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Home > Knowledge & support > Resource hub > “I’m not checking my phone constantly anymore”
“We called for an ambulance in the early hours of Christmas day. The paramedics smelt her breath and asked if she was diabetic and I said not that I know of. They did a finger prick an then we got blue lighted off to our local hospital where Thalia was admitted into intensive care. She spent Christmas day and about five days afterwards in the hospital.
Life went from being carefree, worrying about whether Thalia has her lunchbox and things that don’t really matter, to having to carry around this really valuable medical kit. Life was quite stressful, and everyone kept saying to me ‘I don’t know how you do it’. I found that really overwhelming. I was just doing it because I had to. There are real consequences if we forget things now.
I don’t want to be a nag or an overbearing mum but I want to make sure she’s safe so I’m always asking questions, looking at the device, looking at the phone and looking at levels. Sometimes when Thalia goes low, she has a seizure. One day we had given her a correction, which resulted in her having a seizure and I felt terrible. Thalia was trying to make me feel better about it but I’m the mum – she shouldn’t have to do that. You’re always wondering if you’re making the right decision.
Type 1 technology came about a year after Tara’s diagnosis. We had the Libre first and then we moved onto Dexcom. Glucose monitors changed things completely for us. I would never want to go back.
Over the summer holidays we started transitioning responsibility to Thalia to manage her own levels. Previously, Thalia’s levels were on my watch, my two phones, my tablets and now it’s just on my phone. I don’t want Thalia to kick me out completely, but she is 11, so she’s now carb counting herself using the full Carbs & Cals app and changing all of her devices herself.
We recently went to a theme park. It was very hot and I told Thalia that I thought she was going to go high. I wanted to give her a correction. Thalia said that she didn’t think she was going high and asked me to trust her. She came down by herself and that made me realise that she knows her body and has hypo awareness. I wouldn’t override a decision that she has made now. I trust her.
I found out about HCL through LinkedIn. There was a NICE consultation that I completed and I started taking an interest after that. We wanted it as it felt like the next stage to us.
Thalia has had a few serious hypos and has even fallen over in the road. I wanted her to have the best possible introduction to secondary school, which started in September 2023. If we could take a tiny bit of that stress away, we wanted to do it.
The set up, which was virtual, couldn’t have gone any better. We’re now a week in and we’re having to trust the system and not do anything. There are positives already. I’m not checking my phone constantly anymore; I’m sleeping though without one ear open. We’re just about to have dinner but she’s high at the moment and if we were on the old set up, we’d be trying to do something about this but right now we’re doing nothing.
I find it incredible to watch Thalia’s levels going up and down and up and down by themselves. The technology is amazing. We’re definitely not going back.
I would recommend this 100% to others. I think everybody should be able to access this tech free of charge when it’s needed.”
“It’s good but it doesn’t do everything
One thing that surprised me was that when you go low, HCL doesn’t bring your blood sugars up again. You have to do that yourself! The other day I went low, I thought it should have bought me up, so I didn’t do anything about it I didn’t have any glucose. I was surprised that I had to treat myself.
I don’t have to treat myself in front of others
When I had to manage my type 1 in public before, people would look at me and ask what I was doing. Now I can just look at my Apple watch and, unless I’m low and need glucose I don’t have to do anything.
I don’t like having to explain what type 1 is all of the time over and over again. I don’t like people noticing. I know how to explain it, I just don’t like doing it, especially to younger kids who don’t get it. The hybrid closed loop system means that I can keep it to myself a bit more.”
Find out more about hybrid closed loop technology, also known as the 'artificial pancreas'
Find out about the devices that help you take the right amount of insulin at the right times, and devices that help you measure your glucose levels throughout the day
“The long-term health benefits of screening outweigh the short-term stress” – Cerilyn tells us about her experience of finding out her daughter is in the early stages of developing type 1.
Rebekah’s story: “I had no idea that having one autoimmune condition makes you more at risk of getting others”
"Type 1 doesn't get in the way of my sports at all. It's something I just try and manage as best I can."
Maddie Bonser, JDRF's Research Operations Officer, talks about growing up with a brother who has type 1.
Our research is improving the lives of people with type 1 and making strides towards a cure. We’ll keep pushing until we make type 1 diabetes a thing of the past.
