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Newly diagnosed and totally overwhelmed

Marikev said:
« I know children deal with this etc but I'm just struggling. Anyway, that's it. If anyone has words of encouragement that would be nice :)»
Sending many words of encouragement - was diagnosed at 68, while still teaching. You will get through this and in a couple of years time will look back and see how far you have come.
Have since retired, but still getting used to not having a set routine. Having to get up and show up and teach every day gave a shape to my then new type 1 routine. The principle offered to sign me off for a couple of weeks, but I needed to learn how to manage the condition for work. I only once had to go home early, when I had a yo-yo sugar day!
I couldn’t believe I had ended up with type 1 and asked a doctor in the emergency room if I would lose some more weight, eat more sensibly and take a bit more exercise I could quit the insulin. She deliberated a while and said «No!». A fortnight later I got a phone call from a professor at the hospital confirming what I had then worked out for myself that this was type 1.
By chance I had a holiday booked with my then 14 year old grandson , touring northern Europe, mainly by train, starting just a fortnight after diagnosis. I think otherwise I might have sat home, it was school holidays so I wasn’t working, overthinking my new situation.
I shudder now to think of the situations I ‘got away with’ on that holiday. I had a glucometer and two sorts of insulin and had received three renditions of what was obviously a standard warning from hospital staff about drinking alcohol, or rather not drinking alcohol. It was some months before I ‘dared’ to risk a drink of any kind, but fortunate that holiday was with underage grandson. So wine with meals and a bar in the evenings were not elements of that holiday.
Afternoon naps and regular meal times were!
I remember the realisation that spontaneity was being removed from my life. I am currently trying to get into the routine of a daily walk, for a while my DH insisted I kept to the roadways, rather than footpaths. But with a CGM and jelly babies, I am back trekking footpaths.
Make use of the tech and be kind to yourself. The DAFNE course will teach you some practical stuff and also give you a chance to meet others with the condition.
best wishes
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Thank you so much for your reply. I had a holiday booked for Brazil at the end of February but I am not comfortable travelling so far at this early stage with this condition, especially to a place where I don't speak the language so I'm losing money on that as well so feeling fairly down about life in general and what this diagnosis means to my future. I think meeting other people with this condition will be helpful although goodness knows when I will get on a DAFNE course - hopefully sooner rather than later. I am sad that spontaneity has now gone for my life as well as pleasure in food. Sorry to be a downer - I know it's early days and I am grateful that I am still here and can walk and talk and I actually feel very well in myself (no wonder - god knows how long I had this brewing inside me but things are starting to make sense - I was a smoker and in menopause so put everything down to that but clearly it was the diabetes). Thanks again for your kind reply.x
 
Sorry you have to cancel your holiday, can you not claim on holiday insurance? I kept asking the medics if I could go on my holiday so soon after diagnosis, and they kept just saying yes, yes, until one day one of the doctors thought to ask where I was going… pretty sure if it had been somewhere with a hot climate they might have advised against it. In the event that summer Northern Europe had a bit of a heatwave, with temperatures nudging 40C.
My first flight with all my diabetes equipment went fine, but in security for the second one, from Stansted to Denmark, a supervisor decided to check and swab every item in my little bag of insulin pens and glucometer. But travelling since it seems that security staff seem to be getting more aware of diabetes equipment. Or maybe it’s just me being more non chap ant about the whole thing.
 
lizcoop said:
Hello - I am 55 and was rushed to hospital the week before last with DKA. I was told I now have type 1 as a result of a virus and to say my world has been turned upside down is an understatement. I feel terribly depressed and like I am at the foot of a mountain I just don't want to climb. I know it will get easier and I am managing to inject myself with the basal and bolus doses and eating a very low carb diet to keep my BG in range (it's at 90 percent in range atm so proud of that) but it's knowing that once my 'honeymoon period' ends that will all change again feels so challenging to deal with and although I feel great at the moment, knowing I will probably feel rubbish again because of this again makes me feel so down. I know children deal with this etc but I'm just struggling. Anyway, that's it. If anyone has words of encouragement that would be nice :)
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Hello 'lizcoop'. I'm new here on the forum but my attention was immediately drawn to your post here. I'm from Belgium by the way so I want to apologize in advance for my English which is not always correct but I promise to do my very best. Your story is so recognizable to me. I was diagnosed with T1D on the 26th of November 2023 at the age of 61. In early November that year I went to the family doctor with the following problems: I had an incredible dry mouth, my sight was blurry an I lost in one month time more than 10 kg. The doctor did nothing else than sending me to an ophthalmologist but the ophthalmologist didn't see any problems besides a small adjustment. During that time I was not wearing any glasses except for reading (+2). Than I went to the optical and here they sold me glasses for the spicy amount of 1600euro. So three weeks later around midnight I became so nauseous that I called the ambulance myself. I don't remember much what happened after arriving in the hospital but when I woke up the doctor told me that I had T1D. So that for the introduction. For that time, I couldn't believe myself that my sight would come back but it did after more or less 1.5 month after diagnosis. So those expensive glasses were for the trash by the way. So I recognize also the horrible feeling you describe. I didn't know much about T1D but it felt that I had to climb the Alps just like you. And yes, I also know that there are much worse diseases but nevertheless your world is turned upside down and you suddenly become slowly aware that it will be there for every minute for the rest of your life. When I'm reading your story I suppose that you have already a sensor? I received a sensor only seven months after diagnosis and this did change a lot for me. I now also have a time in range between 80 and 90 % most of the time. I still am struggling with some kind of foods like pasta for example but I'm learning everyday. Now the last week I got the flu (for the first time since diagnosis) and this is again a new experience in not getting your glucose in a normal range very easily. So I just wanted to tell a bit of my story to encourage you that in the end you will get there but there will always be moments that you will struggle but during the last year I also learned that it can't be perfect the whole time and that is something we all have to accept I'm afraid. Here on the forum the member 'Himtoo' mentioned the book 'Think like a pancreas' which I just started reading because it seemed indeed very interesting to me. You also can look for the book 'Sugarsurfing' which has been also very helpful for me. I normally have to read these books twice because they are in English (lol) but you're lucky that your mother tongue is English. So dear 'lizcoop' there will be light at the end of the tunnel but the light will flicker from time to time and that we must learn to accept but you will get there! Keep up the courage in it. With love from Belgium.
 
Hello @lizcoop, and welcome to a group many of us wish we weren’t a part of even though we’d miss connecting with the lovely people here.
Reading about your planned trip to Brazil, I wonder if you could ask to change the dates of your booking? If you went at the already-planned time, the big wide internet tells you’d be there in the rainy season anyway, so a change of dates could be a double plus?
It’s true that being diagnosed with Type One is life-changing. I’ve had it for 55 years and still look back at those distant days when I could decide to do something spontaneously without thinking about whether I had the insulins I needed, jelly babies, test kit, etc etc with me. And those long distant days when I could eat anything I wanted without carb counting. But I realise it’s like seeing films when they first came out, with now-wrinkled stars in the prime of their youth.
In this Type One world you’re doing really well. DKA was a very nasty welcome to it, but you’re getting it smashed now.
You’ll get back to being able to travel anywhere, you’ll discover how to make friends with cafe and restaurants that have fridges they’ll let you put insulin in (did that a few summers ago), you’ll find the best ways to keep jelly babies from melting into a fused lump (can’t know the carb when using teeth to tear a bit off) and you’ll still be you.
 
Fairygodmother said:
Hello @lizcoop, and welcome to a group many of us wish we weren’t a part of even though we’d miss connecting with the lovely people here.
Reading about your planned trip to Brazil, I wonder if you could ask to change the dates of your booking? If you went at the already-planned time, the big wide internet tells you’d be there in the rainy season anyway, so a change of dates could be a double plus?
It’s true that being diagnosed with Type One is life-changing. I’ve had it for 55 years and still look back at those distant days when I could decide to do something spontaneously without thinking about whether I had the insulins I needed, jelly babies, test kit, etc etc with me. And those long distant days when I could eat anything I wanted without carb counting. But I realise it’s like seeing films when they first came out, with now-wrinkled stars in the prime of their youth.
In this Type One world you’re doing really well. DKA was a very nasty welcome to it, but you’re getting it smashed now.
You’ll get back to being able to travel anywhere, you’ll discover how to make friends with cafe and restaurants that have fridges they’ll let you put insulin in (did that a few summers ago), you’ll find the best ways to keep jelly babies from melting into a fused lump (can’t know the carb when using teeth to tear a bit off) and you’ll still be you.
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Thank you very much for your kind reply. I've written off Brazil - maybe one day but right now I feel like I have to focus all my energy on this rotten disease. Mentally I am not coping with it and feel pathetic - I'm a middle-aged, menopausal woman - for heaven's sake - get a grip. And yet..the thought of living like this for however long I have left just feels ghastly.. I think once I have done a DAFNe course and experimented with foods etc and bolus dosing I'll feel better about it. Right now I'm just fairly rigidly low-carbing and that's kept me in range at 100% this week so pleased about that but it's not sustainable to live like that as I want to have chocolate and crisps at some point. It sort of feels like all the joy has been sucked out of my world and I don't even know how this happened. Anyway, as I say, must get a grip and allow myself to have meltdowns from time to time. I'm just scared of the future - reading about neuropathy and liperhypotrophy and retina damage etc etc isn't letting me have a positive outlook. I know if I manage my BG then those things hopefully won't be an issue but still. Anyway, thank you again for being so kind to reach out to me.
 
I reckon you’re very very unlikely to get any complications, you’re keeping too tight a control of your blood sugars for that.
Yes, the Dafne course will allow you to have a more flexible approach to eating and dosing, and crisps and chocolate will probably reappear for you. Also, the longer you live with this Type One thing, the more you’ll get to know how your own body responds.
I think you’re giving yourself an extra burden when you tell yourself to get a grip. There’s no shame in breaking down, having a good rant and weep, most of us have done one or both at some time. I have a barrel load of expletives to explode if I make a mistake, blood sugars are unexpected or a friend serves sugar-rich food and looks pained when I can’t eat it immediately. Take it from me, expletives can help.
Maybe your surgery can give you something to help with menopausal symptoms? Double whammy getting both together.
And one day you WILL get to Brazil.
 
PS, I don’t let the expletives fly if a friend’s been kind enough to cook, I merely quietly say, again, that I have to be guided by current blood sugars and the time between injecting and insulin becoming active.
 
hah - yes, i love nightime the best when the hot flushes come and then I'm freezing a few minutes later - such joy! thank you for your understanding. I was always the person who was on the end of other people's rants and now I'm that person - should just embrace it and thank you for not making me feel like an idiot. I know I am lucky compared to those who can't walk etc and this disease is something I will learn to live with.
 
If it's not been mentioned so far. Hydration, exercise and a sensor are key. You can lead almost a normal life. I'm a postman who works full time. Walks on average 8 miles a day. I also don't eat that differently to what i did before diabetes. I'm just over 3 years in. YouTube is a great source of information. If you use a freestyle libre 2 or 2+ with an android phone and watch. Check out Juggluco it's a great app. Good luck you'll find your way. After all type one diabetes is just a big experiment if you want to stay healthy.
 
Just like to welcome you. Take one day at a time. And your get there.
 
@Fairygodmother and other members

Dear Fairygodmother, can you please explain to me what's a 'Dafne'course. Is this typically something for British people?
Thank you very much in advance.
 
EmmaZilver said:
@Fairygodmother and other members

Dear Fairygodmother, can you please explain to me what's a 'Dafne'course. Is this typically something for British people?
Thank you very much in advance.
Click to expand...
Hei Emma, the DAFNE course is something run by the Health Service in the UK to inform people with Type 1 diabetes about the condition and how to manage carbohydrates intake. There is a parallel one for people with Type 2 I understand.

I am a Brit living in Norway, diagnosed here and went on a similar course here. It was not just newly diagnosed on the course. I wonder if you have a diabetic nurse at your doctors surgery who can advise you if there is a Belgian equivalent. Alternatively lots of videos on YouTube about Type 1.
 
@Marikev

Thank you very much for explaining this to me. In Belgium we have indeed a diabetes instructor in the hospital and a dietitian but the time of the visits is very limited because they have a lot of patients to see of course. It's not a real course and you don't meet people with the same problems that you are cooping with. For the time being I'm doing okay but I miss a bit of practical advice and I know that a lot of things are very personal because there is no diabetic I suppose who reacts on certain foods, treatments, etc. the same. Nevertheless would It be nice to talk to people who understand and undergo this disease because I experience that from the moment on that you're telling to a non-diabetic about carbcounting you are loosing them right away. Most given answer is 'pfff....too diffult for me'. So the book 'Sugarsurfing' was very helpful for me and now I'm reading the book 'Think like a pancreas' but because those books are in English I need a bit more time ;). So this forum seems very helpful to me and indeed already many thanks for the replies of the members here and the lovely emoticons:).
 
Hi @EmmaZilver this might help for you in understanding a bit more about your diabetes. this is an online diabetes type 1 education course.
it is run by the Royal Bournemouth Hospital Trust here in the UK.

https://bertiediabetes.com/

and Hi :) welcome to the forum !!
 
EmmaZilver said:
Hello 'lizcoop'. I'm new here on the forum but my attention was immediately drawn to your post here. I'm from Belgium by the way so I want to apologize in advance for my English which is not always correct but I promise to do my very best. Your story is so recognizable to me. I was diagnosed with T1D on the 26th of November 2023 at the age of 61. In early November that year I went to the family doctor with the following problems: I had an incredible dry mouth, my sight was blurry an I lost in one month time more than 10 kg. The doctor did nothing else than sending me to an ophthalmologist but the ophthalmologist didn't see any problems besides a small adjustment. During that time I was not wearing any glasses except for reading (+2). Than I went to the optical and here they sold me glasses for the spicy amount of 1600euro. So three weeks later around midnight I became so nauseous that I called the ambulance myself. I don't remember much what happened after arriving in the hospital but when I woke up the doctor told me that I had T1D. So that for the introduction. For that time, I couldn't believe myself that my sight would come back but it did after more or less 1.5 month after diagnosis. So those expensive glasses were for the trash by the way. So I recognize also the horrible feeling you describe. I didn't know much about T1D but it felt that I had to climb the Alps just like you. And yes, I also know that there are much worse diseases but nevertheless your world is turned upside down and you suddenly become slowly aware that it will be there for every minute for the rest of your life. When I'm reading your story I suppose that you have already a sensor? I received a sensor only seven months after diagnosis and this did change a lot for me. I now also have a time in range between 80 and 90 % most of the time. I still am struggling with some kind of foods like pasta for example but I'm learning everyday. Now the last week I got the flu (for the first time since diagnosis) and this is again a new experience in not getting your glucose in a normal range very easily. So I just wanted to tell a bit of my story to encourage you that in the end you will get there but there will always be moments that you will struggle but during the last year I also learned that it can't be perfect the whole time and that is something we all have to accept I'm afraid. Here on the forum the member 'Himtoo' mentioned the book 'Think like a pancreas' which I just started reading because it seemed indeed very interesting to me. You also can look for the book 'Sugarsurfing' which has been also very helpful for me. I normally have to read these books twice because they are in English (lol) but you're lucky that your mother tongue is English. So dear 'lizcoop' there will be light at the end of the tunnel but the light will flicker from time to time and that we must learn to accept but you will get there! Keep up the courage in it. With love from Belgium.
Click to expand...
Thank you so very much for your kind reply and so sorry I have taken to long to post my response. It is very comforting to hear of others with a late diagnosis and that they know how I feel. Mentally I am in a better place and am trying to do my best, ie eat low carb, do more exercise and come to terms with my new 'normal'. I am scared of getting the flu or sick in any way as not sure how I will deal with my sugars being all over the place and I am still in the honeymoon phase and scared of what things will be like after that. On the plus side I am feeling better than I have in years, given up smoking etc and it's nice to be able to run upstairs without getting out of breath etc. I am reading 'Think like a pancreas' at the moment which is helpful. Thank you so much again.
 
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