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Shared experience

It was a huge shock to be told you’ve got type 1 diabetes at the age of 59

Devanshi Mavani talks to us about how she came to terms with her type 1 diagnosis and how she finds comfort in physical activity.

In May 2017, I was hiking in the Cotswolds with my sister and getting really tired. She found that surprising because I’m very active. I always have been.

I felt quite poorly rapidly. It got to the stage where I was getting blurry vision. My sister is a pharmacist and told me to go to my local chemist and get a blood test done which I did.

I was just so lucky that she picked up the signs. The pharmacist told me that I had really high blood sugar – 30 and my ketone levels were seven.

I was on the brink of going into a coma so for four days I was in intensive care and then they moved me to a diabetes ward to start me on treatment and teach me how to do injections.

Finding a new normal

That’s how it all started – it was a massive shock.

It meant huge changes to my life to begin with. Type 1 diabetes is relentless – 24/7, 365 days a year. You never ever get a break from it. It’s at the back of your mind all the time; there’s no off switch.

You have to be very organised in life because anything you do, anywhere you go, you’ve got to carry your spare blood testing meter, pump, insulin, injections. Initially, I was getting caught out because I might have my machine but then the test strips would run out or I wouldn’t have any glucose tablets on me.

JDRF run really useful community events that include advice about exercise and nutrition. I learnt quite a lot that way. When you’re diagnosed, it’s a case of sink or swim and you’ve got to learn to swim so any resources you can get hold of help.

So many factors affect your blood glucose levels – it’s not just food but also the exercise you’ve done, whether it’s hot or cold, your hormones, time of the month, where you are. It’s a very invisible condition with such a lot going on.

Climb every mountain

Those first few months were tough. I was really down. I couldn’t exercise much; I was learning even how to walk round the block without my blood sugar dropping.

Then I went to a talk about climbing Mount Kilimanjaro for charity and came back and told my husband that I really wanted to do it. He said: ‘well why don’t you?’ and the next thing I knew I was signing up to the trek!

You go through all these different zones to climb Kili so when you’re starting off it’s extremely hot and I had to keep my insulin in a Frio cooling wallet. But as you go higher up, the temperature gets colder.

I didn’t want my insulin to freeze so my friends made little thermal bags that I could put against my body or in the sleeping bag at night. They also made thermal bands to put round the glucose reader.

I had to inject far more than usual because you become insulin-resistant at altitude. At one point I was lying on a rock, it was minus 16, I had all my layers on including three pairs of gloves, and I was injecting my stomach. But you just have to get on with it, what else can you do, you’re on top of a mountain!

It was the best thing I ever did because it moved me into a more positive mindset, accepting that I’ve got this condition now, I’ve got to live with it and make it work with my life.

Life-changing technology

Two years after my diagnosis, I got a tubeless pump. If I’m going on a long eight-hour hike, I can reduce my background insulin by 50 or 60%. In the past, I was having to eat such a lot to keep my blood sugar up but the pump has given me so much flexibility.

It also makes day-to-day life easier. Because I’m retired, I do a different gym class every day and I swim. Six years on, it’s still challenging but I’m far more organised.

The recent announcement on all the amazing work that JDRF have done on the artificial pancreas is really exciting. It will take away so much stress and anxiety from the parents of children with type 1.

They’re going to keep on finding new ways of making life easier with all the technology so there is hope. Things are moving rapidly every day.

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