New To T1D

[tiptopjohn]

Hello
I’ve only recently been diagnosed with T1D at the age of 47.

The diagnosis has hit me quite hard as I was not expecting it.

To be honest it’s made me quite depressed. I keep reading the internet and all I get is horror stories, which don’t help.

Is there anything positive anyone can tell me?

Thanks in Advance

John

 

[helli]

Welcome to the club @tiptopjohn

Firstly, give yourself time to adapt - think of your diagnosis as a form of grief.

It is true that diabetes is a serious condition and your could get some nasty complications but there has never been a better time to be diagnosed. The technology and medication for diabetes has progressed in leaps and bounds in the 18 years since I was diagnosed. Remember there are people celebrating 40, 50, 60 years with Type 1 diagnosis and most of that has been without fast acting insulin, without insulin pumps, without CGMs, without even finger pricking meters.

I was incredibly lucky when I was diagnosed to get a fantastic DSN who told me diabetes should not stop me doing anything. Nearly 20 years later and I have travelled all around the world from Nepal to Venezuela, taken part in sports including climbing and cycling, partaken in activities from sky diving to flying trapeze, have a successful career and a wonderful social and home life. I have no complications and am fitter than friends, family and colleagues of a similar age.

There was a thread in the last year about top tips for someone newly diagnosed with Type 1 which I remember to be very helpful. Hopefully @everydayupsanddowns can remind us where this thread is hiding (sorry, I can't find it).

 

[tiptopjohn]

Welcome to the club @tiptopjohn

Firstly, give yourself time to adapt - think of your diagnosis as a form of grief.

It is true that diabetes is a serious condition and your could get some nasty complications but there has never been a better time to be diagnosed. The technology and medication for diabetes has progressed in leaps and bounds in the 18 years since I was diagnosed. Remember there are people celebrating 40, 50, 60 years with Type 1 diagnosis and most of that has been without fast acting insulin, without insulin pumps, without CGMs, without even finger pricking meters.

I was incredibly lucky when I was diagnosed to get a fantastic DSN who told me diabetes should not stop me doing anything. Nearly 20 years later and I have travelled all around the world from Nepal to Venzuela, taking part in sports including climbing and cycling, partaking in activities from sky diving to flying trapeze, have a successful career and a wonderful social and home life. I have no complications and am fitter than friends, family and colleagues of a

There was a thread in the last year about top tips for someone newly diagnosed with Type 1 which I remember to be very helpful. Hopefully @everydayupsanddowns can remind us where this thread is hiding (sorry, I can't find it).

Thank you so much for your positive outlook on being diagnosed with T1D. I thought my world had come to an end when I was told I had the condition. I just need to keep reminding myself I can live with it.

 

[rebrascora]

Hi and welcome from me too.

I was only diagnosed just over 3 years ago at the age of 56 so I still remember the feeling of shock, grief and being totally overwhelmed. There is a huge amount to learn and the curve is very steep to begin with but 3 years on I can say that I am fitter and healthier and a bit lighter than I was at diagnosis. I have to be more conscious of what I eat and keeping myself fit and my circulation healthy so try to fit in brisk daily walks as well as being very conscious of everything I eat.... which can be a pain at times but my diet had needed some improvement for many years and my diagnosis was the kick up the backside I needed to do something about it. Yes, diabetes and particularly balancing insulin doses to what your body needs and the food you eat is a total pain, but we have some amazing kit now to help us and this forum is a fantastic resource because people who face the same issues and challenges can share their experiences and swap tips and strategies that work for them which may or may not work for others and this can vary quite significantly from the advice that clinicians might give us, because they mostly just know the theory, not so much what happens in practice or the mental strain of coping with it all. Here we "get it" because we are living with it, so do come here as regularly as you can and just touch base or ask questions or just read other people's stories (bearing in mind that we have members with other Types of diabetes than just Type 1, so experiences and approaches will vary).

Personally I feel that my lifespan has probably been extended as a result of my diagnosis and my quality of life has improved and my diet has improved and my fitness has improved and I am better looked after by the health service because there are now regular checks on various aspects of my health so I don't feel I am any more at risk of serious illness/complications than I was before and probably less, because I am taking better care of myself. I still enjoy life and food and do most of the things I did before and some new ones, but I do have to give it a bit more thought and planning now than before and be a bit more disciplined. The testing and calculating and injecting gradually becomes second nature.... a bit like driving a car takes a lot of individual thought processes when you first learn but then as you become more experienced you change gear and look in the mirror and indicate or activate the windscreen wipers etc automatically without having to give it conscious thought. There will be bumps in the road occasionally or accidents that you can't avoid, be they of your own making (we all make mistakes from time to time because we are human and they can be the biggest learning experiences (guess who injected 24 units of bolus insulin the other morning instead of basal insulin and then had to spend the morning guzzling jelly babies and drinking coffee with sugar to try to prevent myself from dropping into a life threatening hypo) and other times when outside factors cause the "accident" or major BG upheaval like illness or injury. Learning how to keep ourselves as safe as we can in these circumstances is just a question of gaining knowledge and experience and keeping our wits about us. Mostly it is just a bit frustrating though with a few fist pump moments when you really crack it and think " Yesss! I really got it spot on that time!" and more often than not you manage it well enough but probably not as well as you would like.... especially if you have a tendency to perfectionism. Diabetes is all about balance.... quality of life with reasonable BG management, balance of insulin to carbs and exercise, balance of basal dose to liver output and balance of mental health etc. These things need regular reassessment to make sure that you aren't getting out of sync or perspective but otherwise you can live well with diabetes if you look after it.

 

[SB2015]

Welcome to the forum @tiptopjohn from another late starter with T1 (aged 53)

As @helli says there is a lot to learn rather quickly and it takes time to accept and adapt. Give yourself time and try to be patient with yourself as you adjust to your new normal. This is a manageable condition, and on here (rather than the internet) there is plenty of positive experiences to tap into, so just keep any questions you have coming.

 

[tiptopjohn]

Hi and welcome from me too.

I was only diagnosed just over 3 years ago at the age of 56 so I still remember the feeling of shock, grief and being totally overwhelmed. There is a huge amount to learn and the curve is very steep to begin with but 3 years on I can say that I am fitter and healthier and a bit lighter than I was at diagnosis. I have to be more conscious of what I eat and keeping myself fit and my circulation healthy so try to fit in brisk daily walks as well as being very conscious of everything I eat.... which can be a pain at times but my diet had needed some improvement for many years and my diagnosis was the kick up the backside I needed to do something about it. Yes, diabetes and particularly balancing insulin doses to what your body needs and the food you eat is a total pain, but we have some amazing kit now to help us and this forum is a fantastic resource because people who face the same issues and challenges can share their experiences and swap tips and strategies that work for them which may or may not work for others and this can vary quite significantly from the advice that clinicians might give us, because they mostly just know the theory, not so much what happens in practice or the mental strain of coping with it all. Here we "get it" because we are living with it, so do come here as regularly as you can and just touch base or ask questions or just read other people's stories (bearing in mind that we have members with other Types of diabetes than just Type 1, so experiences and approaches will vary).

Personally I feel that my lifespan has probably been extended as a result of my diagnosis and my quality of life has improved and my diet has improved and my fitness has improved and I am better looked after by the health service because there are now regular checks on various aspects of my health so I don't feel I am any more at risk of serious illness/complications than I was before and probably less, because I am taking better care of myself. I still enjoy life and food and do most of the things I did before and some new ones, but I do have to give it a bit more thought and planning now than before and be a bit more disciplined. The testing and calculating and injecting gradually becomes second nature.... a bit like driving a car takes a lot of individual thought processes when you first learn but then as you become more experienced you change gear and look in the mirror and indicate or activate the windscreen wipers etc automatically without having to give it conscious thought. There will be bumps in the road occasionally or accidents that you can't avoid, be they of your own making (we all make mistakes from time to time because we are human and they can be the biggest learning experiences (guess who injected 24 units of bolus insulin the other morning instead of basal insulin and then had to spend the morning guzzling jelly babies and drinking coffee with sugar to try to prevent myself from dropping into a life threatening hypo) and other times when outside factors cause the "accident" or major BG upheaval like illness or injury. Learning how to keep ourselves as safe as we can in these circumstances is just a question of gaining knowledge and experience and keeping our wits about us. Mostly it is just a bit frustrating though with a few fist pump moments when you really crack it and think " Yesss! I really got it spot on that time!" and more often than not you manage it well enough but probably not as well as you would like.... especially if you have a tendency to perfectionism. Diabetes is all about balance.... quality of life with reasonable BG management, balance of insulin to carbs and exercise, balance of basal dose to liver output and balance of mental health etc. These things need regular reassessment to make sure that you aren't getting out of sync or perspective but otherwise you can live well with diabetes if you look after it.

Thank you very much for taking time to reply to me. I’m getting a lot of positive advice, that I can live relatively normally with the condition and my worries are unfounded.

 

[tiptopjohn]

Welcome to the forum @tiptopjohn from another late starter with T1 (aged 53)

As @helli says there is a lot to learn rather quickly and it takes time to accept and adapt. Give yourself time and try to be patient with yourself as you adjust to your new normal. This is a manageable condition, and on here (rather than the internet) there is plenty of positive experiences to tap into, so just keep any questions you have coming.

Thank you, you’re all being very helpful.

 

[trophywench]

Er, is it good news I was diagnosed aged 22, am now 72, had a few background changes evident at the backs of my eyes over the years, but retinopathy results last month said no changes evident, I have had quickly growing cataracts in both eyes, they appeared after approx 40 years, but I had both removed NP. I've only required 2 operations during my life so far - total hysterectomy in the 1990s, because of fibroids, then I fell over and smashed a patella the other year, and I've healed that quick they have trouble removing the stitches/staples. ie my diabetes does not appear to have hampered my body's capacity to heal itself, despite the dire warnings. Believe you me I'm no saint as far as BG control is concerned either. I have never even aimed for perfection cos by the time I was 22, I certainly already knew I wasn't perfect!

It's a shock whatever age you happen to be! Still - it won't stop you doing anything at all. The NHS are great - but Oh yes they DO have to tell us all the dire things that could happen (to prevent us suing them for not telling us eg don't drink gallons of alcohol a week for years and years and then act surprised when your liver fails .......)

You - same as me and everyone else with diabetes - have to treat our own D. Rest of em can only supply the means and the advice - so get learning, I should! - and enjoy.

 

[tiptopjohn]

Er, is it good news I was diagnosed aged 22, am now 72, had a few background changes evident at the backs of my eyes over the years, but retinopathy results last month said no changes evident, I have had quickly growing cataracts in both eyes, they appeared after approx 40 years, but I had both removed NP. I've only required 2 operations during my life so far - total hysterectomy in the 1990s, because of fibroids, then I fell over and smashed a patella the other year, and I've healed that quick they have trouble removing the stitches/staples. ie my diabetes does not appear to have hampered my body's capacity to heal itself, despite the dire warnings. Believe you me I'm no saint as far as BG control is concerned either. I have never even aimed for perfection cos by the time I was 22, I certainly already knew I wasn't perfect!

It's a shock whatever age you happen to be! Still - it won't stop you doing anything at all. The NHS are great - but Oh yes they DO have to tell us all the dire things that could happen (to prevent us suing them for not telling us eg don't drink gallons of alcohol a week for years and years and then act surprised when your liver fails .......)

You - same as me and everyone else with diabetes - have to treat our own D. Rest of em can only supply the means and the advice - so get learning, I should! - and enjoy.

Hello

It’s fantastic news that having T1D for so long and being so healthy, long May it be that way.

I do like a drink on special occasions, other than that I’m nigh on tea total. I was just worried that that would have to stop abs my life as I knew it was over.

I’m trying to loose weight and hope to loose a few stone. I’m eating less and more healthy and do take regular exercise.

You’re all being very kind, providing me with reassurance.

Thank You

 

[Bruce Stephens]

I do like a drink on special occasions, other than that I’m nigh on tea total. I was just worried that that would have to stop abs my life as I knew it was over.

The guidelines on alcohol are just about being safe while drinking, I think. So be careful when drinking since drinks can contain sugar, and (conversely) alcohol can lower blood glucose (as I understand it because processing alcohol can inhibit the liver's usual release of glucose).

 

[tiptopjohn]

Thank you, I only drink a few times a year and since being diagnosed I thought that was now gone. Like people have said, it’s a very steep learning curve and I’m just starting out.

 

[trophywench]

Oooh, never said I was healthy !

 

[rebrascora]

Funny what you worry about when you are newly diagnosed! I remember feeling incredibly badly done to that I would never be able to eat a Cadbury's cream egg ever again. I was a sugar addict and chocoholic pre-diagnosis. In reality I could if I wanted to, but I chose to "spend" my insulin on other things and a cream egg would take quite a bit of insulin and cause me unnecessary BG upheaval.... just not worth it.
I still enjoy a tipple now and then but I choose low carb options that don't need insulin like dry white/red wine or spirits like gin or rum with low calorie mixers. Beer and cider are higher carb and might need insulin but they might not and it can be quite individual but the odd drink once in a while on special occasions is not going to be a problem and you will learn how to manage it. It is generally best to have alcohol with food.

 

[tiptopjohn]

That’s

Funny what you worry about when you are newly diagnosed! I remember feeling incredibly badly done to that I would never be able to eat a Cadbury's cream egg ever again. I was a sugar addict and chocoholic pre-diagnosis. In reality I could if I wanted to, but I chose to "spend" my insulin on other things and a cream egg would take quite a bit of insulin and cause me unnecessary BG upheaval.... just not worth it.
I still enjoy a tipple now and then but I choose low carb options that don't need insulin like dry white/red wine or spirits like gin or rum with low calorie mixers. Beer and cider are higher carb and might need insulin but they might not and it can be quite individual but the odd drink once in a while on special occasions is not going to be a problem and you will learn how to manage it. It is generally best to have alcohol with food.

That’s my problem, I’m a born worrier and just believe all the worst case scenarios i’ve Read on the internet as the inevitable. Am grateful for the reassurance.

 

[tiptopjohn]

L

Oooh, never said I was healthy !

 

[Bloden]

Hiya @tiptopjohn. Sorry to hear about your diagnosis. I was 41 (almost 14 years ago) when I found out. I wasn’t expecting it either - who is? - so it was a massive shock to the system. It isn’t all gloom n doom tho. There’s loads to take on board at first, but it DOES get easier with time. It’s deffo a condition you live with, and live well.

 

[helli]

Funny what you worry about when you are newly diagnosed! I remember feeling incredibly badly done to that I would never be able to eat a Cadbury's cream egg ever again. I was a sugar addict and chocoholic pre-diagnosis. In reality I could if I wanted to, but I chose to "spend" my insulin on other things and a cream egg would take quite a bit of insulin and cause me unnecessary BG upheaval.... just not worth it.
I still enjoy a tipple now and then but I choose low carb options that don't need insulin like dry white/red wine or spirits like gin or rum with low calorie mixers. Beer and cider are higher carb and might need insulin but they might not and it can be quite individual but the odd drink once in a while on special occasions is not going to be a problem and you will learn how to manage it. It is generally best to have alcohol with food.

You describe insulin as something we have to ration. That is not the case.
I appreciate some people with Type 1 find their blood sugars are easier to manage with low carb but equally, some of us find low carb is harder to manager - we are all different.

This weekend, I was happy to dose insulin for my scones with jam and clotted cream as well as the beer I had later.

My message to @tiptopjohn is that you will find the path which is best for you - your body and your lifestyle - and there is no reason to ration insulin but you may find lower doses easier to manage (or you may not).

 

[Windy]

There was a thread in the last year about top tips for someone newly diagnosed with Type 1 which I remember to be very helpful. Hopefully @everydayupsanddowns can remind us where this thread is hiding (sorry, I can't find it).

Was it this one? @helli ?

 

[tiptopjohn]

Hiya @tiptopjohn. Sorry to hear about your diagnosis. I was 41 (almost 14 years ago) when I found out. I wasn’t expecting it either - who is? - so it was a massive shock to the system. It isn’t all gloom n doom tho. There’s loads to take on board at first, but it DOES get easier with time. It’s deffo a condition you live with, and live well.

Thank you, am hearing so many positives, it does make me feel better. Am sure it’ll get better with time.

 

[everydayupsanddowns]

Was it this one? @helli ?

Beat me to it @Windy

Yes this was a thread where people suggested things they wished they could go back and tell themselves soon after diagnosis.

5 Top Tips for Better Diabetesing

Just found myself absently wondering what I would say to myself if I could go back in time ‘Bill and Ted’ style and offer newly-diagnosed-me some hints and tips for better diabetes management, and a better relationship with my diabetes from future-me. What 5 hints and tips I might offer myself...

forum.diabetes.org.uk

Welcome to the forum @tiptopjohn

Your current wobbles are completely understandable, but you are right to be encouraged by the experiences of other members. Diabetes is potentially serious, but it is also something that can usually be well managed, and it shouldn’t stop you from doing whatever you want - it’s just that some things might need a bit of extra prep and some lateral thinking 🙂