Coronavirus (Covid-19)

Advice for people with diabetes and their families

Savefor later Page saved! You can go back to this later in your Diabetes and Me Close

You don't want diabetes to rule your life, but it's got to guide your life.

Thumbnail

Now, aged 49, he lives in Northampton with his wife Ann and he’s prioritising his health and working hard to help others do the same.

I was diagnosed with Type 1 diabetes in 1982 when I was 12 and I remember every day I spent in the hospital like it was yesterday. I didn't understand it when I was diagnosed, it was a total shock.

 

Emotions

I was 39 when I suffered severe complications. I had my toe amputated and they also tried to straighten one of my legs as I also suffer from Charcot-Marie-Tooth disease, which is a muscle wasting disease. Unfortunately, after both procedures, the pins they had put in to straighten my legs got infected which was partly a result of me having diabetes. I was at a point where I thought I might lose my leg too, and it all got too much. I emotionally broke down in the hospital as the realisation of what was happening to me kicked in.

At the time I didn't realise what kind of help was out there. I didn't realise Diabetes UK offered any help. I didn't look. I just went to the GP who offered me medication and put me on a long list to see a counsellor, so I managed by just talking to my family.

Friends and family

I was around 5st and had collapsed on the football field. I was just skin and bones and was going to the toilet all the time. My mum had an inkling it was diabetes as it runs in the family, but it was all Type 2. My mum, my uncle, my nan, and an auntie on my dad's side all have it. I was in the hospital for a week during half term. I was so unhappy.

Back then diabetes was monitored with urine testing and one injection a day. You'd have to eat quite a strict diet, we had a book that we kept to know the carbohydrate values of everything and we had to weigh everything out, it was crazy. It was tough because I could go into the newsagent, look at the sweets but the only thing I could have was cool mints and I didn't really understand why at that age. Then Boots brought out a diabetic chocolate which was extremely expensive and tasted awful, and it had a substance in it that worked like a laxative. At the age of 12, I used to polish a bar off and then go and play football. Big mistake!

Work

I suppose I did take early retirement when I was 39, but it was a gradual thing. I wouldn't give in but eventually I had to. Along with my muscle wasting disease, Charcot-Marie-Tooth disease, the diabetes complications meant I was putting myself at risk. I worked at Northampton Town football club as the duty manager and was also qualified in health and safety.

I was 39 and had lost my toe, and then more and more things came out about my health. I hadn't decided to retire, but I had to get it into my head that I wasn't going to work anymore. It's a shock. Once you're declared disabled, it's a novelty where you're getting used to everything. But it's also very hard to get your head around everything.

Diet, nutrition and exercise

When I was younger, your blood sugar levels were tested through a urine sample. If it was high, you were advised to exercise to bring it down. Obviously, with urine testing, it would only tell you your blood sugar levels in the morning and not throughout the day. There was nothing like corrections or anything like that. Nowadays though I go to the gym three times a week and try to eat healthily. I just try to get on with it.

I have a great support system, my wife will back me up whatever I decide to do. If she thinks I'm doing something I shouldn't she'll let me know. And as a funeral director, she's got the threat that she'll take me to work in the morning! When you're living with diabetes, you do have doctors saying: 'you've got to do this and you've got to do that.' But how many doctors have diabetes? They don't realise you've got to live your life.

You want to eat normal food, you want to have that glass of wine. If you're going to go out and have a drink, make sure your blood sugar levels are back the next day.

Diabetes UK and me

A couple of years ago I took part in a charity row on a rowing machine with a gym instructor who had diabetes too. We rowed five miles in an hour and we raised around £1,000 for Diabetes UK.

Normally I use the diabetes clinic at Northampton hospital because I've known them for years. I leave them a message and they always get back to me, I use them as a form support but I don't like to lean on people. I belong to a lot of disabled groups and I went to a local community law service and they helped me get what I was entitled to.

I've got the machine for Flash as I took part in the trial, but I can't afford the patches. The patches are £50 each and need changing every two weeks plus spares. We just can't justify the cost, I've spoken up for the Flash campaign at local meetings because I believe it should be available to everyone.

James' perspective

I see many people living with diabetes and a lot of them don't realise the dangers of high blood sugars and I do try to tell them. But how do you tell an adult whose blood sugars are high that they're at risk of having complications? The only way is the hard way. My advice would be: exercise, eat in moderation and blood glucose control.

You don't want it to rule your life, but it's got to guide your life. My goals are to be happy, keep my diabetes in check, and to be happy and as healthy as possible. I want to live life to the full and offer voluntary help, disability awareness, and talks.

Brand Icons/Telephone check - FontAwesome icons/tick icons/uk