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bev

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Hi all,
I am not terribly sure how to word this thread as you will see.
Over the past few days, i have learnt of 3 people with diabetes dying.
One was a 36 year old man who was about to do a university course on helping diabetic children - he died in his sleep.
The second was a 19 year old girl who died at a friends party.
The third was a 19 year old boy - i am not certain of the circumstances surrounding his death.

I am devastated at hearing of these deaths, and of course, it makes me more worried than ever. What i am not certain of is this - do i only know of these deaths because i am in the 'diabetes circle' and therefore more likely to have heard of them (my theory being that deaths are so rare nowadays) - or are these incidents more common than the general public realise?

I really dont want to upset anyone at all - but - i feel very down tonight as a result of these dreadful stories. Obviously it makes me worry more than ever - but i am now questionning whether these deaths are just so rare that they couldnt possibly have been foreseen, or are a direct result of poor control or ignorance of the severity of diabetes and its complications, and therefore makes me question how much control we actually have over diabetes.

I hope i havent offended anyone with this thread - that is the last thing i would want to do - but its a real worry of mine and something that i just cant seem to push to the back of my mind.Bev
 
hi bev please dont worry about offending anybody, of course if any of us had heard of these deaths we would be feeling the same it is nice to have shared it with us all we can all be here for you when you are down, I think like you say as we are or have children/wives/hubbys etc etc then of course we taken a bigger interest in diabetes but the 3 coming all so close is very sad the 2 young people of 19 is terrible even 36 is no age , i have myself heard of somebody my o/h knew who started off just thinking he had gout he was told he then had diabetes but did not even care he ate drank and did all he used to and he passed away, it is a really difficult one aint it , because some diabetics proberly look after themselves really well and still become ill if you get what i mean . it's a puzzler
 
wow thats a scary thought.
Funnily enough (not really funny but erm...) last year my aunty jane suffered a stroke due to very very poor diabetes control, ended up with a mind of a 3 year old and decided to er...burn down her house while she was still inside it. Can that be considered a death due to diabetes? I think so.

I guess it goes to show that (if this did all happen due to poor control), that people really need to look after themselves.

I was reading a community on livejournal earlier called 'bad_diabetics' and reading those entries broke my heart - people who deliberately don't inject, refuse to check bloods, binge drink to excess, diabulimia etc etc. It breaks my heart to know that these people are really harming themselves and some of them may not come out of it :(

btw, no offense at all. It would be interesting to know whether it was a direct cause of bad control. Where did you find that out?
 
Come on Bev, Chin up, please.

All you can do is whats best for you and your dearest.

As you said you don't know the details, so it's best not to dwell on it, but I realise that may be very difficult!

It probably is partly due to your new "circle" but obviously still concerning. So pass on your love to the family & friends they have left behind, but stay focused on your life.

I hope I haven't worded this too harshly.

Cheers

Rossi
 
Hiya Bev

Obviously I know this as well. My friend's daughter died of DIB two years ago. It is very rare and very hard to prove as well.

This is one of the reasons most of the families I know with children with D test overnight to keep an eye on things. It shakes you up so much. I had only met this girl, she was 12 and died the day before her 13th birthday (Bev you met her mum at Hoburne, Barbara, she was sharing with Brenda) two weeks before. I had known her and her mum for years on the email group. I had spent the week before her death talking to the girl on email re bullying at school and she said I made her laugh and that I was cool. Then I got the email and texts and phone call on a Friday that she had died that morning.

Those that knew her and have found out since now test at night.

It is not always bad control people, this girl was not badly controlled. This isn't meant to frighten and I won't pretend to know how you feel, but I know how I feel as a mother of a type 1 diabetic child. It is so important to be aware of what is going on over night.

You should all have the benefit of a CGMS at your clinics for a period of time. This would give you an idea every so often of what is going on. My daughter was having nighttime hypos and I never knew until she had a CGMS fitted when she was 3 or 4 for a week. She was on mixed insulins which are the most unpredictable.

Sorry I've gone on but I get worried as I'm sure you all do.
 
It can be worrying and scary, especially three comming so close. It is quite rare for someone with well controled diabetes to die from it. It has been very hot recently, so that could be a contributing factor. I have known some quite fit people die because they didn't open house windows or take enough fluids get ill in the heat. We don't know the circumstances of the people that died, they all do seem very young.

We are all aware of the possible complications and will do something about it, and all the parents here are very aware on their childrens behalf, so continue to be aware.
 
One of the problems with the press reporting on events such as this is that they focus on particular aspects, in this case diabetes.

These people may have all had some other underlying problem that led to their deaths, but the reporters (usually due to ignorance) don't go any further than the dreaded D word.

Yes, people do die due to diabetes (either directly or due to complications), but there are a lot of others out there living happy healthy lives e.g Steve Redgrave.
 
Hi Bev

I think that it is good that you've posted this because sometimes things can be so "positive" about diabetes you can feel as if you are in the wrong if things don't go to plan when things go wrong, even if you've done the best that you can. Having said that, as others have said, we don't know the reasons for this happening to these poor people there may have been other reasons why some of them did not live as long as would be expected. Please try not to worry about the effects of diabetes because there is nothing that can be done apart from doing the best that we can. I have also always though that the outcomes, positive or negative, are a lot more complicated than "just" good control re: issues such as genes etc - but that is just my personal view. Take care.
 
It is never good to hear of people dying before their time, bev. Personally, I would want to know much more about the circumstances that led to the deaths before I would even consider that it might one day befall me. I have at least another 50 years in me - I want the medal from DUK and my telegram from the queen! One of my closest friends died of leukemia at 19. He was a funny, intelligent, handsome lad and I still miss him, 30 years on. All we can do is our very best, if it is something we can do no more about than we are doing, then there is little value in dwelling on it.
 
I agree with all this...but I think that for a parent (any carer?) it's all so easy to fall victim to extreme agitation. There always seems *more* and *more* we should/could do -- because it feels like someday if we don't -- who knows?

I don't know how accurate this is, as others have said. And the fear of the future is something everyone suffers from. But it's a little different I think if you sort of feel 'master/mistress' of your own fate (eg make decisions about how well you are doing, what lengths you are prepared to go to, what to worry about, what not to) than if you are responsible for someone else. Then you ask yourself all the time, 'what should we do now?' 'what do we do next?' 'do we look into this or that?', 'are we doing all we can, at all times?'. It's too easy to see the alternatives as selfish or uncaring. There isn't an obvious place to draw a line.

AND I think that there's something about the arbitrariness of diabetes itself that makes perhaps other arbitrary things seem more likely -- after all, diabetes happened, why not something else even worse? So even far fetched and rare things become hard to ignore.

These are probably my own particular set of neuroses, I realise! But I do fight them, all the time. I constantly have to try to 'pull back' from unseen and unknown disaster.

So Bev, I guess my view is that emotionally it's worth trying to sort this stuff out and make decisions about how you feel comfortable living, whatever that means for you. Where your 'emotional health' is, I guess. The science is more definite, but no more helpful in my view. These things clearly happen, and they are terrifying. For parents, having come close to losing our children once, the thought of it again is, well.

But. I could be taken from my children well before anything untoward happens to them. The gasmen out front this afternoon could make a mistake and the whole house could go up. We've done everything we know how to do to make it okay, but it could still happen. Anything could. Developing diabetes in the first place shows that! It's a question of where our own lines are drawn, how we want our lives to be...

Good control, good habits and regular checkups. For Alex and E to be healthy and conscientious like so many on this board, these are the important things. These are the things to teach them. I have sat up nights with my son, comforting him in his fears about complications and his life shortening. He knows all about variables in his future, and understands that nothing is guaranteed. No matter what I do, I can't protect him from that. I can't make things uncomplicated for him emotionally any more than I can do so for myself or anyone else in the family. We all have to go through it, and ultimately make the decisions we need to for ourselves.

Thanks for raising this Bev.
 
Hi Bev,

Thank you for posting this thread..you certainly have'nt upset or offended mr in posting this thread...

I have the same fears regarding Nathan...following looking into the 'Dead in Bed Syndrome'....My mind went into total panic..

I sometimes think we know or get to know far more because we are involved in the Diabetic circle..However that said in the Last 9 mths 2 diabetics in out area have died as a direct result of diabetes..not a complication...one was a lady in her 40's....some doubt was cast over at the time whether she had purposely overdosed on insulin??..the other was a young man in his early 20's...very fit and healthy, played football,....yet no reason could be found to explain his death..other than the fact he was diabetic.

Hope you and alex are ok

Heidi
🙂
 
Hi Heidi

Oh dear how awful.

I do think though that we only hear about these deaths more because of the world we now live in ie' the diabetes world'. We lived in another world for example CF then we would hear alot more about deaths of people with that condition.

It hits us harder if they are people we know or people of people we know.

But as Patricia said there is nothing we can do about this and we have to find how to live with it and find a way to live peacefully with that knowledge. I mourn my friends daughter all the time, still do, two years later. I mourn the 'normal' childhood my daughter has never had. She doesn't do sleepovers, she only went for her first tea to a friend whose daughter has diabetes this year. I'm not over protective, my daughter is very dodgy and bit different. The responsibility is great.

I could never do what Patricia has done and send my daughter on a school trip, I would have to go and the school want me to. I don't want to believe me. I have been up all night with her last night, her sensor alarmed every 30 minutes from 1.30 am and I have to respond. I then have had to be in school with her till 1 pm today as her carer wasn't there. I'm knackered. After school we have circle time with the local diabetic support group which she enjoys so we go. It is not a 'normal' life like our friends lives and one I woudn't have chosen but to us this is 'normal'. This is why when we hear about these deaths it has to be just stored away. I know I am doing the best for my daughter that I can possibly do. I physically and mentally can't do anything else. My life is totally on hold protecting her and doing what I can do to give her as 'normal' a life as her friends, it just takes a lot more planning and thought.

This is why these forums and email groups are an important part of all our lives and these deaths bring that home and why it is so important for us not to argue but to respect each others views and opinions whether we agree or not.
 
Bev, don't waste too much emotional time and ernergy on what did/might happen, and focus on the here and now and just doing the best you can. Being aware, as you are, of good management and being there to support alex is the best you can do, and he may well have the same plans as Northerner!
 
Blimey I've just read my message back and it sounds very depressing!!! It isn't, we have a lovely life, just me and my daughter. We have a lot of fun and I wouldn't have it any other way.

I'm just tired and snappy today after my non sleeping night :-(
 
Hi Adrienne,

Totally agree with you that we hear about these deaths because of the world we live in...and definately hits us harder when its people we know etc..and as Patricia says it is out of our hands as parents and we need to find away live with it and peacefully with that knowledge.

As like you I would'nt consider myself to be over protective of Nathan...but on reflection may be I am...just a little..although I try really hard not to be..cause it must drive him totally mad as he is 14...I to have had to mourn the loss of his normal childhood/teenage years...he had 11 years of living the normal life...before diabetes came and turned the path of his life upside down...since then Nathan has never been invited for tea to anyones house..had sleep overs at theres...not been invited to parties....one parent even said to him you cant come because we dont need to see needles etc....I must admit to going beserk in fact thought I was going to shoot into orbit and never come down...

Nathan has only just recently been on his first school day trip since diagnosis.....I must admit I was on edge all day..and couldnt wait for him to come home..just for me to know he was safe

I do all I can mentally, physically to keep Nathan safe and well protected..and to instill in him that diabetes or not he can still fulfil his dreams and passions...but must take care of himself if he is to acheive this..

I have great admiration for all parents in our situation...despite it all we are incredibaly strong mothers...we have to be...xx

I agree with your last sentence..we must respect others opinions views..whether we agree or not

Heidi
🙂
 
Adrienne said:
Blimey I've just read my message back and it sounds very depressing!!! It isn't, we have a lovely life, just me and my daughter. We have a lot of fun and I wouldn't have it any other way.

I'm just tired and snappy today after my non sleeping night :-(
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Hi

What you said does'nt sound depressing at all...its fact....and how we live...me and Nathan have fun to...despite him being a hormonal teenager...would'nt change him for the world.......

Heidi
🙂
 
I do admire the stamina and commitment of all you parents of children with diabetes. 🙂
 
runner said:
Bev, don't waste too much emotional time and ernergy on what did/might happen, and focus on the here and now and just doing the best you can. Being aware, as you are, of good management and being there to support alex is the best you can do, and he may well have the same plans as Northerner!
Click to expand...

Runner,
I am assuming you mean the letter off the queen etc and NOT wanting to marry an elephant?😱Bev
 
runner said:
I do admire the stamina and commitment of all you parents of children with diabetes. 🙂
Click to expand...

Thankyou,

There is nothing like the love of a mother - then add to that, a child who is more vulnerable - and you get a mother who loves her child and is prepared to fight - no matter what!:DBev
 
Ha ha, yes, the living to a 100 bit! Yes I know what you mean about the motherhood bit - various of my children have had problems and difficulties of one sort or another, one sadly where we were powerless to do anything. However, the others have eventually progressed in one way or another, but I guess its because the diabetes is for life. I know they will grow up and manage it on their own eventually, but you never stop being a parent....
 
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