“After 55 years of living with T1D I usually know how my body responds”

I went to the doctor and was tested for diabetes amongst other things. To be tested for diabetes then, you had to stay in the hospital for the day and drink a load of liquid glucose, and they would test your pee throughout the day. I was told I didn’t have it at first. I went back to the hospital again a few months later because I was still really unwell. They ran the diabetic tests again. When I went back for the results a few days later, they said I was diabetic.

At first, I was still producing some insulin, so they put me on tablets – I have no idea what they were. I was newly married and was told that if I wanted children, to do it quickly, because diabetes might affect my fertility. I got pregnant right away and started taking insulin during pregnancy, which made me feel better. I was in hospital for nearly three months.

There was no type 1 in my family so I didn’t know anything about it. When I was told I was type 1, I started crying. The doctor said: “Stop making a fuss, there are people worse off than you!”

A lot of change

The knowledge just wasn’t the same back then. For testing your blood sugar, you had to pee into a jar, decant into a test tube, and put in a tablet to see what colour came up. That would tell you what your levels were hours ago. One of the biggest changes I’ve seen is being more aware of your blood sugars. Finger-pricking kits came in around the mid-1980s, but you couldn’t get them on the NHS – you had to buy them. I received my first finger-pricking kit as a Christmas present from my mother-in-law.

Another change is the collaboration with medics. When I got pregnant, one consultant said to me: “You silly girl, what are you doing getting pregnant?” That wouldn’t happen today. In the 1970s I saw Dr Joanna Sheldon, a leading light in the field. She was a sort of inspiration to me and helped embed my approach to my type 1 diabetes. The patient does know a lot. After 55 years of living with T1D I usually know how my body responds. The new technologies are superb, and one of the reasons I’m here today, but being able to work together with the diabetic team is important.

I feel fortunate I was 27 when I was diagnosed; I think it’s hardest for adolescents. I worked at Brighton further education college and often supported young people with type 1 who’d ended up in A&E.

Menopause and T1D

Menopause wasn’t too bad – though sometimes I wasn’t sure if I was having a hot flush or a hypo. Back then we didn’t talk about menopause or sex – I was a child of the 60s and newly married when I was diagnosed, but sex was just not discussed by medical teams. I campaigned for that to change. People need to know that exercise doesn’t just mean walking. My husband used to joke: “How many biscuits are you having tonight?” 

Type 1 technology

Another big stride forward has been the pump. I was first on Omnipod and a few years ago went on the Tandem t:slim hybrid closed loop pump. I always want what’s on offer. It took me a while to get used to the catheter and tubing – I have some difficulty with my hands. I began using it during Covid while caring for my husband, who had cancer and dementia. Getting used to the new kit and caring for him was overwhelming at times. I remember seeing how stable my blood sugars had been overnight and showing my husband excitedly; I feel emotional thinking about it.

The hybrid closed loop has been phenomenal; it’s very clever. But I get irritated when people say, ‘It’s all done for you’, because it isn’t; it’s still a lot of work. It’s important to have a good medical team in place, and not to panic when something goes wrong. I’ve had to call the Tandem people, such as the first time when the pump went out range. I think there will be some older people who it might not suit, as keeping up with technology is not for everyone.

I don’t think the hybrid closed loop has majorly changed my lifestyle because I’ve always watched what I’ve eaten, kept fit, and looked after my health. I don’t know if I would have done that if I hadn’t been a diabetic; I’m not a natural rule keeper. There is less to think about with the hybrid closed loop – it’s amazing to see blood sugars on my watch, or deliver a bolus on my phone. When I was diagnosed, it was essential that I ate on time and couldn’t miss meals. Today I can usually eat what suits the whole family, and administer my insulin as I start eating.

I do some work with student medics, and once did an exercise where I was asked if I could have one wish, what would it be? I wished to not be diabetic for a month. Later I thought, why didn’t I ask to just not be diabetic? I now reason that I fancied a break, and being a type 1 diabetic is simply my story.