It increased every time I went back for a review, which was quite regular at that time. When I was on the maximum amount of medication they could give me at that time and it wasn’t really making an impact, insulin was suggested as an option. At the time, my career in the Navy meant I wasn’t allowed to go to sea until my diabetes had stabilised, and I wasn’t able to go to sea if I was on insulin. But from a health point of view, it was a no-brainer.

I was naturally worried about injecting myself being totally blind and with the reduced sensitivity caused by my Riley Day Syndrome. How could I maintain my independence and not injure myself by pushing the needle in too far? These and many other concerns were swirling round my mind, when I arrived at my local diabetes clinic. 

I'd like to pay great tribute to an extremely experienced and dedicated diabetes specialist nurse Zoe, who calmly and methodically began talking through all my concerns and teaching me how to use the pre-filled pen and needle. 

Zoe had had plenty of previous experience of teaching people with very little or no sight how to use such pens and this proved to be invaluable. Healthcare professionals who aren’t used to dealing with visual impairment may have taken the attitude that I might need to have someone help me inject myself on a daily basis, but you always want to live as independently as possible.

Zoe’s been outstanding. She taught me how many clicks of the dial I needed to count round, to dial up the correct dose and the process of unpacking, fitting, using and disposing of the needles. 

We both decided that auto-cover needles were the best sort for me to use, as there was no danger of me accidentally pricking my fingers whilst fitting the new needle and thereby potentially contaminating it, or when removing and disposing of it afterwards. 

Zoe's calmness and ever positive attitude really shone through and I quickly became familiar with the safe operation of the equipment and have been able to inject totally independently from the very beginning with only the odd minor issue along the way.

When I had to switch to a new Semaglutide pen, the needles I’d come to rely on weren’t listed as fitting that pen. But Zoe said: 'there’s no reason why the needles you know and love won't fit the new pen" and she turned out to be quite right!. I then encouraged her to spread the word via the drug company reps and other channels, in case there were others like me out there using these auto-cover needles, who needed to switch to the same type of pen.
 

Harj

We live in London and I contacted the hospital nearby where the trial was meant to be happening, but because of coronavirus they hadn’t opened up for recruitment yet.

They told me Sheffield would be the first trial site to open, so we then just had to wait and see if that would happen in time. And I remember counting down the days, because at this point we had three weeks left to get into the trial before that window closed and it would have been too long since Mahn was diagnosed.  

The biggest consideration for me was is it safe, are we taking a risk? But the team I spoke to spent a long time talking us through the history of this drug - Teplizumab - and the findings from past trials. And lots of immunotherapy drugs have already been used for other conditions and have been around for years, so safety wise we felt comfortable.

It was two weeks later when we heard from Sheffield. They knew how desperate we were and had pushed really hard to make everything happen in time. We’re so grateful for everything the team there did. Mahn was patient number one.

Taking part in the trial

Sharon

We went up to Sheffield as a whole family with Mahn’s two older brothers. For the first visit we had to stay up for 14 days because they gave Mahn an infusion of the drug every day over that period. 

Mahn

I know the treatment is trying to preserve beta cells and change the immune system. And that I’m having tests over time to see how it has changed things.

I went into the hospital everyday for two weeks. They put a drip in one of my hands to give me the treatment and took bloods from the other hand. So it was hard because I had bandaged hands, but in the end I know it’s for the greater good.

Sharon

The research nurses and whole team were just fantastic, and it’s great to be surrounded by experts in the field. They brought board games in and they make it fun and enjoyable, as much as they can. There have been difficult times, but Mahn’s doing really well and we’re always checking in with him and making sure he’s happy to continue.

Harj

He was on little doses of insulin when he was first diagnosed and now he’s not taking any. He’s come off insulin and we hope it stays like that. Maybe it’s the drug working, maybe there are other reasons. He could be on the placebo - we don’t know - but it has definitely been a really positive start for him. 

In January, I was in at a music conference in New Orleans with Sam, my husband and musical partner, when we first heard about coronavirus. 

When we flew back to the UK a few days later, there were people at the airports wearing masks. I felt like they were overreacting. At home in Somerset, Sam and I continued to perform the concerts we had in the diary. I was too busy with day to day life to give the situation any real thought.

We had a break between our gigs from mid-February until early March. That was when we started making plans. We bought some extra food, masks, gloves, and all the other things our family might need. I made sure I had enough insulin and other prescription supplies to see me through the next few weeks safely. At the time, I felt like we were preparing for the worst, but it turns out we were being perfectly sensible. All my family and friends thought we were completely mad!

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.