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Juvenile diabetes?

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Hey @Spozkins im 56 this month and I was diagnosed when I was 7 so next year will be my 50th year with it and touch wood no real issues with it yet.
I wasn’t the best at taking care of it in the late 80’s and most of the 90’s but I’m still here and more or less fighting fit. I’m sure with modern technology and treatments your going to be fine and it’s not far until you won’t have to even think about it.
I wish you a great onwards journey with your diabetes
 
I'm so sorry to hear of your experience @Flower but I feel much less alone after reading it and I really appreciate you opening up about it.

I'm so glad I decided to actually join the community because I think the support and accountability is really important.
 
@paulbreevery Really pleased that you're still plodding along, its reassuring to remind myself I might actually have a decent quality of life now and then!
 
18 when diagnosed, wasn't surprised to get diagnosis but knew very little about diabetes, was getting really ill leading up to going to hospital.

Just got on with it, had no choice as little support then as there is now. Never really dwelled on condition & prefer to get on with life, can be pain in backside lot of times but it is what it is, bg control is best its been but lot of that down to tech, pump & libre has helped enormously in achieving that.

Never good time to be diagnosed Spozkins, diabetes is liveable condition & with tech available now its a good as time as ever to be dealing with condition, lot of what we have now simply wasn't available decades before.
 
Spozkins said:
@paulbreevery Really pleased that you're still plodding along, its reassuring to remind myself I might actually have a decent quality of life now and then!
Click to expand...
Best thing in my eyes is live your life, I have, had a lot of fun and I mean a lot, have a successful business, just opening another one, have a great family, just became a grandad... never look back only forward to what’s next and absolutely not plodding lol
 
Hi @Spozkins

I haven’t been about on the forum for some time, but I was diagnosed when I was 11 in 1978.

Like most of us I’ve been faced with the negative stories of what life might hold (these used to turn my mum into a furious warrior mum). Not a huge amount of information pre internet in 1978, so my mum set up a support group for parents in our area. Each month there would be a talk by an expert related to diabetes. I was fortunate I to have great doctors, all with a positive attitude, so I was very much encouraged to also have a positive outlook, look after myself and live life.

Diabetes and I have toddled along together pretty much ok (touch wood and whistle), although I have the same frustrations, ups and downs, as everyone else, I think that’s only natural with any condition. I have wondered if my attitude and acceptance of diabetes is due to the other children I was in hospital with at the time, who all appeared to be there for things far worse than I had, or whether it’s just how I am.

I feel fortunate (?) to have the tests that we get, as I look at it that we get a heads up on anything coming our way in time to head it off or deal with it. All things that can effect people without diabetes too.

So we continue to toddle along together. I do my very best to look after myself, keep fit, eat well and try hard not let diabetes rule my life (easier said than done at times I know).... what more can we do?

I hope all the replies have helped. 🙂
 
I was diagnosed in 1967 at the age of 11. I spent two weeks in hospital learning how to do my once daily injections and urine testing etc. You guys who have blood test meters, pumps, Libres etc from an early day in your diabetes lives have a much better chance of getting this thing beat than we did back then.

I never really got to grips with it until I was about 40, after ignoring it mostly up until then. Apart from not expecting to live beyond age 50, I do not recall any other warnings about the complications I might suffer, though I may well have been told I just don’t remember.
Only when I moved to a town with a GP who was actually interested in diabetes, and he found the first signs of background retinopathy, did I become aware of (or acknowledge) the possible long term effects.

if long term damage from my long term neglect is going to happen, it hasn’t yet, and I must just accept it if and when it eventually catches up with me.
I still do not let it control my life, and I do not obsess about BS readings etc. I’m probably a pretty bad example to anyone else though tbqh!
 
Lisa66 said:
Hi @Spozkins

I haven’t been about on the forum for some time, but I was diagnosed when I was 11 in 1978.

Like most of us I’ve been faced with the negative stories of what life might hold (these used to turn my mum into a furious warrior mum). Not a huge amount of information pre internet in 1978, so my mum set up a support group for parents in our area. Each month there would be a talk by an expert related to diabetes. I was fortunate I to have great doctors, all with a positive attitude, so I was very much encouraged to also have a positive outlook, look after myself and live life.

Diabetes and I have toddled along together pretty much ok (touch wood and whistle), although I have the same frustrations, ups and downs, as everyone else, I think that’s only natural with any condition. I have wondered if my attitude and acceptance of diabetes is due to the other children I was in hospital with at the time, who all appeared to be there for things far worse than I had, or whether it’s just how I am.

I feel fortunate (?) to have the tests that we get, as I look at it that we get a heads up on anything coming our way in time to head it off or deal with it. All things that can effect people without diabetes too.

So we continue to toddle along together. I do my very best to look after myself, keep fit, eat well and try hard not let diabetes rule my life (easier said than done at times I know).... what more can we do?

I hope all the replies have helped. 🙂
Click to expand...
Well said Lisa!
 
Barbie1 said:
I was diagnosed in 1967 at the age of 11. I spent two weeks in hospital learning how to do my once daily injections and urine testing etc. You guys who have blood test meters, pumps, Libres etc from an early day in your diabetes lives have a much better chance of getting this thing beat than we did back then.

I never really got to grips with it until I was about 40, after ignoring it mostly up until then. Apart from not expecting to live beyond age 50, I do not recall any other warnings about the complications I might suffer, though I may well have been told I just don’t remember.
Only when I moved to a town with a GP who was actually interested in diabetes, and he found the first signs of background retinopathy, did I become aware of (or acknowledge) the possible long term effects.

if long term damage from my long term neglect is going to happen, it hasn’t yet, and I must just accept it if and when it eventually catches up with me.
I still do not let it control my life, and I do not obsess about BS readings etc. I’m probably a pretty bad example to anyone else though tbqh!
Click to expand...
I love reading the stories from people who don’t let rule their lives, very true observations Barbie
 
A really interesting thread @Spozkins

One thing I like about the forum is the width and breadth and depth of experience - people diagnosed with all sorts of types of diabetes at different ages and all sharing their experiences.

I was Dx at 21, which seems to be another of the ‘popular’ times of life - early childhood 5-8... mid teens 13-15... late teens 18-22 and then again in early 30s... early 50s... early 60s.

We don’t seem to get many Dx with T1 in their early 40s. But that might just be me misremembering!
 
@Spozkins I am a relative youngster to Type 1 and a relative oldie for my diagnosis in my 30s.
The stories above of people who have had it for 50 years and more are inspirational, especially when we realise what treatments were available 50 years ago - no finger prick testers let alone CGMs, no fast acting insulin let alone insulin pumps.
I believe those who are diagnosed now have a much better, less risky life ahead where diabetes will pay a smaller part of their lives. I am sceptical of a cure in my lifetime (to me an islet transplant is not a cure because it requires more drugs) but that does not bother me. Like others have said, I try to live my life to the full. To do that, I need reasonable diabetes management so I am motivated to keep an eye on my levels which will reduce the chances of complications.
 
everydayupsanddowns said:
A really interesting thread @Spozkins

One thing I like about the forum is the width and breadth and depth of experience - people diagnosed with all sorts of types of diabetes at different ages and all sharing their experiences.

I was Dx at 21, which seems to be another of the ‘popular’ times of life - early childhood 5-8... mid teens 13-15... late teens 18-22 and then again in early 30s... early 50s... early 60s.

We don’t seem to get many Dx with T1 in their early 40s. But that might just be me misremembering!
Click to expand...
Yeah. Its much more common these days I think but I suspect that's just with the population growing.

I knowas diagnosed at 1 year old and I'm not sure about the other children in my clinic but when I was 5 or 6 there were about 4 of us as in Newcastle that attended the diabetes clinic. I spent years of my life never having met another diabetic but that makes sense if more were being diagnosed in teens or a bit later. I also think some of the older generations quietly got on with it in the background.
 
@helli thank you. I do agree with you wholeheartedly. It's incredibly inspiring and were lucky that technology and understanding of diabetes is so advanced these days.

I think it's more that I learned the complications at too young of an age you know? I used to be terrified of the diabetes clinic and amongst having nightmarish style hypos I was being told I might go blind, lose limbs if I didnt change and I really couldn't understand why. It's not that I think my outlook is bad or anything just that from a very young age I was given a really grim outlook and scared quite badly.

So even though I honestly do manage my anxiety and diabetes to the best of my ability, it's not easy to unlearn negative experiences that happen when you're first understanding the world around you.
 
I don’t think your outlook is bad either, I actually think your outlook isnt much different to anybody else’s really. We all have concerns to some degree, whether they’re locked away at the back of our minds or more prominent, they’re there somewhere as it what keeps us trying our best with our control. It’s just finding a balance.

As we know, children are like sponges and soak up what’s going on in their environment, it’s how we learn. We can all remember feelings from our childhood. So it’s no surprise if negative things were mentioned to you, that they’ve stuck with you. I actually think as I’ve got older the concerns have moved to the back, I guess over the years other things come along take their place.

My trying to be positive attitude didn’t stop me going absolutely cold one night a few years ago, when I woke up with an incredibly painful toe. All the horrible things went through my mind..here we go I thought. Drs were brilliant, didn’t think it was anything serious, but super speedy referrals and turned out to be all ok. Apparently type 1 on file seems to speed us along.

I hope you find all the replies reassuring...as you say you’re doing your best, none of us can do anymore.
(Apologies for ramble).
 
It is difficult learning about complications at a relatively young age or a very young age for you @Spozkins . The images I have in my head of the Jod clinic - Juvenile Onset Diabetes - have stuck in my mind all these years. It was for young adults too and I can still see a youngish man there with a wooden leg pre modern prosthetics ( I assumed it was diabetes related but who knows!) It made me so fearful for what might happen. Modern tech has made things infinitely better as well as the don't let diabetes stop you doing anything approach which is fantastic and achievable. I felt I was mentally hit with a big stick to look after myself else I would suffer from all the complications possible - (in fairness I am dealing with a lot of them!)

I think the fear factor was used as an approach to scare me into doing my best. I hated the clinics as I was so fearful of being told off or being told what would happen to me if I didn't pull my socks up. I was trying my best . I was told that there would be a cure in 10 years by one Doctor at diagnosis yet the older Consultant stood by my hospital bed on a childrens ward telling my Mum my life expectancy would be reduced by 15 years. It was harsh and I'm not surprised you grew up terrified of what could happen.

I'm glad you wrote about how you're feeling and trying to find a way to deal with the panic and negative experiences you've had since so young. I try to suppress my real fears but writing about them makes me realise they're not hidden very well!

Keep doing your best, you're not alone with those feelings. 🙂
 
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And @LyndaS who joined today having been diagnosed at 43.

I was 53 and feel that with the pens and later tech we have had it a lot easier as there is som much more to help us manage this condition.

Such a variety of experience.
Thanks for starting this thread @Spozkins .
So inspiring.
 
Congrats @Bloden ! I bet nobody has ever said that to before about your diagnosis eh?

Thank you @Flower and @Lisa66 for your kind replies. I definitely imagine that the physcology behind diagnosing young children is very different these days. As you mentioned flower I too was always scared about being told off - until I was in my 20s I think when I realised it was actually about me and me taking control of my life and that has helped.

And I'm sorry if I've reminded you of bad times and reminded you of all those fears. Its just nice to know you're not the only person who has that fear lurking there, bit less lonesome.

I think were all doing pretty amazing aren't we?
 
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