After nearly 40 years with Type 1, Kate’s life has been revolutionised by new diabetes technology. But like a lot of other people living with the condition, access to it is a postcode lottery.
I was diagnosed with Type 1 diabetes in February 1979, aged 9. Things have changed so much since then. In those days, nobody talked about it. I didn’t tell anyone I had diabetes because I felt really embarrassed about it. Even as a child, it didn’t feel like a very glamorous condition to have. If people did find out, their reaction was: ‘Oh, Kate’s eaten too much sugar’. The stigma was hard to deal with.
There was no monitoring at all of blood sugar levels for the first 10 years that I had diabetes. Instead, I used to test my urine instead, using a test tube, water and a big blue tablet. If it went orange I had a high sugar level, but it was impossible to know how high, and if it stayed blue, I didn’t. If the result was high, I felt it must be because I’d been naughty. There was so little understanding of the condition.
Embracing diabetes technology
Nine years ago I got a pump and that massively changed my life. Before then, I was regularly having unconscious, night-time hypos. I’ve only had two since. And six months ago, I started using a continuous glucose monitor (CGM), which has been brilliant because it alerts me when my blood sugar is rising or falling rapidly. This means I can take immediate action to prevent dangerous hypos or hypers. The CGM links to my pump and suspends insulin delivery if blood sugar readings fall dangerously low.
But because the technology is not available in my area, I have to self-fund it so I’m feeling the effects of the ‘postcode lottery’. Since it costs £50 a week, I probably won’t be able to afford to pay for it much longer. It’s frustrating because technology like this has been so liberating for me and it actually saves the NHS money. When I fall unconscious from a hypo, I tend to need an ambulance, which costs much more.
Before I got the CGM last year, I started running for the first time in my life. One day I went on a run and then tested my blood sugar as normal when I got to work. I thought everything was fine, but then I got called into an unexpected meeting and forgot to take my blood glucose kit and a hypo treatment with me.
One of the side effects of having diabetes for a long time is that you lose hypo awareness, so although I was going low (hypo) in the meeting, I didn’t realise it. I vaguely remember walking out of the meeting room and feeling like I was walking on sponge. And, looking back, that’s always how I feel when I’m really low. The last thing I remember was getting back to my desk and sitting down.
Fortunately, everyone at work knew I had diabetes, so they called an ambulance. I woke up on the floor and there was a paramedic with me who had injected me with Glucagon. But, rather than giving the glucose (sugar) time to work, the paramedic insisted on injecting more Glucagon until the blood glucose meter read 5.5mmol/l. It wasn’t her fault – she was just following her guidelines – but my blood sugar level ended up reaching 28mmol/l as a result and I felt very unwell. The fact that you have to give blood sugar levels time to rise after hypos is often overlooked.
Having a pump these past nine years has also made me realise how much technology can help when you’re pregnant. I had a really tough time when I was pregnant with my daughter Caroline, who’s now 21. I was very careful with my diet, but would often go hypo with no warning at all. Then, when I was seven months pregnant, my blood pressure went really high. I developed pre-eclampsia and within seven hours, she had to be delivered by emergency caesarean. We both nearly died.
When Caroline was born, she weighed 7lb 11oz. A lot of that was water, but she was clearly a baby from someone with diabetes because of how big she was. She’s had some challenges but is doing well now and is studying medicine at university. I’m incredibly proud of her.
Every day is a new day
I’d like to say I’m used to having diabetes, but every day is a new day. You can never rely on thinking, ‘I felt really well yesterday and that’s because I didn’t eat breakfast until 10 o’clock, so if I do that again, I’ll feel the same.’ It doesn’t work like that. Every day is different.
It’s like having a Siamese twin who is with you all the time, but doesn’t always want do what you want to do. Sometimes I feel unwell, but I’ve learned to respect the bad days along with the good ones. Technology has definitely reduced the number of bad ones.
I’m very fortunate. I’m 48 and I’ve done lots of interesting things – including backpacking alone across South East Asia a couple of years ago. My other half jokes that I may be ‘wired to a box’ but I never let diabetes hold me back.
In 2008, at the same time as I got my pump, I got elected onto Diabetes UK’s Council for People living with Diabetes, which was the first time I met other people with Type 1 diabetes. It was liberating and life-changing. Since then, I feel like I’ve really grown and owned my diabetes, rather than trying to hide it and be normal. Who wants to be normal anyway?!
I was on the Council for six years and in that time I got to hear about new things that were happening, new technology and what Diabetes UK was lobbying for. It was great knowing that someone was on my side.
In the future I’d like to work to raise awareness of diabetes. This includes completing my Masters in Nutrition so that I can help people understand how food affects diabetes management. I’d also love it if CGM was available for free to people with Type 1 because it’s fundamental for managing blood sugar levels.
My advice for other people with diabetes is to own it and not let it hold you back. It’s yours – take responsibility for your own happiness and your own life. Be well, be happy and do everything you want to do.