Carole's story: managing LADA using flash glucose monitoring

When I was diagnosed, I already I had an understanding of diabetes because of my family history. When I was a teenager, my little brother was diagnosed with type 1 diabetes at the age of 11. He first started to have diabetes-related complications in his late 30’s and died after his legs were amputated at the age of 52. My father also had diabetes and was diagnosed later in life like me. He sadly went on to develop kidney failure and spent a few years on dialysis before he passed away. Both my nephews (my brother’s children) also have Type 1 diabetes. So when my GP told me I had diabetes, I wasn't altogether surprised. You don't have as many years ahead of you to cope with it I suppose, but it's still traumatic, and although I wasn't surprised I was terribly upset.

In the beginning, I was tested for high glucose (sugar) levels and told I had type 2 diabetes. I was put straight on tablets but was still getting worse, and my kidney results were getting a lot worse. Because LADA has a slow onset, it took about three years to diagnose me with Type 1 diabetes. In the end, I got so fed up and frustrated that I said to my GP ‘you know, I think I need to see a consultant.' My autoantibody test was of course positive, and it had been Type 1 diabetes all along.

I was obsessive about my levels before my flash glucose monitor, just because of my family history. I didn't want to end up like that. It's much easier with a monitor because you can test in an instant. I'm much more relaxed for sure, and it's helped me enormously. It's helped me relax because I know I can check and follow it. Although patterns are hard to find, I can spot some. And with my monitor, I can track them.

I wish someone had told me that when they give you your pile of insulin and needles and send you away, that every single day would be different. Although they give you a booklet, it's very understated. I wish someone had sat me down, looked me in the eye and said don't expect to have complete control of this.

I always try to encourage people I know to be upfront about their diabetes. Diabetes is hard to manage, and the more help you have from the people around you, the easier it is. I think it's easier if you can be open and honest about it and the challenges you face. I've trained my husband what to say if I have to go to the hospital, and he knows when something's wrong. But it's difficult because people don't understand diabetes. They think we take insulin and that's that. Even me – growing up, I thought I'd be able to manage it. But understanding that you deal with it as best you can, facing up to it, and being open and honest is a help.

Travelling

I'm going on holiday soon, and I always take enough insulin and my cool bags. I take extra supplies, like more insulin, monitors, glucose tabs and even some test strips. It means if anything happens to my monitor and spare, that I have a way of testing my blood glucose. I'm more nervous about where I go now, I don't go anywhere too remote.

After my diagnosis, Diabetes UK was my main source of information as I got very little from anywhere else. Although my GP told me about a monitor she'd seen on someone else, neither she or the nurse knew what it was called or much about it. So I called the helpline, and the chap at Diabetes UK told me the name of the monitor and all about it. I googled it when I got home, bought the starter pack and have been self-funding it ever since.

Carole's perspective

One of the most challenging things in my life is it's very busy, and I'm out and about a lot. I also travel a bit, and I don't want my diabetes to interfere with that. But there is a nervousness, which comes partly with age, with having diabetes and the amount of prep I have to do when I go anywhere. I find it much more difficult to eat out because I never know what's in the food. But I think the most challenging thing is just managing it through the day and night and maintaining a reasonable level.

I think of my brother and my dad, who were on dialysis for several years and their treatment cost the NHS a lot of money. I'm not saying that I know the flash glucose monitor would've prevented them having these complications, but it would've helped lower blood sugar levels. I think the monitor is a way of achieving better control. The whole focus should be to reduce complications because that's the crippling cost.

To fight for better access to flash glucose monitoring across the UK, join our flash campaign.