My Story.

I recently submitted this piece of writing to a diabetes publication in the hope that they might consider featuring it at some point. While I was sad (and surprised) that they weren’t able to accommodate it, I’m incredibly proud of it. You’ve probably seen bits and pieces of my story scattered through this blog, so today I invite you to take the journey with me in the comfort of one blog post. From the moment I first began developing symptoms of diabetes right through to today where I feel supported, loved and owing a whole heap of debt to my diabetes tribe all over the world!

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I’m one of the privileged few who was diagnosed with type 1 diabetes a few weeks shy of my 18th birthday.

My first noticeable symptom was weight loss, both on the scales and in front of the mirror. I thought nothing of it. A few weeks later I found myself unable to concentrate on my uni assignments for three straight days, distracted by feelings of extreme lethargy and thirst.

Within an hour of going to work the following morning, I lacked the energy to stand on my own two feet and had to call it a day. I visited a GP, who told me I had a virus and sent me home on hot fluids and bed rest.

I spent the next three days in bed, something that I rarely ever do when I’m sick. My thirst was insatiable. My mouth was devoid of all it’s saliva, making solid foods very unappealing. When I woke up on the fourth day feeling nauseated and short of breath, my Dad drove me to hospital where I later learned I was in a state of Diabetic Ketoacidosis (DKA).

Initially, I did feel a brief sense of dread at the prospect of having diabetes forever. However after feeling so poorly for several weeks, I was simply relieved to have my energy back! I don’t remember actually processing my type 1 diagnosis all that much right away. I really just had to dive back into uni, work and turning 18!

I left hospital knowing how to inject insulin and check my blood sugar. My parents were a great support to me at home, and I had a wonderful diabetes educator who I saw at the hospital diabetes clinic.

While I count myself lucky that I went through adolescence without diabetes, being diagnosed as a young adult presented a unique set of challenges. Nobody knew that I had diabetes. I didn’t grow up with it, I didn’t go through school with it, and it wasn’t simply there for the world to see. I didn’t know life any other way.

I wasn’t able to experience diabetes camps or other youth-oriented activities that would have automatically connected me to other people with diabetes. Being diagnosed at an age where I was fairly independent in my management, I didn’t have a parent or caregiver to share this experience with me first hand.

Diabetes quickly became a very isolating thing to deal with. Diabetes didn’t feel normal. I felt awkward. Different. Moreso at a time while others my age were venturing out into the night partying and drinking like there was no tomorrow, while I was sitting at home after my 18th birthday party eating my way out of a low.

I was really conscious of my diabetes. I checked my blood sugar and injected insulin in private. There were times where I didn’t leave home prepared. I didn’t know how to talk about something that felt so unexplainable. It became easy to keep diabetes to myself, and assume that nobody else would understand.

Diabetes was extremely tough to manage, and in hindsight I was probably weaned away from diabetes education too early. I wasn’t very motivated or engaged in my management, and diabetes definitely produced a lot of emotion.

In 2015 I began writing my blog. Writing has always been my passion, and I knew that I had wanted to start a blog for quite some time. I didn’t think that there was much out there on the interwebs from people actualy living with diabetes, however I was quickly proven wrong!

I began using Twitter, where I found a lot of other people with diabetes openly sharing their experiences. I discovered a group called the Oz Diabetes Online Community (#OzDOC), where weekly diabetes themed chats took place on Tuesday nights. I’m also in a few closed groups on Facebook, and I can see how powerful they are in providing a safe space for other people with diabetes to seek peer support.

Online peer support eventually extended into the offline world. I’ve been lucky enough to receive invites to a few diabetes conferences and events, where I’ve been able to put faces to some of the folks I’ve met online. The feeling is so surreal!

Here in Perth, I’ve also been working with an amazing Young Adult Diabetes Committee. We meet monthly and put together events to fulfil some of the unmet needs of young adults living with diabetes. It’s really exciting to finally have somewhat of a diabetes community closer to home.

Diabetes can be an incredibly isolating condition to live with, and there really is something to be said about sharing our experiences with people like us and hearing the words ‘me too.’

The Diabetes Online Community, or DOC as the cool kids called it, was my very first form of connection to other people with diabetes. It helped me to gain a great deal of confidence in my own condition. Day or night, there’s a good chance that others will be around for support in this global community.

Immersing myself in diabetes blogs, books and websites, I also found a wealth of useful information that helped me to become more engaged in my management. I got back in touch with my diabetes educator, and eventually made the leap from multiple daily injections to insulin pumping in 2016.

Blogging, and wider diabetes advocacy, has since become my passion. I’m incredibly proud of my little corner of the internet, where I’ve documented so much of my journey over the past three years. It has made my world a lot smaller today, and for that I am extremely grateful.

In 2015, I never imagined a life where connection to other people with diabetes would contribute to my physical and mental wellbeing. Peer support has been one of the biggest game changers in my eight years of living with type 1 diabetes, and it’s the one thing that I hope to change for others walking in my shoes.

In and Around the DOC of Late V

Hello, February! In amongst the long Sunny days and balmy nights, there’s been a few things that have crossed my radar of late. So grab a coffee and settle in!

I’ve noticed a lot of conflicting information circulating in Facebook groups recently surrounding the new Cellnovo insulin pump being withdrawn from the Australian market, with suggestions that the parafin wax was unable to withstand the Australian Summer heat.

With no official communication from either Cellnovo or the NDSS, I can only assume that the product has not actually been recalled, but rather just that new Cellnovo units are no longer for sale. I have since learned that an upgraded Cellnovo system is expected in the next month, which will be swapped out with all existing Cellnovo units before becoming available to new customers on the waiting list.

Speaking of pump choice, there’s been a lot of speculation about AMSL Diabetes acquiring a new pump to distribute following the demise of Animas. While Tandem’s t-slim touch screen insulin pump with Dexcom integration would feel like a natural successor for AMSL, it is not currently listed on the Australian Register of Therapeutic Goods (ARTG) and cannot be lawfully be distributed in Australia. Given that approval can take a number of years, I’d be inclined to say that it’s unlikely at this stage.

What has received approval, however, is the Omnipod tubeless pump as well as the tubed Ypsopump from distributor Ypsomed Australia. More recently infusion sets, software and the starter box have been submitted. Time will tell…

The Oz Diabetes Online Community lives on! David @davidburren can be found hanging out under the #OzDOC hashtag on Twitter every Tuesday night from 8.30 to 9.30pm for anyone in the community seeking out peer support in the slot recently vacated by moderator Kim. There’s also a new Twitter account @OzDOC_host, where weekly chats are being run from.

Here in Australia, it’s a given that most of us wouldn’t think too hard about the cost of our insulin thanks to generous government subsidies. What you might not be aware of, however, is that the full cost of a script of insulin is several hundred dollars. In other parts of the world, this insulin is far less accessible and a lot less affordable.

February marks the annual Spare a Rose campaign in the diabetes community. The idea is to spare a rose on Valentine’s Day, and donate the cost of that rose (roughly $6 AUD) to a child with diabetes in need of insulin. Sparing just one rose will provide a child with life for a month in the form of insulin. You can find out more and donate at sparearose.org.

Finally, the Young Adult Diabetes Committee here in Perth are hosting their first event for the year on Thursday February 22. Dr Kirstie Bell will be sharing some insights from her research into fat and protein’s effect on blood glucose levels (you can read more about Dr Bell’s research here). If you live in Perth or you know of anyone who does, please pass this on. You do need to register through Eventbrite, however.

After starting my work week on Sunday this week, I’m fuelling myself purely on caffeine and on the countdown to a three and a half day weekend. Happy hump day!

Diabetes Brigades.

I was trawling through my Facebook feed yesterday when I was distracted by one post in particular. It wasn’t the content that caught my attention however, but rather the brigade of comments that accompanied it.

With many schools going back this week after a leisurely six weeks off (one can only dream), the post was providing some suggestions for school lunchbox snacks.

I didn’t think there was anything particularly bad about the items suggested. Most of the suggestions were only small snack sized portions, and obviously not every item on the list would go into the lunchbox at one time.

I knew that if I were a kid, these would sound like pretty popular options to me. In fact two of these suggestions were in my own lunch box earlier that day, which I had carb counted and given insulin for. I imagine that I would feel very comfortable among my friends in the school yard with suggested snacks such as an apple or a yoghurt.

The aggressive comments, however, told a very different story. People felt the need to begin picking these suggestions apart for a number of different reasons, and linking them to all sorts of horrible diabetes end games. These comments were a pretty poor reflection on the community that I have come to know and cherish.

Yet I couldn’t help but come back to the bit about two of those very suggestions being in my own lunch box earlier that day. Put yourself in the shoes of a parent, or any person with diabetes for that matter, who is packing some of these very typical school food items into their lunchbox. How would you feel, reading a brigade of comments shaming your food choices and your parenting?

Now imagine that the person reading these comments isn’t in as comfortable a place as you are with diabetes. Where could that potentially lead you to? Feelings of guilt? Depression? Diabetes burnout? Disordered eating?

Despite how much of myself I’ve shared with you on these pages, it is not my place to give you advice, tell you how you should be managing your diabetes, or be making you feel guilty if your approach to diabetes doesn’t agree with mine.

Diabetes management is a very individual issue, and I truly believe that the foundation should be built on the needs and preferences of the individual. If that means letting a kid be a kid and eat a muesli bar or a handful of popcorn, then so be it. But hey, that’s only my two cents. 

If the suggestion you see online doesn’t suit your individual needs, then you’re certainly not obliged to take it next time.

P.S. I think Diabetes Australia have done an outstanding job on the resource Mastering Diabetes in Preschools and Schools, and I strongly encourage you to check it out here.

Farewell, #OzDOC.

When I first dipped my toes into Twitter three years ago, the Oz Diabetes Online Community was one of the first places where I found peer support online.

I very much looked forward to Tuesday night Twitter chats, where participants would come together and answer structured questions about diabetes in a very supportive and engaging environment.

Inbetween chats, it was not uncommon to put a random diabetes question out there with the hashtag OzDOC and have it answered. OzDOC gave me the opportunity to network with other people with diabetes here in Australia, something I did not have in my own life at the time.

Over the past five and a half years, OzDOC has been largely led by co-founder and operator Kim. She has been the one responsible for making sure the moderator’s throne is occupied each week, and that there is a topic and questions ready to go.

Kim does a stellar job in welcoming participants to the chat, steering the conversation, and most importantly supporting and encouraging participants as they share candid insights about living with diabetes. To this day, chats just don’t feel the same when she is not in the moderator’s seat!

More recently, I stepped up and formed part of a moderator’s group of seven. Together we brainstormed topic ideas and took turns in moderating weekly chats. We’ve also seen healthcare professionals engage in our weekly chats, valuing the insights that I can only imagine would be difficult to gain in a clinic setting.

Another highlight from OzDOC would surely be having the opportunity to meet some of these amazing individuals at Abbott’s Diabetes Exchange in Sydney last year.

When Kim recently announced to the group her intention to step away from OzDOC co-ordination duties, it was a decision I totally understood. Running a support group like OzDOC in one’s own time is a big commitment each week. Even with a team of moderators, Kim still shoulders a great deal of responsibility in making sure chat slots are covered, questions are suitable, social media reminder posts are scheduled, and all of the other behind the scenes administration.

Members of the moderators group were offered the opportunity to take over Kim’s co-ordination duties, however nobody felt they were in a position or capacity to lead. I felt that realistically, this was not a commitment that I would be able to make next year and that the time was right for me to move on.

The final OzDOC chat will take place Tonight at 8.30pm AEDT. Be sure to also check out the Oz Diabetes Online Community Facebook page, where Kim has been sharing a bit of a retrospective over the past couple of days.

After tonight’s final chat, the @OzDiabetesOC Twitter account will cease. Does this mark the end for OzDOC? Who knows. If members of the community would really like for it to continue, then I’m sure that they’ll find a way.

To Kim and to everyone else involved in the OzDOC community in some way or another, I just wanted to say a massive thank you. You have all made my world just that little bit smaller.