Sue's story: Diabetes UK helped me, and now I'm giving back to others

In the hospital, I was on a diabetes ward and while I was there, one person had an amputation, someone else died. And then there was a lady in her eighties who she looked fantastic and healthy. She was in for a regular operation and she was my inspiration. I thought 'okay, I want to be like you.' She was just amazing.

Once I was diagnosed I was absolutely terrified. I didn’t know anything about targets but they said to stay under 14 if I could, then they gradually bring you down. It was very scary. The daily injections were frustrating, but I’m now on a pump so that makes it much easier. When I went on to the pump my HbA1c came down by 10 then I got the Libre and my HbA1c when down by another 10.

About a year ago I had a full MRI scan and it picked up lesions on the brain. My neuro consultant said it was probably because of my diabetes, which he wasn’t happy about because he was really pleased with how I was managing my diabetes. It really knocked me sideways and as a result, I set myself really unrealistic targets for my diabetes management.

Reaching out for help

I didn’t go to a specialist diabetic counsellor and initially, I was quite worried about that but it actually helped to have to explain my condition to someone. When I described what I did on a daily basis she said it was totally understandable to feel really cross about everything I had to do.

Together, along with my consultant, we worked out realistic strategies and targets. We discussed how it was important to remember to celebrate that you are more than your diabetes. It helps while you are dealing with your diabetes on a daily basis because it reminds you there is more to life than just that.

I would say I’m managing reasonably well because I’m numerate and it makes things like counting carbs easier. But equally you never ever get a break from it.

One thing my Flash glucose monitor has helped me with is my confidence eating out and exercising. My diabetes doesn't stop me eating out although it is more difficult. 

I go to regular Pilates classes and my Flash glucose monitor really helps here. It means I just have to swipe my monitor over my clothes a few times during the class and it shows my levels quickly.

I think my husband Jeremy and I have come to a good understanding. If I have a really bad hypo, which doesn’t happen very often, all I need to say to him is '2.8' and he knows he’s dealing with it. He’s going to find the juice and instead of asking me what juice I want, he’ll just deal with it. And while I could go and deal with it, it’s just easier if he does.

Whereas if I wake up in the night and have a hypo, he’ll wake up and ask if I’m okay and I’ll say '3.8' so he knows he can go back to sleep and I’ll eat a jelly baby or whatever.

We take it in turns with the cooking and he’ll come to me half an hour before the meal with a list of carbohydrates that are in the meal. He’s absolutely brilliant.

Impact on work

I didn’t go back to work full time initially and when I did it was a baptism of fire. The first day I tried to go back to work I had a hypo. I was finding it incredibly difficult because you’re in the honeymoon period and your pancreas is saying ‘yes I’ll play today’ and it’s just really difficult to manage at the beginning.

I never got back to full-time teaching because I never applied for another full-time teaching job. I went into consultancy and had the most amazing line manager. I had a hypo on the way to work when I was on the way to a meeting. I had to phone the office and say I wasn’t going to be there because I had to wait 45 minutes before I could drive. I got a phone call back from my manager who said: ok go home and I’m going to phone you this evening. I thought I’d had it. I’d only been in the job two weeks.

She phoned back and said she’d rearranged my meetings so I had a minimum two-hour lunch break. This meant if I had a hypo, I could wait 45 minutes and then drive to my next meeting. She was just amazing. She said it would have been useful if I’d told her more about it when I was interviewed. But while I did declare I had type 1, I didn’t know any more about it so we had to learn together.

On the Saturday I was diagnosed, we looked up stuff on the internet and then on Monday when I was discharged from the hospital we walked around the corner and discovered the Diabetes UK office was just there. We went in only to be greeted by two ex-pupils, which was lovely. The following weekend there was a Diabetes UK Living with Diabetes Day, which at that time was for people living with type 1 and type 2 and it was great because it explained a lot.

I use the Diabetes UK forum quite a lot. I was one of the peer support people on the phones but it’s now moved it to the forums. I’ve continued to use the forum and I try to provide support where I can. The lovely thing about the forum is if you’ve got a question you can put it on there, you get a few answers by the morning.

My involvement with Diabetes UK

I’m a volunteer speaker for Diabetes UK and I’ve done some fundraising. I’m part of a group of weavers and we wove some samples for a calendar inspired by a photo and we’ve raised £1,900 and I also play in a band and we do gigs to raise money. 

I really like is the type 1 E-newsletter which collates all the latest research and they're focused on either type 1 or 2 depending on which type of diabetes you have. I like it because I can find the information that's relevant to me quickly. I always look through Balance too which is Diabetes UK’s membership magazine, there’s always two or three good articles in there and I like to know what’s going on with research.

I go and help with the training and it gives me the chance to meet other people too. 

Sue’s perspective

There was no diabetes in my family and type 1 is not necessarily genetic, so I knew nothing about it at all. But when I had access to all this data from my flash glucose monitor, I would look at it all time. I was getting a bit obsessive about it, so I had to cut down on looking to just once a week.

I would go bananas if people told me I was obsessive because I have to deal with diabetes every day. I got upset when people judged and called it obsessive – it offended me.

The condition never goes away, but you have to remember to celebrate that you are more than your diabetes, so while you are dealing with your diabetes on a daily basis, there is more to life than just that.