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

[fedupofthisshite]

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.

@fedupofthisshite Absolutely that, I didn’t know the name but DH has just told me and explained! Apparently it can be hereditary too.

The ones who make offhand jokes about it are extremely lucky that they don’t know the realities of Diabetes. Type 1 is one of the most complex conditions to live with and manage well!

Definitely not easy. From the one person I have known well with T1, it is at best very hard work and at worst, life-threateningly dangerous.

No, it is incredibly stressful and difficult, you have to be alert even when you're sleeping as your blood sugar might suddenly go up or down dramatically.

My husband has type 1 and has done since he was about 16. I remember when he was diagnosed and he got comments that it was his fault for eating too many cakes.

The amount of ignorance and compete lack of education about the condition is ridiculous.

People suck and they don't care. They don't care about your diabetes, or my mum's MS, etc etc. Very few people give a shit. They just want to hear how you caused this to yourself and that there's treatment and you should be all better. Try keto or some other insane suggestion just to make them feel better. Honestly most people are too selfish to really care so you really shouldn't listen to their opinions on how easy your life is and how hard theirs is.

Absolutely not easy. I've learnt from other people. It's an absolute pain in the arse illness with all the measuring blood glucose and then the worry about the consequences of it crashing. I think a lot of people just don't know much about it.

My goodness no! I think it must be an incredibly difficult condition to manage x

Fellow T1D here for nearly thirty years, now on pump and have self funded Dexcom for last six years but luckily was offered Dexcom 1 on NHS end of last year as I couldn’t afford to fund dexcom myself anymore.

it’s really relentless. Even those who live with you don’t quite understand how relentless it is, and mind numbingly boring to endlessly count carbs, work out what might cause you to go up or down, and even after nearly thirty years of attempting to manage it, I still somehow get it very wrong sometimes.

I get periods when I just want to walk away from it all for a few hours - if that coincides with the magical moment that both my pump and my cgm need to be pulled out and replaced, it’s the best thing in the world to have a bath or shower without two medical devices attached to you.

i survived two degrees, living overseas, two pregnancies, but I would say on reflection that some of that was probably fairly dicey at times, though without a cgm on me, I genuinely didn’t possibly how dicey.

I joke with my husband that I won’t live past 65, apparently the average age of a T1D to die who has had it for +20 years (a stat I looked up when I was in my twenties, I can’t remember the source, so have no idea if it’s correct). He thinks I am joking, sometimes it fills me with horror that I possibly only have another twenty five years or so left, if I am a “good” diabetic.

I was promised aged ten by my consultant that there would be a cure in the next ten years, well that didn’t happen. I am cynical enough now to realise that if a cure came (and to be honest why on earth would any pharmaceutical company discover a cure when they all make so much money out of T1D treatments? Turkeys voting for Christmas comes to mind) then I would be bottom of the pile for a cure, which I do understand why, even if it hurts to think of it.

it’s relentless, often tedious and boring, something you can never escape, and if you do try to ignore it you will find it coming to bite you in future decades…..

OP, I hear you, and hope you can find some strength in the number of other T1D people on here who can recognise your feelings, most of us feel it too. 💙

No because it nearly always shortens your life. I know two type 1. One got dementia and one had both legs smputated. Neither my choice of preferred death tbh. I think the jokes sometimes aren't jokes though. My friend ate a pack of biscuits a day in late pg and her midwife told her to stop or she would get diabetes. I think it was a genuine risk. As a parent to a child with ASD there are certain jokes and words that boil my piss but it's not my job to educate anyone. That's where madness lies. There will always be ignorance and stupidity. My relative told me people get diagnosed with asd and adhd because they are snowflakes and parents want to much for their kids at school. Ds couldn't talk at 7. What kind of privilege does she think he benefits from? Illiterate and unable to talk? It's not getting him ahead or any kind of normal childhood experience. Best to think of my blood pressure and let them.get on with it because these things aren't worth the stress

I'm not diabetic but I first heard of type 1 as a child when a girl in a novel I was reading was type 1 and ended in in hospital due to erratic blood sugar readings. I realised then it was very serious indeed.

And a few years ago my brothers wife who had type 1 died of pneumonia due to complications from diabetes.

I've always known it to be very serious and not a disease I've ever considered easy to manage.

A friend was asking me how my granddaughter was the other day. GD is 7 and Type 1, diagnosed late last year. He was there the day my DD rang to say GD was in intensive care with DKA after ooh medic sent her to A&E. I explained she’s had a few scary moments, a recent illness played havoc with her glucose levels but light is at the end of the tunnel as she’s getting an insulin pump which will hopefully ease the burden somewhat on her parents. He asked “ How long will she have the pump for, is it something she’ll grow out of ? “. He was really shocked when I said “No, it’s a life long condition, it’s treatable but it can never be cured, she’ll never grow out of it. She’s at risk of other autoimmune disorders, she couldn’t even go back to school after her diagnosis until two of her teachers had been trained in how to recognise a hypo or hyper, how to check her bg and give her injections. My friend was visibly shocked “I had no idea it was so serious, it’s worse than cancer in some ways, at least some cancers are curable.”
Just one example of the lack of understanding surrounding diabetes. Especially Type 1.

To anyone reading this thread who has just been diagnosed I would like to emphasise that having T1D is far from ideal but it is not the end of the world. Many of the people posting on here are talking about worst case scenarios (amputations, dementia, not living past 65yrs etc). Someone even suggested it was on par with have Parkinsons - really? My son has T1D and I'd much rather he had that than Parkinsons because T1D is largely manageable. It's a pain, but it's manageable in away Parkinsons isn't.

Thirty years ago I was nursing and cared for many patients with T1D who had lived long past 65 years and that was in the days of drawing up your own insulin, no carb counting, no tech so it must have been an absolute nightmare to manage.

Look on diabetes .co .uk. there is a fantastic thread there written by people with diabetes who have had it for >50 years in some cases and are still going strong. It is truly inspiring and when my son was diagnosed and we were reeling from the shock I took a lot of strength from it.

There is no doubt that managing T1D can be very testing and it is a serious illness, I'm not saying it isn't but focusing on the negatives doesn't help I find.

Also people saying they are scared their BS could suddenly drop over night and they might die. Please sort out your basal insulin and don't drink alcohol before bed - or go to bed on a huge spike.

It's a very difficult condition OP and has a huge impact on lives. I've lost people to it sadly.

Unfortunately there is a lot of ignorance surrounding diabetes and many mix up the types.

There are exciting breakthroughs being made though so reasons to be hopeful.

BS can drop suddenly overnight whatever you do. It's not as simple as 'sorting out your basal insulin', some people just have very volatile diabetes – one of mine did and one didn't, they could exactly the same for dinner, go to bed at the same time and one would remain stable and the other would drop like a stone. You do have to be constantly vigilant, it's one of the hardest aspects of the condition.

It's a terrible disease. One of my dearest friends suffers terribly, her type-1 is very difficult to manage. She has had so many near misses with low-blood sugar plus other worse outcomes. I am so fearful for her.

I'm sorry I didn't mean to coma across as unsympathetic. I realise that some people have a more brittle type of diabetes which must be a nightmare.

From what I understand from nursing and from personal experience diabetes management is so incredibly personal and individual and even that can change on a daily basis. Maybe one of your children, assuming they were the same weight/age/sex metabolised the insulin differently that the other one? Maybe one injected closer to muscle and so the action of the insulin was faster for one so they avoided a low later on, maybe one had a drink of milk after eating which slowed down the absorption of carbs so the insulin had more to work on later so they didn't go low? Maybe your children are genetically distinct so insulin is just metabolised differently for each of them? The permutations are endless as I'm sure you know !!

Thanks @BloodyHellKen DH was diagnosed yesterday and I was reading through this thread hoping to get insight into how I could best support him, but instead just felt the fear and anxiety rising.

From what I understand from nursing and from personal experience diabetes management is so incredibly personal and individual and even that can change on a daily basis

Yes, absolutely spot on. Always encouraged our two with it to assume that they knew more about their diabetes than anyone else did. And that extends to most medical staff tbh. You have to learn how your own body reacts to various forms of carbs (and proteins to a lesser extent), to various forms of exercise, to alcohol, to stress, to travel, and to all the myriad other aspects of life.

What made the difference for the one who was more volatile was switching to a pump – because she's a scientist she wants to know all the latest research data and stats, she's probably a nightmare patient…

Not at all. Our son essentially died for it aged 31.

What breakthroughs are there? As a parent of a type 1 I am desperate for some cure / easier way to manage it for my child.

There is all sorts going on that looks extremely promising.

Amongst others - clinical trials have started that have been shown to replace insulin producing beta cells/stem cell therapy. The Swiss have identified a protein they believe can replace insulin and the Americans have just licensed the first ever treatment proven to delay type 1. The cure is on the horizon.

Thanks. Sounds promising. I will get googling.

I wish T1 and T2 had different names because they are different diseases. Type 1 killed my first husband because in his case it was so inconsistent and erratic and therefore difficult to control - acute pancreatitis caused it. Paramedics were regular visitors here - we knew them all by name.
His endocrinologist called it a matrix disease that opens the door and invites other diseases in. Atrial fibrillation and encephalitis in my husband's case. On top of the T1.
One of my wards developed it when she was 14 as a side effect of measles. She's coping but her teenage years weren't full of fun. Innoculate against measles please.

I wish people were aware you can be diagnosed with T2 after contracting viruses and other health issues as well.

Absolutely fucking not. My husband has T1D and I work in T1D research. It is absolutely unrelenting. Anyone who thinks anything different is misinformed at best.