Diabetogenic

Who says diabetes is invisible?

November 28, 2018 in Devices, Diabetes, Real life | 3 comments

Yes, we know that diabetes is a so-called invisible condition. I’ve written about it a lot both here (and here, and here, and here) and other places as well. And I’ve also grappled with how I feel when I realise that my carefully and deliberately shrouded condition actually becomes visible without me knowing it.

Our diabetes does not wear a cast or make us immediately look different in any way. We are not identified as someone with diabetes until we tell someone that is the case. Even when diabetes is impacting on us in the moment physically – for example if we are actively dealing with a low or a high – and there are around others, most people would not automatically think ‘diabetes’.

As a condition that can be hidden, diabetes is referred to as invisible. But lately, I’m not sure how comfortable I am with this idea, because I think it is a little murky when thinking about just whothe condition is invisible (or visible) to.

So I decided to ask a few people what they thought: people I know well, family members, work colleagues, friends and acquaintances. Just about everyone I spoke to said that they thought diabetes was invisible. They said that rarely would they think diabetes when around me, unless we were specifically talking about it, or they noticed me ‘doing diabetes’. Someone I asked actually said ‘Oh, I forgot you have diabetes,’ which I guess points to just how invisible some people see (or rather don’t see) my diabetes.

The only people who said they didn’t think diabetes was invisible were friends with diabetes. ‘How could I think that?’ someone said. ‘No one living with diabetes thinks it’s invisible. It’s always in our face.’

That’s exactly how I feel. When we say diabetes is invisible, what we are saying is that it is invisible to others. The invisibility cloak only applies to people looking at us, not those of us whose diabetes is under that cloak. For us, it reminds blindingly visible and present. It’s the devices on our bodies (even if we hide them under our clothes); it’s the scars from puncture wounds; it’s the always-present glucose meter; it’s the blood stains from pricking our fingers or removed CGM sensors or pump lines; it’s the glucose strips that get into every crevice of our homes, our cars, our pockets, our bags, or workplaces; it’s the alerts and alarms that sound from our phones and devices; it’s the pop up reminders of medical appointments or to fill repeat prescriptions or pick up NDSS supplies. And they’re just the things we can see and hear, not taking into consideration the constant presence of diabetes in our minds, our hearts, our souls…our very being.

To a degree, we can control just how visible we want diabetes to be to others. Personally, I like that I can chop and change how noticeable the physical signs of my diabetes are. Today, I am walking around in a tank dress and the Dexcom on my arm is obvious for all to see. But throw a denim jacket over it and it disappears, sending my diabetes incognito.

For some people, making diabetes invisible is important. Others like it to be front and centre. There are myriad reasons for making decisions around this, and those decisions and choices will be different for everyone.

I do wonder how much of that decision is made exclusively by the person living with diabetes, and how often we change the level of visibility based on what we believe others may expect. Are we wearing our diabetes loudly because we feel we have to or because we feel we should? I know I have been the loud, out there advocate because I’ve felt I should be.

Or is there something about the shame and stigma of diabetes that makes people want to hide it away? Or are we trying to minimise the visual, or audible signs of diabetes to protect others? Or to stop others from feeling burdened, bored or worried about our diabetes? I also know I do that a lot.

But try as we might, for those of us living with diabetes, we cannot conceal it from ourselves. It lives with us, in us, around us. And it is always visible.

Back to work after the celebrations

November 26, 2018 in Advocacy, Babies, Devices, Diabetes, pregnancy and diabetes, technology | 3 comments

I spent a lot of the weekend feeling a little sentimental. Our beautiful girl turned 14 and as usual, we reminisced, telling the story of the day she was delivered. And I reread my pregnancy diary, the feelings of intense excitement, anxiety, fear and anticipation flooding back. I remembered how, 14 years ago, the only way to check glucose levels was to do blood glucose monitoring. And I was doing that up to twenty times a day. My poor, poor fingers.

While I was remembering all this ever the weekend, I was holding onto an embargoed secret, knowing that an announcement about the expansion of the current NDSS CGM funding program was about to made. In between organising a weekend of birthday celebrations and wrapping gifts, I was also planning for the media announcement which would be taking place early on Sunday morning at a local women’s hospital. I took breaks in preparing food for Sunday’s birthday lunch and read running sheets, familiarised myself with the ‘talent’ who would be explaining what the new funding meant to them, and made sure that I knew where I had to be at 8.30am the following morning.

And amongst all that, I prepared myself for what I knew would be coming: disappointment. There would be a lot of disappointment because the funding package was not going to include everyone, and those who missed out would be upset.

This is my personal blog, and although I work for Diabetes Australia, this is about my own life with diabetes, and to a degree, my life around diabetes. I write a lot about what is going on in the ‘diabetes world’ – both in Australia and more broadly. Sometimes what I write is directly applicable to me; other times, it’s not.

Today, I am writing about the announcement that was made yesterday and I guess that the line between personal and professional is potentially going to get a little murky. Please read my disclosures at the end of this post carefully, because my bias needs to be strongly acknowledged – by anyone reading this piece… and by me while writing it. But I hope that also, people understand that I need to write about this personally too.

In a nutshell, yesterday’s announcement delivered an extra $100 million dollars to fund CGM to women with type 1 diabetes planning for, during and after pregnancy; people aged 21 years and over who hold a concession card (and meet clinical criteria); and children and young people with ‘other insulin-requiring diabetes’ (for example, cystic fibrosis-induced diabetes). This is all on top of the current $54 million funding which provides free CGM products to children and young people up to the age of 21 who meet the clinical criteria. Also, Flash glucose monitoring has been added to the list of products available, meaning more choice for people with diabetes.

This is good news.

And yesterday, as I chatted with women with type 1 diabetes who had just had babies and were planning more, or were currently planning for a pregnancy, I knew just how much of a difference having access to this technology would mean to them.

Kelly and baby Grace with Health Minister, Greg Hunt, and CEO of Diabetes Australia, Greg Johnson.

I thought back to when I was pregnant and how it would have been so much easier had CGM been available then.

How wonderful that these women, and thousands of other women like them can breathe just a little easier knowing that they will be supported with this tech while planning and during their pregnancies – and the period afterwards. Oh – and then I remembered breastfeeding hypos, the jars of jelly beans on every flat surface in our house – including the back of the loo – and how, when home alone, I used to feed our baby girl on the floor in case I had a bad low and dropped her. CGM alerts and alarms would have been so brilliant then!

CGM is out of reach for so many people. It is expensive technology and I know there are people making sacrifices to be able to afford to use it. I know what that is like – back before pump consumables were on the NDSS, we had to budget $300 per month for lines and cartridges, tightening our spending on everyday items, forgoing holidays, meals out and other things we wanted to do so that I could continue to drive my pump.

Is it fair that the technology we use to keep us alive means we need to make such sacrifices. It certainly doesn’t seem so. And I know that is how people are feeling after the funding announcement was revealed yesterday.

Am I disappointed? To a degree, yes, I am. I believe that I, and other people with diabetes like me are every bit as worthy as women with T1D planning for to have a baby, and kids and young people with type 1 diabetes, and adults on healthcare cards. I completely disagree that type 1 diabetes is harder for kids than it is for adults, because actually, type 1 is tough at any age, and each age and stage of life has its own particular challenges.

But I refuse to see yesterday’s announcement as anything other than a positive step in the right direction, just as I saw the initial funding for children and young people a good thing.

People have missed out; people who will still not be able to afford CGM; people who desperately need this technology to live the best diabetes lives they possibly can. And that’s why yesterday is not the end to the CGM funding story. In fact, it’s a new beginning.

Also, I think it is important to point this out: An announcement like this does not happen quickly. It comes from years and years and years of work. CGM has been in Australia for over ten years now. Yes – that’s right. Over ten years. So when you hear people referring to this as new or emerging technology, or saying it wasn’t around five or six years ago, that’s rubbish.

I can remember that pretty much as soon as CGM was launched into Australia, Diabetes Australia and JDRF Australia started to fight, lobby and advocate for this to be funded. How do I know this? Because I sat in meetings back then as we tried to nut out just how to approach the government for funding. What would work? What sort of model was achievable? How would the people who were most at need benefit? There are no easy answers to these questions. All we have to rely on is evidence and what the evidence shows is that there are some groups that benefit most from CGM technology.

Diabetes Australia, JDRF Australia, the Australian Diabetes Society (ADS), the Australian Diabetes Educators Association (ADEA), the Australian Paediatric Endocrine Group (APEG), and the Australian Diabetes in Pregnancy Society (ADIPS) have worked together to form an alliance to provide evidence-based submissions and information around CGM technology (amongst other issues). Why is this important? Because bringing together the peak consumer bodies with the peak professional bodies means that all stakeholders are represented, and it’s pretty hard to disagree when we combine PWD sharing our own stories for why this tech matters alongside HCPs talking about the clinical benefits.

At no time has this alliance ever pushed for anything other than funding for those with high clinical need. The idea of an upper age limit was never, ever promoted by this group – we never fought for access to be only for children and young people. Our original funding submission is a matter of public record and can be seen here and you can clearly see that we were advocating for what the evidence pointed to.

I am proud to have been a part of this work – for over ten years now. It is the very definition of ‘slow burn’. This slow burn is not all about being in the public eye and yelling about what we do. In fact, it is all very much out of the public eye. It’s monotonous at times; it can be repetitive and it takes time.

Yesterday we celebrated. Today we’re back at work, looking to how we get the next bit of funding secured.

And finally, we can yell and stamp our feet and say that we should have fully funded CGM for all people with type 1 diabetes. But that is never going to happen. If we look to other countries where there is funding available to people with diabetes of all ages, there is still clinical criteria that must be met in order for people to access reimbursed sensors and/or transmitters. Nowhere has a policy where anyone and everyone with type 1 diabetes can simply show up, put out their hand and be given a CGM. Instead, clinical need is used to determine who has access. I think that we need to be realistic about expectations of what funding will look like in the future.

DISCLOSURES

I have worked for Diabetes Australia since January 2016, and prior to this role, worked at Diabetes Victoria for over fourteen years. I have been involved in CGM funding submissions from Diabetes Australia and the alliance which includes JDRF, ADS, ADEA, APEG and ADIPS. I was also on the Department of Health’s implementation Committee after the initial $54 million CGM funding was announced. I have been involved in writing information and education resources about CGM and hosted a number of national webinars after CGM products were first listed on the NDSS. I have spoken at technology events held at Parliament House, sharing my personal experience of why I use CGM, and, more broadly, why this technology is beneficial to many people living with diabetes.

I use CGM full time. I do not receive any subsidy or discounts for using CGM, and fully fund transmitters and sensors myself. I am fortunate to have friends in Europe who have occasionally provided me with sensors when they have spares, and I am currently using a re-batteried Dexcom G5 transmitter. At the beginning of November, I spoke at a health professionals workshop for ADS where I demonstrated how to use the Dexcom G5, and was provided with one sensor for this demonstration.

The cutest baby ever.

Nothing static; nothing simple

November 22, 2018 in Diabetes, Hypo, Lows, Real life | 2 comments

I have just returned from two days of meetings for the HypoRESOLVE project for which I am a member of the Patient Advisory Committee (PAC). Read more about this project here (and watch the short video at the end of today’s post).

This is a huge project. Sometimes its scope hurts my little brain, but at the same time I love some of the almost audacious objectives and goals that have been set.

I left the two days of meetings with a similar feeling that I’ve felt after the previous meetings. And that is just how little we know and understand about hypoglycaemia.

This is one of the challenges when trying to define exactly what hypo is. Putting rings around something that is so personal, so diverse, so complex and so difficult to define for different people with diabetes is almost impossible. Our current classifications seem clunky at best; dismissive at worst.

I am one person with diabetes, but my own experiences of lows is inconsistent. I used to have lows that lasted for hours and hours and hours. But that doesn’t necessarily mean that they were the times I clocked the lowest reading on my CGM or BG meter. Those numbers could have just been sitting at or around the low threes for those couple of hours, not trending up – no matter how much glucose I inhaled – but, thankfully, not trending downwards either.

And then there are the lows that would send me into full overdrive of shaking and sweating and a pounding heartrate, but there may not have been consistency with the number. I could have felt like that at 3.3mmol/l or when my meter was not registering a number other than LOW.

I understand that classifications use numbers because when glucose hits certain levels, we can measure things such as cognitive impact or physiological responses. But numbers when it comes to hypoglycaemia – and all aspects of diabetes – are only a small part of the picture.

Sometimes I feel that the more I learn about diabetes, the less I know. And I have also come to learn that the allocation of numbers is sometimes almost arbitrary. They may make sense to researchers or regulators. But the reality is very, very different.

The problem with this is that there is no way ever that diabetes is going to be able to be classified by fixed numbers. There needs to be wriggle room and agility in interpretation.

I love that HypoResolve is trying to come up with innovative ways to satisfy all groups. Regulators need clear definitions to use as guides when considering new and different therapies. Clinicians and researchers need thresholds to point to. And people with diabetes? Well, we need to understand those definitions and the apply them to our own particular brand of diabetes…and how it may shift and change over time.

And that’s where the PAC comes in. Our role is to make sure the real life perspective is front of mind all the time, and to remind everyone else on the project that there is nothing static or simple about living with hypoglycaemia.

The sound of diabetes

November 21, 2018 in Diabetes, Real life | 2 comments

My health condition may be invisible, but it absolutely isn’t silent.

Going through security at an airport the other day (I can’t remember if it was Singapore of Heathrow), I set off the metal detector, a loud buzzing sound alerting security that they better check me out.

As I was getting a full body pat down, my handbag, patiently sitting next to me waiting for its own inspection, started squealing. Running through the airport at speed had caused the fall rate alarm on my Dex app to sound. Thankfully I’d already explained that to the security guard who was swabbing my insulin pump at the exact moment it elicited three short beeps. ‘Temp basal rate,’ I explained, knowing full well that would make no sense to anyone. ‘Also – diabetes is quite noisy, isn’t it?’

She smiled at me as her own machine, which had finished analysing the swab announced that I was safe, and not a danger to anyone other than myself when near a handbag store at any airport. ‘You’re good to go.’

I’ve customised my Dex alerts to vibrate rather than ring out – except for the fall rate alert (as it is a brilliant way to help prevent lows), and the urgent low alarm, which cannot be turned off or set to vibrate. But even with the vibrate settings activated, there is still noise. And while the urgent low alarm very rarely makes an appearance these days (reason I love Loop #2,394,821), when it does, it’s piercing!

I quite like the comfort of my pump alerting to let me know when Loop has activated a temp basal rate (pretty much most of the time….). It’s not a loud and intrusive alarm, so the three beeps are very much background.

There are the constant sounds of diabetes that have become very much the soundtrack to my life: the gentle clunk of my lancet device; the pop when I open a box of strips and the sharp snap as I close it; the clicks as I push a CGM sensor into my arm, retract the needle, and then place the transmitter into the sensor; the beeps indicating my pump line is priming. There’s the sound of lows: a straw being pushed into a juice box after being released from its plastic wrap, and the subsequent quick slurping; the ripping of paper being unwound from around a tube of fruit pastilles,

I’ve just spent a couple of days with friends with diabetes, and there’s something undeniably comforting about hearing others’ sounds of diabetes. Even more comforting is the way we all generally ignore those sounds. No one ever jumps when we hear the low alarm from someone else’s Dex. We trusting that they’ll deal with it in their own time and way (and also know that the last thing they would want is someone treating them like a child and fussing). We just hear it, maybe look up, maybe not. Although sometimes…

‘Is that you or me?’ one of us will say when we hear a CGM alarm.

‘That’s definitely not me…Is that you? What is that?’ we’ll say when hearing an unfamiliar alert from a device that’s different to our own.

‘That’s not you, or me…’ I said the other night whilst sitting in a restaurant, knowing it wasn’t coming from our table. ‘Does someone else in here have diabetes?’

Often we become immune to the sounds of our own diabetes. Those sounds that are there to alert us to a low battery or the need for more insulin in our pumps easily get ignored, until the urgent wailing which indicates that our portable pancreas needs more juice (of the battery or insulin kind) NOW, and the only way we can stop it is to respond.

I used to sleep through hours of low alarms, only realising they would have been ringing out the following morning when I checked my Dex trace. And Aaron too had become impervious to them after a while, and stopped waking…and then waking me…when I was low at night.

There have been times that I have been going along doing my thing and it’s taken someone to say ‘Do you need to do something about whatever is beeping?’ to even realise that diabetes was talking to me.

And sometimes, it takes hearing another PWD’s sounds of diabetes to acknowledge and respond to our own. (Another benefit of peer support!)

But even if it seems that we stop hearing the sounds of diabetes, it’s indisputable that it is a noisy beast. Which I guess makes sense. Because exactly in the same way that our condition is never really invisible to those of us living with it, it is never silent either.

Shush now.

I am not like Pete Evans’ nuts

November 19, 2018 in Awareness, Communication, Diabetes, Engagement, Healthcare team, Language | 3 comments

The other week, as I sat on the stage as part of a panel session at the HIMSS conference in Brisbane, a term kept getting thrown around that had me squirming in my seat. It was not said with any malice – in fact I believe it was being used under the perhaps misguided idea that it is represents positive and empowering language. But as I sat there and the term was being used, almost with abandon, I knew that we were going to have to have a chat about it. As per exhibit A:

Exhibit A

Activated patient? No. Just no.

When the moment was right, I took a breath. I’d been asked to comment on the current My Health Record situation, and whether I thought it was something that would benefit people living with chronic health conditions. ‘Before I answer the question, can we just consider the term ‘activated patient’ and how it is being used here today – and often in other contexts too. I’ve heard from people on the stage and in the audience use the term ‘activated patients’. I’m really not a fan of this term. In fact, I think it is really quite problematic.’

Activation is something that is done to something. Think Pete Evans and his activated nuts. Or yeast when making bread or cinnamon buns. Or my pink debit card that came in the mail with a sticker across the front telling me how to activate it. Pete Evans’ almonds were just passive little nuts before he decided to activate them. And before the warm water was added to the yeast, it was just powder sitting in a sachet. My pink card was simply a piece of plastic before I called a number, pressed a few other numbers once the automated message was played and agreed to a heap of terms and conditions, making the card able to work.

Those inanimate objects had something done to them to become activated – it didn’t happen on their own. Beforehand, they were passive.

I was not ‘activated’ to become a participant in my own healthcare. I was not given permission to lead the agenda of how I want to engage. I chose the people I would see; the health service I would use; the devices I wear strapped to me. I have never been a passive participant in my healthcare – or any other aspect of my life, for that matter. I have always been active. Of course there are times that I struggle with motivation and may be less active and pro-active, but getting out of those times was never an exercise in activation by others.

The idea that people become activated because they are given the opportunity reeks of the typical paternalistic attitudes that are still rife in healthcare.

Look, we can have a long discussion about the ‘consumerisation’ of healthcare, and how that is what is to blame for terms such as this. It is business lingo and while many think it probably refers to people being in charge of their health, it actually suggests the opposite.

Words that suggest something is being ‘done’ to a person utilising the health system are not empowering. They are not putting the person at the centre. They don’t indicate that the person is driving their care.

The term ‘activated patients’ provides a narrow interpretation about how a person is in charge of their healthcare, because it always is used to highlight people who are loud advocates for themselves, walking into every appointment with a list the length of their arm of things to discuss, therapies they want to use. But not everyone wants to do healthcare that way. Just because someone prefers – and chooses – to have a healthcare professional drive the direction of their care does not necessarily mean they are not ‘activated’.

Also – consider this: if a person can become an ‘activated patient’, that means there must also avenues for them to become a ‘deactivated patient’. That’s certainly not being person-centred. In fact, suggesting that we become something only because we have been given the right to be that way is the opposite of person-centred.

Meet Manuel

November 16, 2018 in Advocacy, Awareness, Diabetes | 1 comment

World Diabetes Day is celebrated each year on Frederick Banting’s birthday. Banting, of course, is credited with co-discovering insulin. That happened back in 1921, so it seems almost unimaginable that people are still unable to access insulin because it is so prohibitively expensive. And yet, that is the reality for children and adults all around the world.

Children like Manuel:

Frederick Banting said ‘Insulin does not belong to me; it belongs to the world’. Insulin belongs to Manuel as much as it does to you and me. But until he, and thousands and thousands of children and adults just like him, can access insulin easily and affordably, Life for a Child will continue to try to bridge the gap.

Read all about Manuel here. His story should be told just like anyone else’s, and in his own words. He is living with diabetes; his diabetes story is his own.

And then, once you have listened to his story, consider making a donation. (Please note that there has been a recent change to where you donate. Start by clicking here.)

Each year, on 14 November, I thank Frederick Banting for my life. I can’t think of any better way to honour his memory than donating to Life for a Child.

Smart moves

November 15, 2018 in Diabetes, Real life | 2 comments

I’ve been thinking about resilience. Mostly because recently, I had a few days where mine had gone a little AWOL.

My resilience levels affect a lot of what is going on in my life. When I am feeling super hardy, I think clearly, I am logical and common sense prevails. When faced with a situation, I pause, reflect on different options, try harder to consider others’ points of view and make calculated and deliberate choices. I make less impulsive decisions; I regret less; I feel more buoyant and sure of myself, and confident in how I decide to solve what lies ahead.

When resilience slips, I act without considering all options or potential consequences. And I stop doing a lot of the self-care that usually I do without too much thought. I sleep less; I eat less well. I become less risk-averse, realising – often too late – that the way I acted was not the smartest way, or I do something that I may regret later. Sometimes I catch myself before it happens, sometimes I don’t.

And it spirals. Because then the worry and concern about the way I reacted starts to play on my mind. And I stop doing what is best for me. I read things into the situation that aren’t there. I second guess myself. Spiral, spiral, spiral…

In diabetes, that reduced resilience plays out in the same ways, just with a diabetes-specific bent. I become a little reckless in the way I bolus – leaving it too late, making guesstimates that I hope won’t cause too many problems, of just plain forget. I ignore alerts and alarms, or silence them by making a quick, but not necessarily smart move. I don’t stop and think and try to understand the situation – I just act. Or I don’t act…I do nothing.

And, of course, in the way of diabetes, that spirals too. Rollercoaster glucose levels prevail as I can do nothing more than chase the impulsive decisions I’ve been making. I stop thinking about the overall picture, instead dealing with the immediate situation at hand.

All of this because I don’t have the resilience stores – the energy, the clarity, the right state of mind – to help guide me through the necessary process, but I need or want to do something … just for the sake of doing something.

I have a wise friend who has provided me counsel during these periods – including this most recent one. As I was jumping in from every which way trying to resolve a situation, she listened, and then gently suggested I take a breath, take a pause and take a step back. ‘Let it marinate. Don’t do anything right now. Just wait a bit.’

This is always great advice. We have all responded angrily to something, wishing that we had taken a few breaths, a few moments and a walk around the block before lashing out; or sent that email that perhaps could have done with the benefit of time, and a bit of editing.

…Or bolused for that high glucose number even though there’s a shedload of insulin on board, and all it needs is some time to work.

The best thing to do in all those cases would have been to stop. Just stop. And wait.

High resilience makes me work smarter, play smarter, sleep smarter and diabetes smarter. The trick is not only maintaining those levels to a point where I make smart choices, but to stop for a moment and try to identify when things start to slip, recognising triggers…and then work out how to remove those triggers for good.

Stop. Wait. And tea.

(Almost) Wordless WDD Wednesday

November 13, 2018 in Uncategorized | 3 comments

Happy World Diabetes Day. I made these. (Because of course I did.)

Number of times …

November 13, 2018 in Awareness, Diabetes, World Diabetes Day | 1 comment

With Diabetes Awareness Month in full swing, many of us will have seen the JDRF’s Type 1 Diabetes Footprintflash up on our SoMe feeds as diabetes friends show just some of the ways diabetes has impacted our lives.

This is my one: accurate as of last weekend:

This is just a sample of the numbers that show how much diabetes influences and affects our day to day (and night to night!). If we’re talking numbers when it comes to diabetes, (which I don’t really like to do), there are so, so many more. Here are just some of them… (all are totally random estimations – don’t take anything as gospel here, folks!):

The number of BGL strips found in unlikely places: 4,500,596,098
The number of fruit pastilles I can stuff into my mouth at one time whilst in the throes of an ‘I-am-dying-give-me-all-the-glucose’ hypo: 142
The number of hours being supported by friends with diabetes: 3 – and that’s just today!
The number of times I’ve caught my pump line on a door handle: an embarrassingly significant number (because: #NotGoodAtDiabetes)
The total weight I can lift/move when I am having a ‘super-power’ low: 1,450kgs
The number of red scarves bought at the ADA meeting ‘Stop Diabetes Shop’ because the bloody aircon is too cold at convention centres and I keep forgetting to bring a jacket: 3

The number of hours after my planned bedtime of 10.30pm I actually go to bed because I’m talking to DOC friends on the other side of the world: 2…3…4 (also: time zones suck)
The number of times my heart beats per minute when I realise just how low I am, and that there is no easy-to-grab glucose source in sight: 180
The number of days a Rockadex patch lasts on my arm: 7-10
The number of nights I’ve lain awake fearing what diabetes has in store for me:more than I care to remember
The number of handbags I have bought because I’ve convinced myself it will be ‘THE perfect diabetes bag’: 237
The number of frocks that are hanging in the cupboard unworn because there is no bra that works underneath it and therefore nowhere to house a pump and RL: 25
The number of supermarket aisles wandered around while low trying to decide what to eat: 8
The number of jars of Nutella in my house at any one time (for hypo purposes, of course): 4
The number of times I send out a tweet urging health writers to please be considerate when writing about diabetes: a few times a year.

The number of times I’ve thought a hypo simulator is a good way to explain what it feels to have a hypo to people without diabetes: 0
The number of gulps of water it takes to try to quench high glucose levels: 36
The number of times I’ve explained why #LanguageMatters in diabetes: 123,890,456…123,890,457…123,890, 458
The number of breaths I need to take before explaining – yet again – why I CAN eat that doughnut: 2
The number of times I have been grateful that diabetes didn’t stand in the way of me having a beautiful baby girl: every single minute of every single day
The number of ‘I know someone with diabetes, they died’ stories I’ve had to listen to: 6,984
The number of times I’ve said the words ‘No, it isn’t a pager/nicotine patch, mobile phone, fitness tracker’ etc to explain a piece of diabetes tech strapped to or hidden on my body: 9,465
The number of tears that have fallen because I feel overwhelmed by diabetes: countless
The number of times I’ve been glad to have been diagnosed with diabetes: 0
The number of times I acknowledge just how fortunate I am to have been born into a country where insulin is easily accessible: at least once every day
The squirts of surface cleaner needed to remove marks from wherever I’ve accidentally left blood after checking my BGLs: 3
The number of days I’ve wished I didn’t have diabetes: every single one of them
The number of days I’ve felt so overwhelmed and burnt out by diabetes that I find performing the most basic things (diabetes and non-diabetes) a struggle: Frequently. because diabetes sucks
Oh – and the number of times I’ve been wearing a white shirt when I’ve had a gusher: every time
The number of times I’ve said or written ‘My Diabetes; my rules’: 566,285 (3 of those have been in the last 20 minutes)
The number of times I give thanks to the brains trust behind DIYAPS: hourly
The number of alerts or alarms from my phone it takes before I actually take note and do something: 6 (unless sleeping and then: whatever)
The number of times I’ve accurately counted the carbs of anything containing rice: not once
The number of times I’ve asked ‘Have you spoken with people with diabetes about that?’: lost count…now I just weep
The number of lancets I have used in the last twenty years: probably about 18
The number of dot points on this inane and silly list: every single one of them!

What I hope for WDD 2018

November 12, 2018 in Awareness, Communication, Diabetes, World Diabetes Day | Leave a comment

Oh, hello! It’s World Diabetes Day this week. And that means one thing and one thing only: diabetes will be elevated to health condition of the week, and we will see it EVERYWHERE.

I recently wrote that I’d been a little out of sorts a couple of weeks ago. I’m back to my usual robust and resilient self, but on the way back, I seem to have misplaced the filter that usually muffles the directness for which I am sometimes pretty much always known.

I realised it was missing when I was speaking at HIMSS last week and I was pretty direct when talking to some app developers. Instead of doing my usual sandwich feedback (i.e. something positive to begin with; suggestions for how it could be better in the middle; something positive to round it out, all with what could be considered a Dolores Umbridge smile on my dial), I went straight for the filling of the sandwich.

It turns out that without my filter, my comments eschew (rather than chew) bread and are all about the meat in the middle. I become totally low carb in my feedback. And I lose my smile. (A doughnut would probably bring that back, though…)

For this week, we will be banging on about the need for diabetes awareness. Of course, this morning as I was dressing and tucking small vibrating or lighting up boxes and infusion sets into my bra, and checking the tape on the CGM on my arm, while wondering if Loop really did have that downward arrow on my Dex under control, all I could think of was diabetes to the left of me; diabetes to the right. And I’m stuck in the bloody middle with it because it won’t leave me alone. I can’t help but be diabetes aware. All the fucking time!

But this week isn’t about us, (this piece from Tom ‘Diabetes Dad’ Karlya from a few years ago does a great job of explaining that in ways less sweary than my own). It’s about putting diabetes on the agenda for those of us who don’t already think about it morning, noon and night because it’s mailing address is our body.

So, for that reason, local newspapers, news bulletins, online new outlets and everywhere else that is trying to fill a 24-hour news cycle with content will want to talk about diabetes. If previous years are anything to go by, what we see will not necessarily be all that great. But that doesn’t need to be the case.

Last week, I was involved in a news segment about diabetes. When I watched in back on the news that night, I was so impressed with the way the story was presented. I’d managed to chat with the reporter as she was putting together the copy for the newsreader to use when introducing the story, and what she would say. There was no use of words such as ‘sufferer,’ ‘diabetic’ or ‘disease’. Instead, it was a balanced story that presented the facts. It was no less a piece because it left out sensationalist language.

I know that news outlets like a melodramatic take on things, but if you are in a position to help frame the way that diabetes is presented in the media, do it! It’s easy to do (the Diabetes Australia Language Position Statement helps) and mentioning that it takes no more time to use engaging and empowering language rather than stigmatising and negative language may help too.

I’m all about hope at the moment – well always – so here is what I hope for this World Diabetes Day:

In the posts celebrating the theme of this year’s WDD, diabetes and families, I hope that nowhere is a person with diabetes made to feel guilty, or that their diabetes is a burden on their family. I know that diabetes affects my family. I know that diabetes has moments of keeping them awake. I know there are times they may worry. But thankfully, I have never, ever heard them tell me, others, news outlets, social media, one of our dogs that they don’t sleep because of my diabetes, or they spend every minute thinking about how diabetes impacts on us, or that my health condition eats into our savings. Think about what you are saying and how we may feel if you talk about us like that.

In news reports, I hope for accurate reporting that doesn’t make us look pathetic or as though we deserve pity. I hope for language that presents the facts about diabetes without adding judgement or blaming us for our condition.

I hope that whoever is thinking, writing, speaking, presenting about diabetes this week remembers that no one asks to get diabetes; no one asks to get diabetes-related complications. Blaming and shaming us does nothing for anyone.

I hope for balance, and that for every story that celebrates an Everest climbing (or similar) we acknowledge the less grand endeavours. Because when speaking about diabetes, we cannot only hear from those at the extremes of the spectrum. Most of us are somewhere in the middle and our stories shouldn’t be left out.

In online groups I hope for no discussions about why we need to change the name of type 1 diabetes to distance ourselves from people with type 2 diabetes. Because: 1. Shut up and 2. Stop it; you’re adding to the stigma.

And more about online groups. If people are sharing news stories that will inevitably show overweight people eating hamburgers, the correct response is not to shame these people and tell them they are pathetic for not eating low carb. Because: 1. Shut up and 2. No one cares about how many grams of fat or how few grams of carbs you ate today, or how much insulin you didn’t need because you ate a bowl of organic kale with some organic tuna with coconut oil for lunch.

I hope that diabetes is presented as a serious health condition that does not discriminate when selecting whose body it wants to hang out with (in?). And that all different body types are represented.

And while we are talking about representation, I hope that we see diversity in diabetes stories from people of different colour, race, religion and sexual orientation. Because factors affecting our diabetes go beyond just the medications we take, and not everyone living with diabetes looks or is the same.

I hope that the voices of people with diabetes are not drowned out by those around us.

I hope to see myths busted.

I hope that somewhere we see that diabetes affects the whole person – body, mind and spirit – and that any solution claiming to help us, addresses each and every one of those parts of us.

I hope to see those who are happy to #MakeDiabetesVisible take whatever platform works for them and shares, shares, shares; and equally those who want to be more quiet ,are given the space to do that too. (Read this beautiful piece from Melinda Seed for more.)

And most of all?

Most of all I hope that no person with diabetes sees anything this World Diabetes Day that makes them feel diminished in any way for having diabetes. Because if that happens, then surely the day cannot be measured a success.