Diabetes Community

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.

Overflowing.

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Being diagnosed with diabetes as a young adult came with its own, unique set of challenges. I had lived a ‘normal’ life for 17 years, and then all of a sudden I had this new condition that I had to find a place for in my life.

Nobody around me knew that I had diabetes, and it was difficult to explain such a complex condition to the people around me. In some ways, it was just easier to deal with my diabetes in private rather than having to try and explain what I was doing in the middle of another frustrating high blood sugar.

Today, I think my diabetes is pretty visible. Whether I’m talking with the pump in my hand, checking my blood sugar in the inventory office at work as someone comes to interrupt me, or walking back out again crunching down glucose tabs.

It’s fair to say that I have a pretty big interest in diabetes today. I spend a lot of my spare time writing here, freelancing over at Diabetes Daily, posting about diabetes on my social media, attending community events, as well as being part of a diabetes Committee here in Perth.

“Are you going with the diabetes group?” is now a fairly standard response from colleagues when they hear that I’m taking annual leave from work.

“What are you doing?”

“What’s that?”

I spent so long imagining people’s reactions to a finger prick or an insulin injection. Today, it often feels like they simply don’t take any notice. Those explanations of the condition that I live with don’t seem to have any effect when the same questions pop up again and again. Perhaps others are just sparing my feelings by not asking me what I am doing.

However after National Diabetes Week, it finally began to feel like those messages of awareness were getting through to the people who needed to hear them the most.

The response to my diagnosis story that was shared on Diabetes WA’s Facebook page last Sunday was phenomenal. The story that appeared in The West Australian on Thursday was absolutely huge.

Despite my repeated arguments of just how terrible that photo was, two colleagues at work pulled the newspaper out of my hands on Thursday morning, took it over to the photocopier and stuck it on the staff room wall at work. “It’s a really important issue that could affect the people you work with!”

Doing media is a really big thing, even for an over sharer like myself, but I couldn’t be prouder of the outcome.

After a big week spent raising awareness of diabetes, and hearing stories shared from fellow people with diabetes, my cup is well and truly overflowing.

This is what National Diabetes Week is all about.

itsabouttime.org.au.

Kicking off Diabetes Week with some of my tribe last weekend.