A year has passed since I joined Twitter and started this website to talk about Type 1 Diabetes.
Before that I was an “I’m fine thanks” person, generally keeping my Type 1 to myself, talking about it to nobody other than my healthcare team, and even then only superficially. Except I wasn’t really feeling fine about it, I was burnt out and I felt guilty about it.
In the year that’s passed, everything has changed.
I’ve spoken out, stepped out, taken action, met people, learnt new things, advocated for myself and others and had the most stable year of HbA1cs I’ve had for a long time. This has all been while getting on with the rest of my life as usual.
These have been the highlights…
- Joining Twitter and connecting with hundreds of people in the #gbdoc and #doc globally. Peer support, information sharing, learning and humour is all here.
- The JDRF publishing my story about recovering from #diabetesburnout and sharing it again on Mental Health day in November. I really hope this helps people to have conversations about the emotional burden of #T1D.
- Completing the Diabetes UK 1 Million Steps challenge and getting a personal thank you card to say I was a top fundraiser!
- Self-funding the Freestyle Libre – this has literally changed my life and freed me from the daily drudgery of finger pricking which I found a huge burden and source of much guilt because I wasn’t doing it enough.
- Joining the #ExeterDiabetes Public Patient Involvement Group to review diabetes research funding proposals. Little did I know that the hospital I can LITERALLY SEE FROM MY HOUSE was a global leader in diabetes research and it is an utter privilege to be in the same room as the brilliant, clever and kind people who spend their working lives thinking of ways to help people with diabetes.
- Going to 3 diabetes conferences (and hearing Dr Partha Kar speak at each one). The highlight had to be this year’s TAD Talks. Listening to the speakers, meeting faces from the #gbdoc, watching the brilliant play Pricks.
- Hosting two #gbdoc tweetchats! I excused myself in the middle of a last minute work dinner so I could stick to my hosting duties and it was so fun.
These have given me a real sense of achievement and a feeling that diabetes is (almost) something positive as without it I wouldn’t have done these things.
Does this mean all my diabetes related problems are solved?
Afraid not. That would be too easy.
The Freestyle Libre has solved my problem of not checking my blood sugars enough, but has given me a new problem to deal with: trying to improve my time in range. Right now it’s less than 50% and seems to stick there no matter what I do. Having constant sight of my blood sugar has shown me how much is outside my control – hormones, stress, illness, dodgy cannulas, insulin absorption problems. The burnout challenge is still there but it’s different. It’s gone from “I’m not trying hard enough and I feel bad about that” to “why isn’t this improving when I’m trying hard, what’s the point?”
So I’m carrying on, trying not to take it personally when my line goes out of the blue band on my Libre reader, not view it as a test I’ve failed or a calculation I haven’t nailed. I’m trying to be honest with myself about whether I really am doing as much as I can, but cutting myself enough slack so it doesn’t distract me from being myself and doing everything else I need to do.
I’ll keep you posted…in the meantime I’ll be on Twitter finding out what everyone else is doing (and watching cute dog videos).