With my twentieth diaversary in the bag (thanks to my gorgeous husband who organised a surprise breakfast get together with some of our most loved on Sunday morning!), I’ve been thinking about what I wish I’d known when I was first diagnosed.

To be honest, I don’t know that many of these things would necessarily have made sense at that time, but perhaps it would have been a useful little cheat sheet to have to keep coming back to.

Obviously, this isn’t an exhaustive list. I expect that if I wanted to, I could list hundreds of things I wish I’d known. But that would make for a really long blog post, and I need a coffee. So these are the first twenty things that flew out of my head and onto the page.

It’s worth noting that most, if not all, the most meaningful and important things I have learnt have come from others living with diabetes. So with that in mind, please feel free to add your own. Because I know I have a lot more to learn.

  1. Diabetes is not who you are now. It is something you have, but it is not who you are.
  2. Ask for a referral to a psychologist or counsellor. Even if you don’t need it right at this moment, you may in a week, or a month or a year. Or not at all. But know that there is someone available to you to talk about life with a chronic health condition who can help you understand what that means for you. Unfortunately, this is often the one healthcare professional you’re not introduced to at diagnosis.
  3. There is no right way to do diabetes. There is just your way.
  4. Your diabetes; your rules. It may take you a while to learn what that means. You may change the rules. That’s okay. It’s your diabetes.
  5. There are other people just like you. I don’t mean only in the pancreatically-challenged way. I mean they too are dealing with diabetes but with the same attitudes and ideas as you. Seek them out and treasure them. AKA ‘Find your tribe; love them hard.’
  6. The HCPs you meet the first day you are diagnosed do not need to be your HCPs for life. Or even until next time. If you don’t feel comfortable or safe or understood, seek out those who are more aligned with what you need. (This may take you some time to work out. That’s okay. But you should never feel bad when you walk out of an appointment with a healthcare professional.)
  7. You do not need to eat that amount of mashed potato every meal, despite what your first dietitian may tell you. I wish that I had been told that there was not a single eating plan when I was diagnosed. It took me a while to work out that I could still eat the way I wanted while managing my diabetes. (And that will probably change over the years. That’s fine!)
  8. Technology can be your friend if you want it to be. You don’t need to use all the diabetes technology on offer, you can try it and decide it’s not right for you, or you can embrace it all and be a complete diabetes technology geek. Learning and knowing about it, and working out what is right for you is a smart thing to do.
  9. Do not read or watch tabloid news when they are talking diabetes. (And you might need to gently ask those you love to please not send you clippings from the Herald Sun about the latest way mice have been cured. Remind them you are not a mouse.)
  10. People with type 2 diabetes are not the enemy. I wish that I hadn’t been led to believe that there was a great divide between the different types. We have a lot more in common than differences, and together, we have a much louder voice.
  11. A withering glance and an eye roll may become your best defence against the ridiculous things people will say to you.
  12. Shortcuts are your friends. It doesn’t make you lazy. It makes you smart. (AKA – of course you don’t need to change your lancet every time you check your glucose levels!)
  13. It’s okay to hate diabetes sometimes. It’s okay to not be a superhero. It’s okay to feel that diabetes is actually stopping you sometimes. This doesn’t make you a failure. This makes you a person with diabetes.
  14. Control is relative. Diabetes control is elusive. Maybe remove the word control from your lexicon.
  15. Read diabetes blogs. That’s where the honesty is. Some will make you cry; some will make you laugh; some will make you cheer. But mostly, they will make you nod your head and feel like there are others in the world who understand. Really, truly, intrinsically, honestly understand.
  16. This is not your fault. Or your parents’ fault. Or because of anything you did. No one asks to get (any type of) diabetes.
  17. Don’t expect people without diabetes to truly understand what you are going through. They don’t need to (remember how little you knew before you were diagnosed) and it’s not really fair to expect them to truly ‘get it’. It is okay to expect them to be polite and non-judgemental. Feel free to point out people’s lack of manners if they say something ridiculous about diabetes. Or ask if you should be eating something.
  18. Some days, the best way to deal with diabetes is a Netflix binge, your favourite foods and the sofa. You’re not giving up – it’s called self-care.
  19. Learn from those who have gone before you. Find people who have lived with diabetes for one, five, ten, twenty, fifty, seventy years longer. Sit down with them over a cuppa and listen to them tell their stories. It will be the best thing you can do.
  20. Be kind to yourself. Really. Be kind to yourself.

And one final point for good luck – make diabetes as delightful as you possible can. Sometimes, it’s just such an ugly thing to have to deal with and any way to make it more fun or sexier or prettier is just what you need to get you through the day!

Some awesome folks making diabetes more fun to live with:

Casualty Girl on Society 6 for bags, t-shirts, phone cases and more

David Burren’s designs on Red Bubble for t-shirts, phone cases, stickers and more

Pep me up for Freestyle Libre stickers and medical alert bracelets

Rockadex for CGM and pump tapes and more

I Have the Sugars at Teepublic for t-shirts.

 

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Little did I know that on 15 April 1998 my life would change forever.

Little did I know that I would learn just how strong I could be at the times I have felt most vulnerable.

Little did I know that as my beta cells were being destroyed, a fire was stirring up as I readied myself for a career in advocacy.

Little did I know the power of insulin.

Little did I know that what would save me was my peers walking the same path, before me and with me.

Little did I know that I would be able to escape into my head as I tried to make sense of diabetes, and from there I would start to share my story.

Little did I know that while I felt the health I took for granted be swept out from under me,  that I would actually become the healthiest I ever could.

Little did I know that my focus would move from music education to information provision about living well with diabetes

Little did I know that the love and support of strangers would see me through some of my darkest times.

Little did I know how much my family would rally around me, hold me up and get me through.

Little did I know that use-by dates on boxes of lancets are a waste of time!

Little did I know that sometimes, laughter, while not necessarily being the best medicine (insulin gets that award!), it is certainly what helps to make a situation manageable.

Little did I know that my then-boyfriend, now-husband, would be the greatest quiet advocate I could ever hope for.

Little did I know just how fortunate I am to have been diagnosed with diabetes living in Australia, or how uneven the diabetes landscape is for those in some parts of the world.

Little did I understand privilege.

Little did I know that I would learn to wear the badge of deliberately non-compliant defiantly, proudly, loudly.

Little did I know that the combined challenges of diabetes combined pregnancy would almost break me, the reward would be a daughter who has, every day, repaired the hurt, heartache and pain. In spades.

Little did I know that advocating for those of us affected by diabetes to be given the first seat at the table, and a microphone at a conference would be the underlying message of all my work.

Little did I know that the voices that matter are often the ones that don’t get to be heard.

Little did I know that my body would be permanently connected to technology that allows me to do the very best I can.

Little did I know that someone nodding and agreeing that my health condition sucks big time is actually all I need to hear when things are so tough.

Little did I know that while there were times the health system and the healthcare professionals within it seemed to be trying to work against whatever it as that I was achieve, once I found the ones who would listen to me and work alongside me, I have felt nothing but supported.

Little did I know that food was such a source of political angst, or something that others felt they have the right to force upon others.

Little did I know that there are so many cures for diabetes; none of which work.

Little did I know the power that words have – the power they have to build me up and to cut me down, often at the same time.

Little did I know that Twitter and Facebook would be platforms I use to share, to learn, to engage.

Little did I know that the anchors of love, support and friendship I have found in the diabetes world are just as important, if not the most important, aspect to my diabetes care.

…I know all that now. And so much more. My diabetes turns twenty this weekend, and with it, I feel a sense of achievement, relief, triumph. And deep-seated sadness, too.

I feel diabetes has taken a lot from me, but it has also given me some gifts that have shaped me into the person I am today. I feel now that I can stop feeling like a newbie in the diabetes world and perhaps stake some claim to being part of, if not the old school, the middle school.

When I was diagnosed, the idea of living with diabetes for twenty years seemed like a life sentence and I guess in some ways, it kind of is. I still fear what is around the corner; there is so much unknown about diabetes. But I feel I can look back with some pride and complete understanding of how fortunate I am. I managed to get through the first twenty years relatively unscathed – mostly through luck and circumstance.

I can’t say I’m necessary looking forward to the next twenty years of diabetes. But I’m doing all I can to be ready for it.

Things I did know: my mother’s Xmas zippoli will always – ALWAYS – be part of my eating plan!

More diaversary writing:

16 years – Diaversary: Words to 24 year old me

17 years – #DayOfDiabetes

18 years – On this day

19 years – Heart on my sleeve

I recently read an excerpt from a book that I knew would absolutely hook me. Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch was published just last month and I can’t wait to get my hands on a copy and cover to cover. I really hope that somewhere in there will be the story of a young woman living with diabetes. Because our condition – so invisible to so many – is anything but to those of us living with it.

I have often grappled with the idea that diabetes is invisible, because sometimes I feel that I may as well be walking around with sandwich board advertising to everyone that I have a body that is broken and doesn’t do what it is meant to do. And this confusion was clear from the beginning when I couldn’t believe that my pain and hurt and confusion about my diagnosis couldn’t be seen by everyone.

As I struggled to learn to come to terms with a body that apparently had decided that the right thing to do was destroy perfectly fine bits of itself, I had to learn how to cohabitate with all the paraphernalia that came with it. The silver lining? To this day, I just keep buying handbags and justify the need for them to be designer with cries of ‘MY BODY BROKE MY PANCREAS’. (Also: master of justification!)

I certainly know that I’ve had it easy in some ways. I was diagnosed at twenty-four while in a relationship with the man I married later that same year. He learnt diabetes alongside me. I never needed to try to hide from him, or introduce to him the parts of diabetes that in day-to-day life may be hard to see, only becoming clear when the covers literally and figuratively come off.

He saw needle sights occasionally bleed, then the bruises and lumps that popped up almost immediately. He could see the clusters of tiny black marks on my fingers from the dozens, soon to be hundreds and then thousands, of finger-prick checks I was doing. His first night of there being an insulin pump in the bed was my first night, and the leftover residue from changed sites, recovering scars, and slightly grotty tape never needed to be explained, because we discovered them at the same time.

But even without needing to navigate diabetes while dating,  I still go to great pains to hide diabetes at times. I think about the almost-torture-like contraptions I’ve worn to disguise the pump infusing insulin into me, and the alarms I’ve silenced, pretending it was my mobile phone or the subjects changed to divert from questions about my health.

I wear clothes that I know can conceal evidence of my diabetes. It took a lot of mental coaxing for me to wear the bikini I bought at the beginning of Summer because I didn’t want people to notice the scars from healing sites all over my stomach, or the infusion set stuck firmly to my upper hip.

I’ve worked out the fact that most people think the bright patch on my arm is a nicotine patch means I get asked about it a lot less than I expected, but I spend most of the warmer weather in tops with sleeves that cover up my Dexcom and the Rocktape holding it place.

Of course, it’s not just the physical aspects I try to conceal. I go to great pains to hide the pain, the frustration, the fear, the sadness. Out of sight, may not mean out of my mind. But it may mean it’s out of others’ minds, and really, they’re the ones I want to hide my diabetes from; to shield from my (physical and emotional) pain.

Undoubtedly as women, we need to work harder, be smarter, be faster, jump higher to prove ourselves. And those of us who have a chronic health condition along for the ride have to push even harder: I’m okay! I’m fine! I’ll be perfectly well enough to do this! You can count on me! No, there is nothing wrong at all! (Or in diabetes terms: I’m okay! I’m fine! I’ve no problems dealing with this hypo and still taking the meeting! I’ll just silence that alarm – it’s nothing!)

And while Michele Lent Hirsch’s book may be about young women, (and that ship has sailed for me), the issues are, I believe, the same for women in their 40s. I have the same anxieties and the same frustrations of diabetes I had 20 years ago when I was diagnosed. I still struggle with my brokenness. And I still do all I can to conceal it so everyone thinks I am, indeed, just fine.

Click to be taken to Amazon to purchase a copy.

 

You can read an excerpt from Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine here. 

My sister is pretty cool. She actually got all the cool genes in the family, and I’m okay with that. She also got the biting sense of humour, so I’m a little afraid of her at times. Plus, she got the decent cleavage out of the two of us and, since our teen years, has thought it fitting to bring this up any time she feels like it – no matter who is around.

Toots (her nickname because when she was born I couldn’t say Tonya) is ridiculously successful, has travelled more than anyone else I know, and takes crap from absolutely no one. My kid loves her because Toots does cool things with her, swears like a sailor, and is the embodiment of the inappropriate aunt…and perfect role model for a teenage girl.

A loved one of someone Toots knows was recently diagnosed with type 1 diabetes. She messaged me to see if it would be okay for them to contact me if they needed to. ‘Of course, chicken,’ I said to her. She said thanks, and then made some snarky comment about the shoes I was wearing and hung up on me before I had a chance to think of an equally snarky comeback. (And to be honest, there was no way I would have matched hers.)

Anyway. A couple of days later, she called about something completely unrelated – probably to laugh about something one of our parents had said, or threaten to tell dad after I revealed on Facebook that I wagged every single religion class in year 12 – and as she was about to hang up, she said, ‘Oh wait! So, I was asked about what to do at Easter time with diabetes being so new in the family. I suggested that they go and get some really good quality dark chocolate to share so that the newly diagnosed person wouldn’t feel left out. And just to monitor a little more to keep an eye on their glucose levels. That works, right?

Here’s the thing about my sister. We rarely talk about diabetes. I rarely to her about my own diabetes because, quite frankly, we have far more interesting things to talk about. And shopping to do where I boss her around and she resolutely ignores me, while yelling about how bossy I am.

And yet, she would know a shitload more about diabetes – mine and diabetes in general –than almost anyone else I know. Because that’s what she does. She collects information relevant to people around her and files it away for when they need it.

On Easter, she showed up at our place for breakfast and handed me a huge dark chocolate Haigh’s egg. She’s all about the good stuff – and practising what she preaches.

Sisters can be hard going. We have our moments. But even when she wants to push me off the bed and give me concussion (which she did when we were younger, although she will tell you I fell on my own…), and even though she recently threatened to harm me with my new shoes (admittedly, because it was all I spoke to her about for three weeks), she still has my back.

*WARNING – repeated profanities throughout this post. Look away if you are offended by sweary birds. Or sweary words.

I don’t like birds. They terrify me. Everyone who knows me is aware of this because I bang on about it incessantly, even when people couldn’t care less (which, let’s be frank, is most of the time).

And yet, in the last few days, I have found myself absolutely captivated by birds. They are my new favourite things in all the world. Admittedly, the birds of my affection are drawings, so the risk of one of them flying into my eye is pretty slim. (A bird did actually fly into my eye once, because birds are terrible creatures. This was the beginning of my ornithophobia.)

Anyway, let me introduce you to Effin’ Birds….

You’re welcome.

After hours scrolling through the rather gorgeous drawings and laughing loudly, I believe that there is an Effin’ Birds sketch and comment for pretty much every moment in life. And many of them (obviously) are relevant to diabetes…

One for the diabetesplainers:

And another…:

One for Aunty Beryl who thinks you really should drink Okra water:

One for those who believe they know everything about diabetes after 10 mins on WebMD:

Oh, and this one for your well-meaning friend who thinks you should know EVERY TIME diabetes is mentioned anywhere:

‘Cinnamon. I heard it cures diabetes’:

One for daily life with diabetes:

And this one too…:

One for low carb-ers who believe they need to militantly hijack every single post that mentions foods with any carbohydrate:

Every time I see 5.5 on my meter:

To myself, when I see double arrows down on my Dexcom:

Walking out of many, many HCP appointments:

Talking to you, my pancreas:

This one to my CGM trace after a roller-coaster ride of a day:

This one to my phone when my CGM is alarming:I get it, not a bird… but yeah – this works:

Replace ‘voicemail’ with ‘fax’:

‘Ooh! Can I press this button on your pump?’:

Many of the sketches may not be relevant to diabetes, but that’s okay. They are still more than useful in my every day life:

You can follow Effin’ Birds on Twitter, Instagram and Facebook. And if you are so inclined, support their crowd funding campaign. I have, mostly because I wanted a deck of cards to flash at people who annoy me.

This post is dedicated to my darling friend, Georgie, who is living her very best life all the way over in Paris at the moment. I know loves this as much as I do. Miss you, sweet-cheeks!

I’m all about the redundant post titles these days, aren’t I? (See: here.) But this last long weekend, diabetes really didn’t make sense.

On late Wednesday afternoon, I noticed a slight tinge on the lower right side of my jaw. I started calculating the last time I’d been to the dentist and thought it was about time for me to make an appointment for a check-up.

Within an hour, I was reaching for some ibuprofen to help with the now more-than-niggling pain, and was on the phone trying to get an appointment with my dentist as soon as possible.

I could spend a long time explaining the pain I was in by late Wednesday night, but I won’t because it was nowhere near as bad as what I had coming for the next two and a half days. Plus, at this point, the pain was still responding to Nurofen every six hours, and I managed to get a good night’s sleep.

By Thursday morning, the pain had increased, and I found myself counting down after I took a dose of pain killers for the next time I would be able to find some relief.

I saw the dentist around the midday on Thursday, and after a quick couple of x-rays, he gently announced that the troublesome tooth would need to come out. There was a nasty infection, and the root canal that I’d had a number of years earlier just wasn’t cutting it anymore. (There was probably a far more technical term for what was going on, but I’d tuned out by this stage and was just wanting some decent relief from the pain that was becoming more incessant.)

I was sent on my way with a prescription for some strong antibiotics and an appointment for a week later when the infection had cleared. That’s when the tooth would come out.

Two hours later, the ibuprofen dose I’d taken earlier hadn’t even touched the sides of the pain and I was starting to think I was in agony. Rookie mistake – that was still a few hours off. I called the dentist and asked if he could recommend any more effective pain relief. The usual suggestion of alternating between ibuprofen and paracetamol wasn’t an option of course, thanks to my Dexcom, so he prescribed me some ibuprofen with codeine. (New prescribing regulations from earlier this year mean codeine is now a prescription only drug.)

The codeine worked. At least it did for the first dose. By 10pm only five hours after I’d taken the two tablets, my understanding of pain had been taken to a new level. Not the top level, mind – that was still to come. But I knew that there was no way I would get any sleep unless I had someone help me deal with the pain.

As it turns out, we don’t have a 24 hour emergency dental service in Victoria. The so-called 24 hour dental clinics I found online didn’t answer their phones when I called, and the dental hospital closes at 9.30pm. Hospitals won’t touch people with dental problems, although the triage nurse did kindly suggest I could go in and sit in the A & E waiting room until I could be seen, ‘…but the wait will probably be at least four hours.’ She suggested I find a late-night GP clinic and go there.

Which I did. An hour later, I was back home, after having filled a prescription for a pain killer, taken the first one and found that it that pretty much killed the pain. (Love it when things do exactly what they say on the box!)

I wish I could say that was the end of the saga. But alas, by the morning, that new drug stopped working too and I spent the next 24 hours in dark rooms, holding an ice pack to the side of my head. I wondered how long it was going to ne before the antibiotics kicked in (I’d been promised bet ween 24 and 48 hours), and the pain would start to truly ease.

By Saturday morning (about 36 hours on antibiotics), the pain had started to subside and by Sunday morning, in time for the Easter Bunny’s visit, I was only needing straight ibuprofen to manage the pain.

And today, Tuesday, I’m back at work and it’s been over 24 hours since I’ve needed any pain meds at all.

So, where was my diabetes in all this? Well, I had a frightful infection. I was in more pain than I have ever experienced in all my life. My blood pressure was up. And my diabetes looked like this:

This made absolutely no sense to me (hence this post title). Usually, just the hint of an infection sends my glucose levels sky-high. Any sort of pain – whether it be a sore throat, aching back or headache will be reflected in rising glucose levels.

But I was looking at this trace: the lowest point was around the 3.4mmol/l mark and the highest was 9.3mmol/l.

Also, my brain was incapable of dealing with anything other than the extreme pain, so I literally did not touch Loop in that whole time, other than to keep checking what my numbers were doing, fully expecting I’d need some serious rage bolusing highs. But the highs never came.

Loop was certainly working overtime, but not as much as I would have expected. My insulin requirements didn’t increase all that much at all, really. At least not until Sunday morning when I had my first hot cross bun of the season, but I can’t blame the infection on that!

I’m just chalking this up to yet another example of diabetes not making any sense; plus being grateful for the technology to help me keep an eye on things with as little effort as possible.

In one of those moments of coincidence, this article came across my Twitter feed today. Apparently, people with diabetes see the dentist less frequently (as compared with people without diabetes). So, my CSA today is: if you’ve not been to the dentist for a while, think of making an appointment today. 

Yesterday morning, Dexcom UK & Ireland did something outrageous. They posted this to Facebook…

Actually, I can’t post a photo of it, because just as I was about to take a screenshot to share, the post was deleted.

So, instead, let me explain: Dexcom UK & Ireland decided to generously make a £2,000 (about AUD$3,685) donation to Spare a Rose, which (if you have been paying even a smidgen of attention to this blog, you’ll know) supports the IDF Life for a Child program. Life for a Child provides insulin and other vital diabetes supplies to children with type 1 diabetes in developing countries .

And because it’s Easter, Dexcom UK & Ireland decided to make things a little fun by suggesting people pose with an Easter egg and share their photo. Each photo would equal £10 towards the overall £2,000 donation

Now, obviously this is outrageous. We know this because after Dexcome UK & Ireland posted their donation idea, there was so much outrage-y outrage, that everyone was outrageously outraged. Because: outrage.

So much fucking outrage.

Within minutes, there were very aggressive comments from people who joined the dots to show that posing for a photo while holding an Easter egg was pretty much the same as giving yourself, or your child, a mighty big cupful of poison.

I know: outrageous!

But it’s okay. Because along with the comments of outrage from the outraged, there were helpful keto recipes, alongside images of perfectly flat CGM traces, claims of perfectly in-range A1cs and promises that anyone who so much as looked at a chocolate Easter egg had just given themselves a big dose of diabetes complications.

Children are dying due to lack of insulin. That is the bottom line. You want to know what these kids’ CGM traces would look like if by some miracle they had CGM? Like someone dying from being in DKA. That is what they would look like.

But instead of contributing to the campaign to keep some of these children alive, a group of LCHF zealots hijacked the post to militantly push their agenda.

This is the very definition of privilege. This is the very definition of missing the point. This is the very definition of being a complete and utter dickhead on social media.

You know, there is a place for outrage on the internet. It’s outrageous when people think they have the right to criticise or attack another person for what they want, or don’t want, to eat.

But if people want to channel their outrage into something productive, how about focusing on the fact that children in some parts of the world are dying because they cannot access insulin. Because, actually, this really and truly is outrageous.

Postscript

Dexcom UK & Ireland has a new campaign:

 

Please click on the image above to be taken to the post to share how you will be celebrating Easter (which may or may not involve chocolate eggs!).  Your photo will contribute to the donation Dexcom UK & Ireland makes to Spare a Rose.

You may also like to make a donation yourself by clicking here.

More on online outrage:

Twitter outrage

OUTRAGE and burnout

How to be a dick

Any time there is something even remotely new in diabetes – from a new-fangled device, new education program, new research study, new funding model – it is referred to as a ‘game changer’. The so-called game of diabetes has transformed so many bloody times that just as you think you are on top of the latest and greatest, sure enough it all gets changed up again once someone releases a new app or data management system.

I kind of wish we would stop using the term ‘game changer’ because diabetes isn’t a game. At least, it’s not one that I particularly want to play. Games are meant to be fun and entertaining. Diabetes is not fun. And it is certainly not entertaining.

Also, what is referred to as a game changer is rarely anything that makes any real impact. In fact, in most cases, it’s just a matter of moving pieces around a board without anyone actually advancing towards the finish line. Are these alleged game changers really just a matter of doing the same things in a slightly different, perhaps more technologically-advanced, way?

CGM or Flash glucose monitoring aren’t game changers – they’re just different ways of monitoring glucose, in the same way that home blood glucose monitors were just a different way of monitoring glucose. The aim is the same: monitor glucose levels.

Insulin pumps aren’t game changers – they’re just a different way of delivering insulin, in the same way that pens and disposable syringes were. The aim is the same: deliver insulin into body.

New education programs aren’t game changers – they’re just different ways of delivering the same information in a slightly different way. The aim is the same: provide education to people with diabetes, often education that is not necessarily what people want, or in a way they want it.

And the result of all these so-called game changers also seems the same. Not necessarily optimal results most of the time. Do not pass go; do not collect $200.

We’re moving around the pieces and changing the rules, but what has really and truly changed? Is it that we have better outcomes? Perhaps it’s that there are more ladders than snakes on the board now?

I’m guilty of using the term. I have referred to Loop as a game changer because although the aims are the same, the result has been to somewhat lessen my diabetes burden and that shouldn’t be minimised.

But I still have diabetes. I still have to do a lot to manage it. The way I manage it may be simplified now, but a lot of it is still the same.

Games are meant to end. There is a winner and a loser, and I really don’t like to look at diabetes in those terms.

Surely the only true game changer in diabetes is going to be when there is a cure. But until then, it’s the same board, just with ever changing pieces, ever changing design, and ever, ever, ever changing rules.

Look at this! Googling ‘Diabetes Games’ I came across this from Jamie Naessens on her blog ‘Flying Furballs’. I love that rather than there being a ‘jail’ square, you get a free cupcake instead! Click on image to be taken to the original source.

In the talk I gave the other day at a diabetes educator conference, I shared my most recent A1c result with the audience. I did this after very careful consideration, because I generally don’t share that information.

But I decided that the context and situation was right – the room was full of HCPs who still often use A1c as the way to measure the success of a diabetes treatment or technology. Plus, I knew that there may be a lot of concern about the off-off-off label technology I was using. Surely a way to win over the crowd and point to the value of Loop was to play to my audience and give the crowd what they want.

When I announced my A1c to the room, the audience clapped. That’s right; they broke into spontaneous applause. I responded by asking them to stop – to please not applaud an in-range number.

I felt extraordinarily uncomfortable hearing the applause, because I couldn’t help but feel that if instead I’d declared an A1c out of range, the response would have been the sound of sharp intakes of breath. I know this, because I have spoken about high numbers before, and that is the noise a roomful of HCPs make when I talk about double-digit A1cs.

This week, I’ve been thinking a lot about how the impact of what we are told about many different aspects of diabetes – and the way things are framed – can be long lasting. And as my head is increasingly in the communication around diabetes complication space, I keep coming back to the need to reframe the way we present diabetes.

My newly-diagnosed self wouldn’t have batted an eye lid if I heard of HCPs applauding at an in-range A1c, because that was what I was told was a measure of success, and we applaud success, right? Just as that newly diagnosed me truly believed that someone being accused of failing to care for themselves because they had developed diabetes complications was a fair call.

These were the beliefs that were anchored in my mind as the absolutes of diabetes. But all they managed to do was anchor me to feeling as though I was constantly failing.

It took a long time to overcome those biases that seem to be the lifeblood of the diabetes narrative. I wish it happened sooner. I wish I hadn’t been anchored down for so long. Now I understand that we can acknowledge effort, but not applaud a number. How liberating this is; how much lighter I feel!

More musings on A1c

I don’t need an excuse

Deceptive

The saying goes ‘don’t sweat the small stuff’ and it has, to a degree, become a mantra of mine. There are a lot of things just not worth getting all worked up about, because life is too short, And there are too many coffees to drink, books to read, movies to see, boots to wear, places to visit.

So, I’ve become quite good at managing the annoying small stuff with a well-placed eye roll.

But the good small stuff? That I’m all about celebrating.

Things that I am all about doing a happy dance for include:

  • Those diabetes-nirvana moments of a 5.5mmol/l readings on my Dex.
  • The days that my cartridge running out perfectly aligns with needing to do a line change.
  • Even better – the days that a new sensor day matches line change day and I get to have a perfectly-naked-no-devices-or-tape-stuck-to-my-body shower.

    Perfect timing – frangipane tart out of the oven just as I’m sitting below target.

  • Realising the pyjama shorts I impulse bought have pockets.
  • Thinking I have run out of blood glucose strips, only to open my diabetes cupboard and see that there is another unopened box waiting for me.
  • Seeing how between my bolusing into Loop, and Loop’s magic automation has worked perfectly – so perfectly – even though I just ate a notoriously difficult to manage meal of Pad Thai, and I am smack-bang at my target two hours after eating.
  • Arriving home at the exact moment that my pump tells me its cartridge is empty, having been playing ‘insulin roulette’ all day.
  • Knowing I’m onto my last bottle of insulin, don’t have a current prescription, BUT seeing my endo that day and have already called in the insulin order from my pharmacy, so it’s ready for me to collect on my way home from my appointment.
  • Finding a bra that fits me perfectly comfortably, and securely houses my pump and RileyLink. (So I buy it in every single colour!)
  • Baking the most perfect grape frangipane tart and pulling it out of the oven, ready to serve warm at the exact moment that I know I need a few carbs to keep things right in the range I want them.

I might not get diabetes right all the time; in fact, I may actually be not good at diabetes far more often than I care to admit. But when things work out, and the diabetes planets all line up, there is fist pumping and high fiving all around. I celebrate the small victories because when you add them up, they equal a whole lot.

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