Pauline's story: getting misdiagnosed and learning to manage type 1 diabetes

Hear from people sharing their experiences of trying to eat and live well with diabetes in our brand new podcast series, Dining with diabetes. 

Pauline has had type 1 diabetes for over 10 years. At first, she feared she was going to have to stop drinking alcohol or treating herself to the occasional cake. But in this episode she shares how being properly informed - and using the latest diabetes tech - helps her enjoy what she eats without spending too much time on the detail. 

If you enjoy this episode, you can also listen to Snita’s story about dining with type 2 diabetes. And you can hear more from Pauline about her journey below. 

Back in 2010, just before my 40th birthday, a routine blood test showed I had high blood glucose levels. My GP asked me to change my diet and to take up more exercise. I was a little overweight at that time, but didn’t think much of it. I went back to the GP after three months and I had lost a bit of weight. The bloods were taken again and showed no improvement in my HbA1c. It was then that my doctor told me I had type 2 diabetes. I was shocked. How could this have happened to me? I was put on metformin and I saw a dietitian and off I went and tried to come to terms with the diagnosis and what that was going to mean for me.

Things went well initially but the next year, I had been on holiday in Florida and when I came home I felt really sick. I had been bitten by an insect and the bite had left a mark about the size of saucer, which I knew wasn’t right. I went to a walk-in centre near work, told them what had happened and said I had diabetes. The nurse tested my blood glucose and it was so high the meter couldn’t read it. She said I had to go to A&E straight away.

After arriving at A&E I was admitted to hospital where I stayed for four days until they could bring my blood glucose in to range. Thankfully I went in before DKA had set in. The consultant who saw me on the ward told me that my diagnosis was now type 1 diabetes. This was an even bigger shock than the original diagnosis. Now I was going to have to inject multiple times each day. It hit me like a freight train and I was really scared. When I went home and did my first injection, there were tears.

Soon after my stay in hospital, I looked up the Diabetes UK website as I wanted to get as much information as I could about my condition. I became a member, and bought books from the online shop. I also joined the online forum, which was such a help in those first days not knowing what to do. I was having issues with my GP who didn’t want to change my diagnosis on my records and I wanted to be seen by a consultant at hospital, so I called the Diabetes UK Helpline, who advised me how to get my care transferred to hospital. That call was one of the best things I did, I managed to get my care transferred, and haven’t looked back since.

My team at the hospital are great, they got me on an education course for people who are newly diagnosed with type 1 about six months after my diagnosis, which was so helpful in coming to terms with my condition. I learned invaluable tools, like what to do when you are sick and I also met up with other people living with type 1. I knew I wasn’t alone. It was great at lunchtime as we’d all pull our meters out and test before eating! I’m still in touch with some of the people I met now and we catch up about our diabetes.

I knew I wanted to use an insulin pump and my team were all for it. I got my pump about 18 months after diagnosis. The pump has been a godsend to me, I know it’s not for everyone but I find it so helpful and don’t mind being attached to it at all. Last year my consultant approved me for a flash glucose monitor (Libre) trial and I now have that on prescription too. I feel very fortunate to have such a great team looking after me.

The past ten years haven’t all been plain sailing. There have been times, when having this condition has been tough. There are times when I want a day off from the checking of numbers, calculating the carbs in my meals. Mentally it’s hard. Physically it’s hard too, hypos can leave me feeling shaky for hours. Constant worrying about my health is draining. But I carry on, as we all do. I’ve had to come to terms with living with a long-term health condition, it’s not easy, but some days are better than others. You have to take the small wins when you can.

When I arrived home from hospital I was worried about how much insulin I was going to need to take. It was all trial and error to start with. I had my first hypo alone, and that was scary. I called my husband who came home from work to be with me, and throughout my ongoing journey with diabetes he has been so supportive. I started carb counting initially through advice from the online forum. It’s trial and error in the beginning, especially when I was using pens as you can’t do very small doses like you can with a pump. I think carb counting has been one of the most beneficial things for managing my diabetes along with managing my insulin to cover food before eating. 

Useful resources

The best source of information for me in the early days were the books I purchased from the Diabetes UK online shop, I’m a keen reader anyway and I wanted to take in as much information about the condition as I could. Forewarned is forearmed as they say. I’ve tried to be proactive in managing my diabetes, I try not to let it control me and one way for me to combat that was engaging with people online, I use Twitter and have a group of friends there I can chat with about diabetes that’s been so helpful for me. I also went to a local group although found the focus to be a bit on the type 2 side.

In 2018 I started a master’s degree in History of Science and Medicine that I did part time while working. I wrote my dissertation on diabetes in the post-insulin era, something I probably wouldn’t have considered doing had I not been diagnosed with the condition myself. I’ve been working as a fundraiser for Diabetes UK since 2014, and took over managing the membership team in 2018. I love my job, being able to raise funds for Diabetes UK gives me a great sense of satisfaction. Knowing that all of our dedicated supporters and members are helping us to achieve our mission and assisting with our vital research in to all types of diabetes, gives me hope for the future, for all of us out there living with this condition, that we may finally find a cure.