Earlier this afternoon I took part in the second Oz Diabetes Social Media Summit. Hosted by Ascensia Diabetes Care, #OzDSMS brought together a group of (highly privileged) diabetes bloggers in Sydney. It is always an honour for me to participate in discussions with this close knit group of people with diabetes who are all doing amazing things in their own communities. Renza’s comment around Aussies being the most considerate of the needs of people with diabetes outside of their own backyard really summed up it up for me.

As a relative newcomer to the market, Ascensia seem to be one of those companies who genuinely want to be a part of the diabetes community, and not just talking to the community. We were reaffirmed of their commitment with two additional summits being held in Europe and America following the inaugural (and best) Aussie summit held in Adelaide last year. I’ve also been really impressed at being kept in the loop on company comms from their head Joseph over the past 12 months.

There were some robust discussions around advocacy, and more specifically, representation in the diabetes community. While I’m not a big fan of the word ‘advocate,’ others in the room were happy to wear the term on their sleeve. Kim’s comment around advocating for the value of lived experience resonated with me the most.

I feel that there’s a big difference between being a personal advocate and a broader diabetes advocate. From my own personal experiences, I find it frustrating when people expect me to be the one to bring about change. Believe it or not, diabetes is not my job and there are plenty of other things that I hope to achieve in my life. It’s not one person’s job to bring about change. We need collaboration, and we can always do more to bring the voices of more people with diabetes to the table.

Special guest speaker Grumpy Pumper crashed our summit and spoke about challenges in being able to engage people to talk about diabetes complications. We were shown some new resources that have been developed in collaboration with Grumps for Ascensia’s social media channels. Bionic Wookiee David Burren (who was listening in over the phone) added an outstanding comment around why diabetes complications are called diabetes complications. Aren’t they simply health conditions that are exacerbated by diabetes?

We touched on backup plans, and it was pleasing to see a resource that’s in the works from Ascensia on the very subject. While I certainly carry everything around with me, the one thing I haven’t brought with me on my travels this time is long acting insulin. I know that a) AMSL Diabetes will be in the Exhibition Hall at the Diabetes Congress should my pump fail, and b) I’m surrounded by many friends with diabetes who’ll be able to hook me up should the worst happen.

The highlight of my day was hearing Greg Johnson, CEO of Diabetes Australia, talk about access and advocacy around diabetes technologies.

There is currently a hold up on getting the FreeStyle Libre added to the NDSS. The Department of Health and manufacturer, Abbott, are currently in price negotiations over the product. Health Minister Greg Hunt was advised on a fair price that the government should reimburse to Abbott for the product. The advice was provided by an independent committee, based on health economics. The ‘reimbursement’ that Abbott are seeking for the product is above this price.

I did flag recent news reports around comments by the Health Minister about Abbott not complying with the recommended safety, but I have been told that there are absolutely no safety issues with the product and it was likely a slip of the Health Minister’s tongue.

Professor Johnson is confident that an agreement will be reached soon, and that Flash will be added to the NDSS. Encouragingly, he expressed that there was enough funding available that could potentially see Libre made available to people beyond the current eligibility criteria for CGM. Watch this space.

How can people with diabetes work together with diabetes organisations to achieve shared goals? Professor Johnson pledged his support towards the power of people telling their stories in the many different ways that we do. He said that reviewing the discussions that were happening in the diabetes community were always a big factor when deciding on a course of action at Diabetes Australia. I did express my sentiments about the need for more ‘progress updates’ on policy work, so that it doesn’t just feel like that campaign that was running a few months ago has been forgotten about.

Check out #OzDSMS on Twitter for more Tweets from some of the other bloggers who participated in the day. I’d like to thank Ascensia Diabetes Care for extending hospitality once again, and to all of the people in the room who participated. I couldn’t wipe the smile off my face at the chance to get my own grumpy photo!

Disclosures: Ascensia Diabetes Care provided hospitality throughout the afternoon which included lunch, drinks and canapés. Diabetes Australia have covered my flights and three nights accommodation in Sydney to attend the Australasian Diabetes Congress this week. I have given up my own time to participate, and am sharing my own views as always.

What the Cannoli.

“I’ll have a Latte and a Ricotta Cannoli please.”

I didn’t even have to think twice about my order. A truly spectacular day had conveniently come to an end with a ferry cruise of Sydney Harbour in all of its night time glory, leaving me just metres away Rossini Cafe at Circular Quay.

Rossini, in my humble opinion, is home of the best Ricotta Cannoli I have ever eaten. To be completely honest, it’s one of the reasons why I so look forward to visiting Sydney. I think I’ve set myself a new record this time around, having been here for a whole 48 hours without a visit there.

My levels have been bouncing around since I arrived here, largely due to lots of spontaneous eating and not much of a game plan in regards to insulin. That’s what holidays are for, right? So, trying to muster up a better game plan than the past 48 hours, I bolused for 50 grams the minute I placed my order.

The Cannoli was brought to my table, and I began browsing through my photo library looking back on some spectacular memories from today as I waited for the coffee to arrive.

The coffee came, and I began to sip on it. I left my Cannoli on the plate, scooping up a little bit of the delicious Ricotta filling with a spoon while I continued to drink my coffee and peruse through my phone.

Excuse me sir, is there something wrong with the Cannoli?”

I turned around, kind of startled.

I assured the waitress standing behind me that there was definitely nothing wrong with the Cannoli. Looking at the empty coffee glass sitting next to the untouched plate of Cannoli, I can see how she had come to that conclusion.

But to me, however, it made perfect sense. I didn’t even have to think about what I had subconsciously done, leaving my Cannoli to one side until the pre-bolus had kicked in.

I would love to have told her exactly why I was waiting to eat my cannoli. But did she really need to know all of that? Probably not. Could I be bothered explaining all of that at the end of a long day? Definitely not.

I ate my Cannoli and paid my bill, feeling the pressure to leave.

Just another day in the life of diabetes, where the people around us are none the wiser.

Don’t Call Me ‘Advocate’

This blog has always, always, always been my own personal blog about my own life and thoughts about living with diabetes. To the people who’ve checked in here over the years, and who’ve identified with what I’ve had to say here, I’m truly humbled. If you haven’t, that’s more than okay too. How boring would the world be if we all agreed on everything?

I’ve done a lot of things in the time that I’ve been blogging here. Speaking, writing, travelling, networking, conferencing, committee-ing, advocating, passing on information to the wider community and continually adding to my amazing tribe of people with and connected to diabetes.

I absolutely love that diabetes has given me the opportunity to take a massive step outside of my comfort zone and do all of these things. I love that the DOC has connected me to people from all over the world, and given me the opportunity to take an interest in what’s important to other people outside of my eyes as a highly privileged person living in a country that affords me so many privileges.

While this role might seem ‘special’ or ‘important’ or ‘exciting’ or ‘privileged,’ I don’t really see it as anything more than being a person with diabetes. I’d probably be the first person in the room to make it abundantly clear that I do not represent any other person with diabetes. I have no interest in representing any other person with diabetes, nor could I possibly do so. The absolute last thing I am qualified to do is provide advice to other people with diabetes.

I hate the word ‘advocate,’ because it implies that I am advocating for all people with diabetes. Or that I am somehow better than another person with diabetes. While advocacy might come easier to some than to others, it’s not something that anyone else couldn’t do. Even the smallest act of explaining diabetes to somebody else, or asking your healthcare team for something that you want – is advocacy.

That’s not to say that I don’t have the interests of the wider diabetes community at heart. It’s just that I would not possibly be able to highlight every single issue around diabetes in the world. Not to mention that my interests, such as peer support and psycho-social issues, would be totally different to that of someone who might be interested in nutrition or science.

I laugh every time friends tell me how articulate I am, because so many different people have said it and it is so true. But in reality, I can only ever advocate for myself, drawing upon my own experiences as a person living with diabetes.

That does not make me a diabetes advocate.

I’m simply a person who lives with diabetes.

And while we’re at it, the hashtag #AADEDSMS on Twitter is well worth a read, with a lot of discussion around being inclusive from a recent Ascensia summit in America.

I Hear You.

Last week the DSMA Twitter account, (run by someone who I feel does a brilliant job of fostering inclusion within the diabetes community), sent out this Tweet.

My first thought was privilege. We must be mindful that the majority of the people within our online communities are highly privileged people.

Even though the world around me will never be perfect, I am a highly privileged person. I live in a country where my access to supples and healthcare is a non issue. I have modern tools at my disposal that help me to manage my diabetes in the best way that I can. I have a roof over my head, money coming in and people around me who I think the world of.

The people with diabetes who I know in person are among the most well connected, well informed people who are more than capable of advocating for themselves. The people who I interact with online are part of vibrant communities filled with peer support, information sharing and robust discussion.

Yet still, I don’t feel that any of these interactions are truly representative of the broader population of people with diabetes.

We all get excited by technology, and yet my feeling is that the majority of people manage their diabetes with an insulin pen and blood glucose meter. I spend hours scrolling through diabetes feeds every week, and yet I’m sure there are plenty of people out there who genuinely don’t want to know anything about it. There are people who wear their diabetes with pride, while I expect there are many who don’t feel the need to do so for a number of different reasons.

I’ll be the first person to say that I don’t know how to bridge the gap between those who are privileged and those who aren’t. But there is something that crossed my feeds last week which I really look forward to seeing evolve within the DOC.

‘I Hear You.’ It’s a small idea that was born from Heather, a researcher living with diabetes in the US, in collaboration with a group of people with diabetes. The idea is that we as a community, can offer an ‘I Hear You’ to others in the community, with the hope that it might help our peers feel more included. Particularly for those who feel their voices aren’t often heard. You can read more about Heather’s research, and how this idea came about on her blog here.

I have lived with diabetes since the age of 17. I know first hand just how isolating living with diabetes can be. I also know that connection and peer support has opened up my world and changed my outlook on diabetes for the better. That’s my sole, selfish motivation for continuing to participate in this amazing community.

I hear you.

But that’s only my story. I don’t represent, nor do I want to represent, any other person with diabetes. Your story is important, and I want to hear it too.

Without the New and Shiny.

All too often in the diabetes community, it feels like we must be using the latest tech and the shiniest tools in order to manage our diabetes well. Sure, I’m guilty of talking up the devices that I use. I love my insulin pump, and despite the extra work it entails it has definitely improved the quality of my life. Your diabetes may vary, of course. I am also extremely privileged to have health insurance that pays for the pump, and the capacity to pay for the heavily subsidised consumables here in Australia. Thank you, NDSS.

Sure, I’ve used FreeStyle Libre intermittently and love it. It was particularly helpful to me during my pump start, in nutting out a strategy around managing my blood glucose over the better part of three years, and also just for those times where I wanted a break (as recently as three weeks ago). But it was also unhelpful to my bank account balance and to my mindset after prolonged use. Today, I would probably class myself as someone who uses it for a specific purpose, applies that knowledge and then goes back to reality.

When it comes to blood glucose monitoring, It often feels like I must be doing something wrong because I’m not sporting a trendy sensor on my arm or having blood glucose readings drip fed to my wrist every minute of the day. Now this, on the other hand, is my idea of a real watch…

Company reps often seem to be in their own little world when they bang on about all of the blood glucose data that’s seemingly not available to someone not wearing a Continuous Glucose Monitor. I think that couldn’t be further from the truth.

Contrary to the impression you may have of me, a blood glucose meter and lancing device are quite honestly still my primary method of monitoring my blood glucose. It is definitely possible to manage diabetes well with just those tools alone.

When you check your blood sugar as often as I do, you can still obtain a pretty nice picture of what your levels are doing throughout the day. I would typically check on waking, after breakfast, before morning tea, after morning tea, before lunch, after lunch, before my afternoon coffee, after my afternoon coffee, before dinner, after dinner, before bed and during the night if I stir. That’s 12 times through the day. I’d comfortably throw another three in there for good measure.

I don’t check my blood glucose levels so often because I’m a failure or anxious or non compliant or doing really poorly with my diabetes. I check my blood glucose that often because it gives me more information to base my diabetes management decisions off. It helps me to feel more grounded and accountable for what I am doing. It helps me to produce more numbers that are in my target range.

Many of the AccuChek and Contour meters today have Bluetooth capabilities, and will wirelessly send the data into their companion apps. These apps keep me motivated. They plot out things like average glucose, standard deviation in my readings, readings below and above my target range as well as a visual daily graph of my glucose trends. I’ve really come to appreciate these, particularly in the past couple of months.

Sure, it’s a pain having to stop and stab my finger 15 plus times per day. Double points if you’re like me handling cardboard boxes all day and have to stop and wash your grubby mits first. It’s a pain having to carry my glucose monitor and strips and lancet around in my pocket when I go for a short walk around the block, compared to simply carrying my iPhone. If I won lotto tomorrow, CGM or Flash are probably the first things I’d shell out on.

But until then, I know that it is absolutely possible for me to manage my diabetes just fine without all of the new and shiny. I know my bank account loves me for it, too…