Diabetogenic

Diabetes Australia is in the running to receive funding from the EFTPOS giveback. Each year, EFTPOS provides funding to charities working with Australian communities.

Can you take a few moments to vote for Disease Prevention, Management and Medical Research, nominating ‘Diabetes Australia’ as your charity of choice?

Voting is easy!

Go to the EFTPOS Giveback site here, and follow the instructions. You can vote by either using your Facebook login or entering your email. All up, it will take three minutes. Remember to vote for Disease Prevention, Management and Medical Research. Don’t forget to write ‘Diabetes Australia’ in the text box.

And once you’ve voted, send the link to everyone you have ever met with the above instructions. It’s good karma folks and will held Diabetes Australia develop an exciting new online platform to help people better manage diabetes.

Disclaimer

I am employed by Diabetes Australia – Vic and also have a National Program Leader position with Diabetes Australia.

I missed No D Day (it was yesterday) so am playing catch up today. It’s a great initiative to get us thinking and writing about things other than diabetes. I hope Ninjabetic doesn’t mind me being a day late.

I’m back in Barcelona, a city I could quite easily call home for no other reason than the sangria. There is a gorgeous relaxed charm here, which I’m sure I see and feel because I am a tourist on holidays with few worries other than where to stop for my next sangria.

Tonight, after a meal of tapas (oh, and sangria) in a tiny bar we headed to the Santa Anna church to hear a classical guitar concert. It was a performance by husband and wife duo Joan Benejam and Ksenia Axelroyd who call themselves Barcelona Duo de Guitarra. The setting couldn’t have been more perfect – a corner cloister with a vaulted ceiling, lit only by candlelight.

It’s been a long time since I performed as a musician, but I still remember the exposure and vulnerability I’d feel when standing up in front of an audience to play. As the couple played this evening, there was an intimacy between them that was at times almost difficult to watch. They would search each other’s faces for cues, a small smile appearing on their faces. A couple of times their eyes met and they gave each other a secret look.

Their interaction was perfect. Sometimes Ksenia led the way, with Joan in a supporting role; other times it was he who had the melody, her harmony providing the background that allowed him to shine. They negotiated, took turns and looked to each other to make sure they were heading in the same direction. And at the end of each piece, they stood and together took a bow.

Their encore was a four handed guitar performance where they were both playing the same guitar. Their hands and fingers danced across the guitar strings and fingerboard, never getting in the other’s way. They finished and stood up, holding hands while the audience cheered our appreciation.

We spoke with them at the end of the concert, asking them to sign copies of the CDs we bought. We asked about their guitars and Ksenia made a joking comment about how many guitars Joan had. ‘Oh, I can relate to that!’ I said and we both laughed. I wanted to ask her how they managed to work and live together – what happened on stage if they’d had an argument about whose turn it was to take out the garbage? And I wanted to know what those secret looks meant – was it anything more than ‘Hey, we’re sounding great tonight’? But I didn’t.

We thanked them again and said good-bye and walked out of the church’s courtyard, back into the throng of Barcelona at night, the beautiful music still in our heads.

Husband and wife team – Barcelona Due de Guitarra performing in St Anna’s Church.

Spices in the souks.

If you ever want to do some people watching or get an idea about how efficiently a country runs, go to the post office. In Italy, it took Aaron a chaotic hour of being shuffled from window to window to buy stamps to send postcards back home; in Vienna everything is clearly sign-posted and people stand quietly in straight lines waiting their turn.

Today we’re in Marrakech and we’ve been standing in line now for 90 minutes to organise postage back home of an oud (homework: what’s an oud?) purchased in the Souks from a shop endearingly named ‘Bob Magic Music’.

Magic carpets in every possible colour. I wanted one of each, but managed to select two to bring home.

We were told to get to the post office in the morning to avoid queues. I’m not sure what the queues are like during peak periods, but right now it’s crazy. There are makeshift lines, but no one seems too concerned about remaining in one queue. I believe there are five people working behind the counter at the moment, but their commitment to any one queue is also pretty ad hoc. I’m sure that by the end of the day everyone gets what they need, but right now, it looks incredibly disorganised.

So, I’ve had plenty of time to people watch and standing here waiting I’ve wondered, not for the first time, about diabetes in Morocco.

Beautiful views around each bend on our tour of the Atlas Mountains.

Yesterday, we were in the Atlas mountains, eating lunch on the terrace of the house owned by the local imam. At the end of the meal, as we were served mint tea we were asked ‘Sugar okay?’ Aaron and I both nodded. ‘It’s because of diabetes that I ask,’ our tour guide explained. ‘Is there a lot of diabetes here?’ I asked, thinking of all the kids we’d seen playing out on the roads. And I thought of the examples of manual labour that were apparent everywhere here – men dragging carts full of vegetables; woman crouching by water holes washing clothes, goats being herded by old men. There didn’t seem too many opportunities for sitting back and doing nothing.

Our guide mentioned it was becoming a problem in the city, but up in the mountains where most families are self-sufficient and electricity is relatively new in some villages there is limited diabetes.

Last night, back in bustling Marrakech I became aware of the Coca-Cola signs everywhere – in the souks, out in the Jamaa el-Fnaa square, down the tiny alleyways.

I wonder how many people standing in the post office are living with diabetes and how they navigate their healthcare system. I wonder if we share stories of burnout and frustrations at numbers that don’t make sense. I bet we do. Afterall, diabetes is a universal language. 

Down a narrow laneway in the Gothic Quarter of Barcelona is a shoe shop. Obviously, this was on my must-visit list whilst in the city. So with a spare couple of hours after a morning of meetings at the EASD conference, we set off to find it.

After wandering down winding alleyways, making pitstops for tapas and sangria, we found what we were looking for. The shop is tiny with racks of shoes lining the walls. Handbags swing from rails and there are shoes, shoes, shoes everywhere.

The catch is that they only come in one style. Every shoe is a beautifully constructed ballet slipper. But they come in each and every colour and colour combination you can imagine. The shelves look like rainbows with literally thousands of versions of the shoes in a variety of textures, materials and colours. They came in bright and muted colours, glittery, quilted, pony skin, two tone and polka dots.

One shoe; endless colours. As I stood in the middle of this gorgeous jewel of a store in Barcelona, I knew I’d found the perfect analogy.

We may all have a condition called diabetes, but each and every one of us has it in our own special way. While saying ‘I have diabetes’ connects me to a community made up of people from all over the world, my particular brand of diabetes is different to that of everyone else.

I left the store with a couple of pairs of shoes and a handbag. I walked away but turned to catch one last look. And then I realised. I could have bought dozens of different pairs. I loved them all. I wanted them all. They were beautiful, fun, whimsical. Unlike my diabetes.

For the record – if my diabetes was a pair of these shoes, it would be the bright pink glittery pair I didn’t buy, but couldn’t tear my eyes away from.

I’m in Barcelona for the 2nd Animas European Bloggers Summit. Diabetes bloggers from Italy, the UK, Germany and Norway as well as throw ins from the US and Australia have come together to talk about how we use our blogs to communicate with the diabetes online community.

Being surrounded by such an amazing crew of folks with diabetes is energising. Hearing about how we reach people, why we write and the value of peer support reinforces (yet again) the strength of this community.

Disclaimer
The Animas European Bloggers Summit is an initiative of Johnson & Johnson. J&J funded my travel and accommodation so I could attend the Summit as well as my registration to the EASD conference. There was no expectation from J&J that I would write about my attendance. But I will be because I’m a sharer!

Over the last three years, I’ve done quite a bit of travel. A lot of it has been for fun, but much has been for work. Fortunately, a lot of the work stuff has coincided with school holidays, which has meant the family has travelled with me. It’s always lovely being able to add some family time at the end of conference time! But some of the travel has been on my own.

Just over two years ago when I went to Dubai for the IDF World Diabetes Congress, I didn’t even think twice about going alone. Of course there would be people I knew at the conference, but I was travelling solo. This was not a new thing for me: frequent interstate overnight trips for various meetings and conferences are all done solo.

New York State of Mind.

In all honesty, this works really well for our family. There is no need to think about childcare and babysitting because Aaron is home with our daughter for the few days that I’m away. Even the two-day trip to Perth in October last year that involved a 5.30am flight out and a midnight flight back in wasn’t a problem when it came to kiddo arrangements, although the nightly Skype catch-ups were a nightmare with the time-zone changes!

Really, the biggest challenge for me when it comes to overnight travel used to be missing the family. Until recently, that is.

This year, I’ve had some hypos that have been pretty scary: a couple of white outs and another that resulted in paramedics being called (which I will write about soon). And these have made me a little nervous about being away overnight alone.  I presented at a conference in Paris in June and headed there to do that before joining my family for the rest of our break. That was the first time that I was concerned about being on my own while away.

I put in place a few things to make me (and the family I was leaving back home) a little happier. Fortunately, a wonderful friend was presenting at the same conference and staying at the same hotel. We had adjoining rooms and she kept an eye out for me. I did extra BGL checks and set a slightly higher BGL target for before bed and overnight.

Later this week I’m going to EASD in Barcelona, specifically to attend a summit for diabetes bloggers. When discussions about this started a couple of months ago, I was reluctant to commit until I knew that I wouldn’t be travelling alone.

I know that it is not reasonable for me to expect that I can be chaperoned every time I need to be away overnight and I am working on strategies to feel safe and secure when travelling alone.  Diabetes is a pain in the arse a lot of the time, but I am usually pretty good at just accepting it and getting on with things. But when there is fear and uncertainty, I absolutely hate and resent living with this condition. Feeling scared about something that ‘might’ happen frustrates me; it sends my imagination into overdrive as ‘what if’ scenarios play out in my mind.

Regardless, the travel bug has a much stronger hold on me than the hypo bug. So, I’ll keep planning and travelling and attending conferences. It’s part of my job and a passion as well. And that is reason enough to keep doing it.

Today is R U OK Day. You can read all about it here and read Michael Goldman’s first post for the Diabetes Australia – Vic blog and his take on this important day.

I love this initiative because it gets us thinking about how people are feeling and gets us talking about mental health. There is still so much stigma associated with mental health issues. And add diabetes to the mix and its associated stigma and you have a double whammy.

I also love it because it’s not only about today. This may be the ‘flagship’ day, but the real aim of the R U OK Foundation is to remind people that checking in with our loved ones on a regular basis is a good thing to do. And I can’t emphasise enough how important it is to check in on loved ones with diabetes.

Diabetes is known as an ‘invisible illness’ and I can’t think of a better way to describe the everyday life with this condition. There is no outwardly obvious sign that I have diabetes. Unless you see me pull out my pump or check my BGL you wouldn’t know that I have a condition that requires regular monitoring and medicating.

If you look at me today, I seem pretty okay. I’m up and dressed and am wearing my regular red lippy. Thanks to a couple of coffees, I can string two words together. I look okay. And in all honesty, that’s how I am most days. But sometimes what you see doesn’t tell the whole story.

So often, when we hear about diabetes, we hear about the extremes. Whether we’re talking about complications or the horrific hypos it’s the extreme. But my life with diabetes isn’t actually about the extremes. Yes, I may have some minor retinopathy. Yes, I had a hypo a few months ago that resulted in me needing paramedics. Yes, all these things are scary. But people SEE these things; they know about them. And when people see things, they ask the question: ‘are you okay?’

Diabetes isn’t necessarily about the things you see. It’s about the everyday.

How many of us have heard at some time or another ‘Oh, I know someone with diabetes. It hasn’t stopped them doing anything?’ It’s great that may be the case. I am pretty sure that people I know say that about me ‘My friend Renza has diabetes. She’s fine – she works, has a kid, travels heaps, has a great boot collection, spends hours in cafes, bakes all the time etc.’ And all these things are completely true.

But there are days that even though I look fine, I’m not okay. The hypo I had at 2am means that I didn’t get back to sleep and I’m exhausted. And I lay awake stressing about my next ophthalmologist appointment and the terror of the inevitable cataract surgery looms in my mind.  Or, as I sit at my desk, I suddenly realise that I’ve been mainlining water all day so I check my BGL and it’s 22.5 and I have no idea why or the capacity to troubleshoot to try and find the reason. Or I’m just. Over. It.

And yet I look okay.

If you have a look at the resources on the R U OK site, there are great suggestions for starting conversations and the things to ask and look out for. I know it’s not easy. We’re afraid of what people will say or that we won’t know how to respond. We’re scared that the response to the question won’t be ‘Yep – all good’. We’re scared that we won’t be able to fix the problem.

But it’s not about offering solutions. Opening up lines of communication and giving others permission to really say how they are feeling is the aim of RUOK Day. For me, if things aren’t okay and I communicate that to you when you ask me how I am going, I don’t want you to fix it; I don’t want solutions. I just want someone to listen to me.

Ask the question. And ask again. Tomorrow, or next week or next month. Ask the question. Are you okay?