This post is a longer version of a thread I posted on Twitter yesterday (World Mental Health Day) about what has made me feel bad about my type 1 diabetes over the last 15 years and what feels better now.
What made me feel bad about my type 1 diabetes
I wasn’t “doing diabetes” for me – In the early days I focused too much on trying to get “good” results like it was a gold star in a school test. I wanted my doctor to give me a pat on the back and congratulate me for being good at diabetes. Then I wanted to make sure my babies were OK. I never really thought too much about doing it for me. I began to feel the effects of this when my appointments became less frequent a few years after being diagnosed and I found myself lacking a reason to keep on top of things in between.
I was convinced I was doing it wrong – Early on I thought diabetes was about getting the formulas right. I spent lots of money on books about diabetes and tried to study my way to good blood sugars. I told myself that if my blood sugars were out of range it was because I was doing it wrong. Wrong basal rates, wrong insulin to carb ratio, wrong insulin sensitivity factor, wrong timing. Whenever my Hba1c was high I thought I must be rubbish at diabetes, which made me feel defeated and frustrated.
I judged myself through my Hba1c – In the past I’ve set myself Hba1c goals. Sometimes I have met them, sometimes not. When my Hba1c is higher than I want it still upsets me, even though it’s “just data” and I know it gets knocked around by things outside my control. I try not to focus on it too much anymore. This is still a work in progress.
The treatment burden was too high – Finger pricking, pump site changes, corrections, anticipating activity, treating hypos. It was too much to keep up with. After a while I realised I could function OK with hyper sugars and with big gaps between appointments I started to let myself off. This was how I coped with diabetes burnout.
I knew what I was supposed to do but couldn’t make myself do it – This wasn’t because I was being lazy or unmotivated. It was a lot more complicated than that. I was burnt out but I also hadn't acknowledged that it was unrealistic to keep up with textbook diabetes management standards using imperfect tools and having lots of other things going on in life at the same time.
What feels better
It's been a long road and I have gradually figured out by myself what makes me feel better living with this relentless chronic condition. Insights have come from lots of places (separate post to come on that) but they have all helped me be a bit kinder to myself.
Minimise the burden as much as possible - I've been on a long mission to make my diabetes life as easy as possible. I want to do the absolute minimum. I don’t want to scan a Libre 10 times a day. I don’t want to think about corrections. I don’t have the brain space and I can't keep up with it. I've got a good set up now that I am using the Medtronic 780G hybrid closed loop and I've automated as much of everything else as I can (more on that here).
Find a sustainable diabetes routine – I am stuck with this condition for life so short term pushes that involve unrealistic and unsustainable lifestyle changes are a waste of time. I don’t deny myself treats and I don’t go to the gym, but I eat well and have an active life that works for me. I use as much technology to help me as possible.
Prioritise my diabetes tasks – I’ve cut a lot of faff out of my diabetes routine so the things I am left with are important "must do's". I feel better about myself when I do these things on time. This is also much easier now that I have changed my work life and moved from a full on, full time role to working as an independent consultant. I can work at a more manageable and less stressful pace and that means there's enough time to get outside, eat properly and take care of my diabetes when it needs my attention.
Reframe my goals – I can only control my inputs. So instead of focusing on Hba1c I focus on staying on top of my diabetes admin, trying to count carbs as well as I can, bolusing on time, changing my site every 3 days and changing my sensor every week. Staying on top of the diabetes to do list and making it as stress free and easy as possible makes me feel positive and in control. For me, the goal now is to be someone who is living well with T1D as much as possible, not some numerical checkpoint along the way.
For me, the goal now is to be someone who is living well with T1D as much as possible, not some numerical checkpoint along the way.