DOC

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…

 

Is the DOC Inclusive?

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I’ve only been a part of the Diabetes Online Community for a little over a year.

When I nervously took part in an OzDOC chat for the first time, I felt very welcome. Strangely welcome, because the discussion was so friendly it looked like these guys all knew each other in real life. Somehow Renza stumbled upon my (very crappy at the time) blog, and offered me encouragement. Mike was one of the first people to leave me a comment, welcoming me into the Diabetes Online Community. I later learned he worked for a little site called Diabetes Mine and had included my post in their monthly blog round up. 

I found my place in this community quite easily, and I continue to participate quite actively. It stimulates me, it offers me support when I need it, and it inspires me to do better with my own diabetes.

Yet the other day, I felt compelled to agree that I sometimes I do feel hesitant to speak up because my opinion might differ from that of the majority.

To this day, one of the hardest things for me to accept is that not everyone is going to agree with me. I constantly try to remind myself that we are all different and naturally won’t agree on everything, but it’s still hard. I guess I find it hard to separate the difference of opinion with a dislike for my character. Silly, I know…

There have been some issues circulating around in the DOC that people have really strong opinions about. #DiabetesAccessMatters and Low Carb High Fat diets, are two examples that come to mind. Sometimes as a witness to these intense discussions and advocacy, I do feel hesitant to jump in with an alternate opinion for fear of being attacked or banished from a community I genuinely do love.

Social media only gives us a really small window into a person. When I first jumped in, I knew nobody with diabetes. I know for me, even just meeting a small group of peers at DX2Sydney this May has given me a lot of perspective in regards to the person with diabetes versus the Twitter window. It was a really valuable experience that carries me forward in my online activity to this day.

Some of my peers in the Australian community have set a great example for me in the use of diabetes social media. When I write here, I am increasingly conscious of trying not to “bash” the alternative opinion, or claim that my opinion is the right one, instead focussing on my own experience.

One thing I do admire is this community’s eagerness to comment and voice their thoughts. I often struggle to fit my ideas into 140 characters, and I’m terrible at keeping up in fast paced Twitter conversations. It often feels easier to lurk than to comment, and I feel I could be more inclusive by not being a stranger so often! 

I feel that Diabetes Daily and Diabetes Mine also do an outstanding job of being inclusive of the wider DOC. Diabetes Daily feature a wide variety of perspectives on diabetes management that I find myself reading more and more of. And you need look no further than the @diabetesmine Twitter feed to see how engaged the folks at Diabetes Mine are with the wider community.

Reading Renza’s post on the issue of inclusiveness yesterday really put my mind at ease. We don’t have to agree with one another, but we certainly need to be respectful so that others don’t feel afraid to voice their thoughts. 

I don’t really know how I come across online. But I hope that others would feel that I am respectful towards other opinions, even if I don’t agree all the time. 

Be kind to one another.

Finding My Tribe

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People don’t see me at 2.30am in the morning, shivering, and shoving skittles down my throat. They don’t see me on a restless night, rage bolussing stubborn highs that refuse to go down. Or the finger pricks I perform every time I walk out of the room.

People don’t see the insulin pump that I pull out of my pocket underneath the table. They don’t see the loads of discarded test strips and insertion devices underneath the lid of my rubbish bin.

People don’t see the guilt I feel every time I put a donut or a piece of chocolate into my mouth. They don’t see how tied down I feel every time I walk out of the house, with a jacket or satchel stuffed full of diabetes crap. Or the failure I feel at the bruises and scars that are hidden underneath my shirt.

People don’t see the exhaustion I feel, every time the alarm clock goes off to check my glucose in the middle of the night. They don’t see the burnout I feel behind every smile, and every single ‘good morning’ that bounces off my face.

People don’t see the rollercoaster of emotions that flood through my body when the door to my room is closed. They don’t see the fear I feel, every time this condition takes an unpredictable turn. Or the judgement I place on myself, every time I go quiet.

You don’t see diabetes, when you look at a person like me. You see normal. I daresay you even see healthy. You see me drinking coffee and eating donuts, just like everyone else. You don’t see all of the tasks that managing this condition entails. You don’t see the isolation I feel, living with a condition that you need to experience to fully understand (and trust me, I wouldn’t wish that on anyone).

For me, a big part of what was missing from my own diabetes equation for the first four years was peer support. Nothing really does beat the feeling of hearing someone else say the words “me too.” “I get it.” Or “I hear you.” Nothing beats the anticipation I feel, every time I refresh my diabetes feed reader. Nothing beats the enthusiasm I feel during OzDOC chats every Tuesday night. Nothing beats the sense of community I feel every time I am glued to Twitter, that makes me feel far less alone with my condition. Nothing beats being able to lean on my family for support when I need it, something that I simply wasn’t able to do after my diagnosis.

There’s an old saying that goes, “find your tribe and love them hard.”

I’ve definitely found mine, and they certainly won’t be going away anytime soon.

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Making DOC to Real Life Connections

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One of the best things that came from Diabetes Exchange in Sydney was the opportunity to make some real life connections with members of the Diabetes Online Community. In the past year and a half, online peer support has changed the way that I look at and manage my own diabetes.

More specifically, I’ve been drawn to a group called the Oz Diabetes Online Community, where I participate in diabetes support chats on Twitter every Tuesday night. The individuals in this particular group are the ones that I feel I can relate to the most. Theirs were among the first blogs I read. Their Tweets are the first that grab my attention in the morning. They live in the same country as I do, and we likely share a lot of similarities (and differences) about life with diabetes. The chance to meet some of these folks was a dream come true.

Mind you, I still can’t believe that this happened to me. I’m not an athlete or a celebrity, nor did I know anyone of influence in the room. I’m just an ordinary guy who happens to have diabetes. I kept waiting for the event to be cancelled, or to be scheduled on another day where I wouldn’t be able to attend. I was half expecting to be told that I didn’t have enough blog readers, or that I would be too expensive to fly over from Western Australia.

Going into this event, I definitely felt a little bit like the odd one out. I lived on the opposite side of the country, and I was probably the newest of all the bloggers there. I hadn’t met any of the others in attendance prior. I was a little nervous about whether I would fit in, and whether the other bloggers would be as nice as they seemed online.

I was so nervous on the drive to the Ovolo hotel in Woolomollo on Thursday afternoon. I wondered who would be the first person I’d meet. Would I run into Renza getting out of a taxi? Would I walk up behind Ashley at the reception desk? Would I bump into Georgie on the way to my hotel room? I wondered if I would even recognise them outside of their Twitter photo.

I was escorted up to my loft style hotel room, which was like nowhere else I had stayed in my life.


And, sadly, hardly enough time to enjoy it. I was nervously counting down the minutes until 4 o’clock. When I knew I couldn’t put it off any longer, I nervously proceeded to make my way down to the lobby for event registration. I instantly recognised Georgie, Kim and Ashley exiting the elevator on the opposite side of mine, and the nerves were instantly relieved.

It was super weird at first. Even though I knew these guys online, I didn’t know them, really. It was super weird as we sat down, and part of me wasn’t sure what I was going to say to them. Hey, great blog post last week? I’m glad the registration in the lobby lasted an hour, as it served as a nice ice breaker. By the end of that hour, I’d had a decent chat with Ashley, Melinda, and PR ladies Laura and Hannah, and I’d had a few words with Georgie and Kim as well.

It was great to chat with Drew and Matt, who I did not know of prior to this event, over breakfast on Friday. I was honestly in awe of all of Melinda’s life experience with diabetes, which absolutely shines through all of her activity online. I had a nice chat with Kim on the boat, as well as a few silly photos. Renza gave me a few words of encouragement about my upcoming pump day on the way upstairs to pack my bags on Friday morning. Georgie and I counted down together as we inserted the Libre sensors on our arms. I had fun Tweeting with Ashley during Friday’s proceedings, despite the fact that we were sitting next to each other. Although I didn’t get a chance to have a chat with Tanya, I was inspired by the story she shared about managing diabetes and achieving great things in a way that worked for her.

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I guess my biggest takeaway is that I no longer feel like such a stranger around these guys. While some of the bloggers aren’t in the same circles as myself online, I do feel closer to some of the others. I feel like I do Tweet these guys more often. I have now replaced most of their “online” voices in my head with their real ones. And some of them are now Facebook friends, as well.

I feel so privileged to have met these guys, and I’ll remember our time together fondly. Here are the list of attendees and their blogs:

Ashley of BitterSweet Diagnosis

Melinda of Twice Diabetes

Georgie of Lazy Pancreas

Kim of 1 Type 1

Renza of Diabetogenic

Tanya of The Leveled Life

Drew of Drew’s Daily Dose

Matt of Afrezza Down Under

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Disclosure: Abbott Diabetes Care paid for my travel and accommodation expenses to Sydney. I received a FreeStyle Libre reader and two sensors free of charge. There was no expectation that I would subsequently blog, and all opinions expressed are my own.