Diabetogenic

Not always shiny and happy

July 26, 2019 in Awareness, Diabetes, DOC, Peer support, Real life | 4 comments

Last week, Instagram got rid of ‘likes’. The company line was that it wants people to concentrate on content shared, rather than its popularity. Sure, Instagram, let’s go with that.

For the platform that is preferred by ‘lifestyle influencers’ (seriously – can you imagine putting that on your arrivals card?) it all seems a little disingenuous, but if not knowing who is liking content speaks to you, then perhaps this is a good idea.

I have a love/hate relationship with Instagram. I have mine pretty locked down and only share with friends and family. I only follow people who make me feel good, or make me laugh. I don’t follow anyone who makes me feel like I am not enough. Or anyone who drinks kale juice for breakfast. These good folks can namaste themselves elsewhere.

If you are connected with me on there, you’ll know that what you see mostly is photos of my family, the coffee I’m about to drink, the cookies I have just baked, and, depending on the season, blossom trees (hello, promise of spring) or jacaranda trees (hello, promise of summer). Plus, there’s diabetes spam…so much diabetes spam.

You won’t see me telling you about my perfect diabetes life though, because my diabetes life is not perfect. And you won’t hear me going on about how grateful I am that diabetes has given me so much, because really, I’m not. And you won’t hear me saying that others have it worse and that I am #SoBlessed, because … well … because #FuckThat.

I wrote once that I despise the concept of ‘At least…’ or ‘It could be worse’. Could it worse? Of course it could! But having a body that does what it is meant to would be a shed-load better!

Positive affirmations are great if they give us hope or something to hold on to. They’re not great if they start to make us feel like we are failing, or feel bad for not always being optimistic and upbeat. Sometimes, diabetes makes it really hard to walk on the sunny side of the street.

I frequently say diabetes sucks (because honestly, I am yet to hear someone tell me how it doesn’t), or that there are days that I truly hate diabetes (because I really, really do). This doesn’t mean that I am looking for someone to throw me a pity party. It doesn’t mean that I think my life is hopeless.

But some days, diabetes is especially challenging, and no number of positive memes or positive self-talk is going to change that.

I am a positive person by nature – annoyingly so at times. I see the good in people and in situations. But I refuse to believe that it is not okay to sometimes admit that my arse has been beaten that day by the health condition that is so difficult to live with, or to privately and publicly say that I truly, honestly, totally, absolutely despise diabetes.

I need the space to have those down days and the bad days and the days where I admit that I am not a superhero. I need the time to snuggle under a quilt on the sofa and watch some trash and not feel all positive or like I can conquer the world.

It is easy to believe that a lot of Instagram diabetes folks are all happy and accepting or grateful to have diabetes. Truly – if they are and are able to maintain that positive attitude all the time, that is wonderful. I’m not those people. I don’t resent them in any way. I just believe it is important to understand that not everyone is able to have that sort of outlook.

Sometimes, it’s not possible to ‘positive’ your way out of a bad diabetes day or try to convince yourself that you don’t hate diabetes, but really do love your body when it feels just so damn broken. And that is okay.

Really – it is okay to not be okay. It is okay for us to not be shiny, happy people* all the time.

What I will say is this: If your hard days are outnumbering the good days, please do see if there is someone who can help. It truly is okay to feel down about diabetes, but when you are feeling that way all the time and it’s affecting your day-to-day life, there is help.

When I find that the scales are definitely tipping that direction, my first port of call is my friends with diabetes. They never make me feel crap for not being positive. They certainly don’t feed my misery, but they do remind me that this is hard and that it is perfectly understandable and acceptable to have negative days. And closer to home, my husband knows that I don’t need a pep talk, or to be told to snap out of it, or a reminder that life could be worse. He tells me that diabetes sucks while passing me some chocolate. Smart, smart man.

I have come to learn the signs of when I need more help than that, and have a great psychologist I can link in with when I need to. I can’t tell you how much this has helped me. One of the first things my psych said to me was that it was okay to grieve my old life, and to feel that diabetes sucked. Being given permission to feel down at times felt like being able to breathe again.

And here’s the rub: knowing I don’t have to be Ms Positivity all the time – and saying just how hard things can be sometimes – actually has made me far more positive in the long run.

*I was talking about this with my beautiful friend Georgie yesterday. She is one of the first people I turn to when I am having a shitty diabetes day and we spend a lot of time just talking about how hard it can be. Her advice is always spot on. Or there is no advice – just an ear and a shoulder and a coffee date. As we were chatting, I said the thing about it being okay to not be shiny, happy people all the time, when I realised (and told her) that REM reference was from before she was born. Oh, how we laughed and laughed. And then I felt old.

Right here, Georgie and I ARE being shiny, happy people.

That’s how it goes

July 23, 2019 in Community, Diabetes, Peer support, Real life | 6 comments

The other day, I was standing in a noisy café, waiting for my take away coffee to be ready, not really paying attention to anything, other than a tree I could see that had what must have been Melbourne’s first promise-of-spring blossoms. Suddenly, a loud noise dragged me from thoughts of warmer weather and not needing to wear fifty layers of black to leave the house. The man standing next to me turned his head and I caught him looking at my phone.

‘Your Dexcom is wailing,’ he said to me.

‘Indeed it is, needy little shit,’ I replied, after I got over my surprise at his comment. Usually people just look annoyed at the disturbance.

‘So…you’re one of us?’ I asked him, pointing to the pump I’d just noticed on his waist band.

‘Yep. Hi! I’ve never, ever just come across another person with diabetes in a café or just out and about,’ he said. ‘Have you?’

‘Ridiculously regularly in the last few of months,’ I replied, and told him about the mum of a young woman with diabetes at the airport lounge, the security guard at the airport in Amsterdam who referred to me and my travelling companions as a ‘diabetes club’, the woman talking about Libre in my favourite local café, and now him in this café near work.

‘Maybe stay away from airports and cafes. That seems to be where PWD congregate,’ he helpfully suggested.

At that exact moment, my pump beeped its on-the-hour alert that it was sitting on a temp basal rate.

My diabetes-in-the-wild mate looked at me, his eyes narrowing. ‘Now your pump is beeping. Oh – are you looping?’

I was more than a little startled at that one. The noise my ancient Medtronic makes on the hour is not loud at all – three little beeps to gently remind me that a temp basal rate has been activated by Loop. ‘Wow,’ I said. ‘Your hearing is next level. And yes. I am.’

We did the usual diabetes stat check: length of time with diabetes; age of diagnosis; things that drive us nuts; inventory of our diabetes devices; a couple of amusing diabetes anecdotes. ‘I pulled my pump line out on the door handle of my office today,’ he said. ‘Have you ever done that?’ I laughed. ‘No – don’t be ridiculous! I am a smart and clever and always paying attention person with diabetes. Of course I’ve never done that… And by never, I mean once every couple of months for the eighteen and a half years I’ve been pumping.’

My Dexcom fall rate alert wailed again. ‘I’m ignoring it. Hoping it will go away,’ I sighed. ‘Yeah,’ he said. ‘I’ve been doing that with diabetes for the last 32 years.’

We looked at each other and mirrored in his face was the same expression I knew I was wearing – slight defeat, but also defiance. It’s the default expression that so many of us living with diabetes wear when we are feeling a little over it all.

The barista handed me my coffee, and juggling my phone and coffee and umbrella, I turned back to friend. ‘Lovely to chat,’ I said to him. ‘Always nice meeting one of my tribe.’

‘Tribe? Is that what you said?’ he asked.

‘Yep,’ I said, a familiar feeling washing over me: The ease and comfort of talking with someone who absolutely understands. In the place of making our own insulin, we make connections. And I was reminded, once again, how these chance encounters, along with the time I get to spend with my friends who have diabetes, sustain me.

‘Find your tribe. Love them hard,’ he said. ‘Isn’t that how it goes?’

I nodded and took a deep breath, raising my coffee up to him as I started to leave the café.

‘Yes. That’s exactly how it goes.’

Blossom…

Same side

July 19, 2019 in Awareness, Diabetes | 4 comments

At the beginning of National Diabetes Week, I often think we should create some sort of drinking game for every time the tabloid news churns out diabetes myths and misconceptions. I realise the flaw in this idea – we’d all be drunk by 9am on launch day and stay that way for the remainder of the week.

Diabetes myth busting is exhausting. Honestly, sometimes I feel like we need a cape and some sort of auto-reply weapon because we are fired the same comments from every angle and it gets boring: No – diabetes isn’t contagious. Yes – I still have diabetes. No – it’s not only kids that are diagnosed with type 1 diabetes. No – there is not one type of diabetes that worse/better than another type. Yes – I can eat that. No – I can’t cure my diabetes with a diet of kale, kombucha and positive affirmations to the fairy god of keto diets.

As we fire back our response with accompanying eye rolls, muttering things under our breath and wondering when the stupidity is going to stop. (Spoiler – it’s not.) It is tiring and it seems never ending. Sometimes, we just can’t muster up the energy to respond, so we don’t. And that’s absolutely okay.

My level of frustration about diabetes misconceptions varies depending on where it is coming from. I kind of expect it from commercial television; I expect better from the ABC and SBS (as I wrote here about kale-kombucha-gate).

Where I find my frustration levels hit fever pitch is when those misconceptions and myths are perpetuated amongst the diabetes community.

This week, there was an article circulating about what type 1 diabetes is really about. I’m not sure if it was a new piece or if it resurfaced because it was NDW. I am all for using this week to set the record straight and ensure that what is written is factual.

What I am not for is when people try to explain type 1 diabetes by stigmatising type 2 diabetes. That makes me really, really mad. Explaining what type 1 diabetes is and how it works can be done without making type 2 diabetes sound like it is the fault of the people living with it. But time and time again, I see people with type 1 (and parents of kids with type 1) use phrases like ‘My/My child’s diabetes is the one they didn’t bring on themselves’ or ‘My/My child’s diabetes can’t be reversed – I/they have it for life’.

Type 1 diabetes is serious, and it is seriously misunderstood. But so is type 2 diabetes. As people living with type 1 diabetes, we know how frustrating it is when people get it wrong; we know how awful we can feel when people say things that make us feel bad. And we know how maddening it can be when people say things that make us feel blamed and shamed for having type 1.

So why is it the default position of many living with (or affected by) type 1 to throw people with type 2 under the bus as if they don’t have the same response we do when people get it wrong. Those feelings of stigma and shame we feel? People with type 2 have them as well.

I have type 1 diabetes, and for a long time, all the work I did centred around type 1 diabetes. I make no apologies for that. In fact, I built my career by growing from the ground up an unapologetically and exclusively type 1 diabetes program. There was a huge gap that needed filling, and the diabetes organisation I was working for at the time was prepared to throw resources at making that happen.

I wrote the other day that I know I will be focusing a lot on the National Diabetes Week 4Ts campaign which focuses on the symptoms of type 1 diabetes. This isn’t only because I have type 1 diabetes. It’s because so many of my friends diagnosed with type 1 – especially those diagnosed as adults – have horror stories to tell and I truly believe that a smooth, boring type 1 diabetes is far, far better than a traumatic one.

It is absolutely okay to have a focus for your own advocacy – no one should be made to feel that they have to fight for everyone or every single issue. I know a lot of people who fundraise exclusively for type 1 diabetes research because improved treatments and finding a cure is the most important thing to them. All the power to them, I say.

But there is no need to build up one cause by pushing down another. It’s not okay to fight the stigma of type 1 diabetes by contributing to the stigma felt by people with type 2 diabetes. And it’s not okay to correct people for not getting the facts about type 1 diabetes right by getting the facts about type 2 diabetes wrong.

For me, it all comes back to this: all diabetes sucks and no one asks to get diabetes. We’re all doing the best we can with whichever diabetes has been served up to us. Saying something so others feel bad makes no sense at all.

Reblog – Hope

July 16, 2019 in Awareness, Real life | 1 comment

This is an edited version of the first post I ever wrote about my experiences attending the Kellion Victory Medal Award Ceremony. I wrote it back in 2011 (for the old Diabetes Victoria WordPress blog), ten years into working for a diabetes organisation, and already had attended a number of these award ceremonies.

Since this post, I’ve written about other ceremonies I’ve been lucky to attend, and shared the stories of the medal recipients. I love hearing their tips and tricks, and tuck away their words of advice for when I need them. Peer support, I think, as I hear them talking. Their stories are our stories are my stories…

Today, I’m back for this year’s Victorian medal ceremony. I flipped through the program and read the stories of the people receiving their medals. This was my favourite quote for the day. It’s so, so true.

Today is my favourite day of the work year. It’s the Kellion Victory Medal award celebrations where we acknowledge people who have lived with diabetes for 50, 60, 70 and even 75 years. Just stop for a minute and think about that. Seventy-five years with type 1 diabetes. Now think about what diabetes was like back then: urine was boiled, needles were sharpened. Home blood glucose testing was still about forty years away, modern insulins hadn’t been considered. Insulin pumps, of course, were things of the future.

When I started working at Diabetes Victoria, I had lived with diabetes for just under four years, and in that time I hadn’t met anyone else with type 1. I was still getting used to the new reality that had opened up the day I was told that I had type 1 diabetes. My 27 year-old self had re-written my future, and instead of the life I had imagined, I had reshaped that into one that involved terrifying diabetes complications, probably no children and a reduced life expectancy. I pictured myself unable to take care of myself at a time in my life where I wanted to be travelling and seeing the world. And I saw a life where my still-new husband would have the burden that is a wife with diabetes.

Because that was the picture of diabetes that had been presented to me in the four years since my diagnosis. Time after time, the health professionals I saw delivered news of doom and gloom. And inevitability. Hope was not discussed. Except, strangely, the promise of a cure in five years – although I could tell that even the medicos telling me this didn’t believe it. I felt devoid of hope. Hopeless.

And then I was invited to the Kellion Medal ceremony. I can still remember clearly my apprehension about attending the awards, but I went along to Parliament House to see what it was all about.

It was the best thing I could have done. It wasn’t about living with diabetes for decades. It was about LIVING. I heard tales of travels, raising families, busy and successful working lives. Stories of being pioneers to make sure people with diabetes were not discriminated against. I heard stories of hope.

Kellion medallists are in every way remarkable – not because they are inspirations for living with diabetes. That’s just what they have to do as part of their life. They’re remarkable because they’ve made diabetes just something they do. In learnt that I needed to stop holding them up as some sort of magical unicorns – they were just playing with the cards they’d been dealt. The same way I do.

Each year I walk away from the awards ceremony with an ‘injection’ of motivation and determination. And a booster shot of hope. That’s my response to the day and the medalists – but not their responsibility.

We have a duty to be honest to people newly diagnosed with type 1 diabetes. Promising a life that is full of puppy dogs and bowls of cherries does not accurately paint the picture of what life with diabetes is all about. But neither does scaring people senseless. When people are in that initial fog, where they can’t see beyond the end of the week and they are starting to rewrite their future, that is when they need stories. The positive and real ones. The stories of hope.

If I could find a way for every person newly diagnosed with diabetes; for every parent of a child newly diagnosed; every partner, loved one, sister, brother of someone newly diagnosed with diabetes to attend the Kellion Medal awards, I would.

There is no promise of a cure, no threat of nasty complications, no dread of being a burden. But there is laughing and sharing and amusing stories. And hope. To meet a Kellion Medallist leaves people feeling one way: filled with hope.

The right sort of campaign

July 15, 2019 in Awareness, Communication, Diabetes, Diagnosis, Health, Social media | 1 comment

DISCLAIMER AT THE BEGINNING TODAY

I work for Diabetes Australia and have been involved in our National Diabetes Week campaign. I am referring to this year’s campaign in this post, as well as previous campaigns (which I have also been involved in). This is a commentary piece on what I think works and what doesn’t. This is all my opinion – thoughts my own and mine alone.

It’s National Diabetes Week in Australia this week, and that means the socials are all in the key of D, with lots of news and stories about that little health condition that many of my friends and I know a little bit about.

And campaigns. There are lots of diabetes campaigns.

The other day, I re-watched a lot of old NDW campaigns from years gone by. It was no secret at the time that I wasn’t all that enamoured by some of them. The campaigns that really concerned me was the ones about complications using graphic images of an eye being operated on, or a heart that was (apparently) seriously damaged, or what a kidney looks like when on dialysis. While some people’s concerns about these ads was on the ‘unintended consequence’ of how people already diagnosed with diabetes might feel when seeing these, mine was that have always struggled with isolating body parts from the whole person living with diabetes. It doesn’t work that way – even if we have a diabetes-related complication in one part of our body, it still remains intact and attached to the rest of us. (I think this piece I wrote with Grumps for diaTribe explains best why this is problematic.)

In recent years, I feel that we have become a lot smarter and more systematic about our campaigns. This is as much about the approach to how we have done things, as well as the actual campaigns themselves. Previously, there was a theme and it was rolled out for a year, and one year only. Each new NDW meant a new campaign theme. And then, as soon as the week was over, we shelved it.

It’s not just diabetes organisations that are guilty of throwing all their energy at ‘their’ health week and building up a big campaign that they yell and shout about for the week and then, in a puff of smoke, it all disappears – often never to be heard of again. It’s as though there is a collective sigh and then everyone ticks a box as if ‘that’ issue has been done and doesn’t need to be done again.

Back in 2016, Diabetes Australia ran a campaign called 4,400 Reasons which addressed diabetes-related preventable amputations. There was clear calls to action behind the campaign and one was to highlight the need to reorientate the Australia health system towards early intervention and the implementation of more foot care teams across the country.

The campaign wasn’t graphic – there were no images of amputated limbs or blaming and shaming those who have had a limb amputated. It had a very clear focus on how the system is letting people down – not that people with diabetes were not looking after themselves.

Since then, we have continued to push the message of this campaign. Screening is important and it needs to happen systematically.

And then yesterday, at the start of another NDW, the federal government made an announcement about a new funding initiative that would start to build a national screening and treatment program called ‘Foot Forward’.

That’s how to do it – find a way to address an issue, make it a focus, keep going, continue to push the same messages, talk to the right people, make it happen. We’re not done, by the way. This is the start of a national screening program, but until we know that preventable amputations are happening far less frequently – or not at all – we keep working at the problem.

For this NDW, we are continuing to promote the importance of early diagnosis of both types 1 and 2 diabetes.

Our T1D campaign is the 4Ts and is a community awareness initiative to increase knowledge of the signs and symptoms of T1D.

Why are we doing it again? Because each year there are well over 600 Australians who are diagnosed with diabetes when they are very, very unwell. Most will have already been to the GP once, twice or even more times and have been misdiagnosed. Type 1 diabetes is fatal if it is not diagnosed in time. That’s the bottom line here. Until this stops happening, we need to teach people the 4Ts.

And when it comes to T2D we need a national screening program that means people are not living up to seven years with type 2 diabetes before they are diagnosed. Early diagnosis equals early treatment and that means better outcomes. That is a goal we keep working towards.

What can we learn about how to put together a meaningful public health campaign?

Time and time again, I hear people say, ‘Why can’t you run a campaign about the difference between the types of diabetes?’I want to ask you if you knew what those differences were before you or a loved one was diagnosed with diabetes. Think about other health conditions and just how much you know about the realities of life with those.

When it comes to health messaging, the airwaves are flooded. We have but a second to grab people’s attention. If we only talked diabetes 101 education to the general community, who do you think is really going to listen to that? I reckon it will be people already affected by diabetes – people who already get it. Do you sit there and watch or read about every other public health campaign for conditions that don’t have anything to do with you or someone you know? I know I certainly don’t.

I know nothing about stroke, however did learn FAST – because it was simple and important to know. Have I bothered to learn about what day to day life with someone who has had a stroke is? Or about the different types of stroke? Not really.

This week, you will see a lot of diabetes out there in traditional and social media. Share what you will and can. We already will share the things that are more relevant to our own experience – that makes sense. I’ll admit my bias and say that I am committed to getting the 4Ts message out that you’ll be seeing a lot of that from me. I have heard too many of my type 1 tribe talk about their horrid diagnosis stories.

I keep saying this – I don’t want or need or expect people to know the intricacies of my life with type 1 diabetes. Honestly – I don’t particularly to know that. But I would like people to be diagnosed with type 1 sooner. I would like them to be diagnosed correctly. I would like HCPs to know the 4Ts and have them front and centre.

I don’t want shock campaigns that scare people into inaction. But equally, I don’t want wishy-washy campaigns that offer nothing and have no call to action. I want more campaigns that deliver. And I think we’ve made great strides in that direction.

Revisited – Outside the echo chamber

July 13, 2019 in Diabetes, Real life, Reblog, Social media | 1 comment

With National Diabetes Week launching tomorrow in Australia, I’m resharing this post today.

Once again, Diabetes Australia (disclaimer again – I work there, but sharing this becuase I am choosing to be because it’s so important, not because I’ve been asked) is once again running parallel campaigns about the importance of knowing the signs of type 1 and type 2 diabetes.

I’m really pleased with this year’s campaign, because we’ve gone harder than in the last two years by highlighting that not diagnosing diabetes in time is fatal. I know that sometimes we get nervous using words like that, but the reality is that missed or misdiagnosis of type 1 diabetes is fatal. People have died. And that is not good enough. (Melinda Seed wrote a powerful piece about this just yesterday – please read it.)

I echo Mel’s plea and ask that you will share the poster below with your non-diabetes networks. Do it now, and do it regularly. Sure, share it in your diabetes support groups and with your mates with diabetes. But if that’s all we’re doing, nothing is going to change.

I am certain that almost all the people who read this blog are in some way affected by diabetes. (Because, really, if you are not, why would you be reading?) It makes sense that the people who want to hear about my real life with diabetes have their own real lives with diabetes.

Most of the blogs I read are to do with diabetes. Most of my interactions online are to do with diabetes (with the occasional detour down avenues of language, Nutella recipes, Effin’ Birds, and idolising Nigella).

It makes sense and there is nothing inherently wrong with focusing on things that we understand, or that is interesting to us personally. Of course we feel a connection when reading stories by others going through similar experiences, and that makes us feel safe and less alone.

This week, however, I am hoping that a lot of what we are talking about is received by people outside the diabetes world. Because #ItsAboutTime that others know and understand the importance of early diagnosis and treatment of diabetes.

It’s National Diabetes Week (#NDW2019) and Diabetes Australia’s campaign this year is building on the 2017 and 2018 campaigns of raising awareness of the signs and symptoms of type 1 diabetes, and the fact that there are 500,000 Australians with undiagnosed type 2 diabetes. (Disclosure: I work for Diabetes Australia. I am writing about this because it is an important issue, not because I have been asked to.)

These days, my loved ones and I know all about the symptoms of diabetes. And somehow, I knew them just over 21 years ago when I walked into my GPs office and said ‘I’m thirsty all the time, I can’t stop peeing, I’ve lost weight and I’m exhausted. I think I have type 1 diabetes.’

My GP told me that she thought I was being a hypochondriac, so I’m actually not sure if she would have sent me off to pathology for a fasting glucose check as quickly as she did had I not prompted her with my (as it turns out correct) self-diagnosis. (In hindsight, getting me to pee on a stick would have been an even better idea, but I didn’t know that at the time…)

The rest of the story is that a few days later, I was told I had type 1 diabetes. That’s my whole story. It’s utterly, completely, totally uneventful and, quite frankly, I love that it is.

But that’s not the way it is for a lot of people. In fact, each year 640 Australians end up in hospital because the signs of type 1 diabetes have been missed. In many cases, these people have already been to see their GP one, two or more times because they , or their families, have known that there was something not quite right, and they were not checked for type 1 diabetes.

Is that your story?

Here’s the thing: if you have diabetes, or someone you are close to has been diagnosed type 1 diabetes, you know the signs. You may not have known them beforehand – in fact, you may have your own diagnosis story that mirrors those that we are sharing throughout NDW – but you know them now. You are not the target audience for this campaign.

The target audience is people in the community without a connection to diabetes. It’s GPs who are not routinely asking people to pee on a stick so they can quickly and easily check if a person has glucose in their urine.

We need to tell those people. Because we can talk all about this amongst each other all we want, but then all we are doing is adding to the noise in the echo chamber. We need to step outside of the diabetes world and shout from the rooftops 4Ts of type 1 diabetes:

These symptoms need to trigger people – everyone – to automatically think type 1 diabetes.

Share the poster. And ask everyone you know to share it too – including people not affected by diabetes. #ItsAboutTime we ALL knew the 4Ts so that we can diagnose and treat type 1 diabetes sooner

The Diabetes Australia NDW2019 campaign can be found here.

And here’s a Facebook Live video that Grumps and I did yesterday where we speak about the campaign and some other things too.

Lipstick and a smile

July 11, 2019 in Hypo, Peer support, Real life | 3 comments

The other night, I cancelled going to a party – a cousin’s kid’s 18^th– at the last minute. I seriously never do this. And I absolutely hated doing it.

But I’d had a couple of hypos during the day (Fiasp is absolutely kicking my arse) and I was feeling exhausted. These hypos weren’t what I’ve become used to dealing with (i.e. Loop hypos for me generally look like an alert telling me I’m going to head low, me ignoring it, alert saying I am really about to be low – but not really low because Loop is doing its thing, me having a couple of fruit pastilles, and that’s it). These were the types of hypos that spin me around, turn me upside down and resettle me feeling completely discombobulated. It had been a while.

After the second one, I was so knocked out that I lay down for a bit and ended up getting an hour’s sleep. It was mid-afternoon and when I woke up, I felt no more refreshed.

I contemplated going to the party – I had a shower and started to put on some make up. I looked fine – no different to how I usually look. If I’d gone, no one would have known any different.

Earlier in the day, after I’d already had the first hypo, Aaron had posted a photo of me online. The next day, when I mentioned to someone that I had cancelled plans the evening before thanks to a lousy diabetes day, said ‘Oh. I saw a photo of you online in the morning and you looked great.’

They didn’t mean this in a nasty way, or that they thought I had just cancelled because I couldn’t be bothered going out. It was just a comment. And they were right – I looked exactly the way I would look any other weekend morning when I was having breakfast with family and friends

The next day I was messaging a friend with diabetes and mentioned I’d cancelled my plans at the last minute the night before. ‘Oh babe,’ she said. ‘How’s the hypo hangover?’ and then she detailed all the things that are the inevitable fallout of nasty (and nasty-ish) lows; the things I’d not mentioned to others who’d asked after me.

I told her she had nailed exactly how I was feeling. I told her what had happened, and I didn’t hold back, and I didn’t minimise it. I knew she wouldn’t worry or be unnecessarily concerned or wonder if it was anything more than what it was. I knew she would know – because those feelings are wound into the DNA of diabetes and the people living with it.

Plus, she would know just how I felt about the last-minute cancellation, and feeling that I’d let people down.

‘So, I bet you’re feeling even more crap about cancelling that about the hypos now, right?’ she said.

I laughed. ‘You know it!’ I said to her

‘Don’t you sometimes wish that when you were having a shitty diabetes day it couldn’t be covered up so easily with lipstick and a smile?’ she said, hitting me right in the guts with that comment.

Because she was so right. Lipstick and a smile. That’s every diabetes day. It’s there when I’m feeling great and all is going well; when diabetes is behaving and not impacting on me much at all. And it’s there when I’m feeling crap and diabetes is casting far too large a shadow over my existence for that day. But for most people, they couldn’t tell the difference.

Managing this hypo with iced coffee…and lipstick and a smile.

No big deal

July 8, 2019 in Diabetes, Healthcare team, Real life, Travel | 1 comment

Diabetes is a big deal. Most people living with diabetes can talk to that. But are there ways that we can reduce its impact in small ways that may just add up to something meaningful?

I was thinking about this when I saw Dana Lewis tweet an update from her most recent travels. She does this often – a photo and a comment as she has breezed through security, and I love that she does. Dispelling myths that travel with diabetes has to be a logistical nightmare involving routine strip searches and confiscation of devices is only a good thing, and hopefully will show that diabetes shouldn’t be a reason to delay a trip somewhere.

I’ve made it no big deal by never declaring that I have diabetes or that I am carrying diabetes kit, because why the hell draw attention to something unless necessary? If, for any reason, an alarm sounds, or I get asked about what I’m wearing or carrying, I have a clear, polite, stock standard response that usually does the trick.

That doesn’t mean that travel is never going to involve diabetes-related questions, but there are certainly ways that can minimise just how much of an issue it all is – or even stop it starting to begin with! Dozens and dozens of flights, more security check points than I care to think about … and the times there was an issue can be counted on one hand. No big deal.

The longer you live with diabetes, the better you are at finding shortcuts to make life easier. And reducing just how big a deal every day occurrences are is one way to do just that.

For example, being weighed at diabetes consultations (in fact, most consultations) is a no-no for me. I’ve made it clear to my endo why I don’t want to be, the circumstances under which I will agree to it, and why I find it difficult.

By the way – I know that being weighed is actually a big deal for a lot of people, me included. There’s a lot tied up in stepping on scales. I’m certainly not trying to minimise the minefield that is weight and being weighed. I am just trying to explain how I have been able to remove a lot of the angst just by doing something simple and being clear about my wishes.

Apart from a few times where I have had to repeat my position more than once, it’s never been a problem. It’s actually interesting how HCPs respond when you ask why they need to do something. ‘We need it for our records,’ is never a good enough reason for anything as far as I’m concerned – certainly not how much I weigh.

I get the position of privilege I am coming from here, by the way. I know that I am assertive enough to state what I want and expect, back it up if necessary, and having that confidence means I find it easier to navigate the often treacherous waters of diabetes and getting what I want. I am comfortable saying no and holding my ground, and I can’t remember the last time that wasn’t the case.

Diabetes is a huge deal, so working out ways to make things a little less big makes sense to me. I don’t have the time, inclination or energy to waste on things that really can be minimised. What is important and a big deal (or what isn’t) for me, will be different for others, but I do wonder if sometimes we make more out of things that we really don’t need to. Because, really, sometimes it’s good to shrug our shoulders and just think ‘no big deal’.

#TravelWithDiabetes – no big deal

Selective

July 5, 2019 in Communication, Diabetes, DOC, Social media | 2 comments

Let’s imagine, just for a moment, that a television program or newspaper claimed that there was a cure or treatment for type 1 diabetes that you could brew in your kitchen with a few pantry items.

It’s not really all that hard to pretend that this scenario is real: almost every week there is something somewhere that claims to be a way to treat diabetes, and sometimes, this mythical treatment is for type 1 diabetes.

What happens when we see this? Well, usually, it starts with some low level ranty outrage from a first responder who caught the piece and feels that they need to share it with the diabetes world (hashtag – DOC).

Then, as it gains momentum, others get onboard, because we all love a little SoMe outrage. Inevitably, there will be some comments about how ‘This might work for type 2 diabetes, but I/my child has type 1 diabetes, and I/they did nothing to cause it and this is the serious type of diabetes so stop it now.’ (Because adding some ‘type wars’ to the discussion is always helpful.)

There will be blog posts written about it (possibly/probably by me) and someone will demand an audience with the reporter, so they stop perpetuating myths about type 1 diabetes.

Right?

The outrage can be exhausting, but I do get it. We don’t want people to simplify our condition, of have people thinking that there is an easy fix. We want people to understand that it is hard work to manage diabetes and that every time there is a claim that it can be easily treated, people move further away from what it is really like. We want people to know that, so we talk about it loudly and everywhere.

So, after watching the ridiculous claims from Medicine or Myth the other night, I turned to Twitter to see what people were saying about the idea that hemp kombucha was miracle cure or to hear the criticisms about the poor study design of the trial.

Was there a barrage of people questioning the idea that simply drinking 100ml of a fermented drink a day could possibly be all it is going to take to treat the incredibly complex health condition that is type 2 diabetes? Or tweet after tweet probing whether the ‘trial’ that decided that we’re on a winner with Kombucha would pass any sort of test? Was there a choir suggesting that this was really all a lot of hocus pocus and it was undermining just how serious type 2 diabetes is – and how hard it is to treat it?

There was now tweet from Jane Speight…

…and that was pretty much it. (It is a very fine tweet, and that #sciencefiction hashtag deserves accolades!)

And there was no one up in arms about the way the merry band of doctors was talking about type 2 diabetes in such sensationalist and stigmatising ways. If they had been talking about type 1 diabetes, our response would have been swift.

What we saw on this program this week is actually dangerous. We can’t dismiss it as yet another ridiculous claim from a nut like Pete Evans, or Sarah Wilson, or the latest footballer’s wife. We can’t attribute it to an Instagram wellness guru. Instead, we saw three qualified healthcare professionals – a neurosurgeon, a GP and an immunologist; healthcare professionals that people trust with medical advice.

And – showing some bias here – perhaps it would have been easier to dismiss and discredit the whole show if it was broadcast on a more traditional tabloid program such as A Current Affair. An SBS show, with three Australian practising HCPs? People will think this is legitimate.

The way Medicine or Myth whitewashed type 2 diabetes was a disgrace. And as diabetes advocates, we should be calling out this sort of garbage, the same way we would ludicrous claims about type 1 diabetes treatments.

Totally unrelated, but I live in the most hipster street in the most hipster suburb of Melbourne and there is a place on my street that brews and sells seventeen different types of kombucha.

Step away from the hemp kombucha

July 4, 2019 in Diabetes, Food | 7 comments

I love working out of the same office as Jane Speight. It means that I have a friend just down the corridor, plus I have this idea that being around her and the ACBRD team makes me smarter. (Admittedly, I am the only one who thinks that.)

Jane may not be quite as excited by the working arrangements, especially on the not rare occasions where I appear at her door and go on some rant that she didn’t ask for. (‘Jane! Have you seen <insert latest thing that is pissing me off>? Let me tell you all my thoughts about it right now.’)

So, the other day, when Jane appeared at my door wanting to talk (rant) about hemp kombucha, I was more than ready to sit back and listen. For a change.

Yes…

Hemp kombucha.

There is a television show on SBS in Australia called Medicine or Myth. I’d never seen it, however I did know that Dr Charlie Teo is one of the hosts. Charlie is a well-known and controversial neurosurgeon. He is joined by GP, Dr Ginni Mansberg and associate professor in immunology, Dr Ashraful Haque. They are the trio directing the show, which sees Aussie pitching home-grown treatments for treating all that ails them.

I had not ever come across the other two hosts before, but a Twitter search showed that Ashraful is interested in host-parasite interactions (and guitars). The first bit made no sense, but I like guitars. Ginni also hosts (the horribly named) Embarrassing Bodies Down Under, and is a ‘passionate anti-aging skincare geek’. I don’t know about you, but I generally don’t go to my GP for advice on how to reduce fine lines and wrinkles, but maybe I’m being narrow-minded.

The episode that screened this week featured John Leith who was diagnosed with type 2 diabetes a couple of years ago. And that brings us to hemp kombucha.

Within about thirty seconds of watching the segment I had already dismissed it as complete and utter rubbish. In fact, the second that John referred to hemp as a ‘superfood’ I rolled my eyes so far back into my head that I almost blacked out.

I then grabbed a piece of paper and started making notes of all the misconceptions about diabetes that were being thrown around. I’m not going to list them all here, because I have more important coffee to drink, but if Ginni Mansberg is your GP, find another one now. Her statement that ‘Poorly controlled diabetes will [….] destroy your feet’ followed by saying that an A1c of under 10% is what ‘diabetics should aim for’ was enough to set me off yelling at the computer screen.

But back to John and his magical mystery kombucha. Apparently, it cured his diabetes. That’s right, after five or six weeks of drinking this glucose busting elixir, his glucose levels were back in range. The three experts – and I am now using this term loosely – were astounded, and to make sure we knew that, made acceptable TV astounded noises. In fact, they were so caught up also making acceptable TV astounded faces that not one of them asked if the corresponding reduction of food portions, increased fresh food or boosted exercise plan could have contributed (i.e. caused) the improved glucose numbers John was seeing.

In fact, John’s claims were enough for this merry band of HCPs to send the hemp kombucha off to trial – another term I am now using very loosely. According to the voice-over person narrating the program in a serious voice, trials are run by an independent scientific team experienced in clinical research who recruit carefully selected participants.

According to the next segment, those carefully selected participants included three people: two with type 2 diabetes and one with ‘pre-diabetes’. They all drank 100ml of hemp kombucha a day and then recorded their BGL on day 1, 3 and 7 of the week-long trial.

I know. Robust.

The results were astonishing. Apparently, blood glucose results came down on average 0.8mmol/l, with 75% of participants (out of a total of 3?) reporting improvement in glucose results.

I have so.many.questions.

We were not told if the participants were doing any else to manage their diabetes. Were they taking medication? Were they on a specific eating plan? Were they exercising? Had any of them lost any weight during that week? Why did the trial (really? trial??) only run a week? Is it reasonable to suggest that three data points is really enough to confirm that a treatment is successful?

I can’t answer any of these because none of this was revealed in the program.

However, it was enough for the hosts to claim that they were excited about this as a treatment for type 2 diabetes.

Let’s just think about that for a moment. This ridiculously shambolic and hopeless experiment was enough for three healthcare professionals to suggest that hemp kombucha is something people with diabetes should consider…and that the scientific community should sit up and pay attention. All this without a glance to the fact that John and his n=1 claims are also associated with a hemp kombucha business, and the least vigorous trial I have ever heard.

You know, this really could work for some people. Complementary therapies do have a place in modern medicine. Many have been studied extensively to see how they can augment science-based treatments. However, before any HCP even thinks about mentioning them, they need to be able to point to some evidence. Three people and three blood glucose checks is not evidence. It’s a twenty-minute segment in a sensationalist crappy television program.

Look, I don’t really want to link to this train wreck of a story, but I think that you need to watch it yourself to appreciate just how ridiculous it is. So here you go. (I’m sorry.)