I was diagnosed with type one diabetes at the age of 6, way back in 1997. Most people make the assumption that because I was diagnosed so young that over the years I’ve become ‘used’ to living with diabetes but this couldn’t be any further from the truth.
I’ve actually found it extremely difficult transitioning through the different stages of life with type one. And once I reached my early teenage years, I completely rebelled against it. After a few years of struggling with diabetes burnout and just wanting to be ‘normal’ like my friends, I pretty much gave up on my management all together. Luckily in all my years as a person with diabetes, I’ve never been admitted into hospital due to my diabetes (knock on wood). But god only knows how I managed to survive. Some days I would go without injecting. Other days I would just dial up 20 units in one go and hope for the best.
I’d love to tell you what my blood sugars were. But I can’t, because I honestly didn’t even own a working blood glucose meter! Pay it no attention and it will be as if it’s not there was pretty much my approach to my ‘betes. I drank, smoked, partied hard and ate anything without giving it a second thought.
Fast forward to a few years ago, my then fiancé and I were in the midst of planning our wedding. I woke up and came to the sudden realisation that I was slowly killing myself. I realized that if I ever wanted to have children someday, something needed to change. So I decided to take control! It felt like I’d been diagnosed all over again. First I got myself a new working blood glucose metre. But set insulin doses with every meal had become something of the past: carbcounting was the new big thing. The carbs and cals app and book became my holy grails. Also, my trusty set of kitchen scales became my dinner date for every meal to weigh the carbs in everything I ate. It wasn’t easy and although I had the support of my Diahubby, I felt overwhelmed and alone!
The online community
One day I was aimlessly scrolling through my Instagram and I came across a post with someone proudly showing off their blood sugars on a blood glucose metre. I couldn’t believe that someone was sharing their diabetes with the outside world, far less on their social media. Soon, I discovered there was a whole community of people with type 1 diabetes sharing their journeys, tips and advice with one another online. Secretly I made my own diabetes account on Instagram so I could follow their journeys.
After sitting in the shadows for a few weeks, I got the confidence to share my very first post. It was liberating! I’d hidden this disease for years, I had run away from it, ignored it and never told anyone I had it. And here I was, proudly sharing with millions of people on social media. Well maybe only the couple of followers then – but it still felt amazing!
This started my journey to acceptance! Being part of a community of other people with type 1 diabetes who go through the same highs and lows as me, turned this negative part of my life into such a positive. I quickly realised that diabetes didn’t need to look clinical and boring. Since then it has become my mission to help the community decorate their diabetes!
It’s okay to have a crappy day
As I am writing this, it all sounds so easy, but it wasn’t! I remember one time, I threw my dinner at the kitchen wall in a diabetes rage and then sat on the floor and cried my eyes out for hours! Some days you do everything to the letter, count every carb, inject the correct dose, take 50 blood glucoses checks and you’re still frustratingly too high or too low. And although this still inevitably happens, it’s less frequent and I am more accepting of those crappy days, they happen and that’s okay!
My journey from Dia-Bad to Diabadass has been so worth it! Counting carbs is now second nature. I no longer dread taking a test or injection because I know it is what is keeping me healthy and alive. With the help of technology, first the Freestyle Libre, then Dexcom and now an insulin pump, I am able to monitor my sugars much more closely. And it allows me to make adjustments myself without having to wait every few months to see my DSN. My Hba1c is the lowest it has ever been and I am so proud of myself!
Claire also known as Organising Chaos to many, has reached diabetes level 22. After suffering from severe diabetes burnout she found the diabetes online community who helped her to embrace her diabetes. She now runs a diabetes accessory company full time helping other people with diabetes to decorate their diabetes.