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Opinion – How I came to terms with Type 1 diabetes

Getting diagnosed with Type 1 diabetes at 21 was nothing short of life-changing, but in a matter of weeks I have learned there is a silver lining to everything – even chronic health conditions.

‘There will be moments where you’ll think: “Why me?” but you can’t think that way. Because there is no “why” and this is just something that is now part of what makes you, you.’

My nurse, Dorcas, told me this as I lay on my hospital bed the day I was diagnosed with Type 1 diabetes. She was right; I’ve asked myself ‘why me’ at least a hundred times since my diagnosis three weeks ago.

Accepting I’m now someone who is required to inject insulin at least four times a day and prick their fingers every time they feel stressed or hungry hasn’t been easy. Neither has reading piles of new science pamphlets or having to adjust my work routine to make sure I don’t faint at my desk.

But finding out I had diabetes was probably nowhere near as bad as what would have happened if I hadn’t caught it at all.

So what are the signs to look out for?

On the morning I went into hospital, I woke up with extreme thirst and fatigue – after visiting the loo five times throughout the night – the same way I had been feeling every morning for the previous eight weeks.

These are the three most obvious signs of diabetes, alongside quick and unexplained weight loss. Of course, if you don’t have a family history of diabetes — or a degree in biology — it isn’t something you just know.

Frequently peeing and having to drink up to four litres of water a day does eventually get in the way of your daily activities, so it’s important you get your blood checked out if this is the case.

After blood, weight, and urine checks, my GP sat me down, with concern in her eyes – the first of many that I would be seeing – and told me that it was likely I was diabetic. Given I had been deprived of insulin for a prolonged period of time, causing a lack of energy, my body thought it needed more glucose so had started breaking down all my muscles and fat, she added.

If this happens, you start losing a lot of weight very fast. And this too happened to me completely undetected.

This is known as diabetic ketoacidosis (DKA) – a complication of diabetes that develops when the body can’t use sugar for energy. If left untreated for too long, it can lead to a lot worse than weight loss.

What is Type 1 diabetes?

Type 1 and Type 2 diabetes are both similar, but very different. Type 2 is a consequence of an inactive lifestyle or an unbalanced diet and is most commonly found in older or overweight people.

Type 1 is more common in younger people and occurs when the body attacks the cells in the pancreas that make insulin, which is key to allowing glucose to enter the bloodstream and create energy. The body continues to break down carbohydrates from food and drink but when this then enters the bloodstream, the lack of insulin means the glucose builds up and no energy is produced.

If this continues to happen for a prolonged period of time, your body will assume it is running low on glucose and will try to make more by breaking down your muscles and fat, creating a substance known as ketones.

While 8% of people in the UK have this type of condition, scientists still don’t know what causes it.

What to expect if you’re sent to hospital

If you catch diabetes before it reaches DKA, you likely won’t need to go to hospital. Some researchers are even trying to spot the symptoms before it develops into diabetes. But not everyone will.

I was put in a car directed straight for the Royal London Hospital’s A&E, frantically texting my boss that I was going to need more than just the morning off work, and my mum to make sure she didn’t panic-buy a flight ticket from Italy.

After being officially hospitalised with DKA, my fingers were pricked every hour to check my blood sugar, while several nurses struggled to locate my “wobbly” veins and inspect my ketone levels. I lost a lot of blood that day, and the lack of sleep and food made everything very hazy.

To bring my chemical balance back up, the doctors also plugged me into IVA drips, which fed me with different quantities of potassium, insulin and glucose. Resisting the urge to go to the loo when on a drip was a struggle – if you’ve ever been tied up to an IVA machine, you’ll know those liquids tend to flow fast.

Alongside the liquids, the lack of sleep and food, and the completely overwhelming amount of information you have to ingest – first-time diabetics will also face a parade of doctors and nurses, some who will know you are a first-timer, and some who will think you already have a favourite place to inject yourself with a needle, and assume you can do it yourself.

It can be scary having all these people talking at you and prodding you with tools, but as long as you are patient and remember that hundreds of thousands of people just like you have had this experience before (and they made it out), you’ll realise you’re in safe hands.

Diabetes has come a long way since it was first discovered in 1889 – when two scientists removed pancreas from dogs and found they died several days later.

In 2021, Diabetes UK said it invested over £3 million into 22 new research projects across the country. Some technology forecasts for this year have even predicted the launch of mobile phone apps to monitor diabetics’ glucose levels.

The first conversation

My first night in hospital was tough, to say the least. Something I’ll never forget will be the old woman across the corridor from me in A&E who desperately wanted chicken soup, despite the NHS nurse telling her countless times that it wasn’t on the menu.

I’ll also never forget my night up on the ward, trying desperately to get some naps in between my hourly blood sugar check-ups, but failing miserably as the patient next to me howled in pain.

Getting to the ward itself was amazing though – I had my very own porter who took me flying down the corridor in a wheelchair. The Royal London Hospital has a very impressive vegan menu too, which did not disappoint.

My most distinct memory, though, was the first call to my mum after getting diagnosed. People had been telling me for two days that I had diabetes, but saying it myself, out loud, felt like admitting defeat.

She cried, I cried. She wanted to be beside me and to hug me. But even without her being in a different country, the coronavirus has changed everything about the way visitations work in hospitals.

‘I would swap places with you in a heartbeat,’ I remember her saying.

That first conversation was a turning point though. It was a step towards accepting the indubitable, and recalling what Dorkas had said. I’ve had a few panic attacks since the day I was discharged, and a couple of episodes of hypoglycaemia – when your glucose drops too low and you feel faint – but nothing that can’t be handled with constant trial and error.

Insulin has already become like brushing my teeth, or doing the dishes, or even packing a mask when I leave for the supermarket.

More than a silver lining

After getting through the most physically draining experience of my life, I decided I was going to listen to my body more than ever before. Taking insulin every time I eat has made me a lot more conscious of what I put into my mouth, but monitoring my sugar levels has also helped me understand exactly what it is missing.

At work, where I am now protected from being discriminated against under the Equality Act 2010 as an individual with an unseen disability, I have been given non-stop support and flexible hours. While the prime minister orders people to return to offices as if it were business as usual, I am now protected under the at-risk category, and my episodes of hypoglycaemia could not be more thankful.

What diabetes has probably revealed most though, is how much I need to let go of control. It’s ironic because the condition is best managed under a controlled diet and regime.

Diabetes has urged me to spend more on my groceries – pick the expensive rye bread over the sliced white Hovis – and it’s urged me to book more weekend trips with friends, to say ‘I love you’ more to those I don’t say it enough to, to eat the cinnamon bun in that bakery window, as well as care less about what people think about on the Internet. That’s why I decided to write this piece.

And that’s why, in more ways than not, diabetes has changed my life for the better.