When you’ve lived with Type 1 diabetes for over a decade, you think there aren’t that many things that will surprise you. Many things that will frustrate / annoy / remind you, but not that many that will flat out surprise you. Or, at least, that’s what I thought. And then grief hit me - sideways, like a bus - and I realised how little I knew. 

My name is Bridget McNulty, and I live in Cape Town, South Africa. Here’s what I wish I’d known in the Before Time.

The adrenalin days

My mom died very suddenly - 13 days from diagnosis till death. It was honestly like something out of a badly made movie, where the volume was turned up too high and there was too much drama, not enough breathing space. She was totally fine, and then she was in hospital with four kinds of cancer, and then she was in a morphine coma, and then she was gone.

During these intensely stressful, disbelieving days, my diabetes didn’t go on holiday. I wish it had! I urged it to take a break and leave me alone. But no, it stayed by my side, ever present, demanding attention and care when I had none to give.

At the time I was finger pricking (not yet using the FreeStyle Libre) and injecting (MDI, as I still am), so there weren’t many patterns I could find - especially amidst the chaos. During the day, I was so preoccupied with all the details we had to figure out to help my mom (and the rest of my family) that food was functional. I love eating, so food is usually a real pleasure and something I look forward to, but I went into survival mode and just ate whatever was there and wouldn’t spike my blood sugar, and didn’t take that long to prepare.

At night, though, the adrenalin that had been coursing through my body all day suddenly left - able to relax for a few hours. And you can probably guess what happened then: sudden, violent lows. Every night, in the wee small hours, I would wake up with my heart racing, desperate to eat something, anything. I started injecting half my dose at dinner time, and eating carb-loaded meals that I usually didn’t indulge in: lasagna followed by fruit followed by chocolate. Still went low. It was as if the strength and volume of the stress during the day needed an outlet in the middle of the night, and that outlet sent my blood sugar crashing.

The side effect of this, of course, is that I was awake at 2 or 3 or 4am - the worst time of the night to be awake, especially when all you want to do is forget what life is throwing at you. I could fall asleep fine (thanks to Sarah Blondin meditations on Insight Timer), but staying asleep became a battle - as soon as I was awake, I was awake, running through the horror story of my mom’s rapid decline on repeat. The night lows persisted until my mom died, and then my grief took on a new shape.

Chronic stress response

For months, my blood sugar stayed high. Literally, months. Things that had worked before - meals and insulin doses - suddenly didn’t work any more. It was like there was a barrier to normal blood sugar, and that barrier, it turns out, was cortisol.

I didn’t know this at the time, of course. It was only when researching my book, The Grief Handbook: A guide through the worst days of your life, that I realised that grief is a chronic stress response. We all know what happens to our blood sugar when we’re stressed - it goes up, and it stays up. That’s because stress used to be a response to a sudden, urgent danger. A lion is chasing you! Flood the body with cortisol and other stress hormones! Escape! And then relax. But there’s no escaping grief - it is a constant, daily reminder of what you have lost and what you can’t ever get back.

Coupled with this, for me, was extreme fatigue. It’s a common physical side effect of grief, and one that left me listless and uninterested in doing exercise of any kind. Exercise is a superpower when it comes to blood sugar control, particularly during times of stress, but all my usual methods no longer worked for me. Yoga had too much silence, too many still moments to reflect on how much I missed my mom. Hiking required too much energy, and the chance of seeing other people when I didn’t feel up to socialising. Walking was okay, but it was more of a trudge than a walk, if I’m honest, and that wasn’t enough to really rid my body of the stress it was carrying. What worked, for me, was gardening - even if it wasn’t much exercise, it got me outside in the fresh air, planting seeds of hope in the future.

But that came later. At first, there were just days and days of high blood sugar - with all the tiredness, irritability and high emotions that come with that.

Lingering malaise

Before my mom died, I didn’t realise how much motivation and care I was putting into my diabetes. I knew it required self discipline to eat the same thing for breakfast and lunch most days, and that figuring out carb counts and injecting at least 20 minutes before I ate was a bit of a hack, but I didn’t realise the sheer energy it took to keep doing this - consistently, day after day. Until I had no energy to do it, and saw the results.

The trouble is that when you’re in deep grief, you don’t care. Your appetite goes, your interest in life goes, your motivation to look after yourself goes. I was forced out of bed by my two young kids (almost-5 and not-yet-3 at the time), and I knew I had to keep injecting and testing my blood sugar and eating somewhat healthy food, but I just didn’t care any more. This lingering malaise is a common aspect of grief, and can be crippling when it comes to diabetes… We all know what happens when you don’t give diabetes the attention it demands - it shouts louder. Highs and lows, blood sugar rollercoasters and mood swings, exhaustion piled on exhaustion. It’s the pits (literally). Especially because life doesn’t stop just because you’ve lost someone. It doesn’t even necessarily slow down. I still had to wake up every day and do my work for Sweet Life Diabetes Community, South Africa’s largest online diabetes community. I still had to parent. I still had to survive.

And so, one day, I realised I had to snap out of it - at least the diabetes part of it. I had to get back on track and start doing the things I know I need to do to get the diabetes control that lets me forget about diabetes a little more. Ironically, it’s when I take the time to tend carefully to my diabetes that it disappears into the background for me - it becomes just another aspect of life, rather than a wailing infant demanding attention.

One day at a time

If you are in grief at the moment, I see you. It is so hard. So unbelievably hard. While it doesn’t ever get better (as in, completely better and totally fine), it does get easier to live with - as all things do, diabetes included. One day at a time or, if that feels too hard, half a day at a time. You can do this, I promise.

- Bridget McNulty (@msbridgetmcnulty), co-founder of Sweet Life Diabetes Community (@sweetlife.org.za)