Diabetes has ruined my life

[Fairygodmother]

I'd have been concerned if either of my children had T1 ExtremelyWOrried, but I'd have also been encouraged by a great person who I met when I was pregnant with the older one. She traced T1 back through every generation in her family and was also having her first baby. She'd had it since she was a child. Her family saw it as a part of them, like some see eye colour, buck teeth, musical skills, or ability to draw.
She and her husband had spent time abroad, camped in Yosemite, drove motorcross, grew veg . . . Ordinary lives. Maybe.
I realised then that it would be sad if I passed on T1, but it would be worse to think that my children's lives would be blighted by it.
Yes, there are things that trip us up. I don't deny that. I was cross that a ferry company wouldn't give me a summer job when I was a student in case I were seasick and became devastatingly hypo (they were, in retrospect, wise). I just had to make do with less. I survived. I also regret the times a hypo or hyper has taken hours out of the day, but I don't regret having children. Ever.
I do, however, worry about the kind of world my grandsons will see when they've grown up, but maybe that's where my own black dog sits growling.

 

[donnellysdogs]

No it really isn't.

I don't mind taking novorapid (well I don't exactly relish it but if that was the worst of it I could deal.)

Lantus is horrible chemical poison that makes me feel like lying in bed all day, from 2 hours to about 6 or 7 hours after I take it. I am being forced to poison myself.

You have no idea how long I'm going to live or what's going to happen, I have no idea whether I am even vaguely doing this right. The medical people clearly have no idea how to really treat it and will not give me any concrete information so what am I supposed to think.

Have you thought of pump? I am suprised if you are having this reaction and a pump delivering novarapud hasnt been discussed with you..

 

[Fairygodmother]

I've just had another thought, ExtremelyWOrried. You seem to regret not spending time with friends because it always involves drinking and eating. Most of us need social interactions and I personally can get miserable without seeing other people. Could you set up a non-eating-and-drinking get-together with your friends? Something as simple as a film matinee? You don't have to have the popcorn. A cup of tea after, too, to talk with them? Is that feasible?

 

[LouWilk059]

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.

Not trying to be mean but...enough already...go get help. I feel sorry for your spouse and children. They must be miserable. Do it for them if you can't do it for yourself. Please, you sound like you're getting worse. Ask your husband to help you get better. Do it now.

 

[donnellysdogs]

But how would you have felt if either of your children had been diagnosed? I think that would have changed your outlook.

Perhaps I do feel like I'm a victim, I certainly felt that last night when looking on FB at photos of people who used to be friends going out and enjoying themselves. Meals, drinks, parties. I went to bed early having eaten nothing because I can't eat anything anymore, then had to wake and set my alarm every hour and a half to check my blood sugars.
How lovely it must be to just want to do something and do it. By the time I've considered an invitation for something and worried about the possible outcomes I usually decide not to go. People don't bother asking me to do anything anymore because they know I will say no - although I don't cite my diabetes as the reason.

I'm sorry but unkess you have chronic problems with stomach / colon there is absolutely no reason why you cannot eat and drink if wanted...

Diabetes is not stopping you. You are.

If you wanted to find a way to manage food and drink and get out of your misery... you would...

I have chronic stomach/colon problems and eating is very difficult.. nit jyst going out, but every day. My best friend has a urostomy and ileostomy bag... boy, Iam so sorry that you tthink you have the biggest eating problems in tge world. You know what.... you dont....

I've heard negativity after negativity and I really fear for you. I have had a very negative outlook at points in my life but yours will be affecting your family too.

Please see your children as bundles of joy to give love and the best to. Nobody knows the future. Your children could well br one of the 90% children that do not get T1..

T1 is not a life sentence of misery unless you let it... and you are.

 

[becca59]

Why can you no longer eat? I hope I haven't been too blunt.

I don’t believe you have. I feel this thread has taken a rather dark turn. Lots of people, myself included have shown sympathy and urged the getting of medical help for depression. Talking about not having children is one stage too far. It is unhelpful for people already pregnant or wishing to do so. The chances are it won’t be passed on, if it is then so be it. Although a dreadful thing type 1 treatment has come on in leaps and bounds and is no longer the sentence it once was. At least most of us believe that to be so and get on with our lives accordingly.
We have just had Christmas. I like a lot of people have succumbed to the lurg going around. I have had a battle with sugar levels that has been ongoing. It didn’t stop me enjoying the bounty on offer until today, where the illness has reached peak flow. I got a chart and kept writing down the vast quantities of insulin needed to keep on top of it, when taken, when due to run out etc. I don’t normally stack but needs must. As long as I was aware what was happening when asleep I was in control. Not the diabetes. We have one life, live it.

 

[Gabrielle_Tai]

Scare of having children because of T1, well let see the what disease our children may get in their lifetime

1) T1 diabetes 4%
2) T2 diabetes 10%
3) Cancer 25%
4) everything else 100% ( well one day some disease will kill us anyway)

So why the worry since there are tons of more thing more annoying than T1 diabetes.

 

[donnellysdogs]

Scare of having children because of T1, well let see the what disease our children may get in their lifetime

1) T1 diabetes 4%
2) T2 diabetes 10%
3) Cancer 25%
4) everything else 100% ( well one day some disease will kill us anyway)

So why the worry since there are tons of more thing more annoying than T1 diabetes.

Superb reasoning.... thank you......

 

[NoKindOfSusie]

That's not reasoning, that's just ignoring facts that we don't like which is not reassuring at all. I am not able to do that and I don't make any apology for it.

My xmas and new year were absolutely great, I sat here for the last week eating omelettes listening to people going out with all their friends. And yes, I could go out and get smashed (I would like nothing more), I could go out and eat a ton and a half of carbohydrate but it is my decision not to do that because of the absolute horror movie it will store up for me in the future and the risk of being really unwell now if I get it wrong. That future is probably inevitable but perhaps I can put it off a bit.

That is a rational decision, that is not based on wishful thinking.

If any of this is wrong please tell me how. We have one life, do we? I'm not sure I have more than about a quarter of a life right now.

 

[Fairygodmother]

Hi NoKindOfSusie, I can understand how all warnings about complications and the concentration on Diabetes in today's media could make you think like that. There's no inevitability. If you can learn how to manage a hyper and recognise a hypo, which is a skill all people with T1 need, then you may feel more at ease with relaxation.
You've probably already read these, but here they are anyway. They're fairly simple and pleased don't be alarmed. Hypos and hyper are manageable. The odd hyper isn't going to lead to inevitable complications. I also have jelly babies and a sugary drink by the bed just in case of hypo - rarely used, and grandsons are always hopeful they'll have a jelly baby each when they come in in the morning.
https://www.diabetes.org.uk/guide-to-diabetes/life-with-diabetes/hypo-anxiety
https://www.diabetes.org.uk/Guide-to-diabetes/Complications/hypers
It's still early days for you and it's been a shock. Time though to tell T1 that it lives with you, not you with it.

 

[Sue192]

That's not reasoning, that's just ignoring facts that we don't like which is not reassuring at all. I am not able to do that and I don't make any apology for it.

My xmas and new year were absolutely great, I sat here for the last week eating omelettes listening to people going out with all their friends. And yes, I could go out and get smashed (I would like nothing more), I could go out and eat a ton and a half of carbohydrate but it is my decision not to do that because of the absolute horror movie it will store up for me in the future and the risk of being really unwell now if I get it wrong. That future is probably inevitable but perhaps I can put it off a bit.

That is a rational decision, that is not based on wishful thinking.

If any of this is wrong please tell me how. We have one life, do we? I'm not sure I have more than about a quarter of a life right now.

But you could go out and NOT eat a ton and a half of carbs. Why is the future probably inevitable? There are many members in the Forum who have had T1 for decades - including someone who posted recently who used glass syringes. You are implying that medical research will now go backwards. That's not rational, is it? And in any case, isn't a particular future inevitable for all of us? None of us know what is around the corner.

While I have great concern for your state of mind, I am also increasingly concerned for any newly-diagnosed T1s who may be reading this thread.....

 

[donnellysdogs]

"That future is probably inevitable but perhaps I can put it off a bit"..... wherebis any factual evidence of anything being inevitable and when... and if..

Please realise that statistics etc can be flawed.... and indeed currently there is no absolute proof that eating onelettes every day and being miserable is good.....

Longer life is not guaranteed to anyone...
Medicine and diet and science is in its infancy..

Do you really want to rely upon just statistics? Can you not level your thoughts that misery for so many people consitutes depression and suicide?? Tgat is also a huge killer and much younger ages than diabetes killing people.

Having had a nephew hang himself in a carpark and depression myself then I really consider that your thinking is pretty dangerously low around seeing any future or positivity and I beg you to try and see that your future does not havebto be a regimented hell.

 

[Fairygodmother]

And have you used this? https://www.bertieonline.org.uk/

 

[therower]

@NoKindOfSusie. You have no way of knowing your life expectancy, none of us do. Some people are given a timescale due to certain medical conditions but even then things can change.
Yes you have one life. On that you're so right.
Die at 80 miserable, alone and with a wasted life. Life is a gift, unwrap it and use it.
Die at 70 happy, contented safe in the knowledge that you haven't wasted the gift you've been given.
Unfortunately we can't give the gift of life to people who would appreciate it. But we can sure as **** not waste it, if only for the sake of people who suffer and die far to young use the gift you've been given.
You don't have to get smashed to have fun!!!!!!
You do have to eat a ton and half of carbs. Go out for food not to eat, just be with friends. Nothing wrong with just a starter.
I appreciate you are rational, but laying the blame on diabetes isn't going to solve your problems . Your diabetes is doing exactly what it's designed to do. The problem lies elsewhere.

 

[donnellysdogs]

My friend cant do more than 5% of a normsl human. If you seriously think that you are living 25% then see the smile and laughter and positivity from someone with less than 5%....

You are not seeing life to be good at all. Please try to find some positivity..

Here we go:

Deapite my eating being less than others... I can eat. I am not tube fed. I do not have an ileostomy bag or urology bag. I can make my own meals.. despite my choices being different to my friends. That is my choice. I do not have to rely upon carers to put a microwave dinner in the microwave. I do not have to have purchase a special wrap around fork/spooon to be able to eat independently. I can take my plate to a dushwasher /sink to wash up. I can use a cooker/oven if I waish to cook fresh foods. Uf I choose, I can eat any food.

Bedtime: I can go to bed at anytime. I do not have to gave a nurse every morning at 2am to give me meds and sort out my bags. I do not have a ceiling houst to get me in to bed and out of it.

I can use my hands and stand and walk if I wish to.


This friend of mine cant.

Do you know what, she laughs, jokes and is an amazing photographer and has her independence thanks tp a space age van that enables her to drive.


Now... seriously, please seek help. Your 1/4 living is not good.

 

[NoKindOfSusie]

I feel very sorry for your friend but it doesn't change anything for anyone else. Being on fire is worse than having a broken leg but the broken leg is still miserable.

And someone else mentioned how oh, there are lots of people on here who have had this disease for ages. Yes there are and there are lots of threads of people saying how awful stuff has happened to them "but hey ho it's OK."

How am I supposed to feel, happy? Do I want to rely on statistics? They're the best information I have.

OK I can go out not eat not drink and spend the entire time thinking about whether I'm just tired or sweaty or whatever for normal reasons, or whether I need to run off and stab myself because maybe if I don't I'll be shivering in a corner in five minutes. I have said it a million times but yes I could do that but it is more trouble than it is worth, so I don't.

 

[therower]

Sadly as much as I would like to correspond with you more I fear I will be wasting my time.
You have made your life choices.
"running off to stab ". " shivering in corners "
This is not the diabetes I live with.
Local news. A six year old boy died two days before Christmas for unknown reasons.
But hey he will be a statistic this time next week.
I genuinely feel for you, sadly not because you are a diabetic.
My only hope is that one day you will stop looking in the mirror of life and start to look out of the windows instead.

 

[donnellysdogs]

Sorry that you feel this way.

I dont think there is any further advice or help that you would be willing to accept...

There is absolutely nothing but your management of diabetes and understanding it to stop you eating or drinking.

All the highs/lows that you mention are manageable if you grasp the time and energy to improve them rather than living in this world of hatred towards diabetes and eating.

You do not have to
fear eating or drinking.. you have to take ownership and manage it...

That is down to you... live in misery and self loathing or pick yourself up, learn to manage and have a fantastic, happy life...

 

[ExtremelyW0rried]

The problem I have - personally - and it's a new problem, is that I get wildly different results from one day to the next. So when I eat I take a dose of insulin and risk either being high or low depending on what my blood sugar feels like doing. I usually err on the side of caution and take the lower dose and then half the time end up high but can't increase it as then I'd end up hypo a fair bit.
This is a new issue for me. I've spent 23 years without that being an issue. I can carb count etc... I'm not stupid and fully understand it. But it has become impossible to carb count with any degree of confidence and it's just easier not to eat.

 

[DCUKMod]

The problem I have - personally - and it's a new problem, is that I get wildly different results from one day to the next. So when I eat I take a dose of insulin and risk either being high or low depending on what my blood sugar feels like doing. I usually err on the side of caution and take the lower dose and then half the time end up high but can't increase it as then I'd end up hypo a fair bit.
This is a new issue for me. I've spent 23 years without that being an issue. I can carb count etc... I'm not stupid and fully understand it. But it has become impossible to carb count with any degree of confidence and it's just easier not to eat.

ExtremelyWorried, would you like your last post be become a thread of its own? If so, just let me, or any Mod know and it can be moved to create a new thread.