Come fly with me....

Come fly with me…. (2015 to Orlando)

By the end of this year, I will have travelled overseas five times and interstate heaps more. And over the last few years, have done a lot of travel – for business and pleasure with my family. So with this recent experience under my belt, I decided to enter Diabetogenic into the Top Travel Tips competition run by Virgin Australia and ProBlogger with some tips and tricks that I have learnt on my travels.

Always visit the city public library. (Boston 2015)

Always visit the city public library. (Boston 2015)

‘Travelling with diabetes’ is just ‘travelling’ for me. It’s not like I can leave the diabetes at home – I asked and it refused. I have never considered diabetes as being a reason to not travel. It just takes some planning. But then, so does travel in general!

Steamboat Natchez (New Orleans 2013)

Steamboat Natchez (New Orleans 2013)

As I have said frequently, diabetes adds an extra degree of difficulty to life. And it is the same with travel. It’s not anything all that significant, just something to consider. So here are my fail-safe tips to travelling not only safely, but also ensuring that a wonderful time is had.

camels

Camels in the Atlas Mountains (Marrakech 2013)

1. Have fun!

Lady Liberty (New York 2010)

Lady Liberty (New York City 2010)

2. Don’t let diabetes be the reason that you don’t travel. And further to that, don’t let diabetes be the reason that you limit your travel to areas you consider ‘safe’.

Shoes in every possible colour combination. (Barcelona 2013)

Shoes in every possible colour combination. (Barcelona 2013)

3. Read points one and two again.

Ice skating in Central Park (New York City 2011)

Ice skating in Central Park (New York City 2011)

4. Work out what diabetes supplies you need to take. And then double it. I know: diabetes paraphernalia add bulk and that is a pain – especially when you are trying to travel light (a concept completely alien to me, because: shoes). It is highly likely that you will end up coming back home with a lot of the extras, but that is a far better option compared with trying to work out how to access insulin/pump lines/BGL strips etc. when you are in the middle of a cooking with truffles tour of southern Italy. (Note to self: find and book cooking with truffles tour in southern Italy.)

The magic of a gondola in Venice

The magic of a gondola (Venice 2009)

5. And again – I know it’s a pain, but carry things with you rather than packing them away with your stowed luggage. That way, you know where it all is, and the insulin won’t be subject to significant temperature changes. I do know of people who stowed their insulin and it froze, rendering it useless. And someone else whose luggage sat on the taxiway in direct sunlight for 6 hours cooking their insulin. It’s unlikely, but in rare cases, it can happen. You don’t want to be that person!

Mozart everywhere! (Vienna 2012)

Mozart everywhere! (Vienna 2012)

6. To declare or not to declare? That is the question. I never walk up to security and announce that I have diabetes. But equally, if necessary, I am happy to answer any questions. I seem to set off security alarms with alarming (!) regularity. By the time my shoes have come off, and any jingly-jangly bracelets are removed, I still frequently set off the alarm. No idea why. At that point, with a pat down on the way, I do point out that I am wearing a couple of medical devices, pointing to them on my body. I am always relaxed about it and willing to pull them out for show and tell. It’s never ever been a problem. Ever. And I don’t assume that the security person will know what I am talking about, so I use simple terminology when explaining what they are for. Often, an interesting conversation ensues!

Dubai

Dubai 2011

So on that: stuffed in with my travel documents is a letter from my endocrinologist stating that I have diabetes. That letter has never, ever come out – I’ve never been asked. However, it always there, because it is a piece of paper, weighs nothing and the day I decide I don’t need it will be the day I am asked for official documentation to prove my faulty beta cell status.

7. For pump users. Having an insulin pump undoubtedly makes travel easier. No need to do any sorts of tricky calculations for time zones and working out what time to take your long acting insulin. I always have the same procedure: once it’s wheels down at my final destination, I reach for my pump and reset to local time. That’s it! Done! I don’t do it earlier in case of any delays along the way.

Denmark Street for music stores (London 2014)

Denmark Street for music stores (London 2014)

TAKE A PUMP BACK UP. Most pump companies offer loan pumps. Just make sure you give yourself enough time to organise one.

Oh, Paris.

Oh, Paris. (2008)

Write down your pump settings. I save the settings in my phone and save a copy in the cloud as well. Because I seriously couldn’t tell you my insulin sensitivity factor (or anything else) if my life depended on it. Which it kinda does!

Pumps fail. It’s a reality. It’s crap. And even back up pumps fail. I know the likelihood is small, but it can happen. And if it does, you’ll still need insulin – both basal and bolus. So with that in mind, don’t forget long acting insulin. You can get pre-filled pens if that is your preferred option (don’t forget you’ll need needle tips!). I take syringes because they are easy to use, light, and do the trick!

8. Travel insurance. Don’t leave home without it. And don’t forget to disclose diabetes.

Apartment doorway. (Rome 2012)

Apartment doorway. (Rome 2012)

9. Medical ID? Some people don’t go to the corner store without their medical ID. Other people rarely, if ever, wear something (guilty as charged). It is an incredibly personal decision as to whether or not you wear something identifying you as someone with a health condition. Think about where you are travelling, if you will be spending periods alone and if you think that having a medical ID would be the best thing for you.

Montmartre (Paris 2013)

Montmartre (Paris 2013)

The gorgeous seaside Honfleur in Normandy.

The gorgeous seaside Honfleur. (Normandy 2009)

10. Frio packs are great if you are travelling to hot places and you are not sure the availability of a safe fridge. I have found (increasingly) that some hotel rooms don’t even have fridges in them anymore; in Boston, I spent 10 minutes looking for a cleverly hidden fridge in my room at the Hyatt only to realise that there wasn’t one! Having said that, insulin is a lot hardier than our pharmacists would like us to believe, and it won’t disintegrate before your eyes if it’s not refrigerated constantly.

11. One of the best things about travelling is exposure to new foods. Often what you are eating and its nutritional value are a complete mystery. Eat it anyway. You can always correct a high blood sugar or treat a hypo. Don’t let diabetes be the reason to not try the local delicacies.

IMG_1140

So much delicious food. Carb counting is your friend!

And while we’re talking food – think about the food available while you are actually in transit. Aeroplane food will never be the best food you will eat. I have never, ever, ever ordered the meal for PWD, but I know others who do and say it’s fine. Don’t think you HAVE to order a special meal just because you have diabetes.

IMG_1139

There seem to be some recurring themes in our travel photos. (Coffee everywhere)

I always make sure that I have my own hypo stash while on planes. But don’t worry if you don’t (or if you’ve already munched your way through). You can always get juice on flights. (Don’t forget – on some flights food and drinks are not included in the fee and you will have to pay on board.)

Ampelmann (Berlin 2012)

Ampelmann (Berlin 2012)

12. I don’t exercise, so when I travel, I spend the first couple of days low until I remember that I am walking miles and miles and miles. And then remember to alter my basal rates on my pump. (If I was smart, I would do this before the hypos start. I am hoping to become that person one day.) Same thing applies, of course, if you are usually super active and suddenly doing nothing but lying on a lounge chair, reading a book and doing nothing more than waving your hands at a waiter for another cocktail.

13. The Diabetes Online Community (DOC) is your friend! There are people with diabetes EVERYWHERE and we’re a helpful bunch! If you’re in a pickle, social media might just be the thing to connect you with someone to help you out. (And here is the famous Pumpless in Vienna story again.) And even if you are not having a diabetes crisis, travel is a great chance to meet up with people you’ve gotten to know in tweetchats and diabetes discussions online.

Bright (xmas) lights, big city  (NYC 2014)

Bright (xmas) lights, big city (New York City 2014)

One of my favourite things when travelling is to do just that. I have spent countless hours all over the world getting to know people from the diabetes online community and they have moved from being wonderful cyber friends to truly wonderful in-real-life friends. Diabetes may have connected us, but there is much more that has secured that friendship!

Yankee Stadium (New York City 2013)

Yankee Stadium (New York City 2013)

14. Shop for diabetes! (Yep, of course there is a shopping angle.) Shopping overseas gives you access to things you may not find at home – especially if you visit markets and fairs. I have found gorgeous little purses for my diabetes supplies while travelling and one of my favourite bags ever was bought on the Rialto Bridge in Venice from a man who makes all the bags in the store. (I justified the purchase by the size of the bag, telling myself it would carry everything I needed for my diabetes for the rest of the trip!)

Rijksmuseum Bibliotheca (Amsterdam 2014)

Rijksmuseum Bibliotheca (Amsterdam 2014)

Travelling should be fun and exciting and enlightening and enriching.  It’s a chance to spread your wings, find new places, meet new people and discover new things about yourself. It’s an awesome ride, and diabetes – whether you like it or not – is there with you. Most of all, remember what I wrote in this post here:

The theory of travelling and diabetes is different for every person and every trip. And every trip I learn something new – and not everything I learn is about diabetes!

We have made a point of visiting somewhere new each year over the last five years.

We have made a point of visiting somewhere new each year over the last five years.

I recently gave a short presentation on wearable medical devices that provide constant, real time data, and what that means for people on a day-to-day, minute-to-minute basis.
I had a slide that was a word cloud, including some of the (non-sweary) words I use regularly.

IMG_1087

Being conscious that the crowd were not all necessarily diabetes-savvy, I focused on the data aspect and what that means for me emotionally more than the technicalities of the technology.

Afterwards, over tea and Arnott’s cream biscuits (Kingstons FTW!), I spoke with a (non-diabetes) healthcare professional – a GP who had never seen either an insulin pump or CGM before.

What great technology! It’s like you don’t have diabetes anymore,’ the GP said to me, clearly not having listened to any of my talk – especially the bit where I said sometimes tech could actually be more overwhelming and a constant reminder of my diabetes. Or the part where I said that as much as I love the devices, I still need to drive them and do a lot of work.

I shook my head gently and smiled. ‘I wish. And one day, I hope it will be like that. But this tech, whilst terrific, is part of my arsenal in the significant self-management tasks I do each day to manage my diabetes.’

He looked far less impressed.

Oh,’ he said. ‘So it’s not all that great?’

‘No, no. I’m not saying that.’ I wondered if he had actually heard anything I said. Because as much as I talked about the overwhelming side of the technology and all the data, I spoke a lot about how useful it is too.

‘It’s complicated,’ I said. ‘Sometimes I love this tech; other times I hate it. But mostly, I am glad I can use it the way I want.’

I munched on my Kingston biscuit, thinking. ‘I guess it’s kind of how I feel about my mobile phone. I love it – it means that I can reach everyone I want to whenever I want to and they can reach me. It means I can check Twitter and Facebook to see what everyone is up to. I can check the weather. I can receive emails and reply to them all the time. It’s great, right?’

‘And it’s a pain in the arse as well. Pretty much for all the reasons that it is great. But regardless, I wouldn’t be without it.’

He nodded. ‘I think I get it now. That’s an analogy that makes sense to me. Diabetes is so huge. A lot of it doesn’t make sense.’
It was my turn to nod. ‘So much of the time I am guilty of forgetting that not everyone gets the intricacies of life with diabetes. I try not to have expectations that people know about it, but find it difficult to explain. Maybe I need to come up with non-diabetes explanations.’

Like ‘life is like a box of chocolates?’ Forrest Gump managed to do it.’

I laughed. ‘Actually, that’s a pretty good analogy for diabetes too,‘ I said.

He thanked me and walked away, promising to learn more about diabetes technology.
I spoke with a few other people, ate another (couple of) Kingstons and got ready to leave. As I was collecting my things, I heard the GP speaking with someone else. ‘The technology is great,’ I heard him say. ‘But it can be frustrating at times. Kind of like the frustration from having a mobile phone and being reachable all the time.’

I smiled to myself and left the room.

(Well, yesterday, but whatever.)

There has been lots of discussion about what happened 94 years ago yesterday – on 27 July 1921. University of Toronto scientists Fredrick Banting and Charles Best successfully isolated the hormone insulin. Today, that means that I am alive and kicking, 17 years after my islets stopped making any.

It means that type 1 diabetes treatment moved from being a starvation diet and not much else, to injecting a drug that was life giving and life saving.

It means that I take a drug that while giving me life, is also lethal and if not dosed carefully and with great consideration can cause terrible side effects.

It means that people with diabetes don’t die terrible, agonising deaths simply because they were diagnosed with diabetes.

It means that I need to be able to do crazy calculations to ensure what I put into my body completely and utterly imperfectly mimics what those with functioning islet cells do completely and utterly perfectly.

It means that there is a treatment therapy that gives us hope and life and allows us to live – sometimes very long, long lives.

It means that each and every day I feel fortunate to have been born when I was and not 100 years earlier.

It means I take for granted that I have access to a drug that keeps me going.

It means that there are far too many people around the world who still do not have access to the drug I take for granted. And 94 years later, that is not good enough.

It means that it was 94 years ago – 94 years ago – since the discover of insulin to treat diabetes and we are still without a cure.

And it means that I wonder when there will be the next breakthrough that is as significant and meaningful and life changing and life saving as what those two Canadian scientists discovered 94 years ago.

But mostly. It means that I live with hope. Hope that those scientists are somewhere working away, and perhaps – just perhaps – are about to find that next big breakthrough.

Hope banksy

 

 

 

Any day that sees a BGL of 32.4mmol/l is not going to be fun.

It happened around midday on Saturday. It came from nowhere. In range BGLs at waking. Trip to a new café for a breakfast of delicious coconut-y porridge and milky coffee. A quick trip into the city to buy a birthday present for one of the kid’s friends who was having a party that afternoon.

So far, so fun.

And then, suddenly, nausea hit.

At that point, I realised just what a bad diabetes day it was about to become. I’d changed handbags that morning and my BGL meter hadn’t made the transfer. I was CGM-less as well, so apart from the nausea and a slightly dry mouth, had no idea if I was high – or just how high I was.

Thankfully, we live less than a ten minute drive from the city. We got home, me holding the bag that had contained the present close by in case the feeling of nausea became the real deal.

We made it home. I checked my BGL. Oh yes, I was high. So, so, so high.

I calculated a bolus does of insulin and used a disposable syringe to jab it into my stomach. I changed out my cannula, line, cartridge and insulin, inspecting the old one I’d just removed. It looked absolutely fine. And I’m sure it was fine. I set a slightly elevated temp basal, resisting the urge to set it at 200% – effectively giving myself double the usual dose – and sternly told myself that I needed to let the bolus do its thing. Slow and steady was the way!

Then the vomiting started. Then it ended.

And then I fell asleep. And a couple of hours later, I awoke feeling fine. Well – as close to fine as one can be after a couple of hours of unexplained, very high BGLs and the muscle pain that comes from throwing up.

My BGLs returned to range gradually. The nausea was gone. The mild ketones I’d had earlier disappeared, flushed out with lots of water.

Not fun. At all. But I did what I planned to do that night, brushing off the looks of surprise from my friends when I mentioned the day I’d had. They probably wondered why I was up and out and not curled up in a ball under the doona. There were moments I wondered that too.

If I was to stop every time I had a diabetes thing happen, I’d never get up I thought, but didn’t say it out loud because it doesn’t really make sense to people who don’t have diabetes.

It’s what we do. We get on with things. Because diabetes throws so much our way that we just learn to accept it and push forward. We do it without much fanfare. But sometimes – sometimes – I kinda do feel like I deserve a medal. And yesterday I got one after I did the 5km in Run Melbourne!

Run Melbourne

Medals for the family!

Can you think of any other medical condition where removal of a treatment is threatened?

I was thinking about that question a couple of nights ago, in my hotel room in Sydney, at 2.30am, getting over a hypo, after chugging OJ, messaging people, tweeting and reading pages of my book. I couldn’t fall back to sleep.

In diabetes, we (still; STILL?) hear of HCPs threatening to remove pump therapy from people who are considered to not be meeting expected results.

Let’s not even open the can of worms asking who actually has set those results, or if the PWD had any input into the decision making process around targets, or if too much focus is being given to a number.

No. Let’s instead just focus on the fact that some PWD are (still; STILL?) being told that their chosen treatment option for their life long health condition will be removed from them as punishment because they are being ‘bad’.

Now, I love my insulin pump, but let’s remember what it is. It’s a little box that delivers insulin. Okay – a little, highly-sophisticated magical box that delivers insulin, but nonetheless, it’s an insulin delivery device.

It would be the same as saying to someone who is using insulin pens that because their A1c has increased, (often the reason behind the threat of pump removal), their pens were being confiscated and they would have to use disposable syringes. Or, people using disposable syringes would have to use glass syringes with needles needing to be sharpened.

Crazy, right? There is no way that we would consider that okay. It’s actually laughable.

Of course, people with type 2 diabetes are not immune to the threats of diabetes management, however in this case, it is threatening to add treatment rather than take it away. People with type 2 are often told that if they require insulin injections to treat their diabetes it is because they have failed with other treatments.

Making threats about diabetes management options is bullying. Holding the tools we need to live well with the condition over our heads as rewards or punishment is not okay. It is scary and unfair and sends the wrong message.

Earlier this week, Aaron and I saw the Melbourne Theatre Company’s production of the play ‘Death and the Maiden’. It was fabulous – amazing performances – and if you are in Melbourne and looking for a night at the theatre, get tickets! Here is the Schubert string quartet by the same name, which is providing my background music in the office today. Have a lovely weekend.

 

Over the last couple of days, this meme has found its way across my social media feeds several times:
  
Each time I’ve scrolled past it, I have felt uncomfortable. For a number of reasons. 

Firstly, I wouldn’t wish diabetes on anyone – even for a day. 

But mostly, because for this to be true and fair, then surely it could be said of each and every health condition. Surely if people with diabetes expect others to walk a day in our shoes pumps (see what I did there?), then those with every other condition would expect the same. 

‘Really?’

How many times have I heard that response when people find out I have diabetes. An upwards inflection, a little surprise, a lot of confusion. I know that it is an involuntary response – perhaps because people weren’t expecting that to be the explanation to their question about the pager-like device I have just pulled from under my clothes, or the little beeping machine on my lap, or why I am guzzling jelly beans like a woman possessed.

We know that it is because diabetes is an invisible condition. Unless you look for the signs, who can tell that my beta cells stopped working over 17 years ago? And even if you did look for the signs, what exactly would you be looking for?

We talk a lot about how frustrating it is to have a condition with limited visible signs. It means that people say things that annoy and frustrate us, or that people have limited knowledge and understanding of just how much work goes into living with a condition that has such limited visible signs.

But sometimes, I am grateful for the invisibility. Sometimes, it is nice to be able to package up all the diabetes things and keep them hidden away – to tuck my pump more securely in my bra and make sure that there is no tubing poking out and to hide away my BGL meter and jelly beans and glucose tabs. It’s nice to not give people a reason to ask.

I know how exhausting it can be answering the myriad questions people have about diabetes. Of course, a lot of the time they are downright rude, but most of the time, they are borne from nothing more than human curiosity. Sometimes it’s great to try to explain what living with diabetes is about to someone who genuinely wants to know, or to share my diabetes story.

How we each deal with our diabetes is highly personal. We can shout about it from the rooftops, we can whisper about it amongst only those we choose or we can remain silent and not share with anyone. And it’s all okay – it’s okay to change how we want to speak about it.

This last week, a lot of people have asked me about the green band around my wrist. I explain that it is from a conference I attended for people with diabetes.

‘You have diabetes? Really?’

I nod. And sometimes I sigh. Or smile. But I answer their questions. I gently point them to kind ways to talk about diabetes. I highlight how there is no one way that people with diabetes look. I bust some myths and ask them questions about their diabetes knowledge.

And frequently, I hear them say, ‘I had no idea about that. I had no idea that there was so much involved in diabetes management.’

I look at them and take it in. ‘Really?’ I ask. Because I wonder how they could NOT know.

This time last week, I was sitting on a plane, flying back from Friends for Life. As we’d booked this trip at the last possible moment, I was not travelling the long LA – Melbourne leg with Aaron and the kidlet. We hadn’t managed to all get on the same flight and my trip (booked though work) and theirs didn’t coincide.

So I had a lot of thinking time and kept trying to put into words what the Friends for Life (FFL) experience was for me. I found myself tearing up quite a bit, and kept touching the green bracelet that was wound around my right wrist. It’s still there, and I find myself glancing at it when I am sitting in meetings, or as my fingers fly across the keyboard typing these words.

I had an idea of what I was going to experience at FFL. I have spent enough time with FFL alumni and read a lot about it to have formed an impression about what the week would hold.

I knew what to expect.

Excect I absolutely didn’t. I had no idea.

I expected it to be all touchy-feely. I expected lots of hugs. I expected a quiet understanding – of all and from all who were there. I expected to feel included and part of something and welcomed.

And those expectations were all met. Ten fold.

But what I didn’t expect was the sheer, overwhelming emotion of the conference.

And I didn’t expect the science.

Make no mistake. Friends for Life is a diabetes conference in the truest sense of the word. It is not a support group meeting – of course there is support, but it is much more than that – it is a scientific meeting with the focus very clearly on providing up-to-date, evidence-based, important information to people living with diabetes. It’s not dumbed-down – absolutely not! The information presented at FFL would not be out of place at the ADA scientific meeting I’d attended the month prior, or ADS-ADEA conference I am attending next month.

I didn’t expect an exhibition hall that was bigger than what I know I’ll see at the annual ADS-ADEA conference.

I didn’t expect that there would be announcements like the one Ed Damiano made about his work on the (brilliantly named, iLET) bionic pancreas. And when it was made, I didn’t expect the outpouring of emotion, of gratitude, of understanding, of hope.

And running alongside it – as part of it – are the sessions where you sit, and breathe and cry and nod and share your story. Or say nothing and just fill up.

This is not a cult-like gathering of the pancreatically-challenged and our support people. There is no sitting around feeling sorry for ourselves. Equally, it’s not a pep rally where we marched to the beat of the same drum, patting ourselves in the back. Every person at that conference has their own story and while there certainly are similarities, there are also differences.

Friends for Life challenged me. It made me feel uncomfortable at times. The discussions were not all easy and self-affirming. There were topics that I don’t regularly talk about, instead hiding them away in a chamber of my mind that I manage to keep locked away most of the time. I sat quietly in talks about how diabetes affects those around me. I struggled to share my story at times. But I did, often with hesitation, because talking about how diabetes impacts on Aaron and our beautiful girl hurts me in ways that make me feel like I am falling to pieces inside.

I didn’t walk out of all of those challenging sessions feeling great. But I felt validated and I felt less alone. And I understood better that it was okay to speak about those confronting issues, even if what I am feeling isn’t wonderful. I took away from those sessions the ideas and strategies other use and I feel better equipped to manage some of the more difficult aspects of living with diabetes in the family.

I attended FFL as a guest of Children with Diabetes (CWD). For years, I have been begging CWD President, Jeff Hitchcock to bring this event to Australia and while I did that with the idea that it would be great for people affected by diabetes to have the experience, I had no idea just what that experience would mean. I still am not fully cognisant of what the experience has given me.

My expectations weren’t met at Friends for Life. They were exceeded. And I hope that we can find a way to bring it to Australia so that as many people as possible can become part of the FFL family.

A huge thank you to Jeff Hitchcock and the CWD Board for covering my costs to attend Friends for Life 2015.

280adaySome dot point facts:

  • It’s National Diabetes Week here in the wonderful land of Oz.
  • It’s about all types of diabetes. Every. Single. Last. Type.
  • 280 people are diagnosed with diabetes each and every single day in Australia.
  • All types of diabetes sucks.
  • No one asks to get diabetes.

And now some dot point observations:

  • There is no merit in changing the name of the different types of diabetes. None at all.
  • I am yet to hear a decent argument about why we should change the name of type 1 diabetes to something else.
  • Having said that, if you can incorporate the word ‘unicorn’ into a new name for type 1 diabetes, I might get on board. Although probably not. I just want a unicorn.
  • Many health conditions have ‘types’ and ‘sub-types’. There are five different types of lupus. Can you name them? Can you tell me how they are different? If someone said they have lupus, would you be able to engage in a meaningful discussion about their ‘type’ of lupus? I know I certainly couldn’t – and my mum has lupus.
  • Quite frankly, I don’t care what type of diabetes the 280 people diagnosed each day have. It is all diabetes and it is all a condition that is significantly underfunded, a condition which carries horrendous stigma and a condition which is crap to live with.
  • What I do care about is that there is increased awareness about all types of diabetes. I care that more research dollars are thrown at diabetes. I care that more healthcare professionals know about diabetes and about diagnosing ALL types, quickly. I care that people living with all types of diabetes have access to healthcare and devices and medications and support.
  • The whinging and whining and bitching and moaning that is coming from some circles is tedious. Especially considering the whinging and whining and bitching and moaning is being done mostly amongst like-minded people so nothing is actually being achieved.

And finally, a comment:

Last week, I sat in on MasterLab, a two day advocacy workshop run by the wonderful Diabetes Hands Foundation. In the room were some of the most successful, vocal, passionate, smart diabetes advocates in the world. These are people who take their cause to government and make changes for people living with diabetes, who raise awareness about living with diabetes and raise funds to help support people living with diabetes. They do it without fanfare and without accolades. They just do it.

How many times do you think there was a discussion about the different types of diabetes? How many times do you think parents of kids with diabetes in the room tried to say how much tougher they have it than others with diabetes? Or people with type 1 diabetes complaining that no one understands why it is more difficult than type 2? How many times do you think that type 2 diabetes was demonised?

Not once.

Because those smart people in the room – the people who are respected and listened to in the wider diabetes space – know that there is no point in working against each other.

But you know what? I’ve been saying this for some time and there are people far more eloquent than I on the same page.

This is from (US-based) Diabetes Patient Advocacy Coalition (DPAC):

How will you share a unified patient voice for a disease as diverse as diabetes? (Type 1 vs. type 2, parent vs. child, etc.?)

DPAC has committed to the idea that diabetes doesn’t discriminate. We have no interest in promoting cross-type discord. There are benefits of numbers, passion, and reach in various parts of the diabetes community. We all benefit from all those skills. If an individual has an interest in raising their voice to help people with diabetes get access to safe and quality products and services in the United States, then we welcome them with open arms.

Divided we can be ignored. Together we make a difference. 

And in her wrap-up of last week’s MasterLab, my friend Alanna wrote this brilliant blog post. And this closing paragraph:

We as a community need to stop putting our walls up. Nobody, not you, not me, not the president of the USA can advocate for change in diabetes care and treatment until we educate effectively. Defending your “type” and throwing the other under the bus is unacceptable behaviour, and is counter productive to creating positive change and a world without the financial, physical and emotional burden of diabetes.

I am calling on all of my readers, old and new to commit to never trying to defend your type, and only defending the human beings who are living with mal-functioning pancreases so we can really get to work.

Another friend, Kerri Sparling wrote this last year, speaking about the wonderful Walk with D initiative.

The diseases are different in their origin but so similar in how they map out physically, and more importantly, emotionally, and I wish I had known that earlier.  I wish I had been more supportive of my type 2 peers.  I wish I had known how they felt.

I have lost friends because of my stand on this issue. I have had arguments with people who think that I should be using this blog and my voice to advocate for changing the name of type 1 diabetes or rallying against people not understanding the differences between the types of diabetes. I have had people challenge me and ask me what I stand for – what my diabetes advocacy is all about.

The answer is simple. I am against diabetes stigma. I am against building up one type of diabetes at the expense of another. I am for access to healthcare and devices and medications for all people with diabetes. I am for a unified community. I am for the wonderful #OzDOC community which is a beacon in Australia of unity within the diabetes world, and congratulate Kim Henshaw in promoting an inclusive, supportive and downright fun platform for all people with diabetes to connect.

It doesn’t mean we have to agree on everything or all be focusing on the same issues. It just means that we work together and are kind to each other. #TypeAll

Gorgeous new James Taylor CD made its way into our home yesterday. Angels of Fenway is a favourite given that I was there just a few weeks ago.

Collector card

 

National Diabetes Week is an important week for people living with diabetes in Australia. It is an opportunity to have all types of diabetes given attention and focus in the media and to talk about the significant health issue it is – for people living with diabetes, their families, and health systems.

And sometimes, messed up in the campaigns and the social media onslaught, we get sidelined by arguments and heated discussions, and we start to forget one of the real reasons this week is important: how diabetes affects those of us actually living with the condition.

Today, I helped launch a new report. The Diabetes MILES Youth survey was conducted last year and the results have now been published. The survey aimed to examine the impact of diabetes on young people living with diabetes and their families.

The report (which can be found here) shows that a quarter of young people living with type 1 diabetes experience moderate to severe depressive or anxiety symptoms.  This image shows the top problem areas for girls and boys.

MILESYouth

Today’s launch was incredibly powerful. Of course, we heard the statistics and heard how significant the problem is (a third of parents of children with diabetes reported impaired emotional well-being). And we heard about why this sort of work is important. But for me, and I suspect most people in attendance this morning, the most powerful moments were when we heard from Ryan Lange and Freya Wickenden, two young people living with diabetes.  Both spoke beautifully about the role diabetes plays in their lives. Freya’s mum, Dallas, also spoke and shared some insights into parenting a child with diabetes.

MILESYouth2

As I said in my presentation at the launch – I can speak about this for hours and hours. I am a passionate advocate for all people with diabetes, but the vulnerability we see so often in young people with diabetes has meant that this has become a focus area of my work.  But my words are insignificant and unimportant. It’s the words from young people living with diabetes that are central to understand what they are facing. Here is just some of what they told us.

 

The Diabetes MILES Youth report – was funded by the National Diabetes Services Scheme, and initiative of the Australian Government administered by Diabetes Australia. The study was conducted in collaboration with Australia Centre for Behavioural Research in Diabetes. The Diabetes MILES Youth project is part of the Young People with Diabetes National Diabetes Program for which I am Program Manager.

 

Read about Renza

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