C4 Embarrassing teenage bodies

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Alan221

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Relationship to Diabetes
Type 1
Hi all,

I've not posted for a while because I haven't had anything of any value to say. However, I've just seen a short piece on Channel 4's Teenage embarrassing bodies addressing a 16 year olds problem with coming to terms with type one. The guy was understandably struggling - lets face it this site proves we all have issues and we're adults let alone going through puberty etc. He loved rugby league and was taken to Wakefield Wildcats to do a bit of training and meet a player, Danny Sculthorpe, who also has type one. Fair play to Danny, he talked to the lad about the practicalities of living with diabetes - not just some theory that had been taught in a classroom. He knew about the issues of injecting, hypos, testing etc. In my opinion this is what is needed for newly diagnosed diabetics (of any age) - practical advice and experience from real people who actually know what it is to be diabetic. I know the health professionals mean well, but they cannot know exactly what it's like - any more than I could know about childbirth. Anyway (steps down from his soapbox) I just wanted to know if there are any of you folks out there who get involved with meeting any newly diagnosed diabetics? I did mention this to the nurse at my GP's and said that I would welcome the opportunity to talk with others - she said that there was a group that held a monthly meeting, but I've heard no more and haven't seen her since.
 
Hi

I agree totally. The problem there is and that we face is that we are not professionals........... I get soooo cross. Jessica had her pancreas removed at birth, she has something called Congenital hyperinsulinism, it is rare. The dr and nurse at Gt Ormond Street give my and my friend (she has two children with it) email and phone numbers out to newly diagnosed families. We are contacted rarely but eventually they join the support group we run and come to our xmas party.

Diabetes is a whole other ball game. There is a huge group of us like minded parents and we want to help and change things. We have achieved a huge amount already and are now known in the diabetes world even amongst the medical people. We are called the UK Children with Diabetes Advocacy Group and work with JDRF, DUK and medical people. But its slow going. However on the ground with local teams the majority don't want to know. I have offered my services free of charge to the local consultant and DSN. However they don't like me as I know more than them about living with, carb counting, pumps. They don't pump here, they don't carb count. I have been into two schools to talk to the staff about diabetes. I have just been asked by the local support group (or which I'm a member) to run an educational evening and teach all of them how to carb count. I jumped at it. However this is so sad. I am fighting the establishment all because I am not a professional at this diabetes lark. I have more experience than the DSN, she's rubbish and only been doing if for 5 years.

Where do you go from here? It takes a good team to listen to people who want to help.

We are not under the local team, we are under a superb team in London and they too pass my details on and mums contact me. That is how it should work. They have it right. Why can't all teams accept help if its there.

Ok I'll come off your soapbox too, it might get a bit busy up there. 🙂
 
Hi Alan,
Me again! That sounds like a great idea. Alex loves meeting adults and children alike who have experience of diabetes and if there is a great role model then all the better!
We have been to JDRF meetings and DUK weekends - and he absolutely loved it all! He got so much confidence from seeing that adults can cope with being diabetic and holding down a good job etc. He is on target for uni and i often show him the posts on here from uni students - it lets him realise that life does go on - it doesnt have to be ruled by diabetes.🙂

Have you thought about volunteering at a DUK event?🙂Bev
 
Adrienne,
I'm afriad I don't have any answers - just a willingness to want to help and share my limited knowledge and experience. In these days of litigation I'm not sure if folks like us have a place or even if the health pro's can actually admit that they don't have all the answers and need us. Ho hum. By the way the soapbox has more than enough room.
 
This may be off the track a little but I've just been reminded of something that the TV chef Micheal Barry said. He remarked that he isn't a diabetic, he's a person with diabetes. I think I got caught up for a while in that 'diabetes is my life' after I was daignosed. Now it's just something that's there, in truth an inconvenience more than anything really. I hope that everyone who has diabetes can get to that point. I do know the complications etc but I truely hope that for everyone that has the condition, their 'other' life is far more important.
 
Alan221 said:
This may be off the track a little but I've just been reminded of something that the TV chef Micheal Barry said. He remarked that he isn't a diabetic, he's a person with diabetes. I think I got caught up for a while in that 'diabetes is my life' after I was daignosed. Now it's just something that's there, in truth an inconvenience more than anything really. I hope that everyone who has diabetes can get to that point. I do know the complications etc but I truely hope that for everyone that has the condition, their 'other' life is far more important.
Click to expand...

It is politically incorrect (allegedly) to say diabetic and it should be person with diabetes. I know some people take offence but people take offences to lots of things these days and in my view a bit of tolorence of people goes a long way. (ooo not having a go here by the way 🙂). I agree with you and that people with diabetes should get to a point where it is there with them but not ruling them. However on the flip side, for me, and I'm not diabetic, it is my life as it is my child and I want to live the diabetes for her but I can't. I also have made it my business to try to help other parents so in essense it is my life but in a totally different way to you.

Love your last sentence 'I truely hope that for everyone that has the condition, their 'other' life is far more important' 🙂
 
Adrienne,
thanks for the vote of confidence on my last sentence. I'll be off now to find out about my footie team - you never know I may post again with another rant/words of wisdom (all depends on your point of view). Don't forget that a journey of a thousand miles, begins with one step.
 
Meeting others sounds a great idea. Next time I see the nurse I'm going to ask about setting up a group in the evenings or at weekends. I know lots of pepole work too.
 
Adrienne said:
It is politically incorrect (allegedly) to say diabetic and it should be person with diabetes. I know some people take offence but people take offences to lots of things these days and in my view a bit of tolorence of people goes a long way. (ooo not having a go here by the way 🙂). I agree with you and that people with diabetes should get to a point where it is there with them but not ruling them. However on the flip side, for me, and I'm not diabetic, it is my life as it is my child and I want to live the diabetes for her but I can't. I also have made it my business to try to help other parents so in essense it is my life but in a totally different way to you.

Love your last sentence 'I truely hope that for everyone that has the condition, their 'other' life is far more important' 🙂
Click to expand...

Hi! Here's my tuppence worth... please don't take offence! 🙂 ... Over the years I have oscillated between extremes of "I am a person who just happens to have diabetes - don't dare pigeon hole me!" to realising that sometimes, I do just have to be virtually a "full time diabetic" (however grudgingly!).

I did loads of things like 50 mile marches etc in the past, at the time more or less bullying my diabetes into submission as it were, because I didn't know how to control it scientifically & I was damned if it would rule my life! Complications? Only old people get those, right?! In hindsight my control wasn't as good as I thought it was, perhaps because I was so determined not to be defined by my diabetes...

When I got pregnant the responsibility felt awesome & I realised that the only way for me personally to get properly good control was to get extremely focussed about it & make a few sacrifices...such as no eating out, literally weighing or measuring everything that I ate & not exercising for the early months because it cocked my levels up...I definitely felt like "a diabetic" ruled by diabetes then! (Not to mention getting odd looks in the office whilst getting a ruler out to measure the occasional naughty sausage roll he he!!)

So in my case at least, it feels like life is a sliding scale of how "diabetically" I am willing to live, against the risk of future complications... and now I've experienced retinopathy etc (& so early - I'm only just in my 30s!) I'm starting to wish I'd "knuckled down" to trying to rule my diabetes (rather than trying to sideline it) earlier as it were! That said, I have met people who don't seem to need to do much to maintain good control, but not everyone is that lucky it seems!

Yes, you can do anything if you happen to have diabetes, it doesn't have to rule your life, but you do need to take it seriously (not suggesting you don't!!). I've finally twigged (only took 3 decades, lol!) that if I don't get the diabetes in line first everything else will be harder! (Hey, I might have got a 2:1 if I was better controlled back then, lol!)

For me, with my dodgy carcass it seems that I need to focuss quite strongly on my control - maybe not allowing the diabetes to rule my life (ie now I'm not preg I'll eat out, exercise etc), but allowing some kind of joint leadership?! 🙄
Just my thoughts (bit rambling, sorry!), don't mean to upset anyone! I guess there may be as many "right" approaches as there are diabetics!
 
Adrienne said:
It is politically incorrect (allegedly) to say diabetic and it should be person with diabetes.
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hehehe funny I just read this thread after these facebook comments:

gnt.jpg


Yes my brother is a diabetes bully lol.

I dont really take offense to 'diabetic' at all, I was just joking.
 
That is hilarious and typical of a sibling, mine are the same about other things.......
 
He says stuff like "are you sure you are allowed that? won't you go blind?" too.

haha sounds well harsh!
 
🙂
katie said:
He says stuff like "are you sure you are allowed that? won't you go blind?" too.

haha sounds well harsh!
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Sorry but its making me laugh. Although I come at diabetes from a whole other angle ie I don't have it, it doesn't make diabetes any lighter or less serious than it is, I would love to have it and my daughter not have it but it didn't go that way so when you here siblings talk like this it just lightens it (although joking about blindness is not supposed to be funny of course) and its another way of caring with humour. If my mum says 'should be eating that' I know its a different way. As I'm super large, my daughter is not then they are worried that I am going to make her super large............ not all large people breed large little people !!!! My dad and brother can joke with me about my size as I know its out of love in a nice way but my sister and mum can't as they have hurt me too much over the years, out of love, but have been really quite vicious about it. There is a difference.

Loving your brother Katie 🙂
 
Twitchy said:
Hi! Here's my tuppence worth... please don't take offence! 🙂 ... Over the years I have oscillated between extremes of "I am a person who just happens to have diabetes - don't dare pigeon hole me!" to realising that sometimes, I do just have to be virtually a "full time diabetic" (however grudgingly!).

I did loads of things like 50 mile marches etc in the past, at the time more or less bullying my diabetes into submission as it were, because I didn't know how to control it scientifically & I was damned if it would rule my life! Complications? Only old people get those, right?! In hindsight my control wasn't as good as I thought it was, perhaps because I was so determined not to be defined by my diabetes...

When I got pregnant the responsibility felt awesome & I realised that the only way for me personally to get properly good control was to get extremely focussed about it & make a few sacrifices...such as no eating out, literally weighing or measuring everything that I ate & not exercising for the early months because it cocked my levels up...I definitely felt like "a diabetic" ruled by diabetes then! (Not to mention getting odd looks in the office whilst getting a ruler out to measure the occasional naughty sausage roll he he!!)

So in my case at least, it feels like life is a sliding scale of how "diabetically" I am willing to live, against the risk of future complications... and now I've experienced retinopathy etc (& so early - I'm only just in my 30s!) I'm starting to wish I'd "knuckled down" to trying to rule my diabetes (rather than trying to sideline it) earlier as it were! That said, I have met people who don't seem to need to do much to maintain good control, but not everyone is that lucky it seems!

Yes, you can do anything if you happen to have diabetes, it doesn't have to rule your life, but you do need to take it seriously (not suggesting you don't!!). I've finally twigged (only took 3 decades, lol!) that if I don't get the diabetes in line first everything else will be harder! (Hey, I might have got a 2:1 if I was better controlled back then, lol!)

For me, with my dodgy carcass it seems that I need to focuss quite strongly on my control - maybe not allowing the diabetes to rule my life (ie now I'm not preg I'll eat out, exercise etc), but allowing some kind of joint leadership?! 🙄
Just my thoughts (bit rambling, sorry!), don't mean to upset anyone! I guess there may be as many "right" approaches as there are diabetics!
Click to expand...

You are right Twitchy, I don't think anyone can take offence to this type of message. It really is each to their own. My daughter is diabetic and is a Brownie and is a school girl. I am an asthmatic, etc etc. Everyone has labels, they are not nasty labels it is just who they are.

Diabetes is different to each individual. Northerner has fab Hba1c's as to some of the others on injections, I could only dream of them for my daughter. We are now pumping and still only dream of low HbA1c's. As you know my daughter is very different from your average type 1 diabetic, I describe her condition as type 1 diabetes with bells on !!!🙂
 
Adrienne said:
Sorry but its making me laugh. Although I come at diabetes from a whole other angle ie I don't have it, it doesn't make diabetes any lighter or less serious than it is, I would love to have it and my daughter not have it but it didn't go that way so when you here siblings talk like this it just lightens it (although joking about blindness is not supposed to be funny of course) and its another way of caring with humour. If my mum says 'should be eating that' I know its a different way. As I'm super large, my daughter is not then they are worried that I am going to make her super large............ not all large people breed large little people !!!! My dad and brother can joke with me about my size as I know its out of love in a nice way but my sister and mum can't as they have hurt me too much over the years, out of love, but have been really quite vicious about it. There is a difference.

Loving your brother Katie 🙂
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Yes it is really annoying when people are being serious and say "should you have that?" grr, I think we know what we can eat or in fact what we feel like eating, thanks! 😡 Sorry to hear you mum and sister have upset you about it! It's always female family members 😱 girls can be so bitchy...

Sometimes he can go a bit too far (because obviously blindness is a possibility and a very scary one!!) but usually it's just funny and I love joking about it too, if someone buys me something sugary i'll sometimes say "are you trying to KILL me?!" or something 😉
 
I'm a bit naughty because I tease my hubby that I don't need a pension cos I won't survive to claim it! (worryingly enough, he's now talking about life insurance lol!!) My other black humour comment is that I've always loved labradors...

Although you need to take potential complications seriously, black humour can also be such a relief! I guess if we can't take the micky, who can?!
 
Grampian NHS launched the Diabetic "Buddy" network in August 2005.

This pairs up a newly diagnosed "person with diabetes" to someone who has had the condition for a lot longer. The newly diagnosed person then has someone they can talk to if they have any questions at all about their diabetes.

See more information about it here:

http://www.nhsgrampian.org/nhsgrampian/gra_display_hospital.jsp

NiVZ
 
NiVZ said:
Grampian NHS launched the Diabetic "Buddy" network in August 2005.

This pairs up a newly diagnosed "person with diabetes" to someone who has had the condition for a lot longer. The newly diagnosed person then has someone they can talk to if they have any questions at all about their diabetes.

See more information about it here:

http://www.nhsgrampian.org/nhsgrampian/gra_display_hospital.jsp

NiVZ
Click to expand...



Hi NiVZ...

This is a superb scheme...ideal in everyway...🙂

Heidi
🙂
 
Hi Heidi,

The lady who started it, Kate Michie, was on my DAFNE course and she was so enthusiastic about it all. She managed to sign up a few of the guys from our course, but I didn't volunteer myself.

Personally, I didn't feel comfortable with speaking to people on the phone - but I try to do my bit in other ways such as messageboards and I've taken part in other pilot schemes too.

Maybe I'll give it some more thought in the future as I would definitely have liked to have someone to talk to.

There should definitely be more coverage of people who have diabetes who have done well for themselves. The rugby guy on C4 Embarrising Illnesses was good, and Sir Steve Redgrave is another. I know there are some Premiership Footballers who have diabetes (sorry can't remember their names) and also other high profile people like George Lucas who all prove diabetes doesn't have to stop you doing what you want (unless you want to join Police, Army, Fire Brigade, work offshore, fly a plane or drive a passenger carrying vehicle - but thats for another thread)

Like someone said earlier, HCP's do their best but unless they are diabetic themselves they don't really understand how it feels to have to live with diabetes.

NiVZ
 
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