Diabetogenic

You can read all about the Youth Transition Survey Report (what it is, who it’s about, why it’s important) at the Diabetes Australia – Vic blog.

It’s where I recognise that I am not a young adult with diabetes. Or without. And use the word ‘whatevs’. Which in my word-nerd way makes me shudder! (It could have been worse. I could have used ‘totes’…instead of totally, not when describing a bag. Oh, whatevs!).

Last night, I attended the AGM at my daughter’s primary school. The guest speaker was Anne E Stewart, who is a storyteller; not a writer, but a storyteller in the true sense. She told us a couple of stories – the first a challenging, but thought-provoking story about a young Aboriginal woman, and a Scottish Selkie tale. She was incredibly engaging – I was on the edge of my seat as her stories took twists and turns.

But the most powerful part of the evening was when she went around the room asking people to share their own stories; where their family comes from and asking about family folklore. Out came stories of convict histories, migration from far and wider, and memories of growing up in Australia.

The story I told was about my father’s family moving to Australia. My great-grandfather, Luigi, sailed from Calabria in Italy to Australia in 1927 leaving behind my great-grandmother, Catarina, and their children. Catarina was pregnant at the time with their fifth child. The plan was for my Luigi to work and save enough money to bring his family out to the lucky country.

It took 20 years. In 1947, Luigi’s youngest son was one of the first people to fly from Italy to Australia. It took 13 days and when he arrived he met his father for the first time. Over the next two years, the rest of the family arrived slowly.

In 1949, Catarina boarded a ship with her other now-grown children, one of which was my grandmother, Vincenza. Vincenza was married and had two young children with her; an eight year old daughter and a five year old son – my dad.

Reunited – the family was together once again.

The tragedy in this story – the part that breaks my heart – is that four years later, Catarina died.  The family was all together for only four years.

Our stories shape us, they tell where we’ve come from and where we’re going. They make us feel connected to others; they help us feel like we belong.

I struggled a long time about my family background. As I was growing up, I hated having an odd name, hated having olive skin and dark eyes. I remember quite clearly at the age of seven telling my mother I wished I had blonde hair, blue eyes and was called Cindy. I wanted to distance myself from my history; I was pleased that we didn’t speak Italian at home and that most of our friends were not Italian. Assimilation? That’s what I wanted!

It wasn’t until I visited Italy as an adult that I started to understand why I needed to reclaim this history.  And it wasn’t until I took my daughter to Italy – then four years old – that I understood the way that my grandmothers were with me. I stood in a little street in Venice choking back tears as an old woman showered my daughter with the same terms of endearment that my late grandmothers had used with me, my cousins and my daughter. I felt I belonged.

I feel this same connection with people in the diabetes community. The people I met when I started working in diabetes who continue to be some of my closest friends and those who I continue to meet give me strength. And the wonderful people I have met online and in person from the diabetes online community – their stories and my stories have become intertwined and show us as a strong, powerful voice. They make me feel safe.

I love the stories of others in this community. I’ve stopped feeling startled when I hear a story that is so similar to mine; I’ve started to understand how diabetes ties us together in a mysterious way. Diabetes Blog Week was so terrific because so many more stories were put out there. If you haven’t yet, I really urge you to have a read. Make the connections; read the stories; and please, share your own.

I walked out the front door this morning and stopped.  I felt naked. A quick glance southwards assured me I wasn’t. (Result!) But I couldn’t shake the feeling. So I put down my bag and did the pat-down. The pat-down starts at my hips (nothing found), goes to my lower back (nothing found) and then across the middle of my chest (nothing found). That’s a problem – no pump!  I opened the front door, ran down the corridor, turned off the alarm, and headed into the bathroom where my pump was sitting quietly on the bathroom counter having not been reattached after my shower.

Hooked up again, I turned on the alarm, walked down the corridor, locked the front door and started to walk to my car. And stopped. I still felt naked. Pump attached, CGM all secured. What else? I opened my bag and rummaged through the mess pulling out my phone, my iPad, my wallet, business card holder, pens, mints, loose pieces of paper, loose change, a toy unicorn (no idea, really, but it pleased me greatly!), a notebook and several small packets of jelly beans. Looking….looking……looking. And there it was, at the bottom of my bag, my meter case.

I walked to the car, but couldn’t shake the feeling that something wasn’t right and that I’d forgotten something. What could it be?

I grabbed my meter case out of my bag and peeked inside. All good – meter, lancet and strips. OK. Surely I was good to go now. Key in the ignition, car started. And I stopped. Where was my ‘spares’ bag? (That’s my little bag that holds a spare pump line, cannula and syringe as well as a vial of insulin for those days I ignore the ‘Low Reservoir’ warnings on my pump.) More rummaging through my (totally GIANT, Mary Poppins-esque) bag until I located it.

Satisfied that I had all my dia-gear, I started the car and headed to work, ignoring the unsettled feeling in the pit of my stomach that I’d forgotten something.

This is the thing with diabetes. There is so much stuff. Why, oh why hasn’t someone tried to tie all this together? I’m more than a little excited at the new (not yet available in Australia) meter that attaches itself to a fruit phone. For years I’ve been dreaming of a phone/meter combination. And if someone could work out a way to tie a few other things together, I’d be thrilled!

So, now it’s 2.13 and I’m just back from lunch. And I just opened my bag looking for lipstick to apply. I turned my bag upside down looking for my bright red lippy, cursing MAC for packaging their products in boring, sleek black. No luck! That’s what has been missing all day. Not diabetes stuff (although, the pump wasn’t connected this morning, so there’s that), it’s the lippy. I’ve said it before; I’ll say it again. Sometimes it’s not diabetes.

Dear Lovely People at MAC. Could you please make your lipstick case match the bright red colour of my favourite lipstick so I can find it in my bag. When I actually remember to put it in there. Thankyouverymuch, Renza

I’ve spent the morning at a health professional symposium (#HPSymposium) coordinated by two diabetes organisations in Victoria.  The event brought together about 200 health care professionals interested in hearing from some outstanding speakers, including three speakers from the ACBRD.

To have people speaking about diabetes emotional wellbeing front and centre at a health professional conference is a breath of fresh air. And to have three inspirational speakers talking about the importance of measuring emotional wellbeing and providing strategies for interventions gives me hope.

Why? Because finally we’re talking about diabetes in more than just clinical or biomedical ways. We’re acknowledging the ‘living with it’ aspects and asking (demanding?) that these issues are considered.

How do we explain life with diabetes? How do we adequately explain it’s about more than numbers, monitoring, medication, food, attending doctors’ appointments?

We can try to represent this by adding up the number of injections, or BGL checks or pump line changes we do in a week, a year, a lifetime; but does that mean anything to anyone who hasn’t injected themselves daily, checked their BGL or stabbed themselves with an introducer needle to get a pump line in? (A stat from one of  today’s presentations – on average, a person with type 1 diabetes for 40 years will have had 3,500 hypos.)

I am supported by the most incredible family, friends and work colleagues, but do they really understand what living with diabetes means? And is it fair for me to expect them to? The way they show me their love, understanding and unconditional acceptance is perhaps their way. And that is more than enough for me most of the time.

What do I want people to know? It’s simply this: my diabetes is exhausting. But I am living a life of which I am proud. If you need to find a way to measure me – please look at the people in my life, the things I’ve achieved, the places I’ve been and the places I’ll be going. Please don’t look at numbers. They tell you nothing.

This is my Friday entry into this year’s Diabetes Blog Week. For information, click here. And I really recommend you do. Over 200 diabetes bloggers from all over the world are participating and it’s a great way to see what others with diabetes are talking about. Come back tomorrow for Saturday’s entry.

We don’t pat ourselves on the back enough when it comes to diabetes. There’s lots of ‘I should be doing this more’ and ‘I need to do that more’. But not much, ‘Hey! Well done, me!’ or acknowledging that ‘that’ll do’ is actually, ‘that’s brilliant!’

So, today, I’m thinking about what it is that I am most proud when it comes to diabetes.  And I realise that it’s not really the management stuff that makes me puff up with pride. It’s the advocacy stuff.

Perhaps I’m feeling this way after yesterday. It was an important day for diabetes in Australia with the launch of the results from the Diabetes MILES – Australia* study. I was lucky enough to be invited to Sydney to take part in the launch, speaking as a participant in the study.

The launch was held in a diabetes clinic at a Sydney hospital. There was hope that the Minister from the Department of Health and Ageing would be there and the thinking was that launching this report in the ‘real world’ would make it all the more meaningful.

We walked into the clinic and the first thing that drew my attention was a huge poster on the wall about foot care. And there across the top of the poster were graphic photos of feet missing toes, with gangrene and in other states of disrepair. Instinctively, I looked away. And wanted to vomit. Then I got angry.

This is the room that people with diabetes waiting to see a doctor sit – possibly for hours until their name is called. There’s not much else to look at.

My speech was short – only three minutes or so – and really was all about my excitement about MILES and the importance of this research. But, as I stood up to talk, I realised that I couldn’t let the opportunity pass and not mention the horrific images on the wall and how inappropriate they are in this setting.

After the official launch, we had a lovely morning tea. I was chatting to the Director of the Australian Centre for Behavioural Research in Diabetes when a woman from the clinic came up to us. ‘You don’t like our posters?’ She asked me. I was surprised that this is what she wanted to discuss the day that we were launching such an important piece of diabetes research. ‘No. Not at all.’ I said. I wasn’t rude; I was just backing what I’d said earlier. I went on to explain how I felt that scare tactics don’t work, that people with diabetes are aware of our risks of complications and that being hit over the head with graphic images does nothing for us.

‘Oh, that may be the case for some people – particularly people with type 1 diabetes – but people with type 2 diabetes who are not looking after themselves need reminders.’ I gulped back my response (I actually do try to keep myself nice!) and repeated that I really don’t think that scare tactics work for anyone and suggested that they only encourage people to bury their heads in the sand.  

It’s not the first time that I’ve found myself in an argument with a health professional about this issue. And it certainly won’t be the last.  We need to stand up and say when things are not helping us, and I’m fully aware that not everyone has the ability or the desire to do that. But if I see an opportunity, I will always take it. And I’m pretty proud of myself for doing that!

What’s Diabetes MILES – Australia? I’m glad you asked! MILES stands for Management and Impact for Long-term Empowerment and Success and it’s Australia’s first study to assess the psychological AND physical health of people with Australia. The study was conducted by the  Australian Centre for Behavioural Research in Diabetes. You can read the full study report here and you can read my blog post about it on the Diabetes Australia – Vic blog here.

This is my Tuesday entry into this year’s Diabetes Blog Week. For information, click here. And I really recommend you do. Around 150 diabetes bloggers from all over the world are participating and it’s a great way to see what others with diabetes are talking about. Come back tomorrow for Wednesday’s entry.