Rob's story: becoming diabetic had a huge impact on my life choices

• Diagnosed with type 1 at age 13 in 1991
• Spent many years feeling 'completely overwhelmed' by his condition
• Started to get fit in his early 30s and now runs ultra-marathons

In 1991, when I was 13, my family was making a two-hour drive to visit friends for Christmas. I had to keep asking my dad to stop the car so I could have a drink. Watching me drinking out of water fountains in grimy service stations, my parents realised something wasn’t right. My dad is a biochemist and, several days later when I was still incredibly thirsty, I went to the doctor. He got me to do a urine test and it turned this vivid, British racing green colour.

When I was a kid, I did my best to ignore my condition. I can’t imagine the stress my parents must have been under, having a child with diabetes. My mum would ask me, ‘what’s your blood sugar?’ and I had a stock reply: ‘It’s 6.4.’ I thought that was a ‘good’ number. 

I think my blood sugar ran high for most of my teenage years. I have been very lucky to have got through it with few complications. I didn’t have my first hypo until I was nearly 20. My mum woke me up one morning and I had glazed eyes and was talking rubbish. She thought I’d been taking drugs and called the doctor, who came out to see me. it was then that we discovered I was hypo. That was a wake-up call. For the first time I realized that diabetes can change quickly and can have serious consequences. 

Me and my wife, Natalie, have been together since we were at University. Her seeing me have hypos more and more as I got older was one of the factors that made me want to get to grips with my diabetes. When Natalie was pregnant with our first baby, I had a bad hypo and fell out of the bed. I was convulsing and my leg was banging against a chest of drawers. I shaved the skin right off my calf. 

Now, I’m a dad to three kids and the thought of having a hypo and not being able to look after them is really worrying. Natalie used to think twice about going away for work, or would subtly instigate me staying with my parents if she was going away when the kids were very young.

When I was diagnosed, I was told this was it for the rest of my life. I was a pretty normal boy in my early teens at the time. I was active and did a fair bit of rugby, football and sport. I wanted to be a soldier and have a lot of adventures. 

A nurse said, ‘don’t worry, you can live an “ordinary” life.' I asked if I could join the army, but she said, ‘no, you will have to be very careful doing sport from now on.’

To me, that was a thunderbolt. What I took from her words was, basically, ‘stop following your dreams.’ So, I stopped dreaming about having adventures. I think becoming diabetic had a huge impact on my life choices. 

I spent most of my 20s feeling completely overwhelmed by diabetes. I didn’t have a clue how to deal with it, so I largely ignored it. I took my insulin, because I knew that if I didn’t I would become very ill, but I resisted all attempts by the community nurse and my parents to interact with other diabetics. I did the bare minimum. 

I’ve had lots of fun and adventures, but diabetes did stop me dreaming. My dream was to be in the armed forces and diabetes put paid to that.

After my diagnosis, I gave up sport. In my 20s, I got away with eating and drinking whatever I liked, to an extent. I worked as a journalist and had a pretty sedentary lifestyle. In my late 20s, I realised it was becoming increasingly difficult to find a pair of jeans that fit from a high street store. I didn’t want to be a fat dad. So, I started going to the gym, running a bit. 

Unfortunately, as I was exercising more and trying to achieve better control, my hypos got worse. Learning how exercise affects you is a real minefield. It’s so easy to understand why type 1 diabetics avoid exercise. There’s a great risk of it going wrong when you first start out.  

After my daughter, Bluebell, was born in 2011, I started doing CrossFit. It was hell. But a happy kind of hell. It’s short, sharp bursts of intense exercise that burns calories and releases endorphins. I don’t enjoy gyms, but CrossFit made me open to the idea of fitness. It was a community of people of all shapes, sizes and backgrounds, all doing their best to get fit. I soon fell in love with it.  

I’d been doing it for about a year when I got a frozen shoulder, which is quite a common complication of diabetes. For a year and a half, it got worse and more painful. Suddenly, I couldn’t do CrossFit any more. It was awful. The only exercise I could do was running. So, I started replacing the CrossFit with more and more running. 

I’d go for a run two or three times a week and realised I love being out in the countryside, away from phone calls and computer screens. I love the escape and release that running gives me. I get quite emotional when I’m finished a long run. It feels like I’m beating diabetes. It’s a release from every decision you make as a type 1 – ‘am I going high? Am I going low?' When you are running, it takes all those variables out of it. I just think, ‘I’m running and I’m going to keep running for as long as my body will take me. I always have this overwhelming sense that I’ve taught diabetes a lesson. It’s not going to stop me doing what I should’ve been doing. I deserve my dreams.

The biggest challenge?

In my mid 20s, in my first job as a local reporter for a paper in Woking, I interviewed a couple in the army medical corps. They had just returned from Morocco, where they’d taken part in the Marathon des Sables. They’d run 150-miles through the Sahara desert. I thought, ‘that’s the sort of adventure I’d love to have had before I got diabetes.’ 

Talking to them, something hit a nerve. The Sahara is an exotic place, far from the home counties where I grew up. There was an element of danger to the Marathon des Sables as well. I thought about how I’d have loved to do that. Then I thought, ‘well, I can forget about that. My insulin would get too hot and I’d have a hypo halfway up the first sand dune.'

Then, in 2013, Roddy Riddle, a former international road cyclist became the first person with Type 1 diabetes to run the Marathon des Sables. At that point I was running more and more. I thought, ‘if he’s done it, I’m going to give it a go now.’

So, I set up a blog saying, ‘I’m going to do the Marathon des Sables.’ I didn’t think many people would read the blog, but I thought that committing publicly to the challenge would mean I’d definitely have to do it.

Running an ultra-marathon

In April, I achieved my dream of completing the epic race across the Sahara. You're told it's hard, but you can't imagine just how tough it is until you're doing it.

After spending the third day battling hypos, I turned off my insulin pump for the remainder of the race. Because I was doing prolonged aerobic exercise, my blood sugar stayed level and for the first time in 28 years, it felt like I wasn't diabetic. It gave me such a sense of freedom, and helped stop my blood sugar from yo-yoing.

The whole experience was incredible. 

You will find, over time, that you know more about how the condition affects you than your GP. This means that you need to fight your corner.

It’s a struggle but I’ve found that with the right technology and treatment it can get easier. I also think there’s a terrible problem with the language that’s used around diabetes. Anything between 5-8mmol/mol is ‘good’. Anything outside of that is deemed ‘bad’. 

The reality for a Type 1 diabetic is that over the course of a day, your blood glucose fluctuates massively. Yet every time your blood glucose machine displays a number that’s outside 5-8mmol/mol, you’re deemed to be not good enough. It’s a daily grind, where you’re being told that you’re not good enough and you’re failing. It has a huge impact on your self-esteem and anxiety levels. Your whole way of thinking is determined by this little machine, when the reality is that one of your organs doesn’t work anymore and you can’t have ‘good’ numbers all the time.

The online diabetes community is wonderful. It would have made a huge difference to my life and wellbeing. In the early nineties, the only contact I had with other diabetics was every four months when I’d go to the diabetic clinic. And I absolutely didn’t want to be there.

Now, you can share your experiences of diabetes with anyone, from anywhere around the world.