Fundraising to find a cure for diabetes: Mary's story

I was 27 when I was diagnosed with type 1 diabetes on Christmas Eve. I’d been feeling poorly for several months. I was drinking bottles of lemonade for England – you can imagine what that was doing to me. I’d had my ears pierced and they hadn’t healed. I didn’t realise at the time that was a sign. At the time, I was really busy on a project at work and if I’m honest, I was scared it was diabetes.

My granddad had type 1 and would have been an early recipient of insulin. In those days the treatment was so basic. My mother said he could never quench his thirst. 

My mother urged me to go to the doctor and I was sent straight to the hospital. It was not a good day to be diagnosed. They sent me home, but I’d rather have stayed in hospital. 

They started me on insulin straight away. It was horrible in those days. The needles were big and thick – like something you’d inject a horse with – and you’d use them again and again. I was on porcine insulin and only urine testing was available at home in those days. It wasn’t at all accurate, because people’s renal threshold varies.

I had two injections a day. I had to eat the exact same amount at every meal, at the same time every day. There was no flexibility.

I was given a book – the British Diabetic Association (now called Diabetes UK) handbook – and sent home. I was lucky, I was the first patient of the newly appointed diabetic health visitor (that's what DSNs were called in those days) at the hospital and she had just moved into the village where I lived. Knowing how scared I was, she came around to support me and helped me do my first injection. It was horrible. I hated it, and I was very resentful. I don’t think I accepted having diabetes for a long, long time. 

Slowly, over the years, it’s got better. I got my first blood testing machine when I was pregnant with my son. It was the size of a small laptop. You needed a large amount of blood, and there was nothing to help you push the needle in. It took two minutes to give a result. I was lucky and I had a very healthy baby.

Since then, things have come on leaps and bounds. Injection pens were an enormous development. Instead of having to draw up from a syringe, a vial. The needles were so much better. 

I’ve always been what’s called a ‘silent diabetic’. I hated people making a fuss. I’d treat a low blood sugar on the sly. With hindsight, it was quite a dangerous thing to do.

While everything is easier these days, type 1 diabetes will never be easy. Because no two days are the same. If you have a good diabetes team, it makes all the difference.

Getting an insulin pump

I lost all my hypo symptoms about four or five years ago. That’s quite common in people who have been diabetic for a long time. 

I then qualified for an insulin pump. I sort of hated it at first. Sometimes it lights up and it shows through your clothes and you have tubing that catches on things. But I had a pump failure a little while ago and I so missed it. You don’t realise how much you can do with a pump until you go back to injections.

The other thing that’s really helped me is the FreeStyle Libre (flash glucose monitor) sensor. When I lost my hypo symptoms I made a lot of fuss and kept asking for a Libre sensor. It had to be prescribed by a consultant and mine was out of the country. Because of postcode lottery, I had to buy my own for 18 months and they were expensive. Now I get it on prescription thanks to the Flash campaign.

It just means that doing activity, like the One Million Step challenge, you can check your blood sugar before you go walking and you know if it’s going low. It is an incredibly useful tool. You do need to learn how to use it though, because it’s measuring your interstitial fluid. It’s not your blood. When I started using it I couldn’t understand why it was saying I was hypo, but it was a delayed reading.  

The pump and the FreeStyle Libre sensor have been the most recent and best developments for me, not just for managing my diabetes, but also for managing my life.
 

Diabetes UK raises an incredible amount of money and they seem to be the main researchers into diabetes in this country. I’d just love them to find a cure. You see these little kiddies, on a pump, their mum too frightened to go to sleep. Wouldn’t it be lovely to find a cure for them? That’s why I got involved in the One Million Step Challenge.

I first saw the challenge advertised on Facebook three years ago. I signed up, but I was recovering from a bad accident and I had to give up. I could hardly walk down the road some days. It was the thought of raising money for diabetes that pushed me to try again.  

The following year, I walked and walked and walked. This year, I was determined to do it again. I finished the challenge over a week early and raised around £850.

Through the challenge, I’ve met such a lovely group of people. We support each other. I think if you have a chronic illness, other people often aren’t interested. If I can go on the One Million Step Facebook group and say I’ve been having a rubbish day with my sugars and I’m really fed-up, I get hints from other people about how they avoid hypos on long walks. It’s lovely.  

The One Million Steps Challenge has educated me. We’re a good group and we teach each other a lot. I’ve not just met other people with type 1, I’ve learned about type 2 as well. People say to me, ‘oh, you’ve got the bad diabetes.’ All diabetes is bad. They’ve all got the same complications. When you talk to people, you realise there aren’t many people whose lives haven’t been touched by diabetes.

A lot of people I’ve met through the One Million Step Challenge, especially some of the people with type 2, their HbA1c is incredibly improved. Some of them may be able to come off their medication. A lot of people have lost weight, feel better, and have improved their blood sugars as well. It’s really heartening to see the impact it’s had for some people. 

It was a nice thing to focus on during the coronavirus pandemic. You get to know people who are out walking their dogs or whatever. Walking is quite a nice way to keep in touch with people over lockdown. You get to see people. I think this challenge has saved a lot of people’s sanity, particularly for people who live on their own. They say that getting out and making themselves go out has made a big difference. When you go on a regular walk, you get to know people. You smile and say hello, pat their dogs. It’s kept me going.

It’s helped my diabetes management, too. If my sugar’s a bit high I’ll go for a walk and it’ll bring my sugar down. Now in the evening, if I’ve eaten something that’s set my sugar high, I’ll just go for a little walk and keep checking it and when it’s started coming down I’d go home.

Continuing to fundraise

This year, my partner and I decided to do Dry January in aid of Diabetes UK. I posted about it on Facebook and got some donations through, and because it was going so well - we continued it into February. We did have one day where we had a small glass of red to celebrate Valentine's Day - but that was it. We both felt so good for it, and I feel humbled by all the donations I received, mainly from my Million Step friends. We managed to hit £250!

I think diabetes gets a bad press and because people can be judgmental about it, it’s hard to raise money for. 

It’s important that we raise funds for technology, because it’s such a help. I know Diabetes UK is trying to get the tech improved for everybody with their Cheque for Tech campaign. My flash glucose monitor means that when I’m out walking, I’m not having to stop and prick my finger and squeeze blood out. I can just do it. We’re very lucky in this country to have the NHS and charities like Diabetes UK.

The fact remains that every day is a challenge. You can have two days apparently the same and one day your sugars are fine, the next day they're spiking all over the place. Let's find a cure. I really would like the children and young people diagnosed today to have a future where diabetes can do no harm.