Michelle Law is a 37-year old working mother with type 1 diabetes. We recently spotted Michelle’s blog, Pumps and Pricks, and asked her to tell her story about type 1 diabetes burnout.
I was diagnosed 11 years ago in my mid-20s. Looking back over that time now, it is quite neatly divided into the “motivated phase” and the “demotivated phase”. Recently I’ve been working hard to get back on track.
When I first got diagnosed I was told the importance of keeping my blood sugar under control to avoid long term complications. The healthcare team’s job was to teach me how, but as type 1 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 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 knew 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).
I had a few things that kept me motivated 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
My efforts paid off in keeping my blood sugars under 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 some insulin before my pancreas completely conked out.
When I became 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. Thankfully my daughter was born in perfect health, but 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. Although my routine as a mum became hectic my control remained good and I had my son 2 years later.
My son is nearly 6 and it’s been a real challenge to stay motivated to manage my diabetes in the way I feel I should and put in the effort that I used to before the kids were born. A few factors have contributed to this:
- I had no short term 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 type 1 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 sometimes my actions just don’t work the way they used to. I needed to make yet more effort to investigate what’s going on with more BG checks, carb-counting, 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. Everything else in my busy life was taking priority.
Getting motivated again “I can’t get out of it so I’ve got to get into it”
I’ve really turned a corner and feel back on top of things, so how did I do this?
Admitting out loud that things weren’t going well was the first step. This happened unexpectedly during a professional coaching session on a “wheel of life” exercise where you rate how satisfied you are in each area of your life. I scored myself low on “health” and when I was asked why it all came flooding out. It’s interesting that this conversation never happened in a doctor’s office.
Next was talking to my husband and kids. I told them that I hadn’t been taking care of myself as well as I should and that I needed their help to make sure my blood glucose testing kit was always at the table when we ate together.
My first goal was a simple one – to make sure that I always test my BGs at least 4 times a day. But my problem with this goal was that nobody would know whether I was achieving this except me. When you have long periods between medical appointments it’s just you and your willpower.
I realised that I needed to feel accountable to someone else to do this, and to make it easier for my family to know whether I was testing. I had an idea. I asked my 7 year old daughter to make me a sticker chart, stuck it on the fridge and started using it the next day. It was instantly effective. My family were supporting me, I wanted to fill up the chart and everyone could see whether I was doing it or not. I didn’t want to let my kids down. It got me back into the habit of frequent and regular BG checking.
Getting on top of my diabetes again
Once I started focusing on my diabetes again I started to reassess all aspects of my routine. As well as more BG testing I:
- started uploading my pump and BG data and studied the charts
- went back to basics with carb counting, stopped guessing, got my scales out again
- experimented with timing of exercise vs bolus to avoid lows when walking my dog
- became more thoughtful about my carb intake before bed
- moved my pump cannula to see if it would improve my insulin sensitivity
- re-engaged with the diabetes online community
- tracked my activity levels to compare with my pump/BG data
But one of the biggest changes? I have consciously stopped attempting to hide my diabetes management from others and I’m now talking about it much more openly. That means testing BGs in work meetings and dinner parties, explaining what my insulin pump is, explaining what type 1 is, often to people who have known me for years. I’m not just viewing it as “my problem” anymore. It’s just part of my daily routine and who I am, not this negative burden. I’ve decided that I can’t get out of it so I’ve got to get into it. That’s so much more positive and empowering.
Read Michelle’s blog
Want to hear more from Michelle? Visit her blog, Pumps and Pricks.