“I’m determined to keep pushing my limits” – almost 68 years of living with type 1

For the first 30 years of managing my type 1 diabetes, not much changed at all. We were still relying on really unhelpful urine tests. The most dramatic change came with the arrival of insulin pens and blood test meters in the 1980s. Suddenly, I had so much more dignity. Before then, if I went out for a meal, I’d have to slip away to the toilet, do my urine test, mix two insulins, inject myself, and then return to eat. It was really liberating when I could do everything right at the table. The freedom to manage my blood sugars more discreetly and with far greater dignity felt incredible.

However, the change that made the biggest difference to me was the continuous glucose monitor (CGM), which I didn’t discover until I was 60, after living with type 1 diabetes for 58 years. The CGM gave me a sense of safety that I had never known before. It was like no longer living in the dark.

Peter aged two in Autumn 1956, just before his diagnosis with type 1 diabetes.

Using hybrid closed loop

CGM also paved the way for hybrid closed loop (HCL) systems, which I’m now using. I find I’m hardly ever out of range and typically have time in range above 75%. It’s quite incredible. It was set up by my clinic in King’s College Hospital in London. While others in my group had some challenges getting the balance and settings right, I was so lucky-I seem to hit the jackpot. Everything worked well from the start, and it’s been fantastic ever since.

I recently took on a demanding eight-mile hike after I had started on HCL. It was the first time in my life I didn’t have to top up with fast-acting carbohydrates when I was out walking. I was monitoring very carefully and was giving myself insulin for food that I had for lunch. I got to the end of the hike and I had stayed in range the whole time. It was quite remarkable.

Technology has made it possible to push the limits without letting diabetes stop us from living our dreams.

Connecting with others

For the first 58 years of living with type 1 diabetes, I didn’t know anyone else with the condition. Everything changed when I met a group of 19 people living with type 1 diabetes for a training session to prepare for climbing Kilimanjaro for Breakthrough T1D (then known as JDRF). I felt very close to them almost immediately because they were people who really understood the challenges of living with type 1. This extraordinary bond and closeness is very special and is so often a positive of living with this complex condition.

Going to meetups, having a drink, a natter, and sharing meals with others who ‘get it’ is incredibly rewarding. It’s amazing how such support, which feels so valuable, often comes at little to no cost apart from a meal or a drink. I always come away from those sessions feeling as though I’ve had great therapy, and a lot of fun.

Managing other conditions

In 2016, I was diagnosed with Coeliac, which like type 1 is an autoimmune condition. It can be a frustrating thing to live with but thankfully, I find it less complex to manage than type 1.

Recently I’ve developed Parkinson’s disease. The impact has been significant – my left arm has lost dexterity, and my fine motor skills aren’t nearly as precise as they used to be, and my balance has also been affected. It’s been a tough adjustment. Having HCL makes it easier, I don’t have to use pens and blood meters, which can be fiddly. The HCL system I’m using now is much simpler than what I used before and I don’t have to be worrying about the tube connection. I’m finding that really helpful.

My wonderful Parkinson’s nurse encouraged me to apply the positive mindset I use for dealing with type 1 to Parkinson’s. I thought, well, type 1 has never stopped me doing anything and I’m blowed if Parkinson’s is going to, for as long as I can help it. I’m determined to keep pushing my limits and live as fully as I can.

I never had it said to me, but years ago, people were told, oh, you’ll be lucky to live to 40, and it’s lovely that so many of us are now proving that wrong. But as life expectancy has gone up and up, provisions aren’t there for older people yet. I’d love to see that focus change. I am delighted that the provision and support for young people with T1D is generally excellent, as it is for most adults. However, similar backing does not seem in place for elderly people with type 1. The prospect of handing over their complex T1D management is a major concern bearing in mind that typically care homes have no knowledge or very limited knowledge of T1D care. It’s very frightening!

Trekking Mount Toubkal

From 2nd October, I will be trekking to Jbel Toubkal in Morocco to mark my 70th birthday and raise money for Breakthrough T1D. At 4,167m, the mountain is the highest peak in both the Atlas Mountains and the whole of North Africa. I plan to summit on my 70th birthday. I’m trekking with a group of 14 who either live with Type 1 or have a close connection to it, including my sister. After a Breakthrough T1D Discovery Day talk in London, a doctor with over 20 years of type 1 experience offered to lead the medical side, so I signed him up immediately!

One of my concerns for the trek is how Parkinson’s might affect my balance, especially on loose scree and uneven terrain, but I’m preparing thoroughly. I’ll be bringing my hiking poles and taking all necessary precautions. The trek leader assured me we’ll reach the top, but I’ve made it clear I won’t be carried or use a mule. I’m committed to doing all I can, but if I don’t make it to the summit, I will know I gave it my best.

Giving something back

Fundraising is a lovely way to give back as a thank you for the work of a wonderful charity. Raising even a small amount for charity feels good and every bit most certainly helps.

Apart from fundraising, I do these challenges to offer hope and encouragement to families and individuals living with T1D, often frightened by what may lie ahead. I do them to encourage others to never let type 1 diabetes prevent them from doing anything and demonstrate that you can achieve almost anything despite living with such a demanding condition. And, tackling a major challenge with people who fully understand type 1 creates an amazingly strong, cohesive and powerful team – it’s incredible peer support.

Find out more about Peter’s Mount Toubkal trek.