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Diabetes has ruined my life

therower said:
Diabetes control........... 80% mental/emotional. 15% medication. 5% winging it.
Your diabetes has got you exactly where it wants you. At its mercy. It's dictating life for you.
The more you fight the stronger it becomes. It will thrive and grow on your negativity.
You need to find a more positive approach to life.
A pump failure shouldn't create as much distress as it did.
A high BS level on Christmas Day shouldn't be a problem if your long term (HbA1C) control is as good as you say.
Life is only ruined when it ceases. You was fortunate to see Christmas Day, that is life, be positive.
Consider your avatar. I feel it says too much about you as an individual. ExtremelyLUcky is what it needs to say. You're here , you're alive and you're a bad ass in control diabetic.
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I agree, with diabetes you need to carry on with your life. I was diagnosed at 43 with type 1, i have to inject 4 times a day, it was a shock it changed my life but with medication and a positive out look on life, I carry on with my life, don’t let your diabetes control your life. You have your good days and bad days everyone does but you are alive, live every day to the full.
 
ExtremelyW0rried said:
Yes I used to feel bitter about the fact I'd never see my children get married or graduate or meet my grandchildren.
Now I'm glad it takes years off my life. I'm hoping not to make it to 50. That means only another 15 years of it at most.
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I was told in no uncertain terms that my life would be reduced, I would have complications.... I would get a medal if I got to 25 years as a T1.

I too never thought I would get to 50. Never. I am now edging toward 55 without complications and now you have to buy your own medals at 50 years with T1.

I amso seriously worried about you.. every thought that isnt a good happy thought is actually wasting your life on misery...

You can be very happy as a T 1, no matter what.

I too have had severe depressive thoughts at times but you need to change these and find a way to talk to your GP, find help for these spiralling downward thoughts.
 
It is impossible to live life at all in my experience.

Tonight dh said let's get a take away as it's new year. Well obviously I can't eat anything from an Indian take away. I mean I can't eat an apple so I think rice may be out of the question.
Said I'd order something for him but I would just have a Diet Coke and now he's annoyed because he says he doesn't want one on his own. However if I order it and don't eat it he will be more annoyed as it's a waste of money. But I don't want to start 2018 with a blood sugar of 20 so will just cook something for him and the children and go to bed I think.
 
ExtremelyW0rried said:
It is impossible to live life at all in my experience.

Tonight dh said let's get a take away as it's new year. Well obviously I can't eat anything from an Indian take away. I mean I can't eat an apple so I think rice may be out of the question.
Said I'd order something for him but I would just have a Diet Coke and now he's annoyed because he says he doesn't want one on his own. However if I order it and don't eat it he will be more annoyed as it's a waste of money. But I don't want to start 2018 with a blood sugar of 20 so will just cook something for him and the children and go to bed I think.
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When I was 10, I broke into a "lodging" medical student's room whilst she was out clubbing. (disco.)
What was I after? Her books. Getting to the diabetic section. I read what the HCPs & my parents already thought they knew.. (The bad news.)
Aswell as understanding & empathising with my mum's guilt.. I vowed I ain't going out like that. I'm not going to hang about & wait for "it" to happen. My mother certainly wasn't going to suffer either, for my dodgy "hand of cards."
That was a long time ago...

Tonight, I'm sharing & celebrating the evening in anticipation of another great year with my wife..

I wish you & your folk all the best.

We make ripples on our own pond!
 
ExtremelyW0rried said:
It is impossible to live life at all in my experience.

Tonight dh said let's get a take away as it's new year. Well obviously I can't eat anything from an Indian take away. I mean I can't eat an apple so I think rice may be out of the question.
Said I'd order something for him but I would just have a Diet Coke and now he's annoyed because he says he doesn't want one on his own. However if I order it and don't eat it he will be more annoyed as it's a waste of money. But I don't want to start 2018 with a blood sugar of 20 so will just cook something for him and the children and go to bed I think.
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Why do you have to have the same food??

Why not got the takeaway and have just a plain curry mix (without the rice)...

I think for future that it could be better to plan ahead... get some buffet snacks from shop... you can get reasonable housin duck n pancakes, veg rolls or indian selections that are carb counted in their packets....

It may not be tge answer for tonight but you are allowing your fears of a one off occasion to impact upon you and your family....

If you want to forgo the takeaway do so, but with an explanation that you may be perhaps able to try carb counted indians in the future to enable for such occasions in the future.....

I am so worried that all seems so bleak for you from your point of view.

We all need a day of from fear of diabetes... we cant... but we can learn to still have enjoyment with it in the background.
 
ExtremelyW0rried said:
I just feel at the moment like it is all too much really.
I'm so worried that my children are going to be t1 as well, that I've selfishly inflicted this life sentence on them. I feel a lot of the time like I'd be better off dead than having t1 diabetes, it has sucked all the joy and fun from everything. It is no longer a death sentence - or at least it's a slower death sentence - but it is still a life sentence isn't it?

Thanks everyone for your support. I keep hoping and hoping that technology will improve even more - to the point of a bionic pancreas - because I don't see any cure on the horizon to be honest.
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Just to put a little perspective on it, I HAD Type 1 from 1959 to 2013 and I'm only 59 now. Throughout my life until 2012 the torture of "We think a cure could be available within 5 years" regularly reared it's demonic head with depressing outcomes. When I started at King's College, University of London in 1978, I already had kidney and retinal damage and life was bleak. I was told at the age of 13 that I might make it to 20 and at the age of 20 an actuary informed my father that I would be lucky to reach forty.
An ophthalmologist at King's College Hospital at this time told me that if I carried on abusing the system, I would be blind by the time I reached 23. He brought me to my senses. To this day, since 1966, I have been on 245 gm of carbohydrate a day, but when I was on insulin, I would give myself an extra dose of fast acting in order to keep up the food intake. I cannot imagine living on so little each day - where the hell does energy come from? The ophthalmologist not only brought me to my senses but, more importantly, made me realise that maintaining a balance was not simply maintaining a steady HbA1c, but more to do with how you counteract frequent peaks and troughs, which can be brought on by:illness (viruses etc) stress, adrenaline, depression, over-exertion, lack of food, too much insulin and so on. The long and short of it is that my change of attitude meant that I survive the Old B*****d (as a medic friend of mine so elegantly describes diabetes), have a wonderful daughter ( who is Celiac - another auto-immune condition undoubtedly from my genes) who has in turn a gorgeous 6 year-old daughter who calls me Silly Papa! My kidney function was so poor that Addenbrooke's Hospital transplanted a kidney AND a pancreas in August 2013 - it's still a miracle. I can understand your feelings only too well, but you have given life to your children, who would rather have a surmountable problem than no mother I'm sure. My mother always advised me to weigh up the worst case scenario. Could you live with it. If you thoroughly enjoyed any meal and it rendered you unconscious unexpectedly, the system is still in place to look after such eventualities. I feel that if you take the plunge, the glow will wear off on to your family. The best of luck.
 
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@ExtremelyW0rried I'm really sorry you feel this way. First of all I would like to say that however positive any of us sound we all have times like this when it gets us down and it seems like whatever you do doesn't work and you're on a constant seesaw. The key is getting perspective on it as personally I find stress affects my control a lot.

I'm somewhere around the same age as you, have been t1 for 34 years and have 4 kids. I've also been on a pump for the last 2 1/2 years. Yes it can all be very challenging and no i can't do everything but the reality of life is no one does. I get nervous about driving and going low and run slightly high whenever I need to do this particularly when responsible for doing party rotas etc. Day trips with kids are exhausting but that's true for most people! I try to do them with friends to minimise the stress. Yes there are times when i'm massively high around meals and can't eat and my bs doesn't come down anywhere near as fast as yours. It's frustrating but all you can do is drink lots of water and hope for the best. I used to low carb to get good hba1cs but since getting the pump with the right basal, carb ratios and pre bolus time I can manage most things. I find square is very good for big long meals. Experimenting and a libre are my keys to success.

I had a lot of problems with set failures when I started pumping and it's still nerve wracking to do a new one. I have found different sets work better on different sites and some don't work for me at all. You can get lots of advice from people on the pump forum about this.

Mentally I have various methods that work for me. If you pm me I can explain more about some as they're quite personal. However I would point out that no one knows how long they'll be here or in what condition. I had a good friend with 2 kids die of cancer before she turned 30. Every day I have is a blessing and I try to keep in mind that it's an opportunity to do something good. I don't always succeed but at least i've had that chance.

Quite a number of years ago my then new consultant told me with my hba1c (7-8ish) I was more likely to have complications. I told him that there are people who have bad bs for years and don't get complications and people who have perfect bs and do get them. He said yes but statistically that is the way it is. My response was i'm not a statistic and I need to lead my life in a way that means i'm a person. The pump has meant my hba1c is good with different efforts but the principle remains the same.

Please do feel free to pm me and i'm happy to talk to you.
 
NoKindOfSusie said:
If I'm lucky I may now live to be in my mid 60s so I am looking at 40 years of it. It's like being sent to prison.
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ExtremelyW0rried said:
Yes I used to feel bitter about the fact I'd never see my children get married or graduate or meet my grandchildren.
Now I'm glad it takes years off my life. I'm hoping not to make it to 50. That means only another 15 years of it at most.
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I don't know who you've both been talking to about diabetic life expectancies??? Maybe so if you ignore your diabetes, forget your insulin and never do a blood test? My mother was T1 for 57 years, most of those before the benefit of blood testing, died at 78, and she'd still be alive if she hadn't smoked as well. I'm 55, T1 for 47 years, many of those pre blood testing, have by no means perfect blood sugars (because I have a life outside diabetes), but still expect/hope to make it to 80.... Remember the statistics about diabetic health and mortality are skewed by the fact that diabetes treatments used to be far less good than they are now.

And my friends, family and co-workers have always known about my diabetes and no one's made a big deal out of it. The only time it's been really difficult was when I was pregnant and had some uncontrolled hypos, but even those were manageable with help from friends. (Actually, I think that time was worse for my husband, he had to see me go through some bad hypos!)

Honestly, I think you both need to get help from your gps about depression. Once you've done that then you'll find it much easier to take control of your diabetes and go back to a normal life, albeit with some inconvenience regarding diet and blood testing/injecting. Good luck, get help, you can get through this.
 
ExtremelyW0rried said:
To be honest I feel I'd be better off dead. I'm a drain on the NHS and it'll only get worse when I develop complications.
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Hi,
Please visit your GP you sound very low, your not a drain on the NHS. It's not your fault your diabetic.
Your HbA1c is very good so hopefully you won't develop complications.
I'm sorry things are difficult for you.
Take care
 
As far as I know depression is only a mental health problem when it's not being legitimately caused by anything. Personally I am totally ****** off but I don't think there's any great secret why. I don't want to be prescribed some sort of pills that will make me dance around happily loving the fact that I can't really do anything other than sit around nursing myself.

As to having kids I wouldn't even think about it, by the numbers given here it is a three times greater likelihood that the baby would develop diabetes, and I have read that it is a 1 in 17 chance if the mother has it. I would not sentence my worst enemy to this let alone my child. I was never someone who definitely wanted children but it would have been nice to have the choice, I do not feel that I can reasonably make that choice anymore.

I have read about 12 to 20 years reduction in life expectancy, I would normally expect to make mid 70s perhaps so perhaps around 60 is a realistic expectation. I did not know that I was already nearly half way through my life at 24 but apparently I had better get used to that idea. I am also not very anxious to hang around until I'm 90 on the basis that I know what is very probably going to happen to me and it is not very nice, I see it every time I sit waiting at the clinic and it is literally a nightmare.

In the end I have said the same thing, it sucks the fun out of everything, it reminds you it's there just often enough that you can never really get away from it. It's almost exactly designed to be utterly utterly hideous and miserable and if someone told me that oh, it's been a big mistake, it's not diabetes and you actually have six months to live, my first thought would be thank god for that.
 
NoKindOfSusie said:
I can't really do anything other than sit around nursing myself.
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This is depression talking. There are many perfectly healthy T1s on here who've been T1 for 40 years or more (remember the oldest ones won't be posting because they're less computer literate). It's an admittedly small sample size, but 4 out of the 5 long term T1s that I've known personally have led perfectly normal lives (sport, work, kids etc). Diabetes doesn't have to rule you. The 5th one does have problems but he has serious learning disabilities combined with other health issues, so is unable to manage his own diabetes.
NoKindOfSusie said:
I see it every time I sit waiting at the clinic and it is literally a nightmare.
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Most of the people at the clinic are T2s. It's not the same illness. (I know many people posting here are T2s who've successfully controlled their illness with diet/lifestyle changes but there are a large number of T2s who haven't.) And remember, the better diabetic control you have, the less often you attend a clinic.

You're young and you're smart (based on what you've said about your job). It may not be easy, but you truly can control this illness and take back control of your life. Good luck.
 
NoKindOfSusie said:
As far as I know depression is only a mental health problem when it's not being legitimately caused by anything. Personally I am totally ****** off but I don't think there's any great secret why. I don't want to be prescribed some sort of pills that will make me dance around happily loving the fact that I can't really do anything other than sit around nursing myself.

As to having kids I wouldn't even think about it, by the numbers given here it is a three times greater likelihood that the baby would develop diabetes, and I have read that it is a 1 in 17 chance if the mother has it. I would not sentence my worst enemy to this let alone my child. I was never someone who definitely wanted children but it would have been nice to have the choice, I do not feel that I can reasonably make that choice anymore.

I have read about 12 to 20 years reduction in life expectancy, I would normally expect to make mid 70s perhaps so perhaps around 60 is a realistic expectation. I did not know that I was already nearly half way through my life at 24 but apparently I had better get used to that idea. I am also not very anxious to hang around until I'm 90 on the basis that I know what is very probably going to happen to me and it is not very nice, I see it every time I sit waiting at the clinic and it is literally a nightmare.

In the end I have said the same thing, it sucks the fun out of everything, it reminds you it's there just often enough that you can never really get away from it. It's almost exactly designed to be utterly utterly hideous and miserable and if someone told me that oh, it's been a big mistake, it's not diabetes and you actually have six months to live, my first thought would be thank god for that.
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Yes I hugely regret my kids. I was told about 1 in100 risk given my own circumstances (age on diagnosis, age when had children) but no one seemed to take into account I am second generation t1. Turns out it lots higher. Maybe as much as 50%. So there's a good chance I've ruined their lives too. They'd have been better off not being born and given the time again I absolutely wouldn't be so selfish as to have them so I can see why you feel as you do. I always wanted children so I'd had been very sad not to have any but I can see now how selfish that was of me and ultimately if either of them are diagnosed that will be much much worse than not having had them in the first place.
 
ExtremelyW0rried said:
But they might not feel this way.

I'm a t1 of a t1 father and I am NOT happy I am here.
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You're kids will get angry at you for being unhappy. They deserve a happy dad. You can give them that.
Why make your kids unhappy because you're diabetic?
Your misery in depression is the problem not the diabetes.
None diabetics get depression too.
Don't make your kids suffer your I'll mental health, go and TALK to your GP.
 
ickihun said:
You're kids will get angry at you for being unhappy. They deserve a happy dad. You can give them that.
Why make your kids unhappy because you're diabetic?
Your misery in depression is the problem not the diabetes.
None diabetics get depression too.
Don't make your kids suffer your I'll mental health, go and TALK to your GP.
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I'm the mother not the father. My own dad is t1.
I think all t1s should be advised not to have children very very strongly. If I'd been told how high the risk was I wouldn't have had children.
If and when either of mine are diagnosed I will be advising them not to carry on the miserable cycle. Given that the NHS is going under it will soon be a very expensive disease to have as well as a total pain.
 
In fact IMO part of why it is becoming more common is because t1s are told now they can have children whereas they probably either didn't have them or didn't live long enough to have them in previous years.
So the genes are getting more common and will continue to do so as long as people with t1 have children.
 
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