DOC

Remembering My ‘Why.’

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I often marvel at just how much I’ve gained from being a part of the diabetes community.

From talking to people connected to diabetes, to being my own advocate in my diabetes care, raising my voice, asking questions, attending local diabetes events and volunteering my own time toward causes that I am passionate about.

While it’s true that diabetes, and more specifically diabetes blogging, has given me a lot of amazing opportunities, it truly is the community around the diabetes that has given me the most.

Four years ago, I knew next to nothing about diabetes. I was injecting insulin and checking my blood sugar, feeling very conscious of the people around me. I had no confidence in what I was doing. I was riding the rollercoaster, ever so helplessly.

Unfortunately the public system here in Australia, while fantastic, is geared toward clearing those clinic corridors and pushing the person with diabetes toward self-management as soon as possible. More so when you’re someone who is coping relatively better than other patients, even if it doesn’t necessarily feel that way to you.

For me, the lightbulb switched on when I first joined Twitter in 2015.

I had no clue that there was such a valuable resource in other people with diabetes available at the touch of my fingertips. I had no clue that talking to other people with diabetes was a thing, whether that be on Twitter, closed Facebook groups, Instagram, blogs, forums or something else. Those online connections eventually led to in person ones.

The diabetes community would have to be the single biggest thing that has helped me to live well with diabetes, both physically and mentally.

A great deal of what I have learned about diabetes has come from hearing the experiences of others. It certainly goes a long way in complementing the 99.9% of time that I spend outside the company of a healthcare professional.

It makes such a huge difference to know that there are others going through what I’m going through. I daresay that it even inspires, and motivates me to keep going in the daily grind that doesn’t end at 4pm on a Friday or the week before Christmas.

At the same time, I’ve also been authoring this little blog that you’re reading. Here’s the thing. I’ve always admired blogs. Long before diabetes came into my life, and also long before they were somewhat replaced by social media.

I blog for one reason, and one reason alone.

Myself.

I can’t speak for, or represent anyone other than myself through my words here.

However I do hope that through this little corner of the internet, I’ve been able to get some of that information out that I so desperately needed to find four years ago.

As I round out blog post number 500 here at Type 1 Writes, I can confidently say that this is my ‘why.’

Marvelling at the beauty of this building in Leichhardt, NSW, in the same way I marvel at how much diabetes has given me.

Outside the Bubble.

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“Diabetes! Diabetes! This way!”

The lady behind the counter was shouting and gesturing wildly as I entered the rec centre for an evening on exercise and nutrition put together by my fellow Young Adult Diabetes Committee members.

The YADC came to life a year ago and has since grown into a vibrant community of young adults living with diabetes, who are predominantly type 1s. As I found myself explaining to someone in attendance that night, this group really came about to fulfil a need that was currently missing in the Perth community.

As I took a seat and the evening’s proceedings kicked off, I found myself mentally nodding as I heard concepts being explained by our guest speakers that I was all too familiar with.

I looked around the room, glancing at some of the other people with diabetes and their loved ones in attendance. I observed many of them listening attentively, taking in all of the information they were hearing or jotting it down in note form. My own two parents were sitting behind me, and I wondered how easy this information was for them to take in.

They know the concepts behind managing type 1 diabetes quite well. At home, I find myself talking a lot about some of the exciting developments I read about in the DOC, my advocacy activities and diabetes related travel.

However, I’ve always been very independent in the physical management of my condition. I don’t bother them with all the nitty gritty stuff, like trying to figure out the best time to bolus for a high fat high protein pub dinner when my blood sugar is x mmol.

The evening broke off into group sessions, where I found myself chatting with some of my fellow type 1s in the room. It was nice (but also saddening) to hear other experiences in public hospital diabetes care that mirrored mine, while there were also some inquisitive questions asked of the pumpers and CGM users.

I departed this event with a far greater insight from all of the different perspectives I had heard and observed in the room during the course of the evening, and all of the different motivations for attending.

During our committtee meetings, good ideas simply seem to pop among this very bright group of YADC members. I spend my spare time trawling social media, squealing with excitement over the latest device or venting my frustration over the latest coverage of diabetes in the media. I get to catch up with people in the industry and other diabetes bloggers when I’ve received opportunities to travel, who are people just like me.

This event, however, had finally brought me outside of the diabetes bubble that I so often find myself sitting in. I just need to figure out how I can spend some more time here.

Yesterday’s Incident.

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Over the weekend, an uncomfortable incident caught my attention in a closed diabetes Facebook group. A new member to this group introduced himself as a health coach, sharing a before and after graphic depicting drastic weight loss and an image of a book he was publishing. Apart from the brief mention of the words ‘T1D for 20 years,’ there was no real substance to his post and I seriously doubted that he actually did have a connection to diabetes.

While the moderators of this group were likely out enjoying their Sunday, the community in this Facebook group impressively called this behaviour out for what it was. This man was clearly soliciting his products and services, and many in the group made it clear to him that this kind of a post did not belong in a peer support group.

While many healthcare professionals are still skeptical of online communities replacing their fundamental role, I felt that yesterday’s incident was an impressive example of how peer support is clearly not a place for medical advice.

The Diabetes Online Community typically does a stellar job at self moderation, with the community fostering a culture where participants feel welcomed, encouraged and able to seek support from those who truly ‘get’ it. 

Sure, a big part of our involvement in peer support is asking questions and sharing experiences, but the majority of the community embraces the philosophy that ‘one size does not fit all’ and that ‘your diabetes may vary.’ The DOC does not belong to any one person, and I believe that the majority of the community truly embraces this.

In my experience, keeping these philosophies in mind has made my experience an overwhelmingly positive one. Sure, I have witnessed uglier corners of online communities, and for the most part it’s where participants fail to acknowledge perspectives that might not be aligned with theirs.

One of the best things that has come from participating in the DOC is hearing these diverse perspectives, that have opened my eyes to the reality that not everyone is in as privileged a position as I am.

As for this individual, I expect that he is likely no longer a part of this online peer support group. I, for one, am glad that the DOC has the best interests of each other at heart.

My Own Worst Critic

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Throughout my childhood, my parents constantly told me that I shouldn’t compare myself to others. Unless I had done poorly on my Year 12 English exam, in which case it was perfectly okay for them to ask me what scores the other guys in my class had obtained…

It’s easier said than done, right?

When it comes to diabetes, I am my own worst critic.

It’s so easy to feel guilty when I wake up to a number that’s out of range.

It’s so easy to place blame for a hypo that was caused by a lapse of better judgement.

It’s so easy to feel anxious about my future during times when my diabetes management might not be so smooth sailing.

Connecting with, and meeting other people with diabetes has been nothing short of amazing. Everyone has their own, unique story to tell. Everyone is passionate about their story, and the way that they manage their diabetes. I drank in the knowledge. I felt inspired, motivated, and dare I even say passionate about diabetes. I no longer felt so isolated, or so alone when it came to living with diabetes.

However after immersing myself in this world for a while, there also comes a point where I might begin comparing myself to other people.

Why aren’t I going for a run every morning?

Why am I not able to wear a CGM without letting it overwhelm me?

Why aren’t I eating clean?

Why don’t I have that hba1c?

Why isn’t my graph as flat as that one?

Why don’t I practice mindfulness?

Why am I not bursting with energy when I woke up this morning?

As amazing as this world is, there also comes a point where I have to put all of these perspectives into a box and focus solely on my own. 

I am not that person who goes running every morning. I am not that person who is reading my latest blood sugar levels from an array of devices. I am not that person who is eating clean, super mindful and bursting with energy either.

I’m no Matt or Joe or Anna or Angela.

I’m just Frank.

And that’s all that really matters.

In and Around the DOC of Late II

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I feel I’ve been quiet in the DOC chatter while diligently working on my own blood sugar levels and stalking my glucose meter, so here are a few items that have caught my interest lately.

Allison at The Blood Sugar Whisperer is sharing a unique perspective into preparing to conceive a child with diabetes. I’m working diligently towards bringing my A1C down, so I can relate a lot to that aspect of Allison’s writing.

Speaking of A1C, being able to look beyond the less than ideal number that I wrote about last week was crucial. This post from Mike at Diabetes Mine really hit home, and it’s great to see that there’s conversations happening in the US around re-evaluating the A1C as the sole assessment of diabetes therapy.

I frequent Facebook, Twitter and a lot of diabetes blogs for my dose of DOC. One blogger who is doing it differently is Drew of Drew’s Daily Dose. Drew is an exercise physiologist and diabetes educator who lives with type 1. I first met him in Sydney this May, and he primarily runs a popular Instagram account focussed on his passion for exercise, fitness and type 1 diabetes. Check it out here.

Steptember. The idea is that you take 10,000 steps a day for 28 days and get people to sponsor you along the way. Although this is a fundraiser for Cerebral Palsy, I still think it’s a great idea for diabetes and getting active. steptember.org.au explains what it’s all about.

One of my favourite writers on the other side of the world is Sarah of Coffee and Insulin, and some of her recent posts have been exceptional. Sarah’s writing is just so captivating, and her lust for travel, adventure and life shines through in her writing. Happy 11th Diaversary, Sarah!

Back on the home turf, the Australian Diabetes Society and Australian Diabetes Educators Association held their annual scientific meeting last week. Tweets were rolling out from some of the passionate advocates in attendance, and you can catch up by following #adsadea2016 on Twitter.

Congratulations to Kelley at Below Seven and Kerri at Six Until Me on the recent arrival of their newborn boys. Maria at My Life: A Long Trip With T1D is also expecting, although I’m not sure her new employer realised straight away!

Tuesday night is OzDOC night. Follow @OzDiabetesOC and #OzDOC on Twitter to connect with other people with diabetes.

Last but not least, I must have missed the memo that Friday was National Dog Day. This little man has been holidaying at my house for the past two weeks, and he absolutely hates the camera. Although he did promise that he would guest blog again soon to make up for it…