alternative’ facts with no foundation in science.
When a doctor advises against childhood vaccines…
This piece from Melbourne writer, Van Badham, is heartbreaking. Her mother had been advised by their family GP to not give Van the measles vaccine. Van caught measles at 17 and almost died.
Can I just add here, if your doctor is sympathetic to anti-vaxx views, find a new doctor (or nurse or any other HCP for that matter).
Measles in Europe
A recent piece in BMJ explains how measles cases have tripled from 2017 to 2018. That’s one year. More than 80,000 people in 47 European countries had measles in 2018.
A fall in type 1 diabetes and the rotavirus vaccine
A new study by Melbourne Researchers says that the drop in the number of children aged 0 – 4 years diagnosed with type 1 diabetes could be associated with the introduction of the rotavirus vaccine of Aussie infants. It’s the first time we’ve seen a fall in diagnosis rates since the 1980s.
Record-breaking measles cases in NSW (this is not something to be proud of)
Just this week, this article appeared in the Sydney Morning Herald telling of two babies contracting measles. They were too young to be vaccinated. There have been 29 cases of measles in Sydney since xmas and NSW is looking to have the highest rates of measles in five years. Measles – a vaccine-preventable disease.
Show this article next time you hear an anti-vaxxer selfishly claim their children are ‘perfectly healthy & don’t need to be poisoned by toxic vaccines’.
Ten year study shows that MMR vaccinated children LESS likely to develop autism
From Denmark: a ten year study which examined data on over 650,000 children showed that not only is there no link between MMR and autism, but children who were vaccinated were seven per cent less likely to be diagnosed with autism than children who were not vaccinated.
You think flu is not serious?
Dr Jen Gunter wrote this great piece where she shares her own experience of ‘flu as well as those from others who commented on twitter. The ‘flu is not a cold. It is not a little inconvenience. It can and does kill.
Smart kids; foolish parents
But perhaps my favourite story about vaccines lately is this one which tells of rebellious children defying their anti-vaxx parents by getting vaccinated. Let’s just remember that most of those parents preventing their children from being vaccinated probably didn’t have foolish parents and are, in fact, vaccinated themselves. But they think nothing of exposing their children to vaccine-preventable diseases, and putting others in the community at risk.
These teens are amazing and good on them for believing the science and fixing what their parents didn’t. Maybe there is hope…
Evil Mr Vaccine…
Diabetes and the flu-vaccine. It’s time.
I hate that almost every week scientists have to come out and debunk the latest claims made by some completely hopeless anti-vaxxer: some footballer’s wife is running workshops highlighting the (made up) dangers of vaccines and is telling anyone and everyone who’ll listen that she will not be vaccinating her unborn child; a former swimmer says that people should weigh up both sides and make up their own mind; a celebrity chef endorses anti-vaxx campaigners, (while at the same time advises against using sunscreen).
And every time something like this happens, scientists have to stop doing their important science work, and go on breakfast radio and TV to explain patiently why these comments from these village idiots are rubbish, and then defend their own work and the work of their colleagues.
There are very few people in our community who for medical reasons cannot be vaccinated, and the rest of us need to be to protect them, and other vulnerable populations. Herd immunity works. And so do vaccines. Just vaccinate. There is no debate.
I’ve been working for diabetes organisations now for coming up to eighteen years and unsurprisingly have accumulated some truly fascinating things along the way.
Including a photocopy of a 1972 edition of ‘Victory’, the ‘Official publication of the Victorian Diabetic Association’ (now known as Diabetes Victoria).
I was flicking through it the other day and came across this gem:
Apparently, ‘the wife’ is the reason her husband either becomes overanxious about his diabetes or instead, takes charge and continues his existence as a captain of industry, putting diabetes in its rightful place. That’s right, it is ‘the wife’s’ fault her husband becomes a blithering mess unable to look after himself and incapable of doing more than curling up in his favourite chair, wearing his favourite slippers and cardigan while being (over) parented by his partner. This must be because 1972 wives have some sort of enchantress powers that conquer any man’s autonomy or decision-making abilities.
1972 wives sound magical and awesome. How do I become one?
All joking aside, if we remove all gender references in this piece and have it just about the way in which others treat us and how that influences our view about our diabetes, there is, perhaps, an element of truth to the thinking behind it all.
What I need (and am fortunate to have) is a group people around me to support me as I make decisions and diabetes the way I want and need. They back me by being there with a shoulder to lean on or an ear to listen if I ask, but never take over or try to ‘fix’ things.
This sort of support helps us know that we can do this. I may never think of diabetes as ‘an amusing inconvenience’ (there is little to be amused about a lazy pancreas), but I will never see myself as neurotic or incapable.
I certainly don’t want a 1972 wife (or a 2019 partner, parent, sibling, friend, colleague, healthcare professional, associate or anyone else) dictating how I feel about the health condition that lives in me. I do want them to laugh with me at this ridiculousness, though. And promise me that they will continue to keep being exactly the way they are right now! (And maybe joining me when I tell off anyone who suggests – even for a second – that I inject in the lav adjoining the boardroom.)
I am blunt and I am direct. I am often criticised for my lack of finesse and accused of having the subtlety of a sledgehammer. Guilty, guilty, guilty as charged.
But I have always believed that the best way to address any issue is to get it out in the open, talk about it and normalise it so people feel comfortable discussing it.
New Yorker Cartoons.(Click for image details.)
This has resulted in some uncomfortable times. There was the time I spoke at a healthcare professional event about some research we’d conducted on diabetes-related eating disorders, and the subsequent information resource we’d developed about the issue which provided information for people could seek help. A dietitian stood up during the question time and told me in no uncertain terms that this work was irresponsible and that we had just written an instruction manual showing people with diabetes how to develop an eating disorder. I reminded her of the research I’d just presented which showed that over 60% of the women in the survey had explicitly stated that they had omitted, altered, or restricted insulin for the purpose of weight loss and suggested that no one needed an instruction manual – we already knew how to do it. I also pointed out that over 80% of the women had never had a conversation about it with a HCP, so perhaps it WAS time we started talking about it so people knew how and where to get help.
Then there was the time at ADATS when I introduced the concept of DIYAPS to pretty much everyone in the room, terrifying them all. That was fun. As was the bit where a couple of endos suggested that I needed to be ‘reined in’.
After writing a booklet on diabetes and pregnancy. After being awarded a grant to publish it as a national resource, we sent the booklet out to all women with type 1 diabetes aged 16 – 40 years. The response we received from a bucket load of parents was that they did not want this issue raised with their daughters and how dare us for sending them information suggesting they have sex and get pregnant. (For the record – the booklet did neither of those things. It did, however, reassure young women with diabetes that a healthy pregnancy was possible, and that pre-planning said pregnancy was the best way for that to happen.)
When I was at Diabetes Vic, my team developed two resources about diabetes and sexual health and contraception (one for young women and one for young men). We knew that this information was desperately needed, and that young people wanted to know about how to be safe having sex, but there were concerns that the response from some quarters would be that we were promoting promiscuity. (Surely that word should only be accompanied by someone who has teleported here from the 1930s.)
And, of course, the pieces I’ve written on sex and diabetes have elicited a huge discussion about how they had never before even seen anything about diabetes, women and sexual health – and, it turns out, it was the first time many women had even seen the topic raised.
There is so much more: I write about pregnancy loss, because as hard as it was to live through it, it was harder to feel alone. I write about the emotional toll of diabetes because too often all we hear about is the impact of numbers. I write about burnout because it is a reality for me – and so many others.
These taboo topics are elephants in diabetes rooms around the world and it’s time we did more than just acknowledge them – we need to change that.
Disordered eating behaviours, concerns and problems with sex and sexual health, diabetes-related complications, mental health conditions are facts of life. People experience them. There is nothing shameful about any of them.
NOT talking about them makes them seem shameful.
How do we get to a point where those topics that have been so difficult to broach previously become as everyday as a conversation about a broken arm in a cast; that when we need to discuss something about our sexual heath or mental health with a health professional we are as comfortable as talking about an earache?
I’d quite like this SHAG elephant in a room!
I saw this tweet the other day:
Click for original tweet
Diabetes work is often invisible, too. Even though people may sometimes see us completing some of the daily bits and pieces we have to do, so much of us staying upright is done behind the scenes, unseen by anyone.
Not too long ago, a (non-diabetes) HCP said to me that they thought it was incredible how people with diabetes just get on with things and do them without any effort. He had just heard me speak about day-to-day living with a chronic health condition such as diabetes. ‘I had no idea what was involved. I see lots of people with diabetes and just had no clue of all of the little things that just seem to happen,’ he said to me. ‘We really have no choice,’ I said to him. ‘We just have to do it all.’
And most of it is largely invisible.
Every day we fill up that dispenser so we can do what has to be done.
I know as well as anyone that there are times that things almost run dry. But of course, we can never truly run all the way down. Regardless of how exhausted, burnt out, frustrated, emotional we feel about diabetes, we still do what we need to do: Pump lines get changed, cartridges get filled with insulin, CGM sensors (eventually) get replaced, calibrations (sometimes) happen, hypos get treated, batteries get changed.
We still need to make sure there is always just enough for us to push that last bit out and lather up – so that we can treat when low or give insulin when high. Those are the days that there is barely enough in the dispenser to create much lather at all.
We can ask someone else to remind us to fill up the dispenser and help us along our way, and that help is always appreciated. How incredible it is when we have someone picking up our supplies, or throwing out the waste from a sensor change, or reaching for a full bottle of insulin for the fridge! But there is so much more to it that just the physical jobs.
When washing our hands, that lather is more than just the soap and water. Mostly, it’s the effort of us rubbing our hands together. No one else can do that bit for us and diabetes is so much the effort we put in on top of those physical tasks. It’s a lot of work to maintain the right headspace in order to actually feel capable. No one else can do that part for us really. We just do it and do it quietly.
Imagine if every time we did some diabetes task we announced it. In the last half hour that would be:
- I silenced my CGM alarm
- I silenced it again
- For fuck’s sake shut up. And alright, I’ll calibrate!
- I checked my blood glucose
- I entered the number in my Dex app
- I checked my Loop app while my phone was open
- I had two fruit pastilles because I realised I’d over bolused for the jam drop I’d only half-eaten a little earlier
- I replenished the fruit pastille stash in my bag
- I checked my Loop app again
- Bloody hell – Loop now telling me that my pump battery is low
- I changed the battery on my pump
I know I bang on about diabetes a lot, but can you imagine if I actually broadcast every single time I did something to attend to my diabetes. (I truly think there are some people who believe I do that. How disillusioned they are!)
Almost twenty-one years of living with diabetes and as that number gets bigger, I find myself wondering if I will ever work this thing out and get good at it. I may look like I have it together most of the time, but honestly, most weeks I am merely one push of the dispenser plunger away from being completely, utterly empty.
This came up on my Insta feed yesterday:
Jasmine Dowling is an Australian designer and digital content creator. She takes the most beautiful photos, and the way she maximises the Queensland sun in her photos is often breathtaking.
I’m fairly certain that when Jasmine sat down to do the above design she wasn’t thinking about diabetes. But I thought of nothing else when I saw it.
The negative self-talk that seems to move in when our functioning beta cells move out can be so destructive at times. I know that most days, I feel that I could, should, must be doing more even when it really is enough.
So, I’m leaving it here as a reminder – to me and anyone else who needs it. We are doing what we can. And that is enough.
Last Friday, I took part in my first Facebook Live chat as part of The Lowdown campaign. (If you’ve not watched the Facebook live chat, you still can by clicking here.) I was joined by former AFL footballer, Jack Fitzpatrick, who has lived with type 1 diabetes for about six years.
Jack and I could not be more different. He speaks a language of sport of which I know barely one or two words. His perspective of the first few years of his life with diabetes are very, very different to mine. He talks about how, thanks to his workplace – and AFL football club – he had a doctor and dietitian working with him every day. He worked out how to fit diabetes into his job with the help of HCPs that most of us see a few times a year at the most.
But there are also similarities. We were both diagnosed as young adults and we had to learn how to manage a very demanding health condition at a time when there is far more fun to be had. On Friday, we spoke about hypos, and his stories made complete and utter sense to me.
The Lowdown campaign is a beautiful story telling initiative. That’s what has happened over the last week – PWD told their stories about hypos and time and time and time again, there were comments from other PWD who recognised that story. We recognised the way our heart might beat faster, or the confusion that heralds plummeting glucose levels. We nodded as we heard about people over-treating, because in the moment, that is all we feel we can, and must, do. We smiled at the silly things we read others do when low, (hello, HypoBoy).
Every time I saw a comment from someone who said a version of ‘That happens to me too!’ I felt tingles. That connection comes only when we feel that we are not alone, that someone understands what we are going through. I get it – it’s why I read diabetes blogs and listen to diabetes podcasts. I’m looking for real life, authentic stories, the lived experience.
As I said in the Facebook live chat, this campaign is a form of peer support. Because that is exactly what is happening – people with diabetes supporting each other, using stories that resonate, make us feel like we part of a tribe, helping us understand that our way of dealing with something is just as legitimate as anyone else’s.
We all do it – we all seek out those that stories mirror our own. That doesn’t mean that we have to think the same way or do the same things or feel the same way. It’s not about there being a one size experience or everyone having the same thoughts and ideas. In fact, the diversity in what we see and read is important because it means that we can find the ones that we connect with most and help us better make sense of our own experience.
Too often, the story of diabetes is told using statistics. That is the way researchers and healthcare professionals and governments talk. But for those of us actually living with diabetes, it will never be about the one in how-ever-many-thousand. We don’t want to hear how the dice is likely to roll or how the numbers keep getting more and more stacked against us the longer we live with this condition. We don’t connect with data, statistics or numbers. We connect with people and to their stories. That’s what we need to tell. And that’s what we need to hear.
Diabetogenic 