Sandra's story: continuous glucose monitoring has been a miracle for me

• Diagnosed in 1961, aged 13.
• Has a family history of the condition and her own daughter, Hannah, was also diagnosed with type 1 diabetes aged 10.
• Has ‘brittle’ diabetes, which she now manages with the help of Continuous Glucose Monitoring.

Emotions

I’ve lived with diabetes for 57 years. It was very different to what happens nowadays. I was in an old hospital and there were two consultants interviewing two separate patients when I was told with my mum. It was all a big blur, really. 

The main thing I remember is I was put onto an adult ward. The nurse came round and asked if I wanted a cup of tea. I’d always had sugar in tea, but when I said, ‘yes please,’ she replied, ‘well, you’ll never be able to have sugar again in your life, so you may as well start now!’ It was tough love. 

The very first injection I ever had, it was the same nurse who arrived with the syringe. She said, ‘well, you’re going to have to do this for the rest of your life, so you might as well start it now.’

My grandmother and aunt were both type 1, so my mother had experience of it. Obviously she was still phased, and I think she felt guilty. But at least she knew a little bit about diabetes. I was an inquisitive child and wanted to know more about the condition. The nurse came along and gave me an A5 piece of paper about diabetes. It had very small print. She said, ‘you can look at it later.’ I said, ‘no I want to look at it now.’ But it was all I got. 

When my daughter, Hannah, was born, I was allowed to hold her briefly, but then she was taken away and for two days to the special care baby unit. I couldn’t see her. The nurses took photographs, but it was hard. Then, after she came back to me, she needed blood tests to check her blood glucose. When they pricked her finger, this tremendous feeling of rage came over me. I thought, ‘how dare you hurt my baby?’ It was a bonding moment.

When I was first diagnosed, I was put on an almost starvation diet of 15g of carbohydrate for breakfast, lunch and dinner. So 45g of carbohydrate throughout the day. 

When I went to college at 18, I went to a different hospital. They were completely taken aback at how restricted my diet was. They took me into hospital and stabilised me. Of course, there were no blood glucose monitors in those days. You dropped five drops of urine and ten of water into a test tube and then dropped in a tablet.

It fizzed up and went in a range of colours from blue to orange and that was the only way you knew what was going on. But the urine could have been in your bladder for four or five hours, so it wasn’t an immediate result. 

The biggest difference is having Continuous Glucose Monitoring (CGM). I paid for Hannah to have it during her pregnancy as well. That’s made a huge difference. Bristol won’t fund CGM for pregnancies, which I think is not good. Research shows that if you use CGM you have a more successful pregnancy. Being able to know your blood glucose 24/7 is incredible. For me, weekly blood tests and urine tests were all I had. That’s the biggest advancement that’s been made.

Hannah had to have an emergency caesarean and she was alerted to the fact things weren’t going right by looking at the patterns on her CGM. It’s an absolute miracle. It really made a difference. I was flying blind really. When I went to the clinic, my blood sugars were often high, which I think was sometimes down to the stress of being told off about it. Now, with CGM, you can see the patterns and what’s causing you to go high or low. 

I’m involved with diabetes support groups and I’m a Diabetes UK Service Champion. One of the things that I think has changed over the years is that there’s more stigma attached to diabetes because of the emphasis on type 2 and prevention. People don’t realise that the two types of diabetes are quite separate.

I’m a member of a type 1 group and people are tired of being told, ‘it’s your fault, you’re too fat, you should be eating less sugar.’ Stigma is a real problem and I think it has increased. I didn’t used to get that.

Many health professionals don’t help because they say, ‘you can prevent diabetes’ – they don’t say ‘type 2’. So that’s something that I’m really working on with the local Clinical Commissioning Group, about trying to raise their awareness about being sensitive to language as well as working with them to improve care for people with all types of diabetes.