A year ago, Seth went on an insulin pump. To him it means he can go to his friends’ houses for tea without us having to be there or rely on other adults. It’s given him so much more freedom and he’s got really good control of his blood sugar.

Peace of mind

Seth’s also using a Dexom CGM which has taken a lot of our worry away. It beeps and wakes you up if he has a bad overnight hypo. It means you get to sleep better as a parent. Before he had it, we would have to go and finger prick him in his sleep just to make sure he’s OK. You do have that horrible thought that he might not be. Which is dreadful.

With both the pump and the Dexcom, Seth’s HBA1C has stabilised to around the 50 mark. We have much more control and no longer see the variation in his blood sugar.  

We left the decision to use technology up to Seth, as it would mean he has two things attached to him that people would see say when he goes swimming. But he’s not embarrassed at all and doesn’t try and cover it up.

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.

About three weeks ago I came home from work with what I would describe as flu-like symptoms. Within the first two days I had a really high temperature and then developed shortness of breath and a cough. Initially I wasn’t going to call 111 as I thought I would just get over it, but after seeing the NHS guidelines I thought it was sensible to get myself checked. 

After calling 111, paramedics were sent to my house and did my general observations. They didn’t think I needed to be admitted to hospital but told me to ring 111 again and arrange to be tested for Covid-19. However, when I tried to do this the following day I was told that because I hadn’t been in contact with anyone who had visited an at-risk area, I should just self-isolate and see how I got on. When my symptoms weren’t improving, I contacted 111 again but was advised to isolate for a further seven days, as they were still unable to test me. It did feel like I was being left to look after myself a bit.

Thankfully this past week I’ve been feeling much better and I’m not as short of breath. My symptoms have definitely been in line with those of Covid-19 but I suppose I’ll never know for definite if I’ve had the virus!

There was a scary moment one afternoon when I had a hypo because I'd misjudged my insulin dose versus the amount of food I'd actually had to eat. I was running low on glucose tablets and was trying to eke them out for emergencies, but was pleased to find some sweet things in the cupboard, left over from Christmas but still in date. 

The only remaining worry for me is prescriptions. I have enough insulin for the next three weeks, but I need my blood pressure and cholesterol tablets. As I write this, I'm hoping the pharmacy delivery service will come up trumps for me. If not, I'm going to have to rely on porridge oats (to help reduce cholesterol) and remaining calm until I can go outdoors again.

My biggest success has been since using the insulin pump my blood sugars have become much more controlled (even if not perfect). This has enabled me to enjoy being more physically active, as with a little bit of planning (such as modifying the basal on the pump before, during and after exercise) I can still go running and complete events such as Tough Mudder and the Great North Run.

I feel the biggest improvement that can be made is by making Continuous Glucose Monitoring and flash glucose monitoring more accessible to everyone with diabetes. I was allowed to try a Libre system for a week as part of the launch of the system. The data available from this is incredibly useful for improving your blood glucose readings and enabling data-driven modifications to future basal and bolus patterns. Without this system, and without an unrealistic amount of daily testing, diabetes is currently managed by guesswork.

Research should also be focusing on closing the loop between CGM and the insulin pump, especially since the technology already exists to do this.