Diabetogenic

A thousand words

December 8, 2015 in Conferences, DOC | 2 comments

I’m back from one of the busiest and most enjoyable conferences I have ever attended. The International Diabetes Federation’s World Diabetes Congress in Vancouver was a frantic few days, preceded by the Parliamentarians for Diabetes Global Network Forum. Before I get to the nitty gritty of the week, here are some pictures. They tell more than a thousand words and give you an idea of just some of the week. Let your fingers do the scrolling!

Obligatory ‘Outside the conference centre’ photo. I have quite a collection!

Banting. The man to whom I owe my life.

Spending time with inspirational women is one of the perks of this job. Sue Alberti at the joint PDSG and Young Leaders lunch.

My talk abstract.

And getting ready to take the stage…

And actually on the stage!

Slightly blurry, unfortunately, but this great slide was from Professor Jane Speight (ACBRD) in one of her excellent presentations about hypoglycaemia.

Because I’m a smart arse. (Also – ridiculous policy!)

I also had the chance to catch up with friends and other diabetes advocates and activists from around the globe.

These girls! Annie (@understudypancreas) and Kerri (@sixuntilme) make being away from my family just that little bit easier.

Outgoing president of the YLD program, Keegan Hall. He’s my partner in sarcasm!

Annie giving an incredibly eloquent and moving presentation about diabetes in her family, sharing her daughter’s story.

Cherise talking about DSMA and the amazing story that is #Simonpalooza. (Google it!)

Fun folks.

Bastian from #DeDEC speaking about a brilliant initiative he ran in Germany on WDD this year.

Dinner on the last night with Fredrik and Kyle from mySugr, and Bastian from DEDOC

Lots of things to write about in the coming days so stay tuned. It was a terrific conference. But I am so happy to be home!

Why we need to get political

December 1, 2015 in Conferences | 2 comments

I arrived in Vancouver at about 2pm on Saturday and by 4pm, I had taken my seat in the Morris J Wosk Centre for Dialogue, surrounded by members of parliaments from all around the globe. It was the second Parliamentary Champions Forum, an initiative of the IDF which involves 155 MPs across 42 countries.

Throughout the three days, we heard about the global diabetes situation. The numbers are terrifying; it is overwhelming. As I sat there, I realised the numbers stopped meaning anything to me. Hearing statistics of the millions of people affected, the billions of dollars being spent just washed over me. I stopped gasping involuntarily when I heard the numbers of people diagnosed with diabetes-related reacting to what I heard.

But I was jolted back to reality when the individual country reports started. Because suddenly, it stopped being about numbers and it became about individuals. Thankfully, this was repeated throughout the three day Forum.

At the welcome dinner on the first night, the inspirational Dr Susan Alberti from Australia spoke about her personal story. On the second day, over lunch, we heard the stories of some of the IDF Young Leaders in Diabetes. We heard stories of discrimination and stigma and lack of access to necessary medication and healthcare. We heard about how diabetes impacts individuals mental health and affects their wellbeing.

And this is why we need to bring politicians and MPs into the diabetes discussion. Of course we need policy change. Of course we need our elected officials to understand the magnitude of diabetes.

But equally, we need them to understand how it affects individuals. We need them to hear about day-to-day life with diabetes and how their decisions to cut healthcare spending, or not fund medications and technology actually make a difference – a significant difference – to how well we live.

I live tweeted throughout the Forum. Catch up at #IDFPDGN

Final hurrah

November 27, 2015 in Conferences, Travel | 2 comments

The last big diabetes conference of the year kicks off next week in Vancouver, and tomorrow, I head over there.

I’ll be popping in and out of here over the week, but Twitter is really where it’s at, so follow along on #WDC2015. I’ll be live tweeting sessions – and everything else that catches my eye! Not on Twitter? You don’t need to be to follow along, but if you want to get involved in the conversations and ask questions, you will need to sign up. (It only takes a few minutes.)

The World Diabetes Comgress always has great consumer representation and you can see from the program – especially the Living with a Diabetes stream – that there are some DOC usual suspects/frequent flyers presenting some great stuff.

As always, it’s a last minute rush to get myself ready, and spend precious time with my precious clan from whom I have been away far too much this year. (And I pledge that once I return from this trip I’ll to do my very best to not see the inside of another aeroplane until February!)

A is for Advocacy

November 25, 2015 in Advocacy, Awareness | Leave a comment

‘Don’t you ever get tired of talking about diabetes?’ I get asked this quite a lot. And I can see why. There is a lot of diabetes in my life, and I do speak about it frequently.

The truth is that I don’t get tired talking about diabetes. I get tired talking about my diabetes, but the subject of diabetes is one of which I never tire. Diabetes is too hard for too many people – for all sorts of reasons – and until that is not the case, there is too much to do. Being tired or bored is not an option!

Advocacy can be a broad term. It can refer to political process, influencing policy change or promoting people’s rights and responsibilities. It can also be about raising awareness. It can be small or large scale. It can be about groups or individuals.

Advocating for self can be tiring. Often the times we need to be our biggest campaigners and put in the most effort are the times when it is the most difficult. Standing up to hospital staff who want to strip us of our right to manage our own self-managed condition is all good and well and we can get all assertive and angry about it and talk about what we would do if it happened to us. But that moment when we are actually in A&E for an accident or emergency situation, actually standing up for our self may simply be just too hard. Or impossible.

I know that my advocacy energies are different when I am feeling ‘over’ my diabetes. I tend to sit back a little more and not put myself out there so much. And I look for what others are doing and turn my attention and focus to that. It’s kind of like advocacy-by-proxy!

That’s why larger scale advocacy is really important. Big awareness raising campaigns are important – sometimes there is an ask (such as more funding or increased attention to the condition). Other times it’s just to inform people about the state of diabetes affairs.

A lot of the time, it’s not all huge and loud with lots of media coverage – often there are behind the scenes machinations that take a terribly long time, are terribly boring and involve a lot of bureaucracy and paper-pushing. (One great example of that is the three-year-long battle that has been trying to fix the mess up of introducing a ridiculous definition of ‘satisfactory control of diabetes’ in the current Assessing Fitness to Drive guidelines. The revised guidelines are up for public consultation at the moment and I am thrilled to see that the 9% A1c measure has been removed. These advocacy efforts undertaken by a number of Diabetes Australia staff – myself included – will be of significant benefit to people with diabetes holding a driver’s licence. Blog post to come soon.)

Advocacy doesn’t have to hit you over the head. It doesn’t need to be angry and aggressive. It is great when it is innovative and challenging. And it is okay if it makes you feel uncomfortable. In fact, sometimes we want things to be confronting and a little prickly as that can be a catalyst for people start to think and act.

So, a couple of things I thought I’d mention that tick a lot of advocacy boxes.

Today, Kelly Kunik launched the I Wish People Knew That Diabetes website following a hugely successful awareness-raising campaign back in April this year. Go have a look at the site and explore what she has to say.

Festival21 is being held in Melbourne on Friday 11 December. Sandro Demaio’s advocacy efforts are significant for many reasons, one of which is just how innovative and ground-breaking they are. The aim of this initiative is to address some of our most considerable social challenges, including sustainability, promoting healthy communities and climate change, with food as the central topic. To give you an idea of what Festiva21 has in store, this from Sandro in today’s online newspaper, Broadsheet, ‘We’re talking about empowering people to realise that the food on their plate is one of the most powerful tools they have for change. Food is a truly unifying factor across all schools of thought – politics, religion and race. Everyone loves food and everyone loves to eat.’

What it can do

November 24, 2015 in Family, Real life | 4 comments

On Sunday evening, I caught the last of the ABC miniseries ‘The Beautiful Lie’ – a modern day adaption of one of my favourite books, Tolstoy’s Anna Karenina. I didn’t love the series; in fact, I found it frustrating, and I distracted myself by reading excerpts from the book while watching the show.

But there, in the final episode, was a line that had me thinking. It came from Kitty, one of the characters who had lived with an eating disorder for much of her life. She had just given birth and was watching her beautiful baby boy and said to her partner: ‘You know, I spent so many years hating my body. All I could see was what it looked like and not what it could do.’

I wrote down her words quickly because they resonated so much. I too have spent a long time hating my body. As well as never being satisfied with how it looks, I focus on what it can’t do. I focus on the autoimmune mess that I’ve come to live with, and fertility issues and anything else that is wrong with it.

And in all that – in all the complaints and revulsion, I forget to acknowledge what it can do; what it has done.

When I complain about my faulty, broken body, or grumble about how I don’t like the way I look in a certain outfit, I am forgetting the good things it can do and that’s kind of disrespectful. Because it has done lots.

Today, our beautiful baby girl is eleven. I need to stop blinking, because each time I do, I look up and she is another year older and another ten centimetres taller. She is such a great kid and we are so utterly proud of her.

And my body conceived her and grew her and nourished her. And once she was delivered, it fed her, and it managed, through the lack of sleep and complete and utter new-baby fog, to look after her and keep her safe.

My body rolled around on the rug with her and together we rolled down grassy hills; it danced and we ran with scarves in our hippy creative dance classes at Mangala; it sat for hours on the floor of libraries and bookstores as we read; it chased her around playgrounds, pushed her on swings, caught her on slides; it climbed play equipment and trees; it’s answered a million ‘but why?’ questions; it walked for miles and miles and miles as we explored cities around the world.

And it has cuddled and hugged and kissed her beautiful little body, enveloping her in love.

Even with all the things that I complain about and the things that I hate – even with a health condition that sometimes needs immediate attention – my body has still done all those things. It doesn’t matter how it looks and it doesn’t matter about the things that it can’t do. I may not be able to make my own insulin, but I can act as a pretend pancreas pretty well and do a hell of a lot of other things too. It may not have given me as many children as I would have liked; but it did give me one wonderful little girl. And that is enough. So very, very much enough.

Birth day. So loved.

A November kind of exhaustion

November 23, 2015 in Health, Real life | 2 comments

Last week, my body said ‘Stop’. Not in a friendly, ‘Hey, let’s sit down for a minute and maybe close our eyes and have a little nap’ way. No. This was a ‘You, you’re done. No more.’

There was no negotiating. No cajoling. My body just refused to body.

On Monday and Tuesday last week, I came into work and was back home by midday. (Staying home all day, both days would have been smarter.) My head felt like it was full of paraffin wax and I could barely concentrate. I had to stop on the landing halfway up the stairs up to my office to catch my breath. And when I finally made it to the top, I felt as though I had run a marathon. I dosed up on cold and flu meds to help with the low-grade fever and achy muscles. I felt pathetic. And frustrated and annoyed. And grumpy.

My BGLs were all over the place – high mostly, with the occasional crashing low after I rage-bolused because I was sick of the week being brought to me by the number 15.

On top of it all, I was trying to work with the kidlet to plan her birthday party which was last Saturday. In a moment of weakness (she knows how to pick it!) we agreed to a sleepover party and sent out invitations inviting the little munchkins to head over on Saturday afternoon and settle in for the night. And then, after sending out the invitations, did nothing until the day before the party. We started planning at 5.30 on Friday evening, exactly 24 hours before a drove of excited tweens would be descending on our house.

This is November exhaustion. It happens every year and every year I forget about it until I am in the middle of it. Most years, my body throws a tanty similar to the one it threw last week. Inevitably, there is a day or two where I just have to stop, take stock and recover. And more than that, I need to refocus on the health choices I am making and try to make better ones.

Because when I started to feel exhausted and poorly, I stopped making sensible diabetes decisions. Not enough BGL checks to really know what they hell was going on with the mild infection my body was trying to fight off; too lazy to reconnect a sensor after I ripped one out squeezing into my dress for the Research Australia Awards Dinner on Wednesday night; lousy food choices because I just wanted to grab whatever was easy and nearby, rather than planning and cooking foods that would nourish me while I was feeling below par; and not spending every spare minute asleep or resting, instead trying to catch up on all the things that had slipped while we were in the midst of World Diabetes Day festivities.

The thing is that what I perceive to be the easy way out ends up meaning that it takes longer for me to feel better. So, a week later, I am still feeling significantly worse than 100%.

This morning, I took stock. I am getting on a plane to Vancouver next Saturday for a very busy week of the World Diabetes Congress and realised that I really need to be better by then. I set alarms for regular BGL checks, I’ll put in a new sensor tonight when I get home and I’ve planned meals for the week. I hate that it takes a downward slide before I am jolted into doing what is best for me. But it just goes to show – yet again – that when the going gets tough, my health is the first thing to take a backseat. Until it can’t any longer.

Why you want me as your friend

November 20, 2015 in Real life | Leave a comment

I am a truly wonderful friend. You really want me around because I never make you do things that will in any way cause your body pain. With me, it’s all about sitting back, relaxing and being around food and drink.

The value of my friendship was once again proven last night when I was chatting with one of my nearest and dearest friends, Kath. We’ve known each other for nearly thirty years; we have a shared history of six years of Catholic school that bonds us in ways that only those taught by nuns will understand; we have lived through (and come out the other end of) bad haircuts and school formal dresses of the early 1990s.

Over the past few months Kath has had some issues with her hip and has had to see a few different health professionals to sort things out. Now, I always considered ‘hip problems’ to be in the same category as ‘cataracts’– things that happen to people waaaaaay older than us. But my eyes sport brand-new-non-cloudy lenses, and her hip causes her pain, so perhaps I need to reconsider my thinking. Or admit that we are not the same pre-teens we were when we met.

Anyway, Kath was telling me about the latest in her hip saga – and the good news is that she doesn’t need surgery as previously thought. We celebrated with Pimms!

The cause of her hip pain is, of course, exercise. Kath is a runner and plays golf and rows and does other things that make me twitch internally and ~~run~~ stroll screaming to a patisserie. She catches up with friends (who are not me) for a run around a park or a swim or some sort of non-sitting-in-a-café activity. She is super fit and I suppose that is admirable. And I expect her cardiovascular health is excellent. So, perhaps there are some benefits to this exercise thing she has going. Except, of course, she has a very sore hip.

‘See,’ I said to her. ‘This is why you need me as a friend. Nothing I do with you makes you hurt. Nothing I do aggravates your hip injury. In fact, nothing we do together has caused your hip injury. All we do is drink coffee, eat doughnuts, drink Pimms and have dinner at Marios. All of these are positive things. The Pimms probably numbs the pain, so really, our friendship CURES your problems.’

And then I remembered something.

‘Oh! When we did try to do something healthy, it ended badly. You had to call an ambulance and I was unconscious. And I am still worried that the incident has traumatised you for life. No good comes from exercising.’ I was referring to the short-lived thing we did, where we walked around Princes Park a few nights a week. Which was fun until a hypo knocked me out (and possibly made Kath question whether our friendship was worth the drama). After that, we went back to exercising our right to drink as much coffee as we wanted. And that was pretty much it.

See? This is why you want me around. I can’t promise to make you get fit. I can’t promise to help you beat your personal best in a half-marathon. But I can promise marathon chatting sessions and justifying anytime you want to eat a doughnut. That’s just the kind of friend I am. (And here’s some Randy Newman.)

Kath and Renz

Research

November 19, 2015 in Awareness, Research | Leave a comment

Last night, I was lucky enough to attend the 2015 Research Australia Awards Dinner and celebrate the best in Australian health and medical research, and advocacy

The reason I was there was to tweet. Actually, that’s not the truth, but I thought I should mention it considering that both emcee, (ABC’s national health reporter) Sophie Scott, and Diabetes Australia CEO, Greg Johnson made particular reference to it when addressing the audience.

The real reason I was there was because Diabetes Australia was awarding its annual Outstanding Award for Diabetes Research.

This year’s winner of the award is the inimitable Professor Peter Colman from the Royal Melbourne Hospital.

I could spend words and words and words explaining why Peter is a worthy recipient (read here for just some of his wonderful work). Anyone who knows him – or knows of him – would understand why he was a most deserved winner. His acceptance speech was, as expected, humble and appreciative. And he offered an insightful perspective of diabetes research.

The other highlight for me was the Advocacy award which this year went to brother and sister team Connie and Samuel Johnson who are responsible for Love Your Sister. Connie is living with terminal breast cancer and together with her brother has been raising awareness about the importance of young women being ‘breast aware’ and raising money for breast cancer research at the Garvan Institute.

Connie gave an impassioned speech about why medical research is critical to cancer. She implored that we need to stop the misconception that thinking positive cures cancer. ‘The real fact of the matter is that medicine cures cancer,’ she said. ‘Not postive thinking; not prayers.’

Obviously, Connie was speaking to a room full of researches; she was preaching to the converted. But she is absolutely right. Advances in medicine and improved outcomes – whether in cancer, diabetes or other health conditions – are due to research. They are not due to people being optimistic and cheerful.

I like to think that I am a very positive person, but no amount of positive thinking is going to beat my BGLs into submission or frighten my beta cells back into action.

That doesn’t mean that I am throwing myself a pity party, and I certainly don’t think that is what Connie was suggesting. For me the balance is this: feeling positive or having a positive attitude is all good and well, and it probably does make the day-to-day acceptance of living with diabetes easier. But it is the insulin, the devices and the tools I use that actually treat my condition.

We need more money going into medical research. We need to reward our medical researchers for their work and commitment and dedication. I was honoured to be in a room full of these incredible people last night and so glad that I got to personally thank and congratulate one of my diabetes research heroes.

(All this reminded me of this e-card which is cheeky, but makes me laugh every time I see it!)

Wordless Wednesday

November 18, 2015 in Diabetes, DOC | 1 comment

This. On a t-shirt. (With thanks to my lovely friend, Grainne.)

World Diabetes Day

November 16, 2015 in Advocacy, World Diabetes Day | Leave a comment

I frequently say that diabetes takes a back seat to other things in my life. Often, they are gorgeous and pleasurable and fun things – like birthdays and holidays and hanging-out-with-the-people-I-love-days.

Other times it’s because I am too busy and running around, life, work and everything else means that diabetes gets attended to when and where I can manage it.

And, of course, other times it is because I just can’t – my headspace will barely allow it.

But with World Diabetes Day, we are pretty much guaranteed that diabetes – our own and on a larger scale – will be attended to. There will be focus, there will be fuss, there will be attention.

Not this year. This year, for terrible and horrible and heartbreaking reasons, diabetes took a back seat. Because it had to. My heart bleeds, not only for Paris – a city that means so much to me and my family, a city Aaron and I visited only last month, a city where we have spent some of our happiest days – but also for the world where this happens all too regularly.

I have no more words about World Diabetes Day this year. Other than to say, it is over and felt that way, almost before it started.