Type 1: I want my life back and my health back!!!!!!

[james122]

I hate it when my blood sugars are always high and I just know that one day I will be told that I am ill with complications of diabetes!!
For the last week they have been uncontrollable and I've spoken to my diabetic team and they just said do corrections and in 4 hours it will be down!! Well guess what! In 4 hours it's not down its still up after meals I'm high I've done everything correctly my hba1c has gone from 5.3 to 7.3 in 3 months and I'm honestly scared about my future and I want my life back!
I want enjoyment even if it's only for another 10 years so maybe I should just give up controlling it and live for 10 or 15 years before getting ill and dying. I would rather that than 30 years of controlling it and then after all that becoming ill.
I want my health back I want to be like other young adults my age! Who all seem to eat what ever they want and don't have to worry about their health!!

I'm so angry, frustrated, scared and upset.

 

[ickihun]

@james122 forget about the diabetes for a minute.

Now. A none diabetic eating whatever they like and eating unhealthly and reckless lifestyle. What do you think will give them over the yrs of abuse?
Statistically I wonder what are the chances of them not suffering with a serious illness before or just after they turn 40yr old?
There is no guarantees in life but I know by being over 40yr old your bad diet can come back to haunt you. Some become type 2 diabetic or have a cancer fright or heart attack threat. Cholesterol affects most people unless kept a good eye on.
Even none diabetics need to eat sensibly.
Wouldnt it be strange if diabetics longevity increased past none diabetics?
I think the future is orange and anyone who looks after themselves well definitely are winners in life.
Whatever their medical history.
Be a winner not a risk taker. Your rewards will show themselves in your 40-50s.
Be the wise one!

 

[rockape37]

I hate it when my blood sugars are always high and I just know that one day I will be told that I am ill with complications of diabetes!!
For the last week they have been uncontrollable and I've spoken to my diabetic team and they just said do corrections and in 4 hours it will be down!! Well guess what! In 4 hours it's not down its still up after meals I'm high I've done everything correctly my hba1c has gone from 5.3 to 7.3 in 3 months and I'm honestly scared about my future and I want my life back!
I want enjoyment even if it's only for another 10 years so maybe I should just give up controlling it and live for 10 or 15 years before getting ill and dying. I would rather that than 30 years of controlling it and then after all that becoming ill.
I want my health back I want to be like other young adults my age! Who all seem to eat what ever they want and don't have to worry about their health!!

I'm so angry, frustrated, scared and upset.

HbA1c of 7 isn't that bad! Much better than mine was. I used to be in the 8 region infact early this year i had climbed up to 8.6 i did improve my diabetes however after the dafne course but it did creep up and that was due to the Dawn Phenomenon. This is now a thing of the past for me and my HbA1c just recently was 6.8 or 51 in the new terms.

Regards
Martin

 

[Kristin251]

HbA1c of 7 isn't that bad! Much better than mine was. I used to be in the 8 region infact early this year i had climbed up to 8.6 i did improve my diabetes however after the dafne course but it did creep up and that was due to the Dawn Phenomenon. This is now a thing of the past for me and my HbA1c just recently was 6.8 or 51 in the new terms.

Regards
Martin

How did you stop your DP? I would love to stop mine. I end up with 3 small boluses before lunch as it continues to rise for 3 hours but then doesn't come back down unless I correct.

And james? I want my life back too. I eat very low carb and keep a strict eye on my bs ( it's not too high though) but it's a full time job of weighing food, watching the clock etc. This is my new life. Most days I accept it but I certainly have my pity parties. Sometimes I think the same way as you...just live my life and just die younger. Then I remember my aunt who died a very slow painful death from diabetes complications and not managing her control. Many surgeries , blind in both eyes, both legs amputated, dialysis etc and I wake up and move forward. That's not my vision of my death.

I hope you feel better

 

[rockape37]

Pump! I was on a very high insulin /carb ratio for my evening meal, i needed a correction before bed but come the morning i would be high again sometimes higher.

I was told i needed to go on a pump to tackle this and now all is ok. My basal (Background insulin) dose is down to just under half of what it used to be and my bolus ratios are also down

Regards

Martin

 

[catapillar]

Up until August 2015 the target hba1c was 7.5 - your hba1c is really pretty good. There are plenty of people who would be really very happy with 7.3, and rightly so.

Over 80% of type 1 diabetics have hba1c over 8. But not over 80% of type 1 diabetics develop significant diabetic complications. For example, the incidence of kidney failure in type 1 diabetics is 10%. So, while having an increased hba1c increases the risk of diabetic complications, it does not make them a certainty.

I don't know what crystal ball you think you have, but I suggest you bin it. You can't

know that one day I will be told that I am ill with complications of diabetes!!.

you don't have a crystal ball and no one knows what the future holds.

How do you know the other young adults you see enjoying themselves, eating what they want and not visibly worrying about their health aren't actually worrying about their health? You don't wear a big sign on your tshirt that says you are worrying about your health, I'm sure only a very few people would realise how worried you are. Why do you think anyone else that you see doesn't have their own worries? Perhaps the people you see enjoying a meal are waiting in test results for that dodgy mole, maybe they have a colostomy bag. You wouldn't know by glancing at them when they were out having fun having a meal.

Yeah, it sucks that you have to worker harder than most people to look after your health. But the point of that work is surely to get you a long healthy life. And in order to enjoy a long healthy life, you need to be able to enjoy life and not be subsumed by managing your diabetes. you seem to think you have two options:

1. Manage your diabetes well, but never have any fun, and tear your hair out at any diabetic management issue that isn't 100% perfect; or
2. Give up and don't do any diabetic management at all, life a hedonistic lifestyle

There is a happy medium. It is possible to manage diabetes to a degree where you are minimising the long term risks and still actually enjoying livin your life in the now. It does involve finding a balance and accepting that no one is perfect all the time.

I think you need to seek help from a health psychologist to help you work out how you can find that balance. You should also seek help from your healthcare team to see if there are any dibetes management tools or methods that would make diabetes impose less on your life, e.g basal testing, or a pump.

 

[ScottyD]

Dude, I think what @catapillar said is spot on. Those statistics make for good reading and certainly made nice reading for me!

I've been Type 1 for 3 months now and I had a A1c of 139 on diagnosis. Last week I got my first bloods taken - I came down to 41/5.9%.

In those 3 months I had days out in Edinburgh drinking away with mates - sugars naturally ran high. I went to all day events where, again, you had beer and guessing carbs and maybe run high, I was having coffee with a mate and simply forgot my insulin and ran high. I've spent time fine tuning my insulin doses but not to the extent where I'm figuring out how to get rid of spikes after meals. I really haven't changed my diet that much... I still have take-aways and foods to address my sweet tooth.

What I'm trying to say is that you can easily go out, do what you want, run high on the occasions that you're out and from what I've experienced it's not going to cause serious harm. All in moderation. Once you're home I'll bolus to bring my levels down or hop on the bike and tackle the country road outside my cul-de-sac - when I forgot to bolus for a hot chocolate and cake I was at 17mmol/l. A 15 minute power cycle brought me down to 10mmol/l. When you're at home I'd be nice and accurate but when out and about, as I've shown, being far from perfect won't cause any drastic rise in your A1c.

Sorry for the essay!

 

[james122]

A lot of people get complications from diabetes after being 95%! Even after comrolling it well!
The only way to have a good chance of guarding yourself from complications of type 1 is to be 100% and have no fun and also have a few lows here and there to keep yourself away from the highs. People see lows as a disaster and severe lows are but mild lows keep you safe and guarded from the diabetic complications so in my mind I'm healthy at a mild low. @catapillar

 

[catapillar]

A lot of people get complications from diabetes after being 95%! Even after comrolling it well!
The only way to have a good chance of guarding yourself from complications of type 1 is to be 100% and have no fun and also have a few lows here and there to keep yourself away from the highs. People see lows as a disaster and severe lows are but mild lows keep you safe and guarded from the diabetic complications so in my mind I'm healthy at a mild low. @catapillar

That is your view. It is wrong though.

Lows do not "keep you safe an guarded from diabetic complications". Frequent lows carry immediate risks of doing your self damage because your blood sugar is too low, they impact upon your quality of life. Frequent lows reduce your hypo awareness and if you are hypo unaware you will lose your driving licence. Hypos have a risk of cardio vascular episodes and dead in bed syndrome. There is a putative risk of impaired cognitive function (short term memory loss etc) from frequent low lows long term. Not to mention the risk that you might have a hypo that does just enough damage to mean that you wake up, but with a significant brain injury.

There is not one single type 1 diabetic who is 100% perfect diabetic control all the time. There are however millions of type 1s who have lived with diabetes for decades (through times when the tools and methods for managing diabetes were much less sophisticated) and have avoided significant diabetic complications.

The only person choosing to see diabetic management in such black and whit unrealistic terms is you. It is a choice you are making because you are overwhelmed by fear. Every diabetic is scared of diabetic complications, that is what drives us to strive for good control, but it doesn't drive everyone, or most people, to give up having fun. Your fear of diabetic complications is clearly very overwhelming for you, it is hindering you living your life and it is hindering your diabetic control. That is why I think you should seek help from your health care team and seek a referral to a psychologist.

 

[Jaylee]

I hate it when my blood sugars are always high and I just know that one day I will be told that I am ill with complications of diabetes!!
For the last week they have been uncontrollable and I've spoken to my diabetic team and they just said do corrections and in 4 hours it will be down!! Well guess what! In 4 hours it's not down its still up after meals I'm high I've done everything correctly my hba1c has gone from 5.3 to 7.3 in 3 months and I'm honestly scared about my future and I want my life back!
I want enjoyment even if it's only for another 10 years so maybe I should just give up controlling it and live for 10 or 15 years before getting ill and dying. I would rather that than 30 years of controlling it and then after all that becoming ill.
I want my health back I want to be like other young adults my age! Who all seem to eat what ever they want and don't have to worry about their health!!

I'm so angry, frustrated, scared and upset.

OK..?!! Try this one on for size.. I am (or could possibly be?) your "future".
30 years ago all my mates were doing what they liked. Yeah, I held back cuz I was a diabetic & ocaisinally I would try & "cut loose" with funny enough a "warning" from my peers that it might not do my diabetes any favours..

Fast forward to now. Most the guys I used to know have not aged well on their "regime". Some are on a concoction of prescribed "old man drugs"? They just burned out..

Boring ol me is still jus doin insulin. I know where I'd rather be!

 

[GrantGam]

Up until August 2015 the target hba1c was 7.5 - your hba1c is really pretty good. There are plenty of people who would be really very happy with 7.3, and rightly so.

Over 80% of type 1 diabetics have hba1c over 8. But not over 80% of type 1 diabetics develop significant diabetic complications. For example, the incidence of kidney failure in type 1 diabetics is 10%. So, while having an increased hba1c increases the risk of diabetic complications, it does not make them a certainty.

I don't know what crystal ball you think you have, but I suggest you bin it. You can't
you don't have a crystal ball and no one knows what the future holds.

How do you know the other young adults you see enjoying themselves, eating what they want and not visibly worrying about their health aren't actually worrying about their health? You don't wear a big sign on your tshirt that says you are worrying about your health, I'm sure only a very few people would realise how worried you are. Why do you think anyone else that you see doesn't have their own worries? Perhaps the people you see enjoying a meal are waiting in test results for that dodgy mole, maybe they have a colostomy bag. You wouldn't know by glancing at them when they were out having fun having a meal.

Yeah, it sucks that you have to worker harder than most people to look after your health. But the point of that work is surely to get you a long healthy life. And in order to enjoy a long healthy life, you need to be able to enjoy life and not be subsumed by managing your diabetes. you seem to think you have two options:

1. Manage your diabetes well, but never have any fun, and tear your hair out at any diabetic management issue that isn't 100% perfect; or
2. Give up and don't do any diabetic management at all, life a hedonistic lifestyle

There is a happy medium. It is possible to manage diabetes to a degree where you are minimising the long term risks and still actually enjoying livin your life in the now. It does involve finding a balance and accepting that no one is perfect all the time.

I think you need to seek help from a health psychologist to help you work out how you can find that balance. You should also seek help from your healthcare team to see if there are any dibetes management tools or methods that would make diabetes impose less on your life, e.g basal testing, or a pump.

I'll second what @catapillar has said.

In my region, at the last count, only 7.8% of people achieved an A1c <53mmol/mol (7%). That is an extremely small number. I don't know what the figures are in your area @james122; what I do know however, is that they won't be much better.

Not only were you part of that small percentage of people on target, but even now with things going "badly", you're just outside it! A lot of people would be delighted to have an A1c of 7.3%.

Chin up and try not to be so hard on yourself. You'll be grand

Good luck to you!

Grant

 

[CarbsRok]

I hate it when my blood sugars are always high and I just know that one day I will be told that I am ill with complications of diabetes!!
For the last week they have been uncontrollable and I've spoken to my diabetic team and they just said do corrections and in 4 hours it will be down!! Well guess what! In 4 hours it's not down its still up after meals I'm high I've done everything correctly my hba1c has gone from 5.3 to 7.3 in 3 months and I'm honestly scared about my future and I want my life back!
I want enjoyment even if it's only for another 10 years so maybe I should just give up controlling it and live for 10 or 15 years before getting ill and dying. I would rather that than 30 years of controlling it and then after all that becoming ill.
I want my health back I want to be like other young adults my age! Who all seem to eat what ever they want and don't have to worry about their health!!

I'm so angry, frustrated, scared and upset.

Hi James,
have you increased your basal (background) insulin?
Even though it's very frustrating at times no one ever gets perfect numbers all the time. Unfortunately we have to take the rough with the smooth and firefight until the adjustments are in place and working just fine until the next blip Oh and you can eat what you want within reason.
Dying of uncontrolled diabetes is a slow and very painful death, I can assure you that you do not want to go down that route so please don't even consider it.
You can live a full and normal life with type1 diabetes even if very frustrating at times as I've already mentioned.

 

[CarbsRok]

A lot of people get complications from diabetes after being 95%! Even after comrolling it well!
The only way to have a good chance of guarding yourself from complications of type 1 is to be 100% and have no fun and also have a few lows here and there to keep yourself away from the highs. People see lows as a disaster and severe lows are but mild lows keep you safe and guarded from the diabetic complications so in my mind I'm healthy at a mild low. @catapillar

A lot of people also do not have complications.
How do you think people diagnosed in the 40's - 80's managed to stay complication free we had no test meters in the good ol days yet many of these people are walking around fit and healthy.
Mild lows soon accumulate to hypo unawareness if they are frequent so your logic is quite logical

 

[Steve14]

I know this may sound silly, but how's your teeth? A while back I read a post that unexplainable changes in your blood sugar levels can be either caused by honeymoon or dental issues. Not saying it's 100% truth, but inflammation is inflammation - can't argue with that! Any gingivitis or plaque? Old root canals?

 

[Diakat]

Hi James, the only guarantee here is that we will all die of something sooner or later. No one can promise you long life with or without fun, we all have to make out choices and live with them. However I think your chances of a good life are improved with decent control and a little thought. Fun can be more than thouhtlesly eating junk.

 

[ickihun]

Giving Dr Bernstein's book a read may enlighten you. It did me. He's type 1 and done it and wears the t-shirt.