From telegraph.co.uk
Millie Smith, 23, from West Sussex, reflects on seven years of living with diabetes and hopes to raise awareness on how to get diagnosed
I developed Type 1 diabetes as a teenager. Until this point I’d had a completely normal childhood, growing up in Haywards Heath with my mum, dad and older sister, and I’d never had any serious health problems.
Everything changed in 2016 when I was studying for my A levels. I was moody, unfocused, tired, nauseous and I couldn’t see clearly – I was told that I needed glasses. I was constantly thirsty and frequently had to pee. I’d lost so much weight that my face looked skeletal and you could see every notch in my spine.
Later I would learn that I had the classic “four Ts” of Type 1 diabetes: toilet, thirsty, tired and thinner. But at 16 it was easy to pin everything on hormones and typical teenage angst.
I told Mum how constantly thirsty I felt. She’d also noticed the changes in my mood and appetite recently, and that was when the penny dropped for her. As a former flight attendant, Mum had done a first-aid course where she’d learnt about Type 1 symptoms. “It could be diabetes,” she said. She turned out to be right, but back then I was angry and stormed off to my room. How could I have diabetes? I wasn’t fat or unhealthy, I thought to myself.
Like many people, I had misconceptions about both types of diabetes. There are five million people living with diabetes in the UK, and 400,000 of them have Type 1 like me. This condition involves a lack of insulin, which causes dangerously elevated blood sugar levels. As the charity Diabetes UK puts it, Type 1 is when the insulin-producing cells in your pancreas have been attacked and destroyed by your immune system. Type 2, on the other hand, is when your body isn’t making enough insulin, or what it makes isn’t working properly due to factors linked to diet and weight.
When I went online to learn more about Type 1 diabetes, all my problems were there, listed in bullet points. But there was no explanation: unlike Type 2 diabetes, which has well-established risk factors, Type 1 is an autoimmune condition with no known cause. While there is constant research into diabetes and new treatments, there is still no cure. This is a condition that will have to be managed throughout my life.
Mum took me to see a doctor the day after she realised what could be going on. I was given a urine test and my sample contained so much undiluted sugar that the GP was almost certain I was diabetic. I was later advised to go to A&E and was then transferred to a specialist paediatrics unit in hospital. I felt shocked, thinking it must be my fault, but the doctors there explained that insulin was the key that processes sugar and that without it, sugar would remain in my bloodstream. A healthy blood sugar range is anywhere between 4 and 8 mmol/L – mine was at 36.
To comfort me, Mum bought me a hot chocolate in the hospital. The doctor frowned and said “that won’t make you feel better.” Mum later admitted that she felt guilty because when I was little she’d get me to eat fewer sweets by warning me that I’d get diabetes if I wasn’t careful. Sugar was something I thought of as a reward, a mood-booster. I feared I’d have to completely cut it from my diet, but fortunately this isn’t necessary to manage diabetes well.
I met lots of specialists who helped me to understand and manage this condition. I was taught how to inject myself, how to read my blood glucose levels through a finger-prick test, and how to calculate the insulin dose I’d need to go with different foods. I’d inject myself every time I ate any carbohydrates or sugar. When my blood sugar dropped, I needed to consume something fast-acting like orange juice or jelly beans and follow up with a carby snack to prevent them dropping again. I stopped being a vegetarian so my diabetes would be easier to manage.
For the first month after my diagnosis, nurses came to my house for weekly check-ups until I was confident enough to manage things myself. Then it became monthly check-ups, and now I only need to see my diabetic nurse twice a year, where we tweak changes to my insulin dose. I have my blood tested and my feet poked to check my circulation is healthy. Things can still occasionally go awry, so regular contact with my nurse keeps everything on track.
After all this I’d fallen behind at college, and because I was in hospital I’d missed a reunion of friends who I’d spent the summer volunteering with in Malawi, which was upsetting. My family was brilliantly supportive. Dad admitted he’d cried in the hospital café, wondering how his “perfectly healthy, strong daughter” had suddenly developed this condition. But he also had “overwhelming gratitude for the clever, dedicated people helping diabetics to live well”, he told me.
Diabetes technology has improved dramatically in the seven years since my diagnosis. Insulin can now be directly delivered to my bloodstream with devices like the Omnipod, an automatic insulin delivery system that’s connected by Bluetooth to a device that’s no bigger than my phone.
I got that pump when I was 18, before starting university. It’s tubeless, discreet and has been upgraded three times since then, getting progressively more accurate and helpful, with things like exercise management tools embedded.
The device bleeps to tell me that I need to change my pump and works in sync with another device that monitors my glucose levels. Sometimes the alarms happen in awkward situations like meetings, or it wakes me up in the middle of the night. Sure, this can be frustrating, but it’s a small trade-off for my improved quality of life. I like going to clubs and festivals, both of which require bag checks for entry. I show bouncers a medical letter stating why I must keep my kit, and if I can’t bring orange juice through the door with me then I’ll have some glucose tablets on hand for emergencies.
Thanks to this new technology and my family’s support, I can honestly say that having diabetes has changed my life for the better. If people notice devices attached to my arm or stomach, I’m happy to talk about it and raise awareness but also make light of it – someone I met travelling last year likened it to a ketchup sachet, but my boyfriend reckons it’s more like a doorbell.
Being diabetic has made me more organised and health-conscious. I now plan ahead – when I go to my Zumba class or for a run, I make sure my insulin delivery is reduced about an hour in advance to keep my blood sugar levels stable. I have sugary snacks to hand and some friends know about my needs in case of an emergency.
You can drink alcohol if you have Type 1 diabetes, but as with all food and drink, it must be consumed carefully: a glass of prosecco on a special occasion or a gin and tonic on a night out. But I haven’t stopped enjoying my life. I still travelled to Australia, New Zealand and south-east Asia for six months, a feat that involved making sure I had access to a refrigerator to store my insulin wherever I went – a tall order when travelling on the Mekong River to our isolated village homestay where there was no electricity.
I’m now 23 and hopeful for the future. Perhaps one day there might be a cure, but in the meantime being diabetic hasn’t stopped me from doing any of the things I love.
Read more about Millie’s travels as a diabetic on her blog
https://www.telegraph.co.uk/health-fitness/conditions/diabetes/living-with-type-one-diabetes/
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