AIBU diabetes not a big deal

My son doesn't have diabetes but he needs parenteral nutrition which caused havoc with his blood sugars to the point he was actually under the diabetes team for a while and had dexcom. It stabilised eventually and he hasn't had any further issues but because of that, I know that diabetes is most definitely a big deal.

Yes the manufactors of Barbie get a lot of criticism but i do like that are trying to be inclusive .

Stacey. I learnt a lot about diabetes from that character!

They have a tv show now which shows it.

there is also a barbie who wears a pump.

I'm not diabetic but I understand it's a huge deal. A family member died due to complications from type 1. She left behind a young dc.

Im so sorry thats tragic
My son waa in intensive care for three weeks
It can be an extremely difficult to manage condition .

It sounds incredibly hard OP. I don't think for one minute I ever thought it was easy though.

When I was a young teenager there was a popular series of books which tried to normalise type 1 (The Babysitters' Club). I think where were a few other cultural representations around that time too - all trying to show that you could live a normal life with type 1. I wonder if in trying to remove a stigma they have created the false belief that it's not a big deal.

Our son died from it age 31.

It’s a huge deal. T1 people should die every single day, but are artificially kept alive through an endless series of calculations and interventions.
My own wonderful T1 daughter (16) is amazing. She plays a contact sport at a very high level, is expecting great GCSE results and has a wonderful social life. But she’s also constantly exhausted, weepy and has developed OCD as a result of the endless focus on health and cleanliness. Nothing is easy, even though she makes it look as though it is.

When I was at school, one girl developed diabetes. As part of an English project she gave a talk about it to her class. The talk was so good they asked her if she would go into other classes to educate us. I think she was very brave to do it, and I hope it stuck with others as much as it did with me. Sometimes I think kids take things in better and have more empathy than the grown ups.

Pumps can be even more traumatic. My child asks for the injections! She has to have the pump unfortunately as it's more accurate for her size and needs (she's only 4) but even the pump is a needle and a cannula and changed every three days. Plus the sensor ever ten days. ☹️

Oh my goodness yes yes yes yes I can relate! My 4 year old was diagnosed few months ago, apart from the whole, she could go into a coma if too low or get keytonacidtosis if too high, it's also traumatic watching your child petrified of you coming near them to change a pump, insert a needle, do a finger prick test. Not to mention the constant sleepless nights where the alarm is non stop. There is so much I could say but you already understand so I don't need to. People are ignorant. But I try not to let them make me mad. I do educate them on the realities of it when they decide to make some smart remark like "I have type 2" when 1, it's not the same and 2, you're a fully grown adult so I'm guessing you don't need a freaking carer and you've grown a pair and decided you're not petrified of needles anymore. People are ridiculous. Honestly 😂

As a type 1 diabetic for over 25 years. It’s a huge deal. It takes over your life. My work colleagues can be quite dismissive about it & act like it’s no big deal, I don’t say anything but it pisses me off. The not understanding the difference between type 1 & 2 makes my blood boil. I explain it that type 2 is a grass snake and type one is a 20ft anaconda 🤣

Have you been on a DAFNE course I found that really helped my mum & I when I was first diagnosed.

Hope it gets easier for you and your little one.🤗

It's a massive big deal! Even as a nurse I had no idea what was in store for me as a parent with a newly diagnosed 7 year old. I actually had to give up work to provide the amount of care he needed 24/7. We did a research project over 6 months when he was 9 which meant kids were then able to access faster acting insulin which helped his control a lot.
Everything was geared around his medical needs at home and I never knew what the day might bring. School were pretty hopeless.
I was still getting up regularly in the night to him at secondary school because he did a lot of sport which caused hypos when he was asleep. Control is particularly hard due to growth hormones in the teens. Illness, surgery or dental work needs much more planning.
He is a dad now and has a career in science but it's a lot for him to keep on top of when the kids bring home nursery bugs and it affects his blood sugars. It's great now that he finally has a continuous blood sugar monitor though so he isn't pricking fingers more than 5 times a day.

That must be so upsetting. I am often amazed by what people say to/about others.

could you say ‘I don’t find that very supportive, but I imagine you are trying to be reassuring’? Or is it better to blank it?

Its a sobering thought isnt it
My son was diagnosed in DkA he was very unwell
Fortunatley he collapsed in front of his Dad who and he shouted downstirs to me to phone 999
I say fortunatley because if he hsd gone to sleep i dont think he would have woken up.

That is a shocking and very sobering observation. It's basically life versus death. That's what many people don't understand.

Incidentally, I was reading a brief biography of the chap who appears as Count Binface. His adult brother was found dead in his flat after relatives became worried and called the police. A post-mortem found he had been undiagnosed Type 1.

OP, you and your son are stars to have got through all that. People are just ignorant. x

my 21 year old daughter has type 1. She was diagnosed at 18. the impact on her life has been huge. They have a psychologist in the diabetes department of our hospital and there’s a reason for that. Despite having dexcom and omnipod 5 pump, she’s still having to keep
on top of it 24/7. There’s only been a cure for
it since the early 1920’s. Before that, people died. It was a terminal illness. The way I think of it is that she’s holding back a terminal disease 24/7.

Unfortunately, exactly this. People seem to dismiss a lot of serious conditions if it interrupts their narrative, most manipulate facts to suit their needs. Most don’t to maintain a sense of moral superiority. Eg thinking all diabetes is caused by bad diet - “I’m better than you as I don’t have it” “you enjoy playing the victim” depression “just snap out of it” - ie “I’m better than you, I have a strong mind” neuro diversity - “you just need to try harder/stop making excuses” ie I work hard/find things easy because I’m better than you.

People are idiots. Just ignore them

DH has his set to go off as an alarm (he wouldn't wake if it was buzzing). Can you change the alert ring tone?
YANBU at all OP - it is a big deal and people don't realise. DH was diagnosed in his 30s and is now 70 - it's been a big part of his life and he started out with injections, I think before even pens were available, and finger pricks.

Steel Magnolias brought it home to me just how serious diabetes is. Julia Roberts' character is told not to get pregnant because of the strain on her organs. Until I saw it, I thought it was just a matter of watching your intake of sugary carbs and periodically injecting medication.
I'm in my 50s and can vaguely recall my aunt buying 'diabetes biscuits' in Boots!

I read somewhere that a Dr said HIV is preferable to diabetes in terms of how badly diabetes affects your life. So I can well believe how serious it is.

Pumps are amazing but not a quick fix and they only really take away the need for injections. You still get highs and lows to deal with, constant alarms including at night, still have to carb count and input that into the pump. They take away the visible aspect which is injecting so everyone thinks it’s far easier to manage diabetes with it but it’s all still there. Managing lows when exercising, highs after carb heavy food still all happen. The constant decision making never goes away and the other variables like stress, excitement, hot weather, other illnesses all still impact your glucose levels and need managing. Pumps are also not widely available everywhere, it very much depends on your NHS area, length of diagnosis, hba1c levels etc. The diabetes tech is brilliant and helps but it is not a cure and your life will always be governed by it if you have.

I’m sorry OP. My friend has a T1 child and I had no idea how much it affects their lives until I saw it first hand.

she can no longer work as she has to be on call for the school at all times. Constant notifications on her phone of numbers. Hospital appointments very often for reviews. Cannula changes, set changes, alarms in the middle of the night. Can’t leave the house with a bag full of medical items. Constant calculations of carbs, processing what her child can or should have next. Trying to get her child to stop and sit down when low at a park. The worry about their future health. It’s incessant and it’s exhausting and it is never ever easy.