IWishPeopleKnewThatDiabetes

If you have anything to do with diabetes and glanced at Twitter this week, it’s unlikely that you could have missed the juggernaut that was #IWishPeopleKnewThatDiabetes.

Wednesday 22 April was designated the day that the Diabetes Online Community would come together and share what we wish people knew about diabetes. We kicked it off with great force here in Australia and it took off like a runaway train from there! Late on our Wednesday night, I watched the US wake up and Twitter explode with the #IWishPeopleKnewThatDiabetes hashtag. I had to force myself to turn off my devices and go to sleep because I could quite easily have stayed up all night following.

I was amazed at the diversity of the things people were sharing. I found myself laughing out loud and wiping away tears at some of the things I read, and a lot of the time, nodding in agreement.

Critics of these sorts of activities say that they are a waste of time – that we are preaching to the converted and that it is a self-indulgent pity party. I say that’s rubbish!

Firstly, even if the majority of people who read the tweets are others with diabetes, why is that a bad thing? Building our community – coming together, supporting each other, listening to others’ stories – is how and why we become stronger. I had several people reply to my tweets telling me that they felt the same way. I did the same thing several times.

And there is absolutely nothing wrong with fist pumping and patting ourselves on the back for living with diabetes. Or saying it is tough. Diabetes does suck sometimes; it is difficult to live with; it is a shit. Acknowledging that doesn’t make us weak or pathetic. It doesn’t mean that we have given up or that we think that we have it worse than anyone else in the world. It is just saying how we feel.

I didn’t read all the #IWishPeopleKnewThatDiabetes tweets (there are over six and a half thousand of them!) but I did read a lot of them. I read tweets from people I know well and those I’ve never come across. I connected with new people and retweeted and retweeted and retweeted until I thought I was going to be sent to Twitter purgatory for a while and told to settle down!

Well done to Kelly Kunik who kicked this off last week. I don’t know that Kelly has had much sleep over the last few days. She seemed to be tweeting and retweeting pretty much around the clock!  Kelly is a bit of a force of nature. I caught up with her and another DOC friend, Stacey, when I was in NY and the three of us spoke so much we forgot to eat. Seriously. We remembered to drink coffee, but somehow we didn’t remember to order lunch! Hope you’re getting some rest now, Kelly!

I couldn’t even begin to say what my favourite tweets were. Perhaps the ones that focussed on advocacy issues and dispelling myths. But every single one did resonate in some way – even if the experience was not the same as mine. I feel that I have a better insight into how diabetes affects people’s lives. I hope – and am sure – that others have walked away feeling the same way.

(To see the reach of the #IWishPeopleKnewThatDiabetes hashtag, click on this link. At the time this blog was published, it was up to almost 14,000,000 impressions.)

We added another SHAG print to our collection the other night after attending an exhibition opening at the fabulous Outré Gallery. We now have two huge artist proofs that are based on the fabulous Peter Seller’s film The Party. Dance your way into the weekend with the soundtrack here!

 

Most days, I write on this here blog about my life with diabetes. Sometimes it is light and fluffy and frivolous. Other days, I lay myself bare and write about things that affect my very core. I have written about things that have left me feeling quite vulnerable but they are part of living with diabetes – the serious side, the scary side, the sad side.

Everything you read here is honest. It is what is happening to me. It is how I see my life with diabetes. My interpretation may be completely different to someone else’s, but I write genuinely and as openly as I possibly can.

Yesterday, as confirmation of what I already knew to be true flooded social media platforms, I found myself incredibly angry.

I already knew that Belle Gibson was a fraud. I knew that her story of curing her cancer by eating well and using natural remedies was a load of rubbish. The same way that every other charlatan promising to cure you of whatever health condition you’re living with is complete and utter bullshit. Anyone who tells you that eating an organic/plant-based/paleo/carb-free/high carb/high fat/low fat/only kale diet can treat or cure you of cancer (or diabetes or anything else) is lying. That is all there is to it.

I’m not selling anything here at Diabetogenic. There are no cookbooks being flogged, no eight week program for you to sign up to, no magic ‘teatox’ I want you to buy to fix whatever is not working in your body. I’m not promising you anything other than a way to spend five minutes while you have a cup of coffee.

Yet I have benefitted from this blog. I have been asked to speak at conferences here and overseas. I have been invited to bloggers summits and to sit on expert panels as a consumer representative.  I take these things very seriously. I have been afforded opportunities because what I write is considered to be of value to others either living with diabetes or working with people with diabetes. People take what I say here and believe it to be true.

And it is. But Belle Gibson has tainted the writings of every health blogger.

This goes beyond Belle Gibson. Every other wellness expert – all of them – should be held to account right now. I am talking about Sarah Wilson, Pete Evans, Vani Hari, Ashy Bines, and anyone else making health claims that cannot be substantiated by real evidence. THESE PEOPLE ARE DANGEROUS. Frequently, mixed up in their lies about their miracle cures are more lies about vaccinations and medications. They prey on people who are vulnerable and scared and desperate.

Today, I am furious. I am horrified that some people will lump me – and the people I know and love who write incredibly honest and worthwhile blogs about their daily lives with diabetes – in the same basket as Belle Gibson. I fear I will be tarred with the same dirty, lying, fraudulent brush. I feel the need to justify my writings and the very existence of this blog.

But I am not Belle Gibson. I am not lying to you. I am not trying to sell you anything. I just want to connect with other people who are living with diabetes. I just want to be part of a community of people who I can turn to for support and help.

Go away. There is nothing to see here today.

Instead, enter #IWishPeopleKnewThatDiabetes into your search engine and spend the day reading about the things we all want everyone to know about diabetes.

This is the initiative of Kelly Kunik from Diabetesaliciousness. But don’t read her blog today either. You can do that tomorrow.

Today it’s all about this hashtag: #IWishPeopleKnewThatDiabetes

Go!

 

IWishPeopleKnewThatDiabetes

I could never ever work in advertising. A combination of cynicism and disbelief at anything I ever see in an ad would make me a difficult employee!

There is a very real gap between the truth of diabetes and what we see in advertisements for diabetes products. I frequently find myself shaking my head in disbelief at the way diabetes is portrayed.

This is what a stomach using an insulin pump looks like. That is my stomach (apologies if you are eating, drinking or just looking). Those dots are the ghosts of infusion sets past in various stages of healing. There is also probably some tape residue stubbornly stuck to my skin. Pretty (gross), isn’t it?

Stomach real

#NoFilter. Obviously

This is what a stomach in a pump ad looks like. Magically, any hint of previous infusion sites have disappeared.

ad stomach

This morning, here is what my meter announced my BGL to be. (Hashtag: fuckoff)

BGL real

This is what the reading on pretty much every box and poster of BGL meters looks like. (Hashtag: bullshit)

meter adCGM graphs in real life look like the trajectory of rollercoasters with mountainous highs and cavernous lows, while the slick promotional materials show straight lines, nicely fitting in between the upper and lower alarm limits.

People in advertisements for diabetes paraphernalia are always outdoors, happy and rolling down hills, big smiles plastered on their faces. They wake up looking well-rested.

Real people with diabetes may spend time smiling and happy (I love rolling down hills – especially at this time of the year and getting all covered in Autumn leaves), but I’m putting it out there and saying that their glee is not because they have just done a BGL check. Unless the result is 5.5mmol/l. Each and every time. (See about meter photo. There was no smiling at that!)

I get it. No one wants to see my stomach on an ad for insulin pump therapy – that’s not selling units of product! But surely there needs to be a middle ground somewhere. I would like there to be an occasional BGL reading of over 15mmol/l on a poster for a meter. Because it happens. It’s not the end of the world and it doesn’t mean the meter is crap. And a stomach with a few pock marks from old infusion sets doesn’t reflect the quality of the infusion set. It reflects reality.

Diabetes isn’t pretty. It’s an ugly, scary and pretty un-fun thing to live with a lot of the time. That doesn’t mean that I spend most of my time in a ‘pity me’ funk, but I do admit – quite honestly – that it is shit at times. How about we aim for a bit of honesty and truth in diabetes advertising? Telling it like it is doesn’t mean we are weak or showing defeat. It’s just being authentic.

 

‘You bake a lot for someone with diabetes.’ These words came out of the mouth of someone not all that bright who may read this blog, but has clearly not taken on board anything I’ve ever written.

It wasn’t the first time that I have had people express surprise at my love of baking and baked goods considering that I have diabetes. I’ve even had other people with diabetes say they were told baking was an absolute no-no for the pancreatically-challenged when they were diagnosed and, as such, have never baked anything in their lives.

I do bake a lot – regardless of my diabetes state! I bake several times a week. On days when I don’t bake, I read cookbooks and plan what I’ll bake next.  I bake when I am happy, sad, anxious, excited, content, angry. And I bake a lot when I am stressed because I find it to be calming, peaceful and satisfying.

My neighbours know when I am feeling particularly stressed because those periods involve baking EVERY SINGLE day which equals home-deliveries around 7pm of whatever is still warm out of the oven. I think the neighbours sneakily like it when I am stressed.

I love baking because it is reliable, predictable and practical. Mix the right quantities of the right ingredients for the right amount of time at the right temperature and you will, inevitably, end up with something beautiful and delicious. And as you get better and know how certain ingredients work with other ingredients, you can mix things up and be creative.

In other news - I need an apron.

In other news – I need an apron.

Plus, baking gives me an excuse to make a mess.

Baking is reliable. Except for the rare complete balls-up, the results are exactly what you expect. The end product almost always looks more or less like the picture. If you start out making a cake, you will end up with a cake at the end of the process.

Baking is the exact opposite of diabetes! Diabetes is unpredictable and unreliable and most of the time, you have no idea how you ended up with whatever it is you ended up with. (Case in point: lunch of poached chicken salad containing zero carbs and a dressing of nothing more than olive oil and lemon juice, pre-prandial BGL – 7.8mmol/l; 2 hour post-prandial BGL – 18.9mmol/l.)

The unpredictability of baking only ever comes to the fore when bolusing for whatever it is that I’ve baked. Sometimes I get it right. Other times I don’t. It can be a little hit and miss. Correction boluses were invented for this exact thing! If you don’t like baking, that’s fine. But don’t let diabetes be the reason you don’t bake.

It’s ANZAC day this Saturday and I did a trial run the other day of my tried and true ANZAC biscuit recipe that I scribbled out in my recipe notebook a number of years ago. This is a fail-safe recipe and takes no more than ten minutes to throw together and then only a short time to bake. For those of you who don’t know what an ANZAC biscuit is, have a go! They are absolutely delicious and because they have oats in them, you can fool yourself into thinking they are a health food. Each biscuit (cookie) for those in the US has about 12 grams of carbs.

ANZAC recipe

 

Earlier this week, The Conversation ran a great article about the value of GPs providing nutrition education and information.

It’s a discussion worth having. For many people, their main HCP contact is a GP, so in the broader scheme of things, having GPs able to provide general health and wellbeing information (which includes nutrition information) is a sound idea.

Whilst most people I know with type 1 diabetes have a network of diabetes healthcare professionals – often including a dietitian – this isn’t the case for everyone. And for many people with type 2 diabetes their GP is the only HCP they see about their diabetes.

This discussion, however, is far broader than people with diabetes. Information about how to eat well and make food choices to enhance our health is a great idea and would be great if it were available to all.

But for this to work, we need to have confidence that our HCPs are equipped with up-to-date and sound information. As well as being across evidence-based nutrition guidelines, they need to be able to respond to queries about fad diets and ‘teatoxes’. (It’s a thing. Really.)

I can still remember the first dietitian I saw. It was within days of my diabetes diagnosis and it wasn’t a good experience at all. In fact, I walked out and vowed never to see another dietitian because, in the hour-long consultation, all I could envision was angst and stress about food thanks to diabetes. I didn’t want that at all. I certainly didn’t want the healthy way I looked at food to be compromised by someone who was extolling the idea of ‘bad foods’ and ‘good foods’, and expecting me to live with a diet that included the same things every single day.

So I never went back and spent the first three years with diabetes muddling along as best I could, adapting what I needed to and trying to keep enjoying food the way I always had.

When I started to consider using a pump, I decided to find another dietitian – one more in line with my attitudes to food. I didn’t have an understanding of carb counting (that wasn’t explained to me because it wasn’t the nutrition ‘in-thing’ in April 1998). Once again, I was disappointed to discover that the restrictive and dictatorial advice she was delivering wasn’t in line with my food philosophy which, I thought then (and still do now) to be quite sensible.

These two experiences have somewhat clouded my opinion of dietitians, despite having met with some amazingly balanced and well-informed dietitians since – including one I saw a few times who was just brilliant and never made me feel guilty because I like Nutella, but really am not a fan of lentils.

Nutrition advice needs to be about a lot more than what the best choices look like for breakfast foods.

There needs to be some acknowledgement of people’s relationship to food – how we view food in our overall life; where it fits in our family; if we enjoy preparing and knowing about food or if we just care about food as fuel; if we have any issues with certain foods. Plus there needs to be the ability to address the different levels of knowledge people have (and want to have) when it comes to food.  Not everyone wants to prepare food from scratch, make fresh pasta each week or mill their own flour. And that’s perfectly okay.

And there needs to be openness about the choices – a willingness to understand that some people may want to try something slightly (or very!) outside the guidelines. For example, the low carb movement at the moment is of great interest to a lot of people with insulin-requiring diabetes. I have heard some people say that when they have raised this as a discussion point with their HCP, the topic has been dismissed as irresponsible, not in line with the recommended guidelines and not something people with diabetes should be considering.

And yet, many people with diabetes do manage to eat a lower-than-recommended carb diet and are far happier with the results they see – whether those results be numbers on a meter or how they feel.

With the huge array of food and nutrition and health advice available to people now – frequently by people less than qualified to be providing it – having a respected healthcare professional help cut through definitely, in theory, sounds like a valuable plan.

But because of the very nature of discussions about food, whoever is charged with providing information and assistance – whether that be a GP or a dietitian, or any other HCP – needs to check their judgement at the door, be well informed, sensitive, and open to ensuring that the person they are working with is comfortable with the discussion and feels open to choice.

I remember the first time I ever heard Cassandra Wilson. I was blown away by her beautiful voice and have loved her ever since. She has a gorgeous new album – a tribute to Billie Holiday – which we’ve been listening to this week. But today’s Friday song is from the first album of hers that I listened to, New Moon Daughter.  This is Solomon Sang.

Yesterday was #dayofdiabetes, an initiative from Chris from A Consequence of Hypoglycaemia. You can read about it here!

I didn’t really get involved yesterday. I was feeling pretty blah about my diaversary and I didn’t want to live tweet just how blah I was feeling. But that doesn’t mean I didn’t follow along.

Here is what I learnt when I was scrolling through the #dayofdiabetes tweets last night as I was wide awake, hypo:

Diabetes is freaking boring! No seriously.

Like, really, REALLY boring.

Now this shouldn’t really come as a surprise to me. I live this thing. All the time. I know the drill. I know what it takes. I get it. (Or THIS, as @Diabetes Heroes most eloquently tweeted!)

The aim of the day is absolutely not to get people feeling sorry for us or thinking that we have things so, so tough. It’s a day where we try to live tweet our life with diabetes and take a moment or two to actually document each and every detail of life with diabetes.

You may think that we do that already. That between the blog posts and the Facebook pages and the Twitter chats that there is a lot of diabetes documentation already happening.

But what the #dayofdiabetes social media flood shows is just how much we DON’T say about our lives with diabetes.

We may talk about hypos (see my tweet at exactly 12.58am last night) and being burnt out; we may talk about campaigns and programs and experiences with healthcare professionals; we live tweet from conferences and participate in tweet chats. And we have our special brand of diabetes humour that we share too.

However, these things in no way give indication of the minutiae of diabetes. Those minute-by-minute things we do, the decisions we make, the mindless and almost-reflex-like way we reach for devices to push, press, inject, click – all to help us manage our condition.

If you don’t have diabetes, Google ‘#dayofdiabetes’ and have a look through some of the things people have posted. It may give you some insight into just what the daily grind is all about.

And if you do have diabetes? There’s lots there for us as well. For me, I find exercises like this so comforting.  Knowing that others feel the same frustrations about doing the same things, or that the thoughts that pass through their heads at certain points mimic mine makes me feel connected.

This is awareness-raising at its simplest and best. I wish that healthcare professionals and those responsible for developing diabetes policies could read the feed from yesterday. Perhaps this could be submitted as part of the consultation process for the development of the new Australian National Diabetes Strategy! I can’t think of a better way to provide a glimpse into a day in the life of someone with diabetes and what we need!

I have an app on my iPhone that tells me what I was doing (social media-wise) on this day in history. When I clicked on the app today, I discovered that I am clearly a creature of habit. Here are some posts for 15 April over the last four years.

diaversary1        Diaversary5

Diaversary4

Diaversary2

Diaversary3

Do you see a pattern? Every year there has been cake and ceremonial yelling from the rooftops that I am another diabetes year older. And someone – anyone – get me damn cupcake!

This year, I’m marking my diaversary with a quiet nod to the last seventeen years, but not much more. I’m just not in the right head space to do anything more.

However, today just happens to be the launch of the Consultation Paper for the development of the Australian National Diabetes Strategy and the opening of the consultation process. You can read all about it in my post at the Diabetes Victoria blog here.

Perhaps instead of using my diaversary to look back at my diabetes life and celebrate the last year, I’ll use it to think about looking forward. I. I might just find myself a little cupcake and consider what I hope to achieve in the next five years. Until there is a cure for diabetes.

 

Today, I (literally) rolled up my sleeves and put my money where my mouth is.

It’s fluvax day at work and with most of my colleagues, I lined up to get a free lollypop. And my annual flu vaccination. With all my banging on about how important it is for us to be vaccinated, it would be pretty hypocritical of me to not get my flu jab each year.

Here’s how it played out:

Step 1 – look of great suspicion from me because no one but no one can give a needle like I can.

Fluvax5

 

Step 2– Squeeeeeze! And waiting for the sting.

Fluvax2

Step 3 – Here. Let me help you! (AKA – I’m really not good at letting other people jab me with needles.)

Fluvax6

Step 4 – I’ll take it from here.

Fluvax3

Step 5 – Nope – didn’t hurt.

Fluvax1

Step 6 – Worth it!

FLuvax4

 

Okay, so here’s the deal. People living with chronic health conditions – such as diabetes – are more susceptible to catching (and experiencing complications from) the flu. The flu is not a little sniffle that has you deciding to take the day off so you can sit on the couch, eat left over Easter eggs and binge-watch Netflix. The flu is terribly debilitating. Approximately 3,000 Australians die every year because of the seasonal flu, or complications due to the flu or pneumonia. Yes – it’s serious.

This terrific information sheet offers lots of information about the flu, and this year’s vaccination program. It’s been developed by the Australian Government’s Department of Health, so if you are an anti-vax twit, now is your time to start talking about conspiracy theories and how the Government is in the pocket of Big Pharma. (Please do it away from me. I’m not interested.)

Also useful is this piece that appeared last month on The Conversation.

The flu is incredibly contagious and spreads easily through infected droplets in the air and by hands. Vaccination is the best way to prevent and stop the spread of the flu. I don’t know about you, but I do as much as I can to live a healthy life. Getting my annual flu vax is a really simple, relatively painless and safe way to help me on my way.

I have always known that stress affects my diabetes. Stressful situations – particularly prolonged ones – have the potential to send my BGLs into the stratosphere. Regardless of constant rage-bolusing or the complete avoidance of any food containing a scrap of carbohydrate, getting numbers in range when feeling stress is almost impossible.

The thing though that surprises me is how even small stresses can affect BGLs. Wearing a CGM gives great insight into this. Often, I see sudden rises in BGL that almost as suddenly drop back to within range.

After a day with a few unexplained (or unexplainable) spikes on my CGM graph, I decided to see if I could work out what was going on. These spikes didn’t seem to correlate with meal times, so I knew it had nothing to do with food intake.

As explained previously, I was wearing CGM under some duress, really. Aaron was away for work and it was on only for my peace of mind. To minimise feeling overwhelmed, I basically had my settings so that the only alarms and alerts I’d receive would be when I was dropping too quickly or when I was low. The high alarms were effectively turned off.

But after seeing spikes, I started to wonder what was happening. I turned the high alarms back on the next day and started paying attention to when I was starting to go high. Each and every time, it was because I was in a situation with some element of adrenaline-causing stress.

One time it happened when I was caught in traffic and I wasn’t sure I would make to school before the bell rang. I started getting more and more anxious that I would be late.

Another time, I was in a meeting that was running overtime and I needed to move my car before the parking meter expired.

And then, there was the time that I walked in the door to find the letter from VicRoads informing me that my medical review was fine and that my license wasn’t being suspended. And that I did not need to provide an eyesight report. (The outcome here was good, but before I read the letter, just seeing the logo on the front of the envelope, thinking about the difficult phone calls to VicRoads staff and taking a few minutes to consider what could be inside had my stress levels increasing.)

The adrenaline response is so clear on the graph. In all of these instances, there was a spike (not always huge, but definitely visible) that only lasted a short while. Often the blip would be only half an hour or so.

Stress isn’t always bad though. Had I been wearing a CGM when I jumped out a plane last year, I am sure that the stress response – from the excitement, the anticipation and the outright fear! – would have been reflected on the graph.

Excitement – from all sorts of things – may make you feel great, but it can still cause a spike. Managing stress-causing situations – especially those out of your control is sometimes impossible. And sometimes, you want to do things that are going to cause that blip. Some adrenaline-releasing activities can be very, very fun!

Keeping an eye on the leaps and bounds of my CGM graph reminded me (yet again) of the complexity of diabetes and how pretty much everything impacts on it in some way. I turned the high alarms off after a couple of days. I was starting to get concerned about the number of uncontrolled stress-inducing situations that I was having that particular day and the alarms themselves were starting to stress me out. So off they went. Because that was ONE thing I could control!

Read about Renza

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