Diabetogenic

Living well with diabetes. That’s how I like people to think of me. And how I like to think of myself.

But there are occasions – rarely, although sometimes more frequent – where I do feel living with a life-long health condition that is there every minute of every day start to creep over me and a sense of dread and worry plant themselves at the back of my mind. For me, this is part of diabetes burnout. It’s a feeling of being overwhelmed by what diabetes is right now but even more, what diabetes could be in the future. How will my faulty pancreas and my autoimmune problems play out in my life?

And is there any point worrying? At the moment, things seem to be tracking along well. Annual complications screenings tell me that I am doing okay and I’ve read some research that shows people with diabetes are living longer and longer.

So why the dread and anxiety and is there any point? And even more, is it possible to change the way that we think about diabetes?

When I was first diagnosed, the smell of insulin would fill me with dismay. The very scent would remind me of the horrid, scary photos the doctor showed me within the hours of being told I have type 1 diabetes. An invisible force would reshape me from the vibrant 24-year-old I was at the time to a withdrawn, sick, shell of the person I really was. For months I felt this way and every time I gave myself a shot, it was like I was slowly drowning.

But that all changed one day. I drew up two units to squirt through the air before jabbing myself and said ‘Urgh. I hate the smell of insulin. It’s everywhere – I feel like it’s what I smell of now.’ Aaron who was sitting next to me looked up and said simply and matter-of-factly, ‘I don’t hate it. It’s the smell that keeps you alive.’  

And just like that, the smell of insulin went from being a death sentence to life saving. It never bothered me again. Keeping the perspective of diabetes in its rightful place is not easy and there will always be times that we feel like it is heading in the wrong direction. We just need to find ways – and people – to say things to help us get back on track.

‘Supposing a tree fell down, Pooh, when we were underneath it?’
‘Supposing it didn’t,’ said Pooh.
After careful thought Piglet was comforted by this.

                                                                      A.A. Milne

It’s No D Day today. You can read all about it here, but basically, it’s a day where we don’t think, talk and write about diabetes. I love this idea because as a diabetes blogger who also works at a diabetes organisation, who also Iives with type 1 diabetes, who also spends a lot of time talking about diabetes in the social media (and ‘real’) world, I know how easy it is to become all comsumed by diabetes. But not today. Today it’s about Rome.

Jet lag is a bitch, but it does have its benefits. On our first full day in Rome we were out the door before 7am and watched the city wake up. Our apartment was a short stroll from the Spanish Steps. The afternoon before when we’d arrived, our driver had to battle his way throught the crowds to our tiny via. There were people everywhere – tourists with huge cameras, kids with gelati the size of their heads, locals pushing their way through the crowds and annoying men shoving roses into the faces of unsuspecting women and then demanding their partners hand over a few euro. It was chaos; it was loud; it is Italy and I love it.

But at first light, the area around the Spanish Steps was empty apart from a council worker hosing down the area, getting it ready for the onslaught. We saw a few nuns walking together, possibly on their way to an early morning service. The coffee bar owners were just starting to open their doors and set out the morning pastries.

We walked into the first open cafe we saw, stood at the bar and drank our perfect morning coffees and munched on crunchy cornetti filled with creamy custard.

Fuelled by caffeine and sugar, we walked. We started with the Trevi Fountain and were the only two people standing there. We snapped photos, read the signs and listened to the water flow. Together, we threw in coins – the legend promises we will now return to Rome.

We sat at the fountain, the spray from the water hitting our faces in the cool morning air. Slowly, other people started arriving, so we up and left and continued our walk. We wandered down little streets, stopped in different campi and watched as Rome woke up. We pointed out signs, statues and looked in closed shop windows.

And then, we turned a corner and before our eyes was the Colosseum.

It was after 9am by this time and the steets were starting to fill up again. The tables outside cafes were full. There was noise, laughter, talking.

I feel at home in Italy, which is ridiculous considering that I was born and raised in Australia by parents who moved here when they were tiny children. But it makes sense to me. The craziness of it and what looks like complete and utter disorganisation is actually ordered chaos. It works for the people who live there. Yes, it may take an hour to buy stamps at the post office (this did really happen – Aaron returned home to our apartment defeated, but at least our postcards home were mailed), and yes, it may take the woman at the gelati bar ten minutes to hand you your gelati because she’s talking to someone about her boyfriend and keeps walking away from the counter to tell her story, and yes, it is possible that you will get hit by a motorino scooting on the footpath.

But this is Italy. It’s beautiful. It’s crazy. It’s loud. And when I am there I feel my senses on fire and I am more alive than anywhere else. I just love being there. Love.

The Spanish Steps as Rome wakes up.

What do you do when you’ve left the CGM cover tape at home? Why, get creative with sticking plaster!

Today is Diabetes Art Day. You can read about Leanne Thill‘s brilliant initiative here, but generally, it’s a day to be creative and do something artistic. All in the name of diabetes awareness. I love people who think outside the square and try to get diabetes front and centre by doing something different and a little ‘out there’.

So, I decided to celebrate Diabetes Art Day by looking at some incredible art. I’m in Rome at the moment with my husband for a week’s holiday before heading to Berlin for the European Association for the Study if Diabetes conference. I couldn’t think of a better way to mark the day than to visit the Sistine Chapel.

This was my first visit and I don’t think I was prepared for the sensory overload as we meandered through the Vatican and made our way into the Sistine Chapel. We walked in, surrounded by dozens and dozens of other people. And then, as if all overcome by a sudden force, everyone raised their heads to the celling. It was breathtakingly beautiful.

No photos are allowed in the Sistine Chapel, but here is the most famous fresco there.

Looking at such beauty on a day dedicated to raising diabetes awareness has given me tingles. I may have trouble drawing a stick-figure, but I’ve still celebrated this day, and once again feel part of the diabetes community that I know will be coming together to recognise the day in their own way.

And thank you, diabetes, for a lovely low whilst in one of the Vatican galleries. Diabetes has a way of making sure you remember it’s there. Every day.

I presented at an event on Saturday for Diabetes Australia – Vic. The topic was Access All Areas and I talked about making sure that people knew about (and knew how to access) health professionals, the healthcare system, online information and peer support. I ended with a brief discussion about language and ‘owning’ our diabetes.

I am not a fan of PowerPoint. I think it takes away from the presentation and discussion, and directs all focus onto a screen, rather than allowing people to interact with the group. But I’ve learnt that audiences expect something – anything – on a screen, and think I’ve been lazy if I don’t have slides for them.

So, I did what I usually do – I found pictures, used few words and showed a couple of short videos. And I asked the audience a lot of questions!  (Hey – it was Saturday morning and I’d had barely enough coffee to wake up. There was no way I could do all the work myself.)

As I was putting together my brief PowerPoint, I searched for some ‘Keep Calm’ posters that had something to do with diabetes. Who knew there were so many!  So, here are some of my absolute favourites (click on the poster to be taken to where they were found).

A good one to start!

This one? I want it on a t-shirt!

Being a huge pump advocate, I love this one!

From the very clever Karen Graffeo at Bitter~Sweet Diabetes. (And I need this engraved on my pump as a reminder!)

Yes, you can. And so can I.

A love a good play one words. Thanks to Mike Durbin from My Diabetic Heart who created this one.

Wear blue on Fridays has become a great habit! This one Sue over at RFamHere’s Ramblings,

Just. Do. It

 

And finally, and perhaps my favourite…..

Happy place…..

You can make your own ‘Keep Calm’ poster by clicking here.

I feel like I’m drowning at the moment as I try to catch up after almost a week away at the Australia Diabetes Educators Association (ADEA) conference and prepare for two weeks away: R&R in Rome (love a bit of alliteration!) for a week followed by the European Association for the Study of Diabetes (EASD) conference in Berlin.

But I do want to mention some of the highlights (of which there were many) from the ADEA conference on the Gold Coast.

So, here’s the dot-point (read, lazy) special!

• It was refreshing, reassuring and may have made me yell out ‘FINALLY!’ several times to see some focus on diabetes wellbeing at this conference.
• The plenary speech on the first day was given by Dr. Martha Funnell, MS, RN, CDE from Michigan Diabetes Research & Training Center. Let me begin by saying she’s amazing. Let me continue by saying that I saw all four of her presentations about patient engagement, patient-centred care and communication. If every health professional there could take on three of her key points I reckon there would be some pretty happy PWD!

Here are some of my favourite Martha Funnell–focussed tweets:

• If there was an award for MVP, surely the Australian Centre for Behavioural Research in Diabetes (ACBRD) would have taken it out!  Ten posters, four presentations and their own symposium on the last day. And Professor Jane Speight gets extra points for including a Harry Potter reference in her presentation.

• Dr Helen Murphy from the University of Cambridge Metabolic Research Laboratories gave a fascinating presention at an Australian Diabetes in Pregnancy Society lecture which focussed on technology used in diabetes and pregnancy. How’s this for an amazing concept: three BGL tests for the WHOLE OF YOUR PREGNANCY! That’s what was going on in the 1970s.
• An incredible team from the Australian Diabetes Society (ADS) launched the  Enhancing Your Consulting Skills education resource for endocrinology trainees. This resource focusses on type 1 diabetes and will provide trainees with a balanced, informed and better understanding of type 1 diabetes. There’s much to love about this concept – not the least of which is that the project team consulted with people with diabetes. And have referenced consumer blogs (like this one!) and sites as places to get information.

OK – and now for the stuff that left me wondering….

• How is it possible that with over one million Australians living with diabetes, I was the only consumer representative/advocate (who is not a health professional) at the event, which means that this consumer blog is the only one writing about it?
• When will health professionals stop making sniggering comments about how people with diabetes ‘lie’, ‘make up’ or simply ‘refuse’ to fill in their diabetes log books? Surely the discussion is not so much about this happening, but rather why PWD feel they need to do this. Judgement much, anyone? Grumpy Renza tweet about it here:

• I love technology to bits!  And diabetes technology makes me swoon a little.  BUT! The downside is that using new technologies can be A LOT OF WORK!  And this can lead to burnout. This needs to be addressed. It’s not.

• I continue to find it frustrating and disappointing that consumers – people actually living with diabetes – generally don’t get to hear most of the international speakers. A big shout out to Medtronic ANZ for running consumer sessions with their international invited guest, Dr Steven Wittlin from the University of Rochester Medical Centre. And if there’s any doubt that people with diabetes are hungry for these types of sessions, perhaps knowing that 170 people braved the Melbourne cold to hear him speak at a DA-Vic/Medtronic co-hosted event will alleviate any concerns. It’s such a shame that Martha Funnell and Helen Murphy along with many others did not get to share their expertise with people living with diabetes.
• After Helen Murphy’s brilliant presentation, I got up to leave, my head filled with hope and excitement only to hear this from two health professionals walking out ‘Really – it would just be easier if we could lock pregnant women with diabetes in hospital for their pregnancy so we can make sure they’re behaving.’ Cue – Renza hyperventilating as she tried to not explode.

You can catch up on a brief wrap-up here;

And watch all of Jane Speight’s interview here:

Overall, it was a great conference with many highlights. But I think I’ll finish this post with another tweet from one of Martha Funnell’s session: