Initially, we managed Gracie’s diabetes with finger pricks to check her blood glucose levels and insulin injections. One of the hardest things was that Gracie had no hypo awareness. Her blood sugar levels could drop dangerously low without showing signs – terrifying at home, even more so at nursery.

"The continuous glucose monitor (CGM) was a real game-changer. We were initially hesitant – it made her invisible condition very visible – but it transformed her care. Ironically, after deciding to pursue it, we had to fight for 13 months to get one."

It was a real shift in trusting the technology and not second-guessing everything all the time, and it also allowed Gracie’s care in school to be much more straightforward. We can follow her glucose levels from wherever we are, and there are built-in alarms, so we sleep a little better than before! It’s made those family days out or activities more manageable – we can intervene with a snack earlier, so Gracie doesn’t have the dreaded calm down time when a hypo hits. 

Hybrid closed loop

The insulin pump was the next step, giving flexibility around eating and snacking – those times when Gracie would decide to have a dessert after originally saying no. 

"Now with hybrid closed loop, we almost forget she has diabetes – something we’d never have dreamed of at the time of diagnosis. Ultimately, the added thinking, stress and decisions are dramatically reduced. She’s even had full school days without a single alarm, letting her focus on learning and thrive at football."

Gracie really shows off her personality through colourful pump belts to themed CGM stickers, including a Corgi patch to honour the Queen after her passing. 

Initially, my brothers both relied heavily on medication. Over time, they’ve learnt more about managing their condition through changes to diet, exercise and having better sleeping habits.

My eldest brother was taking metformin, which he really did not want to be on, therefore he focused his energy on getting fitter. He participates in Brazilian Jiu-Jitsu and has aspirations to compete in amateur competitions in the UK. It hasn’t been linear and there have been setbacks and periods where his management has slipped.

For my other brother, his diagnosis is still quite new to him and there have been times when he's experienced blood sugar lows when he's been out and this has been scary for him. He also had to get used to taking insulin at work and administering this during the day.

But overall, they’ve become more informed and proactive, especially with regular check-ups and monitoring their blood sugar levels. 

It’s important to bring all your diabetes supplies and devices with you (including enough for a backup plan).

In my rucksack, I brought the kit I keep in my school bag, a finger-pricking set and a spare cannula. I also carried glucagon in my bag in case of a severe hypo.

I gave the rest of my diabetes supplies to the DofE leader to keep with her so I didn’t have to carry the extra weight. 

Before going on the expedition I talked with my diabetes team in the hospital as they have had previous experience with people taking on the DofE expedition.

My team suggested that I raise my glucose target (as it makes a significant difference on a closed-loop system) and to adjust insulin ratios. They explained that the increased exercise levels meant less insulin would be needed to keep within the target range.

Additionally on an insulin pump a temporary basal/exercise mode can be used. Having advice that was tailored to me was really helpful – and I think talking to your team is the best place to start when planning something like this.  

I used a Frio wallet to carry my insulin because it is amazing at keeping insulin cool in warmer weather. I use the wallet at other times too, not just during DofE but also when traveling, staying at a friend's house, or any time I don’t have access to a fridge for a few hours. 

In the early days, to test my blood sugar levels, I’d put a tablet in a test tube of urine. It told you a minute later, what your levels were two hours before! Control was just impossibly difficult. But I just got on with it. 

"Since I started using an insulin pump 20 years ago, I haven’t had a night-time hypo because the alarm wakes you up when you’re low."

Before that, once or twice a week I’d wake my wife up in the middle of the night with my shaking – I’d be fit to burst with hypos. She would have to try and get sugar down me. And I was finger pricking around eight or nine times a day as I had no hypo awareness.

For the last year, I’ve been using a hybrid closed loop system – a Medtronic 780g pump with CGM Guardian 4 sensors which is very accurate. For the first two months, I was 92% in range and now I’m 80% in range.

"Before, when I was on the Medtronic 640g pump with CGM Guardian 3 sensors, I was up and down like loose trousers." 

"I’m now only finger pricking once a week. But there are still problems. I feel like the pump doesn’t give me enough insulin when my blood sugar levels are high."  

The biggest challenge for me with diabetes is living with things that are uncontrollable. Today and yesterday, I had exactly the same breakfast at the same time and checked my blood sugar level one hour later. Yesterday I was 9mmol/l and today I was 5mmol/l.

I’ve never been offered an insulin pump or been presented with better management tools. I have a Libre, a continuous glucose monitor, which I initially self-funded for about 6 months. I was invited to participate in early day trials and realising the benefits I convinced my GP to provide it via the NHS.  But It wasn’t a straight forward process, as I had to put forward a strong case and my initial application was turned down. Then fortunately taking into consideration all my travelling for work and having a young son I was successful in getting the Libre as they saw it was beneficial in managing my diabetes.
   
I’ve got a friend who was recently diagnosed so I know there are new types of medication and technology which will help with managing my diabetes but none of that has been offered to me and I’m still on the same insulin treatment from about 20 years ago. I’m not sure how a pump would benefit me as its never been discussed at any of my consultations to date."  

Participation in activities

"Not being fully active is challenging. I used to enjoy regular long cycle rides with my son after school and during the weekend, however nowadays I’m much more hesitant to do that and I’ve also stopped playing competitive football."

There’s no hiding from the fact that the two bleeds I previously experienced were whilst out doing activities and so I’m naturally very cautious. This situation has made me anxious about going for a run or cycle ride and just generally being too active as I don’t want to have another bleed.

This has also had a negative impact on my physical health with some weight gain and has also impacted my mental health as I used to be so much more active before I started experiencing challenges with my eyes.

Being able to continue with these activities is so important to me. I’ve been involved with football for over 35 years and was keen to continue my relationship with this sport for a few more years. I wanted to be the one who made the decision of when to slow down which has now been taken out of my hands. It's an uncomfortable experience to continually have the thought that another eye bleed could easily occur if I were to overexert myself. 

What should happen

Diabetes is a complex condition and the repercussions over time are very serious and as I have found life altering so I don’t feel a consultant can examine someone with a checklist over the phone whereby you’re asked a serious of questions and if your response is favourable then that’s all fine. There needs to be a commitment to managing my condition properly.

Over the last 10 years I’ve been left to manage my diabetes and with diabetes you go through stages where your insulin and treatment may need to be changed when your body can become resistant to the insulin, so you may need to try something else. In my case over the last five years I’ve had high blood sugar in the mornings and so that means sleepless nights and having to give myself insulin through the night.

I brought this situation up with my consultant and yet there was no follow-up or advice on what to do. So 5 nights out of seven I’m waking up once or twice during the night to give myself insulin so that I don’t wake in the morning with a high blood sugar level. 

Having regular eye appointments and better monitoring of my eyes to pick up any complications should have happened sooner. Earlier laser eye surgery would have possibly prevented the bleeds I experienced which is why we have our yearly check-ups to monitor and prevent.