Juvenile diabetes?

[Spozkins]

Heya - haven't actually introduced myself properly I dont think.

Anyway I was just wondering if there are any members who were diagnosed as young children? I know theres a few people who have been diabetic for a super long time but not sure about those diagnosed with juvenile diabetes?

I dont want this to be a woe is me thread but I've quite a bit of (health) anxiety that I think stems from some of my diabetes related experiences as a young kid. I havent really met many other t1s nevermind t1s who I could relate to in that regard.

Anyway, if anybody was diagnosed young, or even as a teen and had any difficulties that has or does effect them I'd really be open to talking. DM or here.

Hope you're all well

 

[Kaylz]

I don't think you have, you seemed to just jump in to the waking thread which was great that you felt you could as some are too shy to just join right in

I'm pretty sure a regular that was diagnosed as a child is @Pumper_Sue (sorry if I've got this wrong!) but I can't actually think of any others off hand that really are regulars
xx

 

[Spozkins]

I don't think you have, you seemed to just jump in to the waking thread which was great that you felt you could as some are too shy to just join right in

I'm pretty sure a regular that was diagnosed as a child is @Pumper_Sue (sorry if I've got this wrong!) but I can't actually think of any others off hand that really are regulars
xx

Thanks for the reply Kaylz - I feel a bit wierd starting a thread about myself even though I probably talk about myself all the time haha. It's just nice to be able to talk about diabetes and not bore people to death.

I suppose it doesn't have to necessarily be people diagnosed young like me but anybody who can relate to the anxiety of the health outcomes.


I'll wait and see what @Pumper_Sue says.

 

[Kaylz]

I was diagnosed the week before my 25th birthday, I was unfortunate and not made aware of what dropping levels too quickly could do, this led to being diagnosed with diabetic macular oedema less than a month later which I received numerous injections for, I then developed an eating disorder (irrational fear of carbs) and despite having good control being diagnosed with proliferative retinopathy in October 2018 so had lasering for that so yeah even though I'm not even at my 5th year I can relate lol xx

 

[Robin]

Anyway, if anybody was diagnosed young, or even as a teen and had any difficulties that has or does effect them I'd really be open to talking. DM or here

I think @AJLang and @Flower were both quite young when they were diagnosed,

 

[Spozkins]

@Robin thank you.

 

[Spozkins]

Sorry to hear that @Kaylz I too have the eyes issues and laser - I suppose a lot of us do. I have a lot of confidence in the doctors and the treatment but it can be quite scary. I was convinced as a child that one day I'd go blind (one of the things I was told could happen to me from about the age of 5/6) so when I first needed laser I seriously freaked out!

You seem to be doing really well all things considered! I cant really imagine the shock of being diagnosed.

 

[Kaylz]

@Spozkins thanks. yeah I was admitted to hospital with ketones after a day at work so really did come as a shock then to be told the following month you need to start eye injections I was petrified, I had my first just before Christmas 2016 and then thought why was I so worried, wasn't even half as bad as what I'd worked myself up to thinking it would be, I only had 1 laser session but I found that worse than the injections, more uncomfortable afterwards too

It was my diagnosis of DMO and a fellow Type 1's comments that led to me developing my eating disorder, I was new, scared and they had been Type 1 a long time, they told me I'd brought it on myself and it was all my own fault because I'd continued to consume carbs, thankfully I'm doing much better and am finally back up to a healthy weight 🙂
xx

 

[Bruce Stephens]

but I can't actually think of any others off hand that really are regulars

I was 15. Maybe many T1 who are diagnosed as children just haven't joined the forum whereas people diagnosed as adults find a more obvious benefit to it?

 

[Spozkins]

Yeah I can understand that. I suppose when you've had diabetes for a long time you just learn to get on with it. I suppose it was my parents that really took the shock of the diagnosis on my behalf.

How did you find being diagnosed as a 15 year old @Bruce Stephens ? Were you fully aware of complications at the time and feel you were supported in the right way?

I do think theres a benefit for the rest of us though - it's really nice just to hear other people echo your own struggles, worries and voice success stories.

 

[Spozkins]

@Spozkins thanks. yeah I was admitted to hospital with ketones after a day at work so really did come as a shock then to be told the following month you need to start eye injections I was petrified, I had my first just before Christmas 2016 and then thought why was I so worried, wasn't even half as bad as what I'd worked myself up to thinking it would be, I only had 1 laser session but I found that worse than the injections, more uncomfortable afterwards too

It was my diagnosis of DMO and a fellow Type 1's comments that led to me developing my eating disorder, I was new, scared and they had been Type 1 a long time, they told me I'd brought it on myself and it was all my own fault because I'd continued to consume carbs, thankfully I'm doing much better and am finally back up to a healthy weight 🙂
xx

Oh bless you really did have a baptism by fire eh? I think its realy commendable that youve handle it so well.

And I'm sorry about those comments that caused you upset. I think when you've had it for a long time you somehow think you know it all and that's seriously not the case. I know when I was growing up though that there was so little understanding about the onset of diabetes and especially t2 that I can imagine people making unhelpful and damaging remarks.

 

[AJLang]

I was diagnosed when I was two years old - my 50th diabetes anniversary will be next month 🙂 Although my Dad lived with us he left my Mum to deal with it and she was brilliant. I was lucky that when I was 12 I met a girl at school who was also diabetic and we've now been friends for 40 years but until recently we've rarely talked about diabetes. We both handled it in different ways when we were teens, and I didn't speak to anyone about how I struggled during that time. In fact I'm not sure if anyone knows how I struggled with it when I was around 10/11 years old, but not something I really want to discuss even now.

 

[AJLang]

I think @AJLang and @Flower were both quite young when they were diagnosed,

Robin I must have been typing my reply whilst you were writing this 🙂

 

[AJLang]

And to add flipping heck I was very aware of possible complications. When I was very young I read something about that it was almost a certainty to get kidney and eye problems within 20 years of getting diabetes.

 

[trophywench]

Amanda - I was 22 when I found the same dire warnings but by then I'd had 22 years of being told it was stupid to panic so don't be ridiculous and do that - so I never had and still didn't, Just shrugged my shoulders and decided I'd have to cross those sorts of bridges when I got to them - if I ever did. I still have no idea whatsoever how I've never come to them - yet.

 

[Steve_H]

I was diagnosed at birth which went at 3.5yrs. It returned 2 weeks before my 15th birthday, 30 years since it returning this year. It was discovered I had Transneonatal Diabetes. I was advised several times about the complications of diabetes. I hated doing blood tests (still do) have been on a Libre for just over a year, best thing ever! Other than a bit of laser treatment on my eyes I have no issues.

 

[Bruce Stephens]

How did you find being diagnosed as a 15 year old @Bruce Stephens ? Were you fully aware of complications at the time and feel you were supported in the right way?

It was 1981, and things were rather different then. I think overall they did about as much as they could (I received test strips from the hospital before they were available on prescription, for example).

 

[Pumper_Sue]

Hello @Spozkins, yes I was diagnosed aged 4 1/2 by my Mum. Like everyone else I had my ups and downs over the years. On the whole though diabetes wise I have come away reasonably unscathed. I'm working on the forum record for autoimmune conditions though 🙂

My mum gave me some very good advice ............ it's your diabetes so look after it. Which over the years I have tried to do mainly because I have a rather strong dislike to feeling ill and hospitals are to be avoided like the plague 🙂

 

[Spozkins]

Thanks everybody - I really appreciate the replies and stories and @Ajcompletely respect your wish to leave it in the past.

I think I'm just a natural worrier but I've realised just how scared I actually am of the future and it's pretty bad. Last year I started having panic attacks about it. I do have complications and a few other chronic conditions so I justify my negative outlook at times, but the truth is I try really hard to improve my control and my lifestyle and of course there are others with much much worse.

A lot of people put their best face on it (and I do at times) but I sometimes see that and think God Me and my diabetes are a mess lol.

Anyway I think I've probably ranted enough now so thanks all for letting me have my therapy session live.

 

[Flower]

Hi @Spozkins

I was diagnosed age 12 in 1978 so was aware of what was happening. My parents reacted badly and told me I shouldn't tell anyone and so I hid my diabetes and blamed myself for having it for decades. I was aware of complications in that I knew I could get eye problems and I needed to look after my feet but I didn't know what I was actually looking out for as it was pre internet. I hated having it so much and hit big problems with an eating disorder during my 20's & 30's but didn't have anyone I felt I could speak to truthfully about what I was doing, I thought everyone else was sailing along with perfect control whilst I was making the biggest mess possible. I was amazed to find people talking about diabetes when home internet became available and it was a light bulb moment when I read about others struggling.

It took me until I joined this forum about 8 years ago to start to talk about what had happened, I'd been through a lot of very frightening stuff, losing my sight in both eyes -still blind in one and partially sighted in the other- and having ongoing serious foot and leg complications. I'm terrified of the future as I've ruined quite a bit of myself up to now. It's trying to find a path where I stop beating myself up too badly, realise some of my complications might have happened anyway and do everything I can to have good control and minimise ongoing damage. I try to put my best face on but sometimes it is overwhelming juggling everything diabetes related especially with some of the clinics I rely on for reassurance being cancelled due to Covid. Being part of this amazing forum has helped me so much to start to talk about complications and I've found so many ways to improve my control.

I've learned it really does help to talk about things as there's usually always someone dealing with similar issues and the amount of support and kindness I've had from the forum has been amazing. I hope you find it as helpful 🙂