5 years ago today I published a 150 word post on my newly created website Pumps & Pricks and it changed my life. I couldn't have predicted what happened next...
Tackling diabetes burnout and finding connnection
At the time, I had been living with Type 1 Diabetes for 11 years and I was finding it hard, frustrating and lonely. I knew there was a community of people online giving each other support, I’d been reading their posts and I’d been following NHS diabetes boss Partha Kar who had a LOT of interesting things to say. I decided to join Twitter and set up a blog, writing my first post to kick off Diabetes Week in 2018.
At the time I had been struggling with diabetes burnout – when the relentless daily burden of finger pricking, carb counting, insulin taking, correcting highs and treating lows led me to checking out of taking proper care of myself and then feeling bad about THAT as well. I worked out how to pull myself out of it and I wanted to share it.
Feeling like I now had someone to talk to (i.e. the internet) I poured all my thoughts into two posts on how I got my diabetes mojo back and to my delight it was picked up by the JDRF (the world’s leading T1D charity) and republished on their website.
Building connections
In the meantime I was connecting with everyone I could find in the diabetes community on Twitter. There’s a lot of them and almost without exception they are a brilliant community of supportive, smart and funny people.
As time’s gone on I have made friends and acquaintances across the world from fellow people with type 1, academics, healthcare professionals and industry people. I’ve been able to meet some of them in real life too.
Got a question, want to have a moan, want to crack an in-joke, want to know what others have done, just ask and someone, somewhere will answer. They just get it. No explanations needed. Sometimes you’re the one who can provide an answer. It is the very best of social media.
Engaging with research
I discovered that world leading diabetes research is going on in a building I can see from my house in Exeter, so I joined the Exeter Diabetes Public Patient Involvement Group. I get to hear about research plans when they are at the grant application stage and there’s some seriously cool research going on.
Learning about new technology
It was through the online community that I found out about technology advancements in type 1 diabetes management. I started self funding a Freestyle Libre glucose monitor so finally got rid of finger pricking. Fast forward a couple more years and I started using a hybrid closed loop system where a continuous glucose monitor communicates with the algorithm in my insulin pump and automatically adjusts my background insulin 24 hours a day. This has been a major game changer that has improved my quality of life and my blood sugar control.
Expanding reach and impact
Lately I’ve been writing about my experiences with diabetes technology and they’ve gone slightly nuts, which I’m really proud of. This year I’ve also been able to attend major diabetes conferences as a patient advocate (thanks to dedoc), writing about what I see and hear and offering my take. Next week I’ll be heading to the American Diabetes Association conference in San Diego, excited to hear about the latest in treatment, technology and research.
Looking back and looking forward
It was scary to put my thoughts out there, to be vulnerable, to not know what might happen, but I’m so glad I did. I would never have guessed when I wrote those first 150 words that it would lead to this journey of friendship, learning, great adventures and better mental and physical health, but here I am, about to head to the other side of the world to continue the conversation. Here’s to the next 5 years!
Follow along
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Where it all began: my first post on 12th June 2018
Inspired by the NHS’s Diabetes Week and the Talking About Diabetes campaign, I’m putting fingers to keyboard to share my perspectives and experiences of living with Type 1 Diabetes for the last 11 years. My aim in this is to help and support other people with diabetes, and to connect with the diabetes healthcare community to help them to deepen their understanding of the real life challenges we face. This goes beyond the “science bit” of insulin, carbs, technology, basal/bolus regimes, HbA1Cs and into the daily challenges of decision making, motivation, frustration, weird unexplained results…the list goes on, but T1D is without question a condition that affects body AND mind. I’m happy to see that healthcare professionals are talking more about mental health and diabetes and I’m looking forward to joining in the conversation on this and hopefully seeing how this leads to action to better support people with diabetes.