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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Do you think Type 1 Diabetes is an easy disease to have?

207 replies

fedupofthisshite · 24/04/2023 21:15

I am just curious about what people think, what their impressions are. "Diabetes" is frequently used as the punchline for a joke about some unhealthy food, and while this is mostly aimed at Type 2 (I feel nothing but sympathy for Type 2 people as well, btw and just wish the jokes would stop) it's still quite shit because it seems like everyone thinks diabetes in general is something pathetic that you snigger at.

I have Type 1 almost 30 years and still get days where I fucking hate it so much. Today is one of those days...

It has taken an awful lot from me and I wonder what my life would be like otherwise.

OP posts:
Oblomov23 · 24/04/2023 21:37

Why are you phrasing it in this way OP? Not helpful.
I'm 50, T1 since the age of 1, so for 49 years. It's a shit disease. It's an autoimmune disease. It means the body is constantly fighting itself, eating away at itself.

It's all s balancing act. It's very invasive. It's 24/7, 365 days a year, no break. I think about it many many times per day.

Before I even open my eyes, I guess my blood sugar. I wonder if I'm low now, have I been low during the night, am I the right blood glucose is now in order to get up out of bed.

I think about my day, what I'm going to have a breakfast, whether I'm taking the boys to school or whether I'm walking to school. I've got a work meeting at 10 o'clock so I need to run my blood sugars a bit high for that. and what I'm going to do later and whether I need more insulin or less insulin for this or for that and what we're going to have for dinner and how much exercise I'm going to do and if I'm emotionally loving something or if I'm stressed. All change my blood sugar, loads and loads of things affect my blood sugar.

and all of this is a balancing act, and I have to think about it many many times throughout the day, more so than anyone else looks at their phone say. more so than anyone goes to the toilet. it's ridiculous and it's very invasive.

it's worse when I have very bad hypos. Rare. It does brain damage to my brain. it's generally a really shitty disease and I wouldn't wish it on anyone and to suggest anything else - Even for those that don't have it as badly as me, whose diabetes isn't as brittle as mine, is absolutely offensive.

YorkshireGoddess · 24/04/2023 21:37

You are not being unreasonable - it's a condition of ups and downs.

I'm 34yrs in and like you still have good and bad day. Be kind to yourself - this is just one of those blips

foodtoorder · 24/04/2023 21:38

Nearly 30 years in and it is not an easy condition to live with.

Ofcourse I know how to look after myself and all the things I should be doing however having type 1 diabetes has also come with an eating and mental health disorder which prevents me from doing all the things I know I should be done.

There is no specialist care for this in my area. So I live in constant swing of guilt and fear v's trying desperately hard to keep on the straight and narrow that's expected to be achieved.

Fleurty · 24/04/2023 21:40

Sorry to tell you this @LucifersLight but this is one of the things that makes it hard to live with. Im sure youre trying to be helpful but the OP didn't ask for diets to try, and I'm sure they know far far more about how to manage their diabetes than anyone who has never lived with it does. If I had a fiver for everytime someone has suggested I try a different diet, asked me 'should you be eating that', or given other unsolicited advice I'd be funding artificial pancreas research. A keto diet won't help with the mental fatigue t1d creates.

fedupofthisshite · 24/04/2023 21:44

LucifersLight · 24/04/2023 21:25

No, must be a nightmare.

I’m sure you’ve considered it or even might already do it but I’ll sugest you try keto:

https://www.diabetes.co.uk/keto/

Nope.

I do eat low carb quite a lot, and regularly use some keto stuff, but prolonged low carbing does not work for me - it gradually increases insulin resistance in me.

I maintain my nicely sharp insulin sensitivity (incredibly important after almost 30 years of this bullshit game) by carb cycling. Works well.

Different strokes for different folks.

OP posts:
JudgeRudy · 24/04/2023 21:45

I work for the NHS Diabetes Team. Our Trust acknowledge that poor psychological wellbeing is commonplace for those living with this condition. We are committed to to a holistic approach and our Trust's Psychological Service has a specialist branch dedicated entirely to people with Diabetes. We offer group and 1 to 1 CBT (cognitive behavioral therapy) amongst other things, and can refer to MH services too without needing to go through your GP or Practice Nurse. Unfortunately l know this isn't available nationally.
Diabetes UK have a number of local support groups as well as a national online and telephone support. It really is an excellent site.

otherwayup · 24/04/2023 21:46

Oblomov23 · 24/04/2023 21:37

Why are you phrasing it in this way OP? Not helpful.
I'm 50, T1 since the age of 1, so for 49 years. It's a shit disease. It's an autoimmune disease. It means the body is constantly fighting itself, eating away at itself.

It's all s balancing act. It's very invasive. It's 24/7, 365 days a year, no break. I think about it many many times per day.

Before I even open my eyes, I guess my blood sugar. I wonder if I'm low now, have I been low during the night, am I the right blood glucose is now in order to get up out of bed.

I think about my day, what I'm going to have a breakfast, whether I'm taking the boys to school or whether I'm walking to school. I've got a work meeting at 10 o'clock so I need to run my blood sugars a bit high for that. and what I'm going to do later and whether I need more insulin or less insulin for this or for that and what we're going to have for dinner and how much exercise I'm going to do and if I'm emotionally loving something or if I'm stressed. All change my blood sugar, loads and loads of things affect my blood sugar.

and all of this is a balancing act, and I have to think about it many many times throughout the day, more so than anyone else looks at their phone say. more so than anyone goes to the toilet. it's ridiculous and it's very invasive.

it's worse when I have very bad hypos. Rare. It does brain damage to my brain. it's generally a really shitty disease and I wouldn't wish it on anyone and to suggest anything else - Even for those that don't have it as badly as me, whose diabetes isn't as brittle as mine, is absolutely offensive.

This pretty much sums it up!

Dh is type 1. It's a hideous condition that he never gets a break from.
It's the first thing he thinks about when he wakes up and last thing before he goes to sleep.
It's a relentless, hard slog and often massively misunderstood.

otherwayup · 24/04/2023 21:48

LucifersLight · 24/04/2023 21:25

No, must be a nightmare.

I’m sure you’ve considered it or even might already do it but I’ll sugest you try keto:

https://www.diabetes.co.uk/keto/

Oh look, how original, somebody giving pointless/dangerous advice about something they clearly know NOTHING about 🙄

fedupofthisshite · 24/04/2023 21:48

Fleurty · 24/04/2023 21:40

Sorry to tell you this @LucifersLight but this is one of the things that makes it hard to live with. Im sure youre trying to be helpful but the OP didn't ask for diets to try, and I'm sure they know far far more about how to manage their diabetes than anyone who has never lived with it does. If I had a fiver for everytime someone has suggested I try a different diet, asked me 'should you be eating that', or given other unsolicited advice I'd be funding artificial pancreas research. A keto diet won't help with the mental fatigue t1d creates.

All of this too.

OP posts:
ColinRobinsonsFart · 24/04/2023 21:49

I am the mum of a type 1 - she was at primary school when it started- she is in her 30s now.

i have the t-shirt etc!

i have just been diagnosed with type 2 - my lupus has decided my liver and pancreas are fair game now so that’s a bummer.

diabetes is not easy - much love being sent to you

TheShade · 24/04/2023 21:49

No, not easy.

ladygindiva · 24/04/2023 21:50

No I'm sure it's difficult, having seen my ex struggle with it.

JudgeRudy · 24/04/2023 21:51

Peachyscream · 24/04/2023 21:32

I'm newly diagnosed and it's so overwhelming. The thought of managing this every single day is just so depressing.

If you're newly diagnosed ask to attend a structured group education session. The main ones are 1 day (or 2 x1/2) for DESMOND (for T2) or 4/5 days for DAFNE (T1)

Thepossibility · 24/04/2023 21:52

I think some people must be a bit thick, and yes getting the two confused.
A lot of people do bring type 2 onto themselves with atrocious lifestyle choices though but it's still not easy.
Looking at the unhealing wounds on my Pop's legs and feet make it look very hard going to me.

SpringViolet · 24/04/2023 22:00

Not all an easy disease to have!

DS (12) was diagnosed 8 months ago and it has been a waking nightmare for us as parents. It has had a massive effect on his school attendance, desire to leave the house or do any exercise as well as disrupted sleep as treatment needed for highs or lows. It is never going to get better or be cured (realistically) and you have to think about it 24/7.

Have to count every carb he eats and he can no longer rummage in the fridge or cupboard for snacks which might be minor but it’s pretty big for an almost teen who is 5ft 9 already and still growing quickly, in terms of living a normal life.

Had to take myself away for a cry at Christmas/Easter (first since diagnosis) as he can’t just eat chocolate or sweets anymore like other DC.

I used to be terrified he’d have a fatal low in his sleep for the first few months.

Thank god for his Dexcom which I had to self fund until this month. I dread to think how people who can’t get a CGM manage.

uncomfortablydumb53 · 24/04/2023 22:08

Absolutely not My DM was T1

SlumMumBum · 24/04/2023 22:14

I was waiting for someone to mention keto. That's clearly rubbish but did you know that cinnamon can cure Type 1 Wink

My child lives with Type 1. It's horrible. So much pressure to carb count, remember insulin, all while trying to get on with the serious business of being a child.

I've just had to wake them up for a finger prick because their levels are inexplicably high, they've just cried that they just want to sleep.

I fucking hate it today but there have been other days when I've marvelled at the wonder of the human body, modern medicine and the true grit and determination with which my child and other T1s face every day.

Allsizes8to14 · 24/04/2023 22:16

My husband is T1 and just passed the 30yr since diagnosis mark, 24 of those we’ve been together and it’s a shit condition. Absolutely not easy! So frustrating when people just think it’s a case of ‘eat abit healthier’ is all that’s needed. Lack of education defo part of the problem sadly

wishful2012 · 24/04/2023 22:19

T1 here !! I just want a day off of the constant bloods, injections, highs, lows and the exhaustion

AppallinglyReheated · 24/04/2023 22:21

It's not fun and im not T1, I am insulin resistant, insulin dependent T2, which i keep controlled with a low cal/low ish carb diet and a fuck ton of insulin.

I tried keeping it controlled with low carb/keto/low cal, but that a/ didn't work b/ is a major risk factor for my heart problems and also my inoperable gallstones... so after a year of refusing insulin, gave in..

I've just added Ozempic today, so that will be weeks of feeling sick as well as the very limited boring diet, and weight-gain amounts of insulin if I even look at 'normal' (meat n two veg' type foods.

The fear of hypos in your sleep, or hypos in my case where im NOT in control of where I go (I am also disabled, I am reliant on whoever is with me in many cases to fetch something, act fast etc. Two of my family members think they can just leave me having a hypo, or going hyper, and not pass my kit, not fetch something to eat etc etc, so now I can't go anywhere with just them as they'll just kill me!).

Worrying if ill lose the use of my feet entirely, will I go blind, is my nerve damage diabetes related (no, apparently, it is compression in the spine, but the diabetes means im less likely to get that treated!)...

Just the miserable relentless day in, day out, FOREVER aspect of chronic, lifelong illness, there are no days off from it.

T1 I think 'looks' like it might be fairly easy to deal with, from an outsider perspective - because they're not privy to all the thinking that has to go on, all the worrying, all the what ifs and the control that needs to be had. Compared to a health condition that requires a wheelchair or some other obvious visual aid or difficulty, it probably looks pretty 'easy'... but as with maaaaaaaany things, outsiders, those who do not experience these things themselves, will always have a much more simplistic view of things!

Leftoverssandwich · 24/04/2023 22:23

My lovely friend died of complications of T1 before her 40th birthday. She neglected herself in her teens, rebelling against the regime she’d been on since childhood (and I’m told this is not uncommon), and permanently damaged her kidneys. Naively before this I’d thought it was a disease that was ‘sorted’ - a job after food and job done. You have my every sympathy.

ejbaxa · 24/04/2023 22:23

People are ignorant about type 1 diabetes. It is not easy at all and must be scary.

People are also ignorant about type 2 diabetes. They just think that people with it are fat lazy shits. Although type 2 can be helped by a carefully controlled diet, it remains factual that it has a significant genetic element.

I don't have either, but two of my siblings have type 2, also 2 uncles and my nana.

Both my teenagers have studied type 1 and type 2 in GCSE biology. I am not sure why people are so ignorant.

SallyWD · 24/04/2023 22:24

No definitely not. I think it's a very serious condition.

MeMyCatsAndMyBooks · 24/04/2023 22:26

Absolutely fucking not.
My 7 year old ds was diagnosed last month, I hate it with every ounce of my being if I could whip out my pancreas and give it to him I would.

MeMyCatsAndMyBooks · 24/04/2023 22:29

That said.... anyone seen the research in Washington? They believe they are onto a cure for T1D with stem cell treatment.

www.nytimes.com/2021/11/27/health/diabetes-cure-stem-cells.html

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