Diabetes has ruined my life

[EllieM]

I've been T1 for 47 years and am still in good health, able to go on walking holidays, overseas trips and generally do all the stuff that non diabetics do. I also got through two T1 pregnancies and have two healthy adult children.

As the others say, you sound depressed. Try to get some help, as it really doesn't need to be like this. (Though most of us have periods when life/diabetes gets us down.) I also agree that a bit more insulin/carbs might help.

Also, how about some continuous glucose monitoring? Can you get your clinic to give you a trial? This might reassure you as to night time hypos, because waking every two hours for a blood test is not good for your mental or physical health.

Your hba1c sounds excellent by the way, way better than mine has been for most of my 47 years, so I can understand why the clinic is more worried about low blood sugars.

Good luck.

 

[ickihun]

It sounds like depression to me too @ExtremelyW0rried .
I also feel you are being too hard on yourself. Your looking for perfection and with diabetes there's no such thing. Even we type2s frustrate ourselves to find the golden chalice (reversal). Only a very very few ever accomplish it and only in the early stages of the disease. We can try and con ourselves into thinking perfection will make all the difference, it does not.
HOW you deal with diabetes is the golden chalice.....I believe.
OK some type2s can use a plan or similar to help but ultimately.... We are just managing the best we can. Daily.

What I'd like you to do is choose just one aim for 2018.
Maybe do a mock important indulgent meal (birthday meal or anniversary celebration) in practice for 2018 Christmas meal.
Or something similar.
I think your confidence has been given a knock.
Your more than capable of getting through a failure with emergency kit at hand.
Your expectations of perfect hba1c are too high at Xmas time. Any diabetic would tell you that, no matter their type.
Cut yourself some slack, please. Please.

 

[ExtremelyW0rried]

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.

 

[ickihun]

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.

I get like you when I'm running my bgs too low.
Please test and tell me your current BG hun. Please.

 

[LouWilk059]

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.

My father was type 1 with meds twice a day. Out of his six children, only one inherited (that would be me BUT type 2). Yes, it's difficult to deal with type 1, but you will prevail, just as my father did, with help and support. Just keep at it. Wishing you the best.

 

[ExtremelyW0rried]

Nope current blood sugar is 6.8. I've felt like this for ages so don't think it's blood sugar related in itself.

 

[EllieM]

Well, good news. The chances of transmitting T1 to your kids is really low, (unlike T2 which has an extremely strong genetic component). Also, your profile says you're female and you're slightly more likely to get the disease with a T1 father than mother. Last time I looked up the statistics (a long time ago), it was something like a 1 in 30 chance rather than 1 in 100 with no family members.
I am actually very lucky that my mother was T1 (she had no family members with it). She recognised my diabetes incredibly early so I was diagnosed before I had more than the mildest symptoms, and she was able to help me with my diabetes much more easily than an unprepared parent. Did she feel guilty about it? Probably sometimes, but I certainly don't think she should have and I'm not going to castigate myself if any of my descendants get T1. T2 is strongly genetic and you can reduce the risk by lifestyle changes, T1 seems much more random (exposure to the wrong virus, have an accident?) and there's really nothing you can do about it.
The treatment for diabetes has improved so dramatically since I became diabetic, and consequently the risk of early death and complications has gone down too. For the first decade and a half of my illness I had no access to blood testing meters, and you can guarantee that my hba1c suffered as a result. I'm sure it will improve some more, and for younger diabetics then a cure seems possible. Diabetes is a pain, and I loathe hypos with a passion, but it certainly hasn't ruined my life.

Good luck, get some help, you can get over this.

 

[phdiabetic]

You're not alone! Most diabetics do feel a bit down about things every once in a while, that's totally normal. I am a bit like you - normal things take forever, or just don't happen, because of diabetes. Get dressed? Low blood sugar. Go shopping? Low blood sugar. Lie perfectly still with my pump turned off for 3 hours? Also low blood sugar.

To some extent, you can't avoid these things, but there are still plenty of things you can do with diabetes - do you have any hobbies? Try to find some pastime that doesn't involve exercise. Reading, boardgames, knitting, craft, painting, take an online course in something that interests you, write a novel...there are plenty of things that you can do sitting quietly at a table from the comfort of your own home.

Going out to eat - I do that fairly often. There's usually some low carb option available - salad, veggie dishes, meat - most restaurants or fast food places have at least one of these.

Holidays - I agree this is tough, but with proper preparation you can manage it. Take some food you know you can eat with you, or eat one of the above listed things at restaurants. If exercise is an issue, do something that doesn't need much - concerts, plays, cruises, bus tours, hobby meetups or conventions.

Day trips/activities - I do this sometimes, they are a lot of preparation but usually it's worth it. My mum and I went shopping in the local mall before Christmas, I got low then spiked to 13 so we just gave up on the shopping and came home. Things turned out well since we found the clothes we wanted online at a better price anyway!

 

[JTL]

I have multiple health problems.
I've been really fit healthy strong and active but that's all gone out the window.
Seems I get a new ailment/complication added year on year but that's life.
It's my life.
Of course I'd like to be my old self but it isn't going to happen so I adapt to the new self.
A sense of humour is essential.
You have to learn to laugh at the disasters.
Laugh at yourself and your predicaments.
You'll be a much easier much nicer person to be around if you can do that.
I've never been depressed bit I've come across depression plenty of times and I'd bet my pants you'll get such a diagnoses.
Go get the diagnosis so that you can start dealing with everything that life's chucking at you just now.
There are T1's and 2's that sail ships climb mountains teach preach build cycle walk run paint compose you name it.
In conclusion it can't be the diabetes that is the main problem can it really?
You are suffering from depression and it's urgent you start dealing with it.
All the best in your journey.

 

[SHmano]

Hi there,

High sugars always cause depression. I am a T1 diabetic from the age of 7 and now I am 53 now. Taking insulin and adjusting your dosage and food will be there in mind. Let it not hinder your thoughts. Life has to go on. They always say positive thoughts always help you. You have lived with it for so long. Come on let it not hinder your thoughts. You cannot change or become non-diabetic then why let it harm you.

Good luck.

 

[Altaf_7]

Hi there,

High sugars always cause depression. I am a T1 diabetic from the age of 7 and now I am 53 now. Taking insulin and adjusting your dosage and food will be there in mind. Let it not hinder your thoughts. Life has to go on. They always say positive thoughts always help you. You have lived with it for so long. Come on let it not hinder your thoughts. You cannot change or become non-diabetic then why let it harm you.

Good luck.

How has your life been all those years ?

 

[SHmano]

How has your life been all those years ?

My life has not been easy. Managing with high and low. My mother had helped me a lot in making me understand how to cope up with high and lows of sugar. I do have minor complications with kidney and nerves. Other than that so far no major complications. Thanks to my parents who have given me right knowledge.

 

[Bluey1]

Diabetes control........... 80% mental/emotional. 15% medication. 5% winging it.
....
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.

Agree with you 100% therower
I'm yet to experience the joys of a pump and I have only D 14years.

ExtremelyWOrried, you don't have Diabetes, Diabetes has you. There are very few things that you are not allowed to do with D, start doing them. Nearly everyone here leads a normal life. You mention that you can't take your kids on holidays or Theme parks - why not! One of my Friends once finished Uni, travelled the world, with insulin pens. I have taken 14hr non stop flights and then travelled around the USA for weeks. Even if it's only for your kids, live a little.

A number of years ago when I was relatively newly diagnosed my extended family was not aware I had D, one of my great uncle (in law - I didn't get D from him and I'm the only one in family with it) was well known as a T1 diabetic. All he would ever talk about was D and how terrible it was and impacts on his life. He had everyone including me running around in circles after him. By late afternoon I had, had enough when he started carrying on that he would require tea at 6pm. I challenged him as to why 6pm and of course because he was D. I asked what he was on, which was Lantus and Novo Rapid. I then told everyone that he was taking them for a ride and to ignore him and he would have tea at the same time as the rest of us - whenever that would be and if necessary a glass of lemonade. He started on again how difficult D was and I didn't know what I was talking about - I just pulled my pen out of my pocket and held it up. I then explained to everyone how MDI worked and he just hadn't caught up with the times even though his medication had. He wasn't happy that there were now 2 roosters in the hen house and even more so that the younger one had just ruined the rest of family gatherings, from then on at family gatherings he ate what everyone else ate (excluding desert) and when they ate. As soon as he started to complain the answer was, if you are low there is lemonade in the fridge! When I was around when he started, if you are high I have a spare pen you can have.

 

[ExtremelyW0rried]

Yes i prefer people not to know either.
Lots of people I work with don't know.

I've never really spoken about it to friends, it's boring isn't it? For other people. Now I just don't go out socially at all anyway, what's the point?

Part of what upset me Christmas was was we were out with my husband's family and they probably thought I was making a stupid fuss not eating anything. They kept saying 'won't you be better if you eat?' No no. It'll go higher if I eat. I just wanted to be left alone but I felt it was really noticeable when out for Christmas lunch that I wasn't able to eat anything.

 

[JTL]

You keep saying what's the point?
The point this time being you could have enjoyed the company of others and a few bloody mary's maybe.
Your thinking is slowly ... maybe not so slowly building a prison for you.
I knew a guy who was alcoholic and he'd managed not to have a drink for a few years.
He many times had to be in situations were there was alcohol flowing.
Of course he didn't want to say "my names Barry and I'm an alcoholic" in front of people all the time and he'd already experienced the constant badgering of oh go on cheer up etc etc.
So he started to say to people ... "I've developed an allergy to alcohol would you believe and right now I darent touch a drop".
It worked.
He'd found a way to take the pressure off.
You need to develop your own tactics.

 

[JTL]

If you knew you were going out couldn't you have not eaten in advance thereby raising the old sugar ceiling a little higher giving you some breathing room?
Why as well couldn't you eat anything?
This isn't diabetes this is depression as far as I'm concerned.
Please go to your GP.

 

[donnellysdogs]

I used to sometimes feel like you regarding diabetes..

Until I met this special lady.

This lady has totally changed my thought pattern. I hope this photo and explanation can help you too.

This lady was diagnosed with a really rare type of dystonia at 18. She cannot stand, wee or poo. She has no usable function in hans or feet or any of her body but ..... and this is the biggest but... she laughs and jokes and lives fully everyday to the best of her abilities....although she cant do anything in her home at all, she can still drive thanks to current technology.

I have had double mastectomy, chronic stomach and colon problems and T1 for well over 30 years.... I have had chronic depression to point of suicidal thoughts and mental health help.

She alone does more to help me live than any other person, and that includes my hubby.. although he is superb.

I'm not suggesting theres people inna worse position... just that there are people and professionals, technology and help that you can get to handle your aspects of living with diabetes...

I'm so glad you have posted bur I do hope that you can consider that there are fantastic unusual ways and occurences to gain to
help you regarding diabetes and life.

I too have had pump, but went back to MDI and have been testing, testing testing.... but this isnt living. I think you know that but are having difficulties getting balance with everything.

You can find things to help. We bought a puppy dog 3 days after my 2nd madtectomy. Some people told me I was wrong to do this.. in fact it was the best choice I have ever made. Through my girlie I met this friend and her canine assistance dog. Havent looked back. Life for me is still a challenge each day but finding a purpose to live is a lot better thinking than "a burden to NHS".....

Please, please do not give up... seek out ways in 2018 to laugh and relax instead...

 

[NoKindOfSusie]

I just feel like I do everything right and it still doesn't work out half the time. I know that's the nature of it but it's so frustrating.
I barely eat - less than 30g carbs a day ordinarily - I don't even low carb. I just don't eat. I don't sleep because I check my blood sugar every two hours at least. I exercise. I do all I can and still I see numbers in the teens some of the time. It drives me crazy.
Clinic aren't bothered. They only bother now if you have a low blood sugar. They don't care about anything else. They didn't even like mine in the 4s last time I went. Basically you can't win.

There is nothing I can say to you other than what is going through your head is exactly what is going through mine in almost every detail, except that I've only been doing this since September. 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.

 

[ExtremelyW0rried]

There is nothing I can say to you other than what is going through your head is exactly what is going through mine in almost every detail, except that I've only been doing this since September. 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.

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.

 

[kev-w]

Agree with you 100% therower
I'm yet to experience the joys of a pump and I have only D 14years.
A number of years ago when I was relatively newly diagnosed my extended family was not aware I had D, one of my great uncle (in law - I didn't get D from him and I'm the only one in family with it) was well known as a T1 diabetic. All he would ever talk about was D and how terrible it was and impacts on his life. He had everyone including me running around in circles after him. By late afternoon I had, had enough when he started carrying on that he would require tea at 6pm. I challenged him as to why 6pm and of course because he was D. I asked what he was on, which was Lantus and Novo Rapid. I then told everyone that he was taking them for a ride and to ignore him and he would have tea at the same time as the rest of us - whenever that would be and if necessary a glass of lemonade. He started on again how difficult D was and I didn't know what I was talking about - I just pulled my pen out of my pocket and held it up. I then explained to everyone how MDI worked and he just hadn't caught up with the times even though his medication had. He wasn't happy that there were now 2 roosters in the hen house and even more so that the younger one had just ruined the rest of family gatherings, from then on at family gatherings he ate what everyone else ate (excluding desert) and when they ate. As soon as he started to complain the answer was, if you are low there is lemonade in the fridge! When I was around when he started, if you are high I have a spare pen you can have.

It's a good job diabetes affects everybody in exactly the same way.....