Peer Support

Warm Fuzzies

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Last night, this photo popped up in my memories from four years ago.

Instantly, I was filled with a massive warm and fuzzy feeling.

I think out of all the incredible events I’ve been a part of in the diabetes community, this one would definitely be my favourite.

Four years ago, Abbott brought together a group of Aussie diabetes bloggers for the launch of the FreeStyle Libre. While it was really cool that I had scored a trip to Sydney and some cool new tech to try out ahead of others, it was pretty special to me for a totally different reason.

While a lot of these bloggers already knew each other – whether it be that they lived on the East Coast or that they had been around in the DOC a lot longer than I had – I was meeting them for the first time. I had only ever known these people online, mostly through Twitter handles and weekly OzDOC chats that were happening at the time. It was pretty special to embrace people who I felt like I already knew, but didn’t really know.

This was the first time that I had spent surrounded by so many people with diabetes. I did feel like the new kid throughout those two days, amongst a group of people who already seemed so close-knit.

These two days were filled with some bright conversations. To give Abbott Diabetes Care some credit, they have never intended to direct or takeover these events. These DX events have truly been about people with diabetes.

Thankfully, this event wasn’t the last of these conversations. Abbott held subsequent ‘DX’ events that had even lesser focus on their product. PWD have been given many other platforms to have their voices heard since then. But of course, there will always be room for more.

As for me? I’m going to be selfish and say that I’m grateful that it wasn’t the only time that I’d get to see these people, and that they weren’t the only people with diabetes (or people connected to diabetes) that I’d ever meet. I’ve had the privilege of spending more time with these folks, and others, since then.

Four years later, I’m still just as grateful to Abbott Diabetes Care and Weber Shandwick for putting together such a special two days.

This is exactly the warm fuzzy feeling that I need right now.

A Decade With Diabetes

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If I could best describe diabetes, I would say that it’s incredibly monotonous. How do I psych myself up to check my blood sugar, count the carbs in my food and deliver my insulin? How do I psych myself up to check my blood sugar again, count the carbs in my food again and deliver my insulin again?

One of the hardest things about diabetes is being able to muster enthusiasm to do this thing day in, day out. How do I keep my diabetes management feeling fresh and exciting? How do I keep myself feeling energised to put in the best effort I possibly can each day, without ever getting a break? How do I keep myself motivated when diabetes suddenly decides that what was working for me yesterday, is not going to work today?

Today marks a decade with diabetes. It doesn’t really feel like a decade. It feels like forever. I can also say that it doesn’t really feel like anything extra special when you have to do this all day, every day for the rest of your life.

Technology is one of those things that has firmly helped me to manage my diabetes in the best way that I possibly can. I acknowledge my privilege in being able to say that. The t:slim is a massive upgrade to the old Animas Vibe which constantly fatigued me. Being able to leave the house with nothing more than my phone and glucose tabs is the best feeling in the world. My rebatteried Dexcom has given me a greater level of convenience in my day to day with diabetes which I’ve never had before.

But it would undoubtedly be the power of peer support that helps to re-energise me in my diabetes efforts on a daily basis. From the #OzDOC chats of old, to being part of the Young Adult Diabetes Committee, right through to events like DX and the Diabetes Congress where I’ve met so many amazing people with and connected to diabetes. It fills my cup to the point where its overflowing, each and every time.

I’ve invested so much into myself over these past ten years, and I’m not sure that I ever would have found the motivation to do that if it weren’t for the community I have wrapped around me.

So, I guess today doesn’t feel like anything particularly special. It just feels like any other ordinary Saturday. Outside of Mother’s Day plans, I don’t really have anything special planned for today. I think I’m just grateful for that sense of normality. Well, as close to normality as possible when you have diabetes.

A decade with diabetes has beyond surpassed my expectations.

Thanks for being a part of it.

Diabetes on an Assembly Line

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Direct material, direct labour, manufacturing overhead.

Direct material, direct labour, manufacturing overhead.

Direct material, direct labour, manufacturing overhead.

If you’re not a member of the #AccountantsOfTheDOC club, the aforementioned statements are the sum of total manufacturing costs incurred by an entity that’s in the business of producing and selling products.

These words have been drummed into me by my tutor for weeks and weeks on end. In the midst of my study procrastination, I’m applying these costs to my diabetes.

Direct materials are the items that are consumed in the process of managing my diabetes, and are physically incorporated into the finished product. Which is a living, breathing (and hopefully happy) me. Throw in some Novorapid insulin, an AccuChek Guide blood glucose meter and some test strips. Add in some intermittent FreeStyle Libre sensors and a durable reader. Throw in a #TslimForFrank, some Tandem luer lock insulin cartridges and Animas Comfort infusion sets. Oh, and don’t forget the batteries, USB adaptor and cord.

Direct labour is the cost of salaries and wages for the personnel who work directly on my diabetes. As the sole ‘personnel’ responsible for working on my diabetes, I’ll bill for blood glucose monitoring 10-20 times throughout the day. Add in the labour of carb counting for breakfast, lunch, dinner and every other time I wish to eat. Mix in site changes every three and a half days, and refills to my insulin cartridges twice a week. Throw in the labour of reaching for glucose tabs every single time a hypo hits. Double time if it happens in the middle of the night. Not to mention a hint of intuition for when your pump’s suggested correction doesn’t feel quite right.

Manufacturing overhead refers to all of the indirect costs of managing my diabetes. Oh boy, are there a lot. What about all of the endo appointments, visits to the doctor, blood tests, eye check ups and visits to the podiatrist? Or the time spent overthinking something that doesn’t feel quite right? How about the exhaustion after a particularly taxing day simply because I have to do diabetes on top of life? Or the emotions that stem from the numbers we are so heavily invested in? Not to mention the costs of remembering to carry all of my diabetes junk around with me.

By far, the most worthwhile indirect cost-that-doesn’t-really-feel-like-a-cost would have to be the time spent connecting with others in the diabetes community. Having a space to seek out the experiences of others, to vent my frustrations and to bask in the fruits of my diabetes labour is truly invaluable.

Back to the books I go. Have a great weekend, folks!

Gratitude.

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Today marks nine years of living with type 1 diabetes.

I might only be a dia-baby in the eyes of many of you, but to me nine years is pretty significant. It represents the majority of my adult life. As it becomes harder and harder to find things around me that pre-date my diabetes, it becomes harder for me to believe that a life once existed without it.

I don’t really know what to say today except that I am grateful. I’m grateful to be here. I’m grateful to be able to wake up, savour that first sip of coffee, watch the sky light up from my kitchen window, get dressed and go to work with ease.

I’m grateful to be living in an era of modern insulins, tools and technologies that give me a really good chance to be able to manage my diabetes well.

I’m grateful to live in a country where basic healthcare and diabetes supplies are relatively accessible and affordable. Thank you, Medicare and NDSS. I’m grateful to have a job and a roof over my head that allows me to pay for those things.

I’m grateful for the time and effort that diabetes has forced me to invest in myself. From curling up in front of blogs and books to spending nights scrutinising over blood sugar patterns, and just taking the time to listen to what my body is trying to tell me. I am a better person for it.

I’m grateful to have found the Diabetes Online Community a couple of years ago, which has today evolved into an amazing tribe of peer support around me. I’m grateful for the source of friendship, support and constant reminders that I am not alone in what I am dealing with.

I’m grateful for my family. Who tagged along to those initial clinic appointments, who have helped me out massively in the diabetes finance department, and who don’t ask me what my levels have been like.

More than anything, I am just so damn grateful to feel as ‘comfy’ as I do with my diabetes. That’s not to say that diabetes isn’t hard, or frustrating or filled with its moments. But yeah, I feel comfortable checking my blood sugar. Or wearing an insulin pump. Or talking about diabetes if it helps to explain something.

So this afternoon I’ll be grabbing a coffee and something nice to go with it, sitting in the sun and reflecting on the past nine years and just how far I’ve come.

#HealtheVoicesAU 2018

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Last weekend, I was lucky enough to get to Sydney to attend HealtheVoices (which I learned is actually spoken more like ‘healthy voices’ rather than ‘health-e-voices’).

After seeing the wild popularity of this conference among folks in the diabetes community who had attended US editions in recent years, I was curious to see what it was all about. This was the second edition that had been held in Australia, and my first time attending. Even if I didn’t get anything out of it, I figured it would still be worth attending just to catch up with some of the diabetes gang that would be there.

HealtheVoices is run by a company called Janssen (pronounced yaan-sen), which I believe is the pharmaceutical division of Johnson and Johnson. Their mission is to create a world without disease, and hence this program which is designed to support online health communities and advocates.

I guess this was a uniquely unique conference experience for me, because it put diabetes into a broader perspective of other health conditions. Just like diabetes, many of the other conditions represented there appeared largely invisible. I’d be lying if I said I didn’t find myself wondering where diabetes ‘sits’ in relation to all of the other conditions there.

Some of the other health conditions represented there included crohn’s, colitis, arthritis, various cancers and cystic fibrosis related diabetes. There were people living with the conditions, representatives from health organisations and carers. I was once again on the receiving end of stunned looks upon telling people I had travelled all the way from Perth.

SANE Australia, who appeared to be a major partner of the conference, supplied at least 20 or 30 mental health peer ambassadors, which speaks volumes about the prevalence and need to address mental health.

Throughout the weekend, I found myself explaining to others how the diabetes community operates, and how the diabetes ‘gang’ has become somewhat of a close knit group through social media, industry sponsored events, advocacy work and similar interests.

As I was listening to keynote speeches and personal experiences being shared on stage, I was left wondering what ‘community’ looked like for people living with health conditions other than diabetes.

Just last week, I wrote about how I have so many different ‘tribes’ that make up my diabetes support system. It couldn’t be more true. Because no matter where I am or who I am with, being part of the diabetes community always makes me feel that I am part of something bigger. I always, always, always feel like I am part of a community that has my back.

I really wondered about the dynamics of other health communities, what sort of a role consumers have in those communities, and whether they were as ‘closely knit’ as mine.

Something tells me that the diabetes community really is leading the way.

Disclosure: Janssen ANZ covered my flights, accommodation and shuttle to Sydney airport to attend HealtheVoices. Dad gave me a lift to and from Perth airport, and I happily paid for my train fare into Sydney CBD as I wished to arrive earlier in the day. I was fed and watered across the duration of the event, and also received a tote bag with some HealtheVoices stationery. 

The only condition of my attendance is that I would disclose the above if I chose to share my experience online. These thoughts are entirely my own. I happily gave up a day of annual leave from work to attend, as well as my Saturday.