• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Sad news a little too close to home

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
DeusXM

DeusXM

Well-Known Member
Relationship to Diabetes
Type 1
This prompted a discussion in my house last night.

http://www.dailymail.co.uk/health/a...resent-gives-three-gift-life-organ-donor.html

My fiancee went to school with Lee and knew him well, although I never met him myself.

This story's made me very angry and sad.

Sad because it's 'another brother' who's fallen to this disease, and of course, I've had to have a bit of a conversation with my fiancee on this but thankfully she is very aware of how I take my diabetes seriously so as far as I can tell, she doesn't think something like this is going to happen to me.

Angry because it's so needless.

My understanding is that Lee didn't take very good care of his diabetes and never really got a handle on it - from what I've seen, he was a regular smoker, among other things. It makes me really angry because he could have done something. He could have stepped up to the plate earlier. He could have got this under control and this wouldn't have happened. I'm angry at Lee.

I'm also angry at the NHS. Someone should have stepped in. Someone should have been more forthright. Someone should have given him the support he needed - even if that would be well beyond what was normally required. I believe that EVERYONE can beat diabetes, just that some might need a superhuman amount of help to do it.

And I'm also angry at me. I'm angry at me because I'm angry at Lee and that seems wrong. I'm angry at me because I've let this rattle my confidence a little bit and it's made me feel a bit morbid at getting a high reading. I'm angry at me because I was vaguely aware that my fiancee had a childhood friend with diabetes, and not once did I ever really ask to find out more or to get involved or see if I could help. I can tell myself that's partly because of geography (I've either been in London or Dubai the whole time, not exactly close), or partly because they didn't really meet up or see each other. But it still makes me angry.

The only positive is I hope that this might encourage those who are feeling a little lost with their control to get the help they need and to take charge of their condition. Please don't let it get you down. Don't let what's happened become meaningless. Use it to become stronger.
 
So sorry to hear this news, and 33 is really no age at all :(. Even though you didn't know him personally, the fact that your fiancée knew him and he was a similar age is quite sobering, no wonder you're both feeling shaken.

It always seems to me that the people who do best with their diabetes control are those who are prepared to put the effort and self discipline into it, AND have a good proactive healthcare team behind them. It saddens me when someone is struggling and slips through the net, not getting picked up and motivated at clinic. However there is also an element of luck/genetics in that two people could do the same things towards caring for their diabetes and yet have different outcomes. Don't beat yourself up about not enquiring after him etc. - he may have not welcomed the "interference". If you had been friends and he'd asked you for help, you'd have helped.

I hope your fiancée feels reassured that you are very strict with your own control - there are plenty of graphs you could show her from the DCCT trials showing the correlation between lower Hba1cs and lower/no complications. Don't let this shake your confidence.

{{{hugs}}} x
 
Excellently put Redkite, I wanted to write the same thing but couldn't put into words clearly enough. I second everything you said.

Don't beat yourself up Deus, it has shaken you a bit but that's all. Keep up the hard work looking after your own D and you will be fine. ((Hug))
 
Hi DeusXM

I must tell you that you hit a note with me you really have and that is helping me take control of my diabetes control. I nearly died having ketoasidosos last year and it shook my world i was in intensive care for 3 days and hospital for 6. When I was diagnosed i was encouraged carbs are needed and for this i feel angry at the outdated advice from diabetes health professionals. Then i got chronic back pain which gave me stress and no appetite. Now i am pain free, i am counting carbs and adjusting insulin accordingly. I am afraid about consuming even a Jaffa cake and had a craving last night so enjoyed 40g cornflakes which i really enjoyed but when tested my BMs 2 hours later bedtime i had a high reading which made me feel down. On waking this morning i woke with 5.1 v pleased, but then had 2 units with a slice of th burgen linseed and soya bread with small spread of real butter went to sleep as had a sleepless night thinking of high readings and when I woke up 2 hours later i had high reading. This can be frustrating but what I am trying to say is that your guidance on here has been helping me along with others i think passing on your advice along with others on here has made a difference to me, and i thank you.

I know how you must be feeling, but this condition touches us and our families. My mum texts me everyday to say eat well dont eat fat and i reassure her that we all need fat moderation and i am not hung up about fat now after comments you made. Your a kind soul so please dont be hard on yourself. I had to go through the worst thing to kick me up the backside, poor Lee didnt get that kick and im sorry for his loss bless him. Laura
 
I second what has already been said. These things do shake your world. It seems so unnecessary and sad for everyone who knew him. Deus your advice has been invaluable to me and you have taught me so much for which I am so grateful. Continue to look after yourself as you do now. Sometimes there are other factors that influence the outcome, all we can do is try. Don't be too hard on yourself. Take care. Sending you a hug ()
 
I also agree with what the others have said. What happened to your fiancée's friend is tragic, he died too young and was let down by those who ought to have helped him to help himself. It's bound to rattle you, it does me and I don't know any of them. What it does is make me more determined to manage things as well as I can so as to avoid that fate, and that's what you need to focus on too, without getting too paranoid about the odd Jaffa Cake or high reading. You do a great job for yourself and in your support of folk in here, be proud of that.

(((HUGS)))
 
How could you - or indeed anyone have helped someone who didn't want help?

I know quite a number of diabetic children who have gone off the diabetic rails as they grew up - Tina's son for instance. he was offered all the help available, but he wasn't listening.

Probably because it was depressing to have to face the facts.

I've always said I was very lucky because I was 22 when I was diagnosed, married 12 months so without the influence of parents. Oh sheet - for the first time in my life - I was ALONE and having to face something BIG. OK I had a husband but he wasn't there in hospital as people came to tell me things, and give me stuff to read about D as the days went by. It seemed to me that if I didn't get a handle on it from the off, there would only be one person to suffer for this - ME.

So I wasn't that long past my Biology O level course at the stage, so I sort of treated it as an extra part of the curriculum that had just caught up with me. But it was kinda the same as learning about the enzymes in the digestive track, or the anatomy and habits of the earthworm. If I didn't hammer it home into my skull, I wouldn't pass the exam, and that exam was even more important than the O levels.

But if I was a child when I got it, none of this stuff would have been delivered to ME - just like other doctors visits when I was a child, the doctor would hardly talk to me - all my mother. No request to get undressed for him to listen to my chest, or stick my tongue out or whatever was required - it was always my mother saying 'Do this' and I had to. Then they discussed me whilst I was told to sit there and be quiet. Nowt to do with me really, except I was then told to take medicine or swallow these tablets or stop moaning about it.

That makes mom sound cruel - she wasn't - but that's how it was then. So to find yourself alone with this thing your parents have been making so much of all these years - and you really haven't a proper handle on yourself, you don't want to learn when you aren't at school and obliged to - even if you want to while you are there! - and all your mates are doing this or that and eating drinking going to parties whatever - plus of course every child is never going to do THAT the same way the really really old and miserable people you lived with did it - it's a recipe set up for disaster isn't it!

I do have some sympathy for wayward teenage diabetics - there, but for the grace of God .....

I think it's VERY sad.
 
Thanks everyone for your kind words, much appreciated.

I think it's definitely a case of 'there but for the grace of God....' and it's a reminder that there aren't any free passes in this game. Let's all stay in this together, eh? 🙂
 
Deus you are obviously very knowledgeable and have offered much great advice on this forum. I've certainly learnt some interesting things from your posts.

I think we all get days when we get fed up with D and anxious about the future etc, even without incidents like this to hammer it home.

If you get a bit down about it just try to think about all the people who you have helped on this forum, and don't dwell on the ones you couldn't 🙂
 
A very sad sobering story. I echo what all the others have said so well Deus.

I am someone who went off the rails with managing my diabetes in my 20's. It wasn't through lack of knowledge or lack of help from family and medical professionals. I saw any intervention as unwanted interference. I thought I was invincible and would be the one to disprove the theories. Complications sounded like some relatively benign niggles that might affect me in old age.

I can clearly recall a diabetes consultant telling me when I wasn't following any of his advice "We are a health service not the health police, I can't make you do any of this". The sad fact is if you are not able or willing to help yourself manage diabetes you are only ever going to be the loser. I can't believe I didn't use to care.

The very best we can do is to control all the controllable elements. The uncontrollable bits are a helping of good or bad fortune and genetics.
 
Yes lets all stay in this together! Deus if your BM was 9 and you had a poached egg, smoked haddock cooked and 1 slice of burgen linseed/soya bread would you give yourself a correction dose? I get really nervous about them silly i know 🙂
 
Laura davies said:
Yes lets all stay in this together! Deus if your BM was 9 and you had a poached egg, smoked haddock cooked and 1 slice of burgen linseed/soya bread would you give yourself a correction dose? I get really nervous about them silly i know 🙂
Click to expand...
Laura, if your BG was 9 before eating, I would add a correction to the meal bolus. If it was 9 after eating, it depends how long after? Some of the insulin you took with your food would still be active, so don't over correct too soon. If you routinely eat this food and go up a few mmol 2-3 hours afterwards, it suggests you need more insulin per gram of carb.
 
DeusXM said:
Thanks everyone for your kind words, much appreciated.

I think it's definitely a case of 'there but for the grace of God....' and it's a reminder that there aren't any free passes in this game. Let's all stay in this together, eh? 🙂
Click to expand...

No free passes, no time off for good behaviour, pretty relentless all round.... but great to have a place like this to share the ups and downs. Sad events like this make D loom larger than it should in our lives - my aim is to control it as well as possible, but keep it in it's place so that it's just a small part of a happy life 🙂
 
I've no idea whether Deus would, but Trophywench most certainly would ! What the hell's the point of NOT doing one?

If your Basal insulin is correct, and your carb ratio is correct it's mega easy to work out correction doses.

To begin with, why not try having HALF what you calculate you'll need (I know mine is nearer 1u to 2.0mmol than it is to 2.5 mmol. so if I was 9 and took 1u, I'd land up at 6. That's not too high and it's not too low - I'd be smack in the middle of my target range of between 5.0 and 7.5.) But if I was timid and took 0.5u, I'd be 7.5 and that would encourage me to go the whole 1u the next time.

Whereas if you do NOWT - you have no idea whether your suppositions about your correction rates are indeed, correct !
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top