Alona's Life with Type 1 Diabetes

Author: Альона ꑭ Шевченко
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In March 2020, just as the pandemic was hitting the UK where I'm based, I was diagnosed with #type1diabetes which is an incurable autoimmune disorder that requires extremely complex care. Exhausted rn but will later post about life with a disability in this 🧵 twitter.com/NataliaHodgins…

I'll write up this 🧵 about type 1 diabetes soon, I promise 😅

Average life expectancy of people who have type 1 diabetes is shortened by over 20 years.

That being said, I'm VERY grateful that it happened to me and I don't see it as a reason to feel sorry for me.

Attaching Insta stories from last year about living with it.

If you have type 1 diabetes, you don't know for sure whether you'll wake up when you go to bed. It's called "dead in bed (DIB) syndrome".

Some people my age I know have died from it. That makes me feel grateful when I wake up - waking up is simply not guaranteed to me.

I almost always wear a glucose monitoring sensor, either @dexcom or Libre.

Unlike most people with type 1 diabetes (T1D) in the UK, I've never used an insulin pump - I manage fine without it.

Before the 24th Feb I trained jiujitsu every day - not a good combo with pumps.

A very common misconception about Type 1 Diabetes is that I can't eat sugar.

❗️In reality it's the opposite - if my blood sugar drops low and I don't have sugar immediately, it's very dangerous.

I'd always prefer to leave the house without insulin to leaving without sugar.

Things people with Type 1 Diabetes DO NOT want to hear:

❗️unsolicited medical advice

❗️stories about all your relatives who died from diabetes but you're not sure what type they had

❗️"Do you have the good type or the bad type?" (I personally have the gangsta type 🔫)

Things people with T1D don't want to hear - Part II

⁉️"You got it late, it can still pass." No it can't. And it takes you 3 seconds to look it up and not say ignorant BS to me.

⁉️"I could never do this." - I wasn't planning to either, for the first 26 years of my life.

For the love of god, avoid asking "What did you do to get it?"

❌Type 1 Diabetes is NOT a lifestyle disease. It's an autoimmune disorder.

I was training Brazilian jiujitsu and having a fairly healthy diet when I was diagnosed. It's not something I could've prevented.

On a related note - some Twitter Spaces hosts who've been abusive to me online tried to guilt trip me basically saying that the fact that they have autism / Asperger's gives them a carte blanche to be assholes.

I wrote a whole 🧵 about why that is absolute nonsense 👇

Number of times I've weaponised my disability to justify being a bitch to people online is zero

Since the 24th Feb until now I've barely ever mentioned that I have a disability, but the bottom line is that I'm not the right person to be guiltripped with someone's Asperger's.

✨ Being diagnosed with Type 1 Diabetes means a COMPLETE change of lifestyle, whatever your lifestyle is before you develop T1D.

The first thing I asked the doctors at the hospital was "Will I still be able to train jiujitsu?!"

Their response was "to train what, sorry?"😹

I managed to get back into training quite soon after being diagnosed.

❓Did it get much harder than it was before? Obviously. But it's not impossible.

✅ "Accept the diagnosis, don't accept the prognosis" is my attitude to both type 1 diabetes and the war in Ukraine.

Glucose sensor 🪄

@gunittt12, take a look at 5/ of this 🧵

I have access to an insulin pump - not wearing one is a conscious decision🙂

Before 24th Feb, I was managing Type 1 Diabetes so well that you wouldn't see it on A1C test I even had diabetes at all - it's a very rare level of control