How the Type 1 Community Saved My Life
Updated: Jun 2
Picture this: blood sugars all over the place all the time, constant mood swings, tremendous fear of insulin, that haunting feeling of under-achieving and not being able to grasp control, feeling lost and so incredibly alone. Sounds familiar? At least some of it surely is. Hectic blood sugars are no fun, and a life with them is not good a life.
That description above, yes, that is me, just over a year ago. I had no idea what I was doing with my management. I really wanted to fix it, but I just didn't know how! I thought I’d tried everything. But I was so wrong.
What has changed since? How did I get to the happy place where my blood sugars are in range pretty much all the time and my A1C is 5.6%? The T1D community and the connections that I have made are to thank.
It all started with the DAFNE course (offered free by NHS UK). There, for the first time, I met 5 other people with Type 1. Not only did I meet them, I got to watch them manage their diabetes and learn together with them how to fix our problems and interpret blood sugar data to be able to make adjustments. It was life-changing. I only knew two other people with Type 1 before this, and we weren’t exactly close.
I was against counting carbs for a very long time, as I had an eating disorder in my teens and did not want to “track” anything.
What a mistake that was! DAFNE encouraged me to start counting my carbs again, and that gave me more food freedom than I could ever imagine and made my BG control so much better!
The DAFNE experience and meeting real people with Type 1 opened my eyes to the fact that I was not alone with my Type 1. It inspired me so much to pay more attention to the carbs, and take greater control with dosing, and lifted food restrictions that I was unnecessarily placing on myself. But… I was still missing a little truly crucial part of T1D management: pre-bolusing.
Last April (2019) I found the community that flipped my life up-side-down (absolutely in a good way): The Juicebox Podcast. I finally heard that there is a myriad of people out there with Type 1 Diabetes, dealing with the same issues that I experience. In addition to the amazing community, I discovered a treasury of knowledge about management. The problems were not only discussed, but solutions to them were provided from the conversations on the podcast. There was so much to learn about: from pre-bolusing, basal testing, hormones, stress and more.
This was like a breath of fresh air. I finally got rid of the awful spikes after food which I used to get, and managed to stay in range, even with routine changes. I was so happy, continuing to discover new management, testing different foods and pre-bolus times every day. This made me so confident, and my awful mood swings went away. But this was not only from the facts I learnt, it was from the community I gained. I knew I was not alone.
I started connecting with people on Instagram and messaging them to connect. I was not afraid or embarrassed to say: “I am a Type 1 Diabetic” or show off my Libre sensor. I embraced it and was enjoying it. I was proud of being a Type 1 Diabetic.
I then went to a T1D meet-up in a city nearby, made new friends and got so much more support. I completely stopped feeling alone and like I was diabetes fighting all the time. Seeing others go through the same things as I do, made me accept all the difficulties and deal with them with a much clearer mind. The community really changed me. Knowing that you are in this together and can support each other is an incredible powerful feeling.
I still learn about Type 1 every day. I keep developing and try to brave new foods and learn to bolus for them. I recently finally nailed my split-bolus for lunch. I am connected and continue to connect. Don't get me wrong, I too still have bad days, but they are infrequent and those just pass.
If you are reading this blog and feel alone, lost or scared, please, just get in touch! I have been there; I know what you feel. Let’s connect and keep building the incredible live-saving T1D community. Remember: you are not alone.
This is my story. I hope that it inspires you to start learning too and stop being afraid.
Much Love xxx