I was diagnosed 11 years ago in my mid 20s during my “working holiday” in Australia. Looking back over that time now, it is quite neatly divided into the “motivated phase” and the “demotivated phase”. I’ve been working hard over the last few months to get back on track and seeing some results, and I’ve also been trying to understand why things have been a struggle and what I can do to fix it.
When I first got diagnosed, the clear message I got was to keep my blood sugar under control to avoid long term complications. The healthcare team’s job was to teach me how, but as #T1D is a self managed condition, it was down to me to put in the effort and get on with it.
I felt quite empowered. I basically regarded my doctor the way I did my teachers or boss, the diabetes management guidelines as my “work” and set about becoming a model student with the aim of pleasing my doctor and earning some gold stars. I also wanted to have a baby in the next few years and had read that tight control pre pregnancy would be needed before the doctor would “give me permission” to get pregnant (that’s what it felt like anyway).
So thinking about it now, I had a few things that kept me motivated and on track in those early years:
- wanting to keep my doctor happy
- wanting good HbA1c results
- a log book to fill in so I could actually see that I was testing enough
- wanting to get pregnant
Happily my efforts paid off in keeping my blood sugars under good control. I didn’t realise at the time but I also benefited from quite a long honeymoon period so my body was giving me a hand by making a tiny bit of insulin before my pancreas completely conked out.
When I did become pregnant a few years later my level of focus and motivation went from high to obsessively high due to the anxiety around high blood sugars harming the baby. I was testing 10 times a day, I think the highest reading I ever had was a 12 (quickly corrected). My daughter was induced at 39 weeks in perfect health. I was too relieved and exhausted to give myself a pat on the back for making it through a really demanding and emotionally overwhelming time.
After the adjustment from being totally focused on diabetes management to being focused on baby management, I got to grips with being a mum with #t1d. It messed up my routine and my HbA1c increased but stayed in a good enough range for me to have my son 2 years later. (That wasn’t as smooth sailing the second time round which I’ll talk about another time.)
My son is nearly 6 and its been a real challenge to stay motivated to manage my diabetes in the way I feel I should. In all honesty I’ve struggled (until recently) to put in the effort that I used to before the kids were born. This snapshot of my pump download says it all.
I’ve come to a few realisations about why this was…
- I had no short term diabetes goals – the long term goal of “avoid something bad happening” isn’t inspiring on a day to day basis and is too negative – where’s the reward for all the effort in the short term?
- I wasn’t accountable to anyone from day to day – I wasn’t talking to anyone about my diabetes management so nobody knew if I was having a “good” day or a “bad” day except for me.
- My diabetes is getting harder to manage and more unpredictable so that means sometimes my actions just don’t work the way they should (or used to work). Then I need to make yet more effort to investigate what’s going on by doing even more blood sugar tests / weighing every thing I eat / waking up to check overnight BG levels / fasting basal adjustments… it all seemed too much to tackle.
- I wasn’t having effective conversations about any of this with my healthcare team, or my friends and family.
- This was on my mind and bothering me but I wasn’t taking any action to get myself out of the slump and everything else in my busy life was taking priority.
Getting motivated again
I’m happy to say that I have overcome my diabetes burnout and got back on track by addressing these 5 things and I’ve done this without any involvement of anyone from my healthcare team, or any changes to my prescription or diabetes technology. That’s not a criticism of them, it’s an acknowledgement that there are lots of ways we can help ourselves out of a tough patch and our healthcare teams don’t live with us day to day.
Next time I’ll talk about what I have done to fix the things that were holding my motivation levels back.
What keeps you motivated to look after your T1D?