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.

Since Eddie’s switched to a closed loop pump four months ago, things have got better, as the insulin automatically adjusts every few minutes according to his blood sugar levels. Before we could be up some nights every two hours giving insulin or treating low blood sugars. We are so glad that the NICE guidelines now stipulate closed loop systems for type 1, and we hope these can be rolled out as quickly as possible.

Although the technology is amazing it’s not a cure. The walk for me is raising money to find a cure. We’re getting closer all the time. Imagine a day where there is a cure; wouldn’t that be the best day.

In August 2022, my blood test showed that my HbA1c was 60mmol/mol and the doctor felt my diet was not working. To be honest though, I wasn’t really doing the diet properly. The decision was made that I would be put on metformin, which at the time I accepted.

I started with one tablet a day with my meal, then in the second week this was increased to two tablets. I was only on the tablets for about six weeks but that was long enough for me; that’s when I decided it was time to take charge of my life. I had also been getting headaches and cramps in my shoulders and legs, and I just felt really out of sorts.

People saw it and asked what it was so I've been taking more about it. It's been lovely educating people on type 1 and also having their support. Even a quick 'everything good Lee?' on set whilst someone taps their arm where my Libre is.

"It makes me feel really supported without being swaddled by nervous snack holders trying to feed me every 5 minutes!"

Before the Freestyle Libre, checking bloods was a painful and frustrating process. Finding somewhere to wash your hands, sitting down somewhere, and fiddling with strips have all gone now. 

Real-time monitoring makes you able to see patterns and catch warning signs before hypos or hypers. I think if I'd had the Freestyle Libre when I was first diagnosed all those years ago it would have been far easier to get to grips with my diabetes.