LIFE WITH T1: GETTING REAL

When Jody O’Callaghan told her type 1 diabetes story on a national news site, she was unprepared for the huge response.

As a stuff.co.nz journalist, Jody is well versed in writing about other people’s struggles. But putting her own story out there, about a lifechanging event in her own family, was new.

To mark Diabetes Awareness month, Jody wrote about the day in mid-2020 when she was hit by a sudden, severe blood-sugar low while at home in Christchurch with her two preschool daughters.

She collapsed, unconscious, on her kitchen floor, with a cake cooking in the oven.

Her daughters spent nearly two hours trying to wake her up every way they could think of, to no avail. Then, says Jody, “By a strange twist of life-saving fate, my husband decided for the first time ever to come home from work early that day.”

Her husband Ben remembers, “I knew something was up right away when my two-year-old came rushing into the garage, literally as I was driving in. She was hysterical, asking me to get inside, saying, ‘Mummy fall over, mummy fall over!’

“When I found Jody on the floor, I knew straight away it was a low.” He called an ambulance, then Jody’s mother. “I had no idea how long she’d been out for, so I went straight into getting sugar into her.” He was desperately scared, but trying to remain calm for his daughters. “It took ages for Jody to come to, and the ambo was taking a while.” In fact, Jody’s mother, who lived 45 minutes away, got there first.

By then, Ben’s efforts had roused Jody, but she’d been unconscious and sweating for so long that she’d become hypothermic and had to be taken to hospital.

A NEW LEAP

A few days later, Jody was back at work and helping a colleague with a medical story. She offered to ring a health professional she had known since her diagnosis with type 1.

Jody says, “He asked, ‘How's your health?’ and I told him about the incident. He said, ‘no, that's not good enough’.”

Soon after, she trialled the Freestyle Libre. Jody had been interested in diabetes technology for years, but this was the first time she’d had the opportunity to try anything out.

“I used the Libre for a month or so, and it was great. But, at the end of the day, it didn't do the one thing that we needed for peace of mind, which was sending bloodsugar alerts to my husband and anyone else when I’m home with the kids.”

The Libre was already an extra financial outlay, but Jody and Ben decided that, because they were able to, it was worth it to take the leap, pay more, and get a Dexcom G6 instead.

The Libre is a flash glucose monitor (FGM): it gives you instant blood-sugar readings with the swipe of a scanner. The Dexcom G6 is a continuous glucose monitor (CGM): it automatically reads your blood sugar every five minutes and sends those readings to any device you have it linked to. Crucially, it can also be set to send out customisable alerts when your blood sugar is heading out of your target range. Jody, Ben, and Jody’s mother now all have access to Jody’s alerts. Jody says that on more than one occasion she’s had to reassure her mother over the phone. “I go for a run or I'm doing exercise, and it starts to go low, and she calls me. I’m like, it’s okay mum, I'm just trying to get on top of it.” She laughs. “Mothering doesn't stop!”

She sees the occasional overworry that others might have about her as all part and parcel of the new security the Dexcom has given her. “It’s a huge relief.”

She also admits she could imagine doing that kind of worrying herself if either of her own children had type 1. “It’s that parental thing. You want to take it away from your children, don’t you – take their suffering away … I still remember Mum and Dad blaming themselves when I was diagnosed, silly as that sounds.”

Her concern for her own health is also deeply tied to her role as a parent. Looking back, she thinks she had a “she'll be right, it's fine” attitude about her hypos. “You get used to it being just a reality, which is awful, but you kind of dismiss it.

“Probably the best control I ever had was when I was pregnant, because you're trying to do the best for your baby's health. But then, after that, you’re like, oh, the baby's out. It's only my body. It's not the baby anymore. You let it slide.

“But after the incident where I collapsed, I thought, you know what? This is scary what could have happened. It’s not about me anymore.”

The combination of parental instinct and living with type 1 diabetes flows through to family life in other ways, as well. “I’m always on the watch because, technically, there’s a higher likelihood of my having kids with type 1. So, it could be something silly like they’re just peeing a lot in a day and I’ll finger prick them and they think I'm trying to hurt them. ‘Why are you doing this to me?!’

“I guess it's made me an apprehensive Mum, a wee bit. I watch their health like a hawk.”

TOUGH DIAGNOSIS

Jody was diagnosed with type 1 when she was 14.

“Because I was so newly diagnosed, I didn't really understand what my body was doing. Also, when you're a teenager, you want to fit in as much as possible; you don't want to be different.

“I remember sitting through school exams and not knowing why I was just staring at a page or writing squiggles and feeling funny.

“And I was sporty – that was my thing. I was in a touch team, and we always went to nationals. We were competitive.

“You don't want to stop a game or run off the field because you're going low … There were times when I didn't actually know I was going low. But I also remember a national final, and someone threw me the ball right on the try line, and I dropped it. I felt so low, but I was embarrassed, and I wanted to hide it.

“If I’d had something like a Dexcom, my parents on the sidelines would have known to get me off the field and deal with it.” Thinking back now, she says there are “just all these little things that I know would have changed my life completely. There are so many times during my life where I was just hanging by a thread … but that's your reality.”

Jody dreamed of becoming a marine biologist but realised her science marks wouldn’t be high enough to get her there, so she changed tack and trained as a journalist. “I haven't looked back. I absolutely love it.”

A REPORTER’S LIFE

“It’s people, really,” says Jody. “That's the reason I do it. I’m grateful every day that people tell me their stories. Sometimes you’re sitting in someone's house, and they’re telling you the most amazing story, and you're like, Gosh. How lucky am I? You know?”

The life of a reporter is notoriously high-stress and allconsuming, and Jody says that, especially in the early days, it could be challenging to manage her diabetes while working. “When you're a junior reporter, you’re pretty much sent out to do whatever. So you could end up getting sent out to, for example, a shooting, where you’re literally out all day standing on the street.

“That definitely had its challenges in the past … realising that you've been sent out with no food, no lunch, and then you're expected to stay there all day. If you don’t think fast enough to grab a snack and put it in your bag, then you can get into a tricky situation. And I have the kind of personality where I’d rather just push through and not make a big scene, which can get dangerous as a diabetic.”

She found that letting her workmates know about her diabetes was all important.

“I was at the Manawatu Standard when I was in my early 20s. I remember having a really bad low in the middle of a meeting and I started jabbering and stumbling around, and everyone was like – what's going on? But a colleague who knew me quite well ran and got some sugar. If they hadn't known, that could have gone quite awry.

“I was a court reporter as well. That used to be a bit of a challenge because in the middle of a court session you can't eat, so I used to have to sometimes get up and leave.

“I remember covering a really intense murder trial for quite a period of time, and they came to talking about a crucial part of evidence, and I was just scribbling on the page, not even with it. I had to stumble out of the courtroom and try and deal with that.”

In the end, she began staying in the courtroom and subtly eating Mentos to raise her sugars.

BETTER CARE NEEDED

Jody is on the Advisory Council for Diabetes New Zealand, and says that, despite everyone’s advocacy and campaigning, “I have found it frustrating to see the complete lack of government interest in CGMs.

“But then, I sort of feel like this has been the frustration right from day one of my diagnosis. My mum has forever been banging her head against a wall advocating for me, and it’s not changed.

“I remember, in 2002, the movie Panic Room came out. Jodie Foster is in it and her daughter has type 1 in that movie. We're talking 20 years ago – and she has a watch telling her what her blood sugar is!

“I remember watching that at the time and thinking, wow, that's so space age. How cool is that? And I was all excited because I thought, that's obviously going to come to us soon.

“How long have we been waiting now? And it’s still not readily available to kids. It's just really disappointing. As much as we have a great health care system, when it comes to long-term illnesses, the technology and funding is minimal.”

Jody supports calls from organisations such as Patient Voice Aotearoa to reform Pharmac and allocate more money to pharmaceuticals in this country. “I know that there are so many other illnesses battling to get life-changing funding, as well.”

“But why is it taking so long for technology to come? I mean, we can jump on a plane and be in America in a matter of hours, and yet the amazing technology they’ve had at their fingertips for diabetes, for 20-something years, has never become readily available here. Why is that, and why is that okay?

“Being on the Dexcom has made me learn so much about my own body that I'd never known in the previous 20-plus years of having diabetes. Even just with my husband, I'd get grouchy with him, and he would be like, where did that come from? Now I know that I can correlate it to blood sugars. When my blood sugars are high, I'm a little bit irrational … It's such important information.

“I’ve also learned a lot during my time on the Advisory Council, and on Facebook groups, about type 2 diabetes. It’s easy to grow up feeling like type 1 is being ignored and all the government funding goes into type 2 preventative measures and campaigns. But now I realise that people living with all forms of diabetes face similar challenges.

“It’s time the Government and Pharmac do what they can to make living well possible for all of us – type 1 and type 2.”

TELLING HER STORY

It was with all these thoughts and feelings in mind that Jody finally decided to give the general public a warts-and-all glimpse of her life with type 1 diabetes and tell her story on Stuff.

Responses poured in. The messages of support included people telling her they’d never understood what it was like before – even people close to her – and others, who themselves lived with diabetes, saying that it had been affirming to see their experiences reflected, and that she’d inspired them to take advocacy action.

“It’s been overwhelming actually. I never expected it. Like I say, you kind of have this blasé attitude about your own illnesses. It's reality and you accept it, and you try not to think much of it. But when I wrote that down and saw people's reactions to it – that's when I realised the magnitude of it ... Sometimes, it's not until you see other people's reactions to what happens to you that you realise how serious it is.”

SOURCES

www.stuff.co.nz/national/health/300153315/mypreschoolers-spent-two-hours-trying-to-wakeme-from-a-diabetic-coma http://letskeepmoving.org.nz/

When Jody O’Callaghan told her type 1 diabetes story on a national news site, she was unprepared for the huge response.