Newly diagnosed type 1

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Davidcox16

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Relationship to Diabetes
Type 1
Hello
Recently released from hospital after being admitted due to being unwell. Totally overwhelmed by type 1 diagnosis (still to be confirmed)taking Trurapi and Absagalar blood sugar is still high and my vision is very blurry...due back to work on Monday...this is all a bit of a whirlwind and I have to wait until 25 March for my first appointment with a diabetes nurse...I honestly feel so scared..I've changed my diet...I'm trying to do all the right things..its just so scary..as a very sociable person I feel like enjoying my life has now ended...any views on this will be welcomed...its quite lonely at the minute...
 
Welcome @Davidcox16 🙂 It’s completely normal to be scared, upset and even angry. A Type 1 diagnosis is a massive shock. We all remember what it was like. The good news is that it does get easier and after a while the Type 1 will recede more into the background.

A few things:

- the blurry vision is normal. It will gradually settle over the next few weeks. Don’t get new glasses. Buy cheap reading glasses if you need them.

- once your insulin is sorted, you’ll be able to eat a normal diet pretty much. The recommended diet for Type 1s is the same healthy diet recommended for everyone. Type 1 is nothing to do with bad diet or anything. It’s an auto-immune condition. ‘All’ we have to do is provide appropriate amouts of external insulin and then we can eat pretty normally, including pasta, potatoes, bread, fruit crumble, etc etc etc.

- I’d see if you can get a bit longer off work so you can get used to your insulin and get more sorted. Your body also needs a chance to recover.
 
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To reassure you about social events, you can still do everything, you’ll just have to think more and do a bit more planning. You’ll be able to eat out, travel, play sports, swim, go to the pub, have brunch out, have lunch out, etc etc. As you get used to ‘being your own pancreas’ you’ll learn to fit your diabetes round your life.

Remember - people with Type 1 have been Prime Ministers, sportspeople, explorers (one went to the S Pole), pop stars (Nick Jonas), rock stars - all kinds of things 🙂
 
Thank you so much Inka for taking time to reply...what you have said has made me feel more hopeful and reassured..its just so much to take in...I keep googling things and you get so much conflicting information...have a great weekend
 
Inka said:
To reassure you about social events, you can still do everything, you’ll just have to think more and do a bit more planning. You’ll be able to eat out, travel, play sports, swim, go to the pub, have brunch out, have lunch out, etc etc. As you get used to ‘being your own pancreas’ you’ll learn to fit your diabetes round your life.

Remember - people with Type 1 have been Prime Ministers, sportspeople, explorers (one went to the S Pole), pop stars (Nick Jonas), rock stars - all kinds of things 🙂
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Bless you...what you have said has really given me hope and made me much more positive...just what I needed..thank you so much
 
It does get easier
 
Davidcox16 said:
Thank you so much Inka for taking time to reply...what you have said has made me feel more hopeful and reassured..its just so much to take in...I keep googling things and you get so much conflicting information...have a great weekend
Click to expand...
Welcome to to “The Club”.
I second everything @Inka has said. The diagnosis is a huge step to get over but once you get the hang of the insulin, it shouldn’t stop you doing what you want … unless, you want to be an astronaut or deep sea diver.
Google could be your friend to learn but Dr Google often forgets to distinguish between Type 1 and, the most common type of diabetes, type 2. And other types. What this means is that most advice such as diet is aimed at people with type 2 and pretty irrelevant to those of us with a completely different autoimmune condition.
This forum is great. Feel free to ask questions (we have, probably, hundreds of years of combined experience or just have a rant. We have all been there.

There are a lot of tips but I think the biggest ones are
- don’t expect to learn everything at once. If you are the type of person who keeps learning, there will always be something new to learn.
- we are all different. Other people’s experiences are very useful but, for example, the right amount of insulin for you, is the right amount for you regardless of how much someone else takes and the right amount of time/effort spent managing diabetes is the balance that works best for you.
- be very very wary of any life expectancy metrics you read. These are based on historic data and treatment for Type 1 has improved hugely in recent years. I recently read about someone who just celebrated her 70th diaversary.
- never expect perfection. There are many many things that can affect our blood sugars that even if we ate exactly the same thing every day, did exactly the same exercise every day and lived in a protective bubble, our blood glucose would be different every day. Plus our quality of life would be pants.

Ok, I have waffles enough. As I said before, feel free to ask questions.
 
Hi and welcome from me too, another late starter at this Type 1 lark! I am 5 years down the line with it now and the analogy of learning to drive a car is often used here and quite appropriate. The first time you get in a car and take the controls, it is pretty scary. There are so many things to think about and do and in a set order and you have to think about every single part of it like adjusting the seat and mirrors, checking it is out of gear before you start it. Depressing the clutch and selecting first gear, checking the mirrors for traffic and pedestrians, indicating and then slowly finding the bite point on the clutch and gently depressing the accelerator to drive off as smoothly as you can. There is lots and lots to think about with diabetes too and getting things smooth takes time and experience but gradually you start to do a lot of it on auto pilot, just like driving the car and you just have to pay attention to to out of the ordinary stuff, but always keep alert of course. There are many times when I can't actually remember if I injected my insulin, even though it was only a few minutes ago, because it is so routine and automatic. Not saying it doesn't have it's tricky moments and just like driving we make mistakes from time to time and of course some of them can be pretty serious but mostly they are minor errors and we learn from them and gradually make less and learn how to negotiate the tricky bits.

The most important thing to know is that you will make mistakes and you will never get perfect results no matter how hard you try, so learning that good enough is good enough is key and finding balance between managing your diabetes and enjoying your life is the secret and accepting that despite your best intentions and efforts things will go awry from time to time and you need to be prepared with what to do in those situations to keep yourself safe. We have amazing technology to help us these days and it is constantly being developed further to give us more support. Life just needs a bit more thought and planning but it still goes on, just the same.

I would agree that you ideally need a bit more time off work to get to grips with things. I don't know what sort of job you have but you may struggle to keep your mind on work and learn the basics you need to know about insulin usage and your levels will likely be high for a while until they hopefully slowly increase your doses to bring them down gently into range. High BG makes you feel tired and it's hard to focus. Your body may well also have a lot of recovering to do as the weeks prior to diagnosis take a lot out of your body. If you drive, that is another consideration as you need to inform DVLA and go onto a 3 year restricted licence and learn the DVLA guidelines for driving for people using insulin and have your levels stable enough that you feel confident to do so. If you drive commercially then there may be additional requirements like keeping a log of your BG readings for 2 months I think, before you can do so..... so lots to get your head around..... but it is all still doable.
 
rebrascora said:
I would agree that you ideally need a bit more time off work to get to grips with things.
Click to expand...
This is one of those things where we are all different.
I think we know ourselves if we need longer to adjust to normality before returning to work or whether delaying the return to work is delaying the return to normality.
I am definitely in the latter category. I am lucky that my job is not physical but it is definitely not stress free. When I was diagnosed, I was organising our company’s first ever customer event. I could delegate but it felt to me like a failure to do so. I probably got a little extra help but it was an event I didn’t want to avoid. And it was important to prove to myself that diabetes was not going to stop me,
But then, I am stubborn that way,
 
Thank you
Tdm said:
It does get easier
Click to expand...

helli said:
Welcome to to “The Club”.
I second everything @Inka has said. The diagnosis is a huge step to get over but once you get the hang of the insulin, it shouldn’t stop you doing what you want … unless, you want to be an astronaut or deep sea diver.
Google could be your friend to learn but Dr Google often forgets to distinguish between Type 1 and, the most common type of diabetes, type 2. And other types. What this means is that most advice such as diet is aimed at people with type 2 and pretty irrelevant to those of us with a completely different autoimmune condition.
This forum is great. Feel free to ask questions (we have, probably, hundreds of years of combined experience or just have a rant. We have all been there.

There are a lot of tips but I think the biggest ones are
- don’t expect to learn everything at once. If you are the type of person who keeps learning, there will always be something new to learn.
- we are all different. Other people’s experiences are very useful but, for example, the right amount of insulin for you, is the right amount for you regardless of how much someone else takes and the right amount of time/effort spent managing diabetes is the balance that works best for you.
- be very very wary of any life expectancy metrics you read. These are based on historic data and treatment for Type 1 has improved hugely in recent years. I recently read about someone who just celebrated her 70th diaversary.
- never expect perfection. There are many many things that can affect our blood sugars that even if we ate exactly the same thing every day, did exactly the same exercise every day and lived in a protective bubble, our blood glucose would be different every day. Plus our quality of life would be pants.

Ok, I have waffles enough. As I said before, feel free to ask questions.
Click to expand...
Thank you so much for taking the time to reply..it means a lot to me...its early days and I will get there..thank you
 
rebrascora said:
Hi and welcome from me too, another late starter at this Type 1 lark! I am 5 years down the line with it now and the analogy of learning to drive a car is often used here and quite appropriate. The first time you get in a car and take the controls, it is pretty scary. There are so many things to think about and do and in a set order and you have to think about every single part of it like adjusting the seat and mirrors, checking it is out of gear before you start it. Depressing the clutch and selecting first gear, checking the mirrors for traffic and pedestrians, indicating and then slowly finding the bite point on the clutch and gently depressing the accelerator to drive off as smoothly as you can. There is lots and lots to think about with diabetes too and getting things smooth takes time and experience but gradually you start to do a lot of it on auto pilot, just like driving the car and you just have to pay attention to to out of the ordinary stuff, but always keep alert of course. There are many times when I can't actually remember if I injected my insulin, even though it was only a few minutes ago, because it is so routine and automatic. Not saying it doesn't have it's tricky moments and just like driving we make mistakes from time to time and of course some of them can be pretty serious but mostly they are minor errors and we learn from them and gradually make less and learn how to negotiate the tricky bits.

The most important thing to know is that you will make mistakes and you will never get perfect results no matter how hard you try, so learning that good enough is good enough is key and finding balance between managing your diabetes and enjoying your life is the secret and accepting that despite your best intentions and efforts things will go awry from time to time and you need to be prepared with what to do in those situations to keep yourself safe. We have amazing technology to help us these days and it is constantly being developed further to give us more support. Life just needs a bit more thought and planning but it still goes on, just the same.

I would agree that you ideally need a bit more time off work to get to grips with things. I don't know what sort of job you have but you may struggle to keep your mind on work and learn the basics you need to know about insulin usage and your levels will likely be high for a while until they hopefully slowly increase your doses to bring them down gently into range. High BG makes you feel tired and it's hard to focus. Your body may well also have a lot of recovering to do as the weeks prior to diagnosis take a lot out of your body. If you drive, that is another consideration as you need to inform DVLA and go onto a 3 year restricted licence and learn the DVLA guidelines for driving for people using insulin and have your levels stable enough that you feel confident to do so. If you drive commercially then there may be additional requirements like keeping a log of your BG readings for 2 months I think, before you can do so..... so lots to get your head around..... but it is all still doable.
Click to expand...
 
Thank you so much for your message..honestly you have all been great..I can't thank you enough..what you have said makes perfect sense and I feel a bit better in myself because of it...I'm not going to lie..its still scary..and my readings are still very high..but knowing I'm not alone means so much..so thank you..x
 
We all know how scary and isolating and overwhelming the diagnosis is and the first few months particularly are a huge learning curve but slowly but surely life will get back to normal. I think most of us, if not all, know how comforting and supportive it is just to compare notes with others who have been there and got the T-shirt and understand the challenges. The forum is a goldmine of experience and practical tips so do come as often as you need to and ask questions or just read other people's posts and feel free to have a rant if you need to or share a success you have had, no matter how trivial, because you do have to savour those diabetes triumphs. It goes wrong often enough, so when you get it right and you want to shout t from the treetops but those nearest and dearest don't really understand, we will be happy to hear all about it and celebrate with you. I can remember how happy I was to get my first single figure BG reading and then my first reading under 7 and I was ecstatic and thought I had it cracked! 🙄 I was kidding myself of course and there have been plenty of rogue readings since then, but gradually they get more consistently better and I have a good idea what I need to adjust to make them better now.
 
rebrascora said:
We all know how scary and isolating and overwhelming the diagnosis is and the first few months particularly are a huge learning curve but slowly but surely life will get back to normal. I think most of us, if not all, know how comforting and supportive it is just to compare notes with others who have been there and got the T-shirt and understand the challenges. The forum is a goldmine of experience and practical tips so do come as often as you need to and ask questions or just read other people's posts and feel free to have a rant if you need to or share a success you have had, no matter how trivial, because you do have to savour those diabetes triumphs. It goes wrong often enough, so when you get it right and you want to shout t from the treetops but those nearest and dearest don't really understand, we will be happy to hear all about it and celebrate with you. I can remember how happy I was to get my first single figure BG reading and then my first reading under 7 and I was ecstatic and thought I had it cracked! 🙄 I was kidding myself of course and there have been plenty of rogue readings since then, but gradually they get more consistently better and I have a good idea what I need to adjust to make them better now.
Click to expand...
Thank you so much
 
I came across a saying by the husband of Vita Sackville-West ' the secret of a successful marriage is to treat all disasters as incidents and none of the incidents as disasters' as it was in the RHS magazine it was in reference to gardening but I though it rather apt for management of diabetes.
 
rebrascora said:
We all know how scary and isolating and overwhelming the diagnosis is and the first few months particularly are a huge learning curve but slowly but surely life will get back to normal. I think most of us, if not all, know how comforting and supportive it is just to compare notes with others who have been there and got the T-shirt and understand the challenges. The forum is a goldmine of experience and practical tips so do come as often as you need to and ask questions or just read other people's posts and feel free to have a rant if you need to or share a success you have had, no matter how trivial, because you do have to savour those diabetes triumphs. It goes wrong often enough, so when you get it right and you want to shout t from the treetops but those nearest and dearest don't really understand, we will be happy to hear all about it and celebrate with you. I can remember how happy I was to get my first single figure BG reading and then my first reading under 7 and I was ecstatic and thought I had it cracked! 🙄 I was kidding myself of course and there have been plenty of rogue readings since then, but gradually they get more consistently better and I have a good idea what I need to adjust to make them better now.
Click to expand...
I can't thank you enough...I knew I wasn't alone...but to hear from others means so much..thank you...I can get through this..and your help makes it easier..so thank you..its much appreciated
 
Davidcox16 said:
I can't thank you enough...I knew I wasn't alone...but to hear from others means so much..thank you...I can get through this..and your help makes it easier..so thank you..its much appreciated
Click to expand...

That’s so great to hear @Davidcox16 - so pleased you have found us.

It took me over 15 years to finally get that sense of sharing experiences with people who ‘get it’, and that feeling of shared struggle.

Since then I’ve been a huge advocate of peer support - there really isn’t anything quite like it!
 
Davidcox16 said:
Hello
Recently released from hospital after being admitted due to being unwell. Totally overwhelmed by type 1 diagnosis (still to be confirmed)taking Trurapi and Absagalar blood sugar is still high and my vision is very blurry...due back to work on Monday...this is all a bit of a whirlwind and I have to wait until 25 March for my first appointment with a diabetes nurse...I honestly feel so scared..I've changed my diet...I'm trying to do all the right things..its just so scary..as a very sociable person I feel like enjoying my life has now ended...any views on this will be welcomed...its quite lonely at the minute...
Click to expand...
Hi @Davidcox16 from a fellow Newbie. I’m just 6 months in, now aged 57, and had all the same emotions as you mention. Not afraid to admit I shed a few tears at the sheer unfairness of it all and fear my life was over. Now, it’s just part of my life and I can do everything I ever did - it just takes a bit of extra prep when eating to count your carbs and match your insulin. None of us eats new meals every day so you’ll soon get used to what a “normal” meal requires in terms of insulin. Fear not - it’s a faff but it’s all completely manageable 🙂 !
 
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