Peer Support

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.

My Diabetes Family

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Diabetes is an incredibly isolating condition to live with. Nobody around me can see the relentless decision making, thought processes and feelings that I am left to deal with on my own. To add to that, I do most of the housework including finger pricks, pump maintenance and eating glucose tabs in a quiet place.

When I was first diagnosed, I didn’t know a single other person like me. Over the weekend, I connected with three fellow type 1s, each of whom had developed strong peer support networks within a short timeframe after their diagnosis. I was in awe. I didn’t even think of searching for diabetes in my search bar or on Facebook. Mind you, I can’t say that I would have had an open mind to peer support at the time. Regardless, I kind of stumbled across it by accident.

Abbott’s first DX event in 2016 is a memory that will always hold a special place in my heart. It was the first real time I had spent in the company of a group of people with diabetes just like me. It was a place where I was finally able to put faces to many OzDOC folk who I had only ever chatted with online.

Today, I count myself lucky that I have so many more ‘tribes’ of people with diabetes that I can rely on for peer support. They truly have changed my outlook on life with diabetes for the better.

Some are near, while others are further away. Some are people with diabetes, while others are connected to diabetes. I chat with them online and see them in person at diabetes meetups. I’ve learned a lot from them, and they have definitely inspired me. They are the ones who truly ‘get’ it. They are a reminder that I am not alone in the highs, the lows, the unicorns, the emotions and everything inbetween.

I’m also super grateful for my own two parents, who have supported me unconditionally since the day I was diagnosed (or should I say, born!). Little things like offering to accompany me to appointments in the earlier days, listening to me talk about diabetes, helping me out financially and reminding me that they’ll always have my back.

On World Diabetes Day, Diabetes Australia are asking us to shine a light on ‘My Diabetes Family.’

Today I’d like to raise a coffee mug to mine.

You have all truly changed my life for the better.

I honestly don’t know what I would do without all of you.

Championing the Consumer Voice

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I walked away from the Australasian Diabetes Congress feeling that consumers had an even bigger impact than last year.

This was my second year attending the joint Annual Scientific Meeting of the Australian Diabetes Society (ADS) and the Australian Diabetes Educators Association (ADEA). Diabetes Australia pioneered a fantastic initiative called the ‘People’s Voice,’ which brought the voices of a few bloggers and consumer advocates to the Congress.

I don’t, for a minute, ever pretend to be representing anyone other than myself at events like these. I fully accept the privilege I have, knowing that I do not even come close to representing all people out there with diabetes. I’m super proud of all of the people with diabetes in attendance who drove this narrative home to the delegates, speakers and pharmaceuticals in attendance. In particular those with gestational diabetes, those with type 2 diabetes and those who are not as engaged as we are.

On Wednesday afternoon, I was lucky enough to contribute to a session which presented case studies on ‘co designing’ diabetes services with the involvement of people with diabetes. I spoke about my involvement with Perth Diabetes Care through the Young Adult Diabetes Committee. For more of a taste of what we do, you can find our Facebook page here. Melinda Seed at Twice Diabetes also spoke about her involvement with Reality Check and the resources that she helped to develop for people with diabetes.

As I said last year, I was so humbled to be in the presence of so many people that simply wanted to learn from us. The idea of this session was to plant ‘seeds’ in the minds of delegates, and we really did delve deep into some of the issues that were prohibiting the engagement of people with diabetes. I spoke about how big of a step it was for me to come along to a gathering of people with diabetes for the first time, and also sharing how much of a ‘slow burn’ some of our work in this space can truly be.

I have personally found the Diabetes Educators to be the most supportive, open minded and willing to learn from us. They are truly the people who approached me the most during the course of the week, and hopefully they will only bring more healthcare professionals and researchers along for the ride with us. I really do apologise for our narrative that, at times, can come across as assuming that all healthcare professionals are not person centred. We really are just passionate about person centred care!

The consumer voice was also championed on Friday morning during a technology symposium. As Professor Anthony Russell presented a narrative about the administration of insulin in a hospital setting, the dialogue that followed on Twitter was more interesting.

One of the biggest issues that I have heard from other people with diabetes is the forced relinquishment of self management in a hospital setting. People with diabetes are forced to relinquish their insulin. People have had to fight for the right to hold onto their insulin pumps or CGMs. Highly capable people with diabetes are often treated as incapable of self managing a condition that they spend relentless hours managing on their own.

I really hope to see a resource developed around the rights of people with diabetes to self manage in a hospital setting. If there are two organisations that I would like to see tackle this issue, it would have to be the Australian Centre for Behavioural Research in Diabetes (ACBRD) and Diabetes Australia.

People with diabetes also slayed the Twitter conversation. In a short two years, it really does make you wonder what they ever did without us? Ashley Ng ran a Twitter masterclass with the support of ADEA, encouraging healthcare professionals to get online. Just look at these amazing stats!

I am super proud of everything that the people with diabetes in attendance achieved throughout the week. I truly feel that the consumer voice was championed, and that we have proven our worth.

This is EXACTLY why we need to be at events like these.

Disclosure: Diabetes Australia covered my registration, travel and accommodation costs to attend the Australasian Diabetes Congress. My opinions and my time, including the annual leave I took from work to attend, are my own.