Adam's story: Living with type 1 diabetes for 68 years

I’ve had diabetes for 68 years, a very long time, it’s not exactly boring, but it wears you out.

"I feel horrible when I’m either full of sugar or out of sugar, so my aim all these years has been to keep a decent level as much as possible."

I’m trying to walk more so when I heard about the Wellness Walk in an email from Diabetes UK, it seemed like a nice opportunity. My wife and I like walking.

As a kid I lived in Great Russell Street opposite the British Museum and went to school in Drury Lane. I loved all the little alleys and ways down to the river – just the magic – and all the bomb sites – very exciting at the age of six.

On the walk, I went up between Tower Bridge and to Westminster Bridge on the south side of the river. You go past Cardinal Cap Alley, now closed off by a gate which used to have a sign saying: ‘Leading to Skin Market’ which I loved. It was was where my wife’s distant ancestors worked in the leather trade.

I wrote to everyone I know and said my wife and I are doing this walk and they all sent money which was amazing. We’ve both been in the same choir for 20 years and I told them and they came up with another couple of hundred pounds. 

I enjoyed the bridges. I had a large-sweet biscuit before I started and was nicely blood sugar stable throughout the walk. I went up to 9mmol/l and down to 6mmol/l at the end.
 

I was working all hours washing up in the Basil Street Stockpot restaurant in Knightsbridge and painting the manageress’s house so I could buy a record player. I thought I was thirsty because of all the work. I’d wake up with cramp so bad I’d bang on the wall and my mum would come in and help to straighten out my legs.

In the end, it was a friend of my mum’s who took me to hospital. I was in St Mary’s Hospital in Paddington for a week and a half. I was given insulin immediately and when they weighed me, I found I’d lost 28 pounds in two weeks.

"And I remember my eyesight got magnificently better and I could see again very clearly. I got entranced by colour and it was a sunny day and I remember if felt like the nurses had light in their eyes – the blue was so intense." 

"When my parents came to visit, I asked them to get a book to explain it. I’d never come across anyone with diabetes. My mum got The Diabetic Life by RD Lawrance. She read it first and she wouldn’t give it to me for five days because she thought it was so frightening it would kill me!"
 

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’m happy mainly because of love. I love and I’m loved. I’ve had a very interesting life and done lots of different things, it’s been absolutely wonderful.

I can talk, I can walk, I can sing. I was doing Irish step dancing for 20 years but I stopped because I had a stroke. It’s an appalling burden on you to have diabetes. But I feel I’ve got off nearly scot-free. It’s not easy, you can’t prepare for all the things that happen. 

I’ve been a member of Diabetes UK since 1956. I like the magazine. I read about research and then I do the crossword first.

"But the thing that helps me the most, which I discovered about five years ago, is the forum. It’s full of absolutely brilliant people, who are helpful in ways they don’t even know." 

I wrote in about the difficulty of controlling blood sugar – and very carefully thought-out replies came back immediately – and they’ve got diabetes of different sorts. They give you moral support and the fact they’re willing to give you advice warms your heart. It’s fantastic.

I like to encourage the people on the forum who have just been diagnosed. I say: Well, I’ve had it 60 odd years, and it’s like this and these are the problems. I let them know that you can survive, but you need to pay attention to your diabetes every day.”