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Shared experience

“I learned a lot from it” – recovering from diabetic comas

Katie Shaw writes about experiences of diabetic comas – loss of consciousness due to low or high blood glucose levels – and what it has taught her about managing type 1 diabetes.

Trigger warning: some readers might find this content distressing.

Katie Shaw who lives with type 1 diabetes standing in front of a garden door

It’s difficult to describe the emotion that comes with experiencing a diabetic coma, simply because you are totally unaware that you are experiencing one.

Blacking out

Since my type 1 diabetes diagnosis in February 2006, aged six, I have experienced a handful of diabetic comas – both from low blood glucose levels (hypoglycaemic) and high blood glucose levels (hyperglycaemic). At the time I was on multiple daily injections and finger-prick tests. I remember waking up to my year four teacher feeding me fruit juice through a straw whilst asking me to say my name as I came back around to consciousness. Similarly, I woke up at a friend’s house with a Ribena carton in my face and a worried look on my friend’s mum’s face.

At a school fete, I felt unwell. We went home, where I was sick and fell into a hyperglycaemic coma. My mum recalls my breath smelling of pear drops (a symptom of ketoacidosis, where blood glucose levels become dangerously high), and we went to A&E. Unfortunately, these incidents seemed to be part and parcel of navigating my early diabetes management, all occurring in the first three years of my diagnosis.

A traumatic experience

I had hoped that as I got older, my diabetes management would improve, but it proved otherwise. In the summer of 2012, aged 13, I experienced what my family have described as a “traumatic” coma.

We had been on holiday abroad, where I had been experiencing frequent hypos. We didn’t know then that the heat affects your sugars. Shortly after we returned home, I woke up one day and carried out my usual, teenage, morning routine. I checked my phone, saw that it was nearly 11am, checked my notifications from Kik, and then…nothing.

The next thing I remember is waking up surrounded by paramedics holding a plate of jam toast and my parents standing in the doorway of my bedroom with horrified looks on their faces. I quickly learnt that, not only had I fallen into a hypoglycaemic coma, but I had fallen back on my head, meaning that my tongue was blocking my airways.

Finding out what happened

To fill in the gaps, I asked my family what their recollections of this incident were. My younger sister, who was ten at the time, recalls our mum asking her to check if I was awake. She came up to my bedroom and heard a snorting noise – which she originally thought was me having a laughing fit. She came into my room and found me unconscious and blue in the face as a result of my tongue blocking my airways. (I will forever be grateful to you, Phoebe, for being able to distinguish between a fit of laughter and me choking).

After telling our mum, mum ran upstairs, picked me up and in a flurry of panic, dropped me on my side so that my tongue would fall back out of my mouth, relieving my airways, whilst my dad called an ambulance.

Coming to terms with diabetic comas

I don’t remember feeling particularly concerned about the incident at the time. I certainly hadn’t realised the impact that it had on my family to have seen me in that state until we slowly began to talk about it in the months and years after.

For my dad, there was a realisation that there were certain things that he and my mum could not control, which led to clashes over my management. I viewed them asking me if I had injected or tested my sugars as pestering me. I think that my age, coupled with the fact that this was a time when I had an incredibly antagonistic relationship with and attitude towards my diabetes, meant that I simply did not consider the severity of it, its impact on my health, or on my family.

Getting support

I’m in a fortunate position in that I have incredibly supportive parents, sisters and friends, who make a life with type 1 far more manageable. Thankfully I haven’t had a diabetic coma since, and while diabetes can be difficult to navigate after a coma of that nature (and generally!), I was able to learn a lot from it. I’m on the Freestyle Libre now, which helps me manage my levels better.

Learning from a difficult experience

I always check my sugars as soon as I wake up. It’s an integral part of my morning routine. I never go to sleep on a low. Regardless of whether it is 9pm or 1am, I always check my sugars before I go to sleep so I can treat a hypo accordingly.

There is no “convenient” time to experience a hypo, and it is very easy to over-correct when low, out of impatience. Learning to be patient with my glucose has been the best way to stabilise my sugars and avoid those pesky peaks and troughs.

I always have diabetic supplies on me. There’s nothing more annoying than having to get up in the night and go to the kitchen for sugar boosts. There’s also nothing more dangerous than not having an immediate sugar boost within reach when low. Whether in bed, at work, or driving, I always carry sugar boosts with me.

Looking to the future of type 1

Having better type 1 tech in future would mean minimising the monitoring throughout the day. It would mean one less thing to be constantly thinking about.

As strange as it sounds, a cure for type 1 would take some adjusting to. I am accustomed to a life of regularly checking my blood sugars, thinking about how much insulin to inject, being extra cautious when there’s a bug (or pandemic) going around, buying copious amounts of orange juice and jelly babies and attending regular hospital appointments. A life without all these things would be (one would hope) a calmer life without having to scrutinise everything I consume for its impact on my diabetes or long-term health.

Also, a life with no injections? Who would complain about that?

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