Diagnosed 3 days ago

[Riley19]

Hi. I'm 35 and was diagnosed with type 1 just a few days ago. I'd been having a constant sweet taste in my mouth for 3-4 months. Spoke to the dr, got a blood test and then the next day got a call to say yep, you've got diabetes and then I'm on my way to the hospital to see diabetes nurse and told I'm starting on insulin. All very quick! And the gutting news that I have to put baby making plans on hold. Just sucks.

Otherwise I was doing ok, stunned but just trying to learn about it and reassuring myself I'd learn to manage it. Then last night as me and my partner were making tea and we'd made a starter and I didn't know when I was meant to take my shot (before starter or main meal) and well, I had a meltdown over an avocado salad. 🙂

I think part of me was in denial and was thinking oh I'll only be doing this for a week and then I'll be sorted and then it hits me that this is everyday now for life. And I'm questioning everything. Am I timing everything right? Can I have snack? What can I have? Can I go for a run? A bath? I didn't realise how much affected your glucose/insulin levels, carb counting is just confusing me right now and hypos sound really scary... I know this is just the newness of it all and from reading other posts, I'll learn and it'll become second nature but just feeling a bit sad about it today.

And then there's telling my family. I'll know they'll be supportive but they'll also be sad for me and worried. And then I'll feel bad for having it (illogical but my brain is stupid) and worried for them. I'm already the family member whose identity is linked with health issues (under active thyroid and a sight condition called keratoconus) and this is just one more thing.

Anyway, just needed to vent today. Thanks. 🙂

 

[SB2015]

Welcome to the forum @Riley19 , from an even later starter with T1. At whatever age it is a shock and takes a bit of getting used to. The best analogy I was given is that it is like learning to drive. It all seems complicated and a lot to think about at the start but then gradually becomes more automatic. This is a good place to vent as we ‘get it’.

To answer some of your questions.

In general it is good to inject your meal insulin (Bolus) before you start to eat. The insulin takes a bit of time to get going (it needs to get from the injection site into your blood) so will then be active as the carbs turn into glucose.

You can eat what you want and just need to know the carbs in what you choose. This seems a hassle at first but you will be amazed at how knowledgeable you become. When I was still working I became very familiar with the carb content of the more common biscuits offered at meetings.

Enjoy a soak in the bath. If you are worried about hypos test before you get in. I find a book and cuppa go well with that or a G&T.

You can go for a run. It will impact your glucose levels and depending on the intensity of you ur activity it can send the levels up or down. It is , like so many things to do with Diabetes, a case of trial and improvement. I have recently switched to some new tech for managing my levels. I have gone back to keeping records of the strategies I use so that I can see patterns. I was nervous of swimming when first diagnosed as like you I was worried about hypos. I went with a friend, monitored and found out what happens.

This will not need to stop you diong anything. Things just take a bit of planning and organising. It will become part of your new ‘normal’ life.

Glad that you have found the forum. If you have any questions just ask. Nothing is considered silly on here, and I have learnt so much from the others on here.

 

[SB2015]

Ps. There is nothing you have done that has caused this at all. There are just a bunch of antibodies that you have that have taken on the destruction of your beta cells in your pancreas. At diagnosis you will have then lost enough beta cells that your body can no longer cope with processing the glucose. Now we have to be our own pancreas.

Some of books you might find useful to look at are
- Think Like a Pancreas. Gary Sheiner
- Type 1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas
(Ignore the age reference. I was 53. Just miss out the chapter on starting school!)

 

[Riley19]

Thanks both for the reassurance and advice. The driving analogy is good. I saw the Ragnar book mentioned before and will be getting that. Having a curious mind is kinda helping a bit as I'm finding it fascinating learning how the body works etc. Getting my learning geek on as my partner says. Just got to balance so it's not information overload! Got a call with the nurse and dietician tomorrow which I think will help and this site has been really useful.

Thanks again. 🙂

 

[trophywench]

Tee Hee! Gives us an ideal opportunity to be nosey mares legitimately! WELCOME TO THE CLUB THAT NO-ONE EVER WANTED TO JOIN!

This trait has GENUINELY been of much use to me both in my working and private lives even though my mama discouraged it (as do most sensible mamas) from an early age. She always said I could repeat what it said on the back of a cornflake packet as easily as 'I wandered lonely as a cloud ....' etc. (So what Mom? Spent more time with the cornflake packet in front of my face regularly every morning than I did the works of Longfellow etc, didn't I?) Trouble was in 1972, there was not very much info available for a normal person to read and of course I tried the local library but they were medical books and I didn't even own a dictionary let alone a medical dictionary and we'd bought a house 17 miles away from my parents as newly weds the year before.

My sincere advice to you right now is to ask ask ASK - because right here, between us we have literally HUNDREDS of years experience of living with diabetes and negotiating the NHS and bits of technology that helps alongside our unexpected lifelong companion.

Meltdown moments such as you describe do honestly get less - but it simply takes time - and so will your body & brain. Important thing to me is that you've revealed that you've kept your sense of humour about the meltdown - best way to deal with em both right now and after nearly 50 years - advice to all other halves is never underestimate the worth of your silence and a blooming big hug at such times - they're worth their weight in gold! Never be reticent about typing a query on here whether it's clinical like odd BG readings - or when you're 'just wondering if I do this instead of that, what could happen - and would that matter? - if so, why?' - because someone somewhere will instantly 'get' what you're on about and reply. Anytime, day or night, Bank Holidays and weekdays, this forum is open unless there's a planned software update in which case we'll have been told about it.

Good luck with it matey!

 

[Flower]

Hi @Riley19 and welcome, glad you've found us - sorry you needed to.

Diagnosis is a big shock and you have to hit the ground running, there's not an option to get used to the idea or have a dry run but as already said things do improve and a lot of things just become part of the new normal.

It is amazing to think that the pancreas works away unnoticed sorting out glucose levels and maintaining equilibrium then all of a sudden it's over to you with insulin pens, a glucose meter & a carb counting book to join up the missing pieces and re-establish balance. The pieces of the puzzle will start to fall into place. It is normal to feel sad and sometimes find diagnosis overwhelming, it is a big change but improvements in technology have made management so much better and access to instant glucose data readily available. There are some excellent education courses that you can be referred to by your clinic such as Dafne - I think they have started an online version of this course- it covers adjusting insulin for normal eating and a lot more besides. Things are disrupted at present but courses do exist when the Covid situation allows.

I often eat similar meals on a rotation so I know how many carbs are going to be in that meal and how much insulin to bolus for those carbs. This method does remove some of the unknown although it doesn't necessarily mean I get the same glucose results because other things can affect the results. I find it useful to have a list of meals I know the info for.

Don't feel bad for the diagnosis, it's an auto immune condition that you couldn't have prevented. I hope your appointments go well and welcome to the forum. 🙂

 

[EllsBells]

Hi. I'm 35 and was diagnosed with type 1 just a few days ago. I'd been having a constant sweet taste in my mouth for 3-4 months. Spoke to the dr, got a blood test and then the next day got a call to say yep, you've got diabetes and then I'm on my way to the hospital to see diabetes nurse and told I'm starting on insulin. All very quick! And the gutting news that I have to put baby making plans on hold. Just sucks.

Otherwise I was doing ok, stunned but just trying to learn about it and reassuring myself I'd learn to manage it. Then last night as me and my partner were making tea and we'd made a starter and I didn't know when I was meant to take my shot (before starter or main meal) and well, I had a meltdown over an avocado salad. 🙂

I think part of me was in denial and was thinking oh I'll only be doing this for a week and then I'll be sorted and then it hits me that this is everyday now for life. And I'm questioning everything. Am I timing everything right? Can I have snack? What can I have? Can I go for a run? A bath? I didn't realise how much affected your glucose/insulin levels, carb counting is just confusing me right now and hypos sound really scary... I know this is just the newness of it all and from reading other posts, I'll learn and it'll become second nature but just feeling a bit sad about it today.

And then there's telling my family. I'll know they'll be supportive but they'll also be sad for me and worried. And then I'll feel bad for having it (illogical but my brain is stupid) and worried for them. I'm already the family member whose identity is linked with health issues (under active thyroid and a sight condition called keratoconus) and this is just one more thing.

Anyway, just needed to vent today. Thanks. 🙂

Sorry to hear about your diagnosis but lots of support on here. Also yay - a kerataconus buddy!

 

[Riley19]

Thanks @trophywench and @Flower for the messages. My partner is brilliant with the hugs!
And yay indeed @EllsBells, never met someone who knew what kerataconus was before. Makes a nice change. 🙂

 

[EllsBells]

Thanks @trophywench and @Flower for the messages. My partner is brilliant with the hugs!
And yay indeed @EllsBells, never met someone who knew what kerataconus was before. Makes a nice change. 🙂

Got it in my left eye. It runs through my dad's family - some inheritance, huh?

 

[EllsBells]

Got it in my left eye. It runs through my dad's family - some inheritance, huh?

Made my retinopathy exam fun.

Me: Hi I've got kerataconus in my left eye.
Him: that's fine. We'll start with left eye. Can you read third line from the bottom?
Me: No
Him: Ok, try it without the glasses. So now can you read from the top line down?
Me: No
Him: What - none of it?
Me: No
Him: *sigh* Ok, I can see you're going to be awkward. Put your glasses back on and read from the top.
Me: I did say this was my bad eye...

 

[Riley19]

Made my retinopathy exam fun.

Me: Hi I've got kerataconus in my left eye.
Him: that's fine. We'll start with left eye. Can you read third line from the bottom?
Me: No
Him: Ok, try it without the glasses. So now can you read from the top line down?
Me: No
Him: What - none of it?
Me: No
Him: *sigh* Ok, I can see you're going to be awkward. Put your glasses back on and read from the top.
Me: I did say this was my bad eye...

Ha! I was wondering if it would make that exam interesting. I've got it in both eyes but my left is the worst and I'm first in my family to have it. Same with diabetes (as far as I know). My body just keeps on giving! Do you wear contacts or just glasses?

 

[EllsBells]

Ha! I was wondering if it would make that exam interesting. I've got it in both eyes but my left is the worst and I'm first in my family to have it. Same with diabetes (as far as I know). My body just keeps on giving! Do you wear contacts or just glasses?

After that initial hiccough, it was all fine and straightforward. Both - poor you. Glasses all the way. Used to have gas permeables but lost a brand new pair before even got to wear them so called it a day. That was expensive. Can't do that so easily with specs!

 

[EllsBells]

Ha! I was wondering if it would make that exam interesting. I've got it in both eyes but my left is the worst and I'm first in my family to have it. Same with diabetes (as far as I know). My body just keeps on giving! Do you wear contacts or just glasses?

Have you considered surgery? There are more options now than when my kerataconus was most active. I think I'm past the point where surgery could be useful.

 

[Riley19]

Have you considered surgery? There are more options now than when my kerataconus was most active. I think I'm past the point where surgery could be useful.

I had corneal cross linking done on my right eye which stops it progressing. Transplant did get mentioned for my left eye a while back but since I'm managing with my lenses I'm happy to stick with them. Surgery possibly too squeamish for me! I had to get over sticking my finger in my eye pretty damn quick when learning how to put the contacts in but not sure I could manage the thought or aftercare of eye surgery.

I've got the gas permeable ones too and totally relate to the dropping/losing them! I was grateful in the early days when my Mum was so good at finding my dropped ones. 🙂

 

[EllsBells]

I had corneal cross linking done on my right eye which stops it progressing. Transplant did get mentioned for my left eye a while back but since I'm managing with my lenses I'm happy to stick with them. Surgery possibly too squeamish for me! I had to get over sticking my finger in my eye pretty damn quick when learning how to put the contacts in but not sure I could manage the thought or aftercare of eye surgery.

I've got the gas permeable ones too and totally relate to the dropping/losing them! I was grateful in the early days when my Mum was so good at finding my dropped ones. 🙂

Three of my mates have had eye surgery for varying issues and the light auras and other symptoms are what we get anyway! Agree about poking round eyes - never got the hang of removing contacts - had to use a mini sink plunger to get it!