I’m type 1 diabetic AMA

[Moonicorn]

Not particularly unusual or interesting. But I’m quite a few years down the line now, and wondered if any parents of newly diagnosed kids wanted to ask anything - maybe things they don’t feel they can ask the doctors, or about the more ‘social’ side of the illness. Or just anyone who wants to know anything really!

I’m also T1 and I think the fact this was literally the only thread I could see on AMA with not one single reply says absolutely everything about society’s attitude to people with T1. I honestly believe we have one of the absolute worst illnesses in the world (bar something degenerative). No cure, can be fatal, not allowed to forget about it for even one hour of the day, and not an iota of fucking interest let alone sympathy from anyone despite that it can literally kill us (and in fact a Mumsnetter I know died at the age of 40 from a hypo leaving behind small children). If anything it’s viewed as a hilarious punchline. Just gives me the rage when I think about it.

Can I ask if you developed T1 before or after puberty and if before how it affected you? I have a pre teen boy in my extended family and he's very worried about his future. Are there any camps in the UK he could go on?

Thank you for starting this thread. Absolute admiration to all T1s for the reasons given by snugglyduckling as it's a bastard to live with.

Do you use any tech or are you still finger pricking and injecting?

What were your earliest symptoms?
Did it take long for you to be diagnosed?

Thanks for doing this.

@TheSnugglyDuckling im sorry for some reason the thread sort of got buried beneath all my other ones! Yes, I feel all of those things. I try to remind myself though of how little I know about other people’s conditions - I could easily piss somebody off ‘in reverse’ by underestimating how serious theirs is, if that makes sense. For me the worst bit is ‘not even an hour off’. Never. Ever. For life. That and the thought of one of my kids getting it through my crap genetics!

@GrumpyOldArse after puberty. Which makes me both lucky and unlucky I suppose. I was completely off the rails as a teen but somewhat on them when I developed it. I dread to think what would’ve happened if I had been diabetic 10 years earlier. Is he a sensible sort of boy? I would get in touch with Diabetes U.K. for info on groups/possible camps - I was too old for all that at 23!

@Badatmostthings thanks! I’m now using the libre which is an absolute game changer - just amazing. I don’t carry around any equipment now bar my mobile (which reads the sugar level), insulin pen and needles, and a lucozade in case of hypos. It’s transformed diabetes for me, taken away probably 50% of the day to day hassle. A pump has been suggested but it’s personal preference and I don’t feel I’m there yet.

No problem I’m happy to help, in particular parents worried about their teens - I know a mum very worried about her teen son as he’s fighting the diabetes, rebelling and she’s so worried about him. I have a few tips for any parents in such a position if needs be (practical ones to do with meds and so on).

Earliest symptoms… weight loss, very slow at first but then faster and faster. Thirst which crept on over about 2 weeks. I’ve said ever since if you want to know how to torture someone, just find a way of giving them ‘diabetes thirst’. It’s like you’ve run a marathon in the Sahara but nothing can quench it. A few weeks after that, I noticed my eyesight was very blurred, particularly when looking at lights in the darkness (ie the light up sign on the bus at night). Then opportunistic infections - I got a raging candida infection in my mouth and throat. Final symptom was vomiting blood - I was in DKA and my blood was acidic so it was eroding my throat and causing me to cough up blood. Went to A&E where a few things were mooted (including HIV - quite similar symptoms) where blood tests showed an HBA1C over 160. Lucky to be alive to be honest! All in all, maybe 6 weeks from ‘somethings up’ to diagnosis.

How long have you had type 1? I've had it 21 years and it's still hideously awful.

The most random place you've found a blood testing strip?

I hear ya. I was on a thread recently where the OP's son had symptoms of T1 (turned out it was) and was told to go to A&E. Cue lots of posters who know nothing about it saying it didn't warrant A&E 🙄 Op was also told to apply for DLA (most kids with T1 are entitled to the highest rate due to the care involved). Cue lots of posters who know nothing about it saying they won't get DLA 'just' because of diabetes (I know adults with T1 don't receive it but that's another thread...).

Sorry to hijack OP. Dd was diagnosed with it when she was a toddler and it's a horrible disease. I wish you and and everyone else who's dealing with it all the best.

8 years now. 21 must have felt like a very very long road. Sending 💐 and even some 🍫!

Stuck to my bum when I got out of bed stray needles are nowhere near as funny (luckily that’s only happened once or twice)

Jumping in as a fellow Type 1 diaignosed as an adult aged 45
If I'm being kind, I think in response to @TheSnugglyDuckling which I do agree with re people's lack of interest or understanding is that I knew very little about T1 until I was diagnosed with it myself.
So now I also feel really hurt and frustrated and the lack of understanding but I have to remind myself that I couldn't have told you the difference between T1 and T2 (neither could my GP when I insisted it was not T2 after further reading but thats another story)
I didn't know a fellow MN had died after a hypo sad
I'm all about the tech. Love it. Fought for it and now I'm Closed looping
Aka 'artificial pancreas' which is done by me using the nhs sensors with a transmitter from the DIY community.
(NHS won't officially fund) & a pump which is nhs funded.
This makes my life so much easier and has massively reduced the mental load and improved my hba1c (44 at last appointment which for a T1 is not bad )
We'll have to just turn it into a T1 chat if nobody is interested in AMA

Haha yes. Test strip on the butt cheek/cheek/DH's butt cheek

@Moonicorn thanks for the chocolate sending some back chocolate it's 12g carbs per 3 squares
Have you got a pump?

@Moonicorn Thank you. He's not that sensible, concentrates on how unfair it all is and how everyone can eat what they want. Food is big in his family and healthy eating not that much sadly. On top of it being a boy approaching teenage years he's constantly hungry.

Got him online with me now - he'd like to know what your diet is like and what is your blood sugar?

I have a background as a DSM & worked on the big looping trials. Now in pump/looping education.

I feel like the driving force for better (lifesaving) tech is parents/PWD (esp parents of PWD) but that physicians can often be the hate keepers.

has this been your experience? Also, what makes for a great pump start/pump educator as a PWD?

@HumourReplacementTherapy 44 is fantastic! I’m 35 weeks pregnant and currently 37, lowest it’s ever been 😎 I also have a 3 year old. So any queries re type 1 and pregnancy/birth I could try to help with if anyone wants to know anything…

@pringlesinacan no pump yet, my control has always been okay (HBA1C in 40s or 50s) so at the moment I’m not sure I need it but that could change. Do you have one? I’m not very knowledgable about them to be honest.

@GrumpyOldArse in theory he can eat what he wants if he gets his injection doses right, although that’s easier to do with lower carb or smaller portions of food. Poor kid are his parents engaged with the process or underestimating it do you think?

@Chewyspree hopefully Pringle can jump in there as I know sod all about pumps!

Involvement varies from micro managing to him having to go it alone. He's certainly not catered for separately. Blood sugar is all over the shop. Also don't think he always writes everything down. So lots of small meals is better than fewer bigger ones? The other thing he's concerned about is growth stunt and being able to have a family when he's older.

Researching closed system now @HumourReplacementTherapy Didn't know they exist.

Glad I'm not the only one!

34 years in here. I really wish it could be renamed something else do people would stop making assumptions. Kudos to all the parents managing it, we never switch off but neither do you. For those thinking about a pump mine was absolutely life changing, I would never be without it now.

Gosh I don’t know where he’s getting his info from but I’ve never heard of t1 causing stunted growth? Equally while there is probably some research out there about lessened fertility, in the way there is with many common conditions, generally conceiving isn’t an issue - and it’s better for the dad to have it than the mum (if one must!) for obvious reasons. My kids were conceived after 1 and 2 months of trying. It sounds like he needs somebody who has an up to date knowledge of t1 to put his fears to bed, it isn’t like Steel Magnolias any more.

DC2 hasn’t been born yet, but bar monitoring and routine extra appointments DD was a completely standard pregnancy, and is now a healthy and happy 3 year old.

Sorry to jump in but re growth stunt - my dd has been diabetic since the age of 2, now 15. As you might imagine, blood sugars have been all over the place in that time but she's now 5ft 9, same height as non-diabetic me. (I realise that's a sample of one though).

Do you find it frustrating that T2 diabetes has the stigma attached to it which it does and people then attach that stigma to you?