Type 1: Newly diagnosed, any advice?

[Charlotte2580]

Hi everyone,
I'm a newly diagnosed Type 1. I'm 21 and was admitted to hospital 6 weeks ago. Finding it a big lifestyle change at the moment. I have 2 older brothers who are also type 1 so I've got some help there. Just wondering how others have found diagnosis when older? I'm still yet to go back to hospital since first admitted. Although I've got good knowledge about diabetes it's still a huge change. Any advice?
x

 

[Sean-W]

It's different for everyone but your right when you say it's a change. Things have to be much more observed and you'll probably discover things that might sound daunting at first but truth is all it takes is a little bit of research from you to understand the condition and it's meaning to you and guidance from health care professionals on how to control your medications and what to do in certain circumstances... hypos etc. Do the right things and you'll be fine.

 

[azure]

Hi @Charlotte2580

Sorry you've had to join the Type 1 club. But there are plenty of friendly Type 1s here for support and advice

My tips are to learn as much as you can about Type 1. Think Like A Pancreas is a very popular book here. You may already know about carb counting but if you don't push for some training - it's crucial for good control. My final tip is to be kind to yourself and understand that it can take a while to get your head round the diagnosis, but that it does get easier

 

[Juicyj]

Heya @Charlotte2580 Welcome to the forum

I always try to see the positives in everything and having type 1 for me means taking extra special care of me so I am less likely to fall ill with whatever bugs are flying around, so putting your health first and becoming an expert is the best way forward, yes there are ups and downs, typical with what life would generally throw at you, having the knowledge, wisdom and courage to be the best you can be in taking care of yourself is so important. The forum has lots of members from all walks/ages of life, speak to others and remember we are all here to help and support you

 

[Bic]

Dear Charlotte 2580,
I was diagnosed about your age (only, it was some 30 years ago) and as you have 2 brothers living with the same condition I'd like to add a specific piece of advice to the very sensible and clever ones given by other forum members. When I was diagnosed, my sister had been living with T1 for several years. What happened was this: both my GP and the HPs who cared for me took it for granted that my sister would teach me about a lot of things, so they didn't give me all the information I should have needed. I only discovered this later on and I lost some precious time. Probably things are different nowadays, but it may perhaps be useful to remind your HPs that you expect THEM to give you all the necessary information, and that no one else is going to step in and take up even a small part of their job. This is especially important because changes and advances in therapy and lifestyle recommendations are constantly taking place. Just be sure that they focus on you as your own self, not as someone else's sister.
A hug and see you around on the forum!

 

[nav_97]

Well I was diagnosed last year end of June a week before my 18th. Only person in my entire family to have it so far and they don't really understand it, but found my doctors to be extremely helpful.
Whats not helpful is when your mum says you can have ice cream a fair few times with more insulin, but that really annoys me as I have explained multiple times but she does not get the message.

Anyway welcome-from another new member

 

[gemma22]

Hi charlotte,

I'm 22 and was diagnosed with type 1 in August of this year. I found out that I was diabetic as I had a dka and a blood sugar of 40! I'm finding the diagnosis very hard and currently not requiring any insulin, I don't understand what's happening. I don't have any family members with type 1 your lucky that you've grown up with brothers with type 1, still sucks though. I hope things start getting better for you.

Xxxxx

 

[Karenchq]

In addition to "Think Like a Pancreas", I would highly recommend the book "The Diabetes Manifesto" by Lynn Crowe and Julie Stachowiak. This book is an excellent source on how to advocate for yourself in the medical world as well as giving advice for daily living. I was diagnosed type 1 in March 2016 and have gained valuable insight and wisdom from these books as well as this forum. I wish you the best

 

[himtoo]

Hi @Charlotte2580
welcome to the forum !!

my best early advice is to be kind to yourself and to know that Diabetes is a marathon not a sprint
things won't always go to plan but accept it, make adjustments and move on -- there is a huge wild world out there for us to live in and get the best out of............................

I found one of the most helpful things for me was to learn all about the 5 stages of grief.
living with a long term chronic illness ( over 44 years for me so far )
is about learning to "get to acceptance" mentally -- it helps loads when things are not always smooth sailing
here is a link http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/

do keep posting
loads of great people here !!

 

[therower]

Hi @Charlotte2580 . Welcome to the T1 community.
Advice? Well I think specific questions will give the best advice.
But I'll offer some advice for free. Be proud to be T1 , own your diabetes, use it to be a better person and never let it become more important than you.

 

[Tot85]

Hi Charlotte,

I was 27 when i was diagnosed and I'm now 31!

I kind of always thought that it was a positive thing that i was diagnosed when i was older mainly due to the fact that i felt I was old enough to really understand about my diabetes and look after myself.

Had i been 16 or 17 then i think I wouldn't have been mature enough to make the few small lifestyle adjustments required and would have carried on going out drinking with my mates every weekend as you do at that age and ultimately neglecting my diabetes.

I feel being diagnosed later was a blessing really as i had those mad late teen/ early twenties years without it!

That's mad that 2 of your brothers have it too, have you been asked to be involved in any of the research schemes for diabetes?
I've done a few, basically just giving a blood sample and meeting wit a research scientist, there was no history whatsoever in mu family of diabetes so they were interested in why i acquired it!

 

[Charlotte2580]

Dear Charlotte 2580,
I was diagnosed about your age (only, it was some 30 years ago) and as you have 2 brothers living with the same condition I'd like to add a specific piece of advice to the very sensible and clever ones given by other forum members. When I was diagnosed, my sister had been living with T1 for several years. What happened was this: both my GP and the HPs who cared for me took it for granted that my sister would teach me about a lot of things, so they didn't give me all the information I should have needed. I only discovered this later on and I lost some precious time. Probably things are different nowadays, but it may perhaps be useful to remind your HPs that you expect THEM to give you all the necessary information, and that no one else is going to step in and take up even a small part of their job. This is especially important because changes and advances in therapy and lifestyle recommendations are constantly taking place. Just be sure that they focus on you as your own self, not as someone else's sister.
A hug and see you around on the forum!

I definitely agree with that. Even though it's been around 7 weeks since my diagnosis, I only had my first appointment back at the hospital today. They seemed to assume I was just coping well because I'd not really been in touch with them yet never did a check themselves to see how I was! I had to say how I'm learning but it's still hard when my brothers both have bad habits and I want to learn properly! Thanks for the advice

 

[Charlotte2580]

Hi charlotte,

I'm 22 and was diagnosed with type 1 in August of this year. I found out that I was diabetic as I had a dka and a blood sugar of 40! I'm finding the diagnosis very hard and currently not requiring any insulin, I don't understand what's happening. I don't have any family members with type 1 your lucky that you've grown up with brothers with type 1, still sucks though. I hope things start getting better for you.

Xxxxx

They're going better at the moment just having some bad days and some good. How come you aren't on insulin yet? Are you finding it a struggle or starting to get your head around it? Hope things are better for you too! I know my knowledge is a bit limited but if there's anything you need help with, as I'm a new learner too I'm happy to talk xxxx

 

[Charlotte2580]

Hi Charlotte,

I was 27 when i was diagnosed and I'm now 31!

I kind of always thought that it was a positive thing that i was diagnosed when i was older mainly due to the fact that i felt I was old enough to really understand about my diabetes and look after myself.

Had i been 16 or 17 then i think I wouldn't have been mature enough to make the few small lifestyle adjustments required and would have carried on going out drinking with my mates every weekend as you do at that age and ultimately neglecting my diabetes.

I feel being diagnosed later was a blessing really as i had those mad late teen/ early twenties years without it!

That's mad that 2 of your brothers have it too, have you been asked to be involved in any of the research schemes for diabetes?
I've done a few, basically just giving a blood sample and meeting wit a research scientist, there was no history whatsoever in mu family of diabetes so they were interested in why i acquired it!

I know what you mean, with being 21 I still feel sometimes that I want to be out every weekend but I cant do that as much anymore! Luckily I work full time and feel like I've already matured out of that stage.

We've not been asked to do any research schemes no but my Dad was diabetic too so it's presumed it's come from him. Not often you see all the kids in a family diagnosed though

 

[gemma22]

They're going better at the moment just having some bad days and some good. How come you aren't on insulin yet? Are you finding it a struggle or starting to get your head around it? Hope things are better for you too! I know my knowledge is a bit limited but if there's anything you need help with, as I'm a new learner too I'm happy to talk xxxx

Hi charlotte,
I'm the same I keep having good and bad days, I'm grieving for the good health that I once had! I started off insulin, but I kept having hypos sometimes 3 a day, however, the past 2 weeks my sugars have been in the teens sometimes in the 20, so I'm slowly starting to put the insulin back in. Thanks for replying, same for you I'm always here if you need anyone to talk something you can feel so lonely. Much love Gemma xxxxx

 

[Brontie_Boo]

Hi Charlotte,
I found out I was Type 1 when I was 45... Everyone thought I was ill because I had lost a heap of weight, then I was feeling a bit blah at work and passed out. Taken up to hospital with a BGL of 38 Told I had to start injecting everyday

Felt and still do feel a little overwhelmed but the best advise I got was to treat it as a silent partner. The more I look after my partner, the more silent they will be ... Much love and support Brontie

 

[Charlotte2580]

Hi charlotte,
I'm the same I keep having good and bad days, I'm grieving for the good health that I once had! I started off insulin, but I kept having hypos sometimes 3 a day, however, the past 2 weeks my sugars have been in the teens sometimes in the 20, so I'm slowly starting to put the insulin back in. Thanks for replying, same for you I'm always here if you need anyone to talk something you can feel so lonely. Much love Gemma xxxxx

How's it going with the insulin now? My levels have been good recently, around 8 during the day which makes a huge difference. It's slightly creeping back up though so I'm having to alter base rate etc now, it all feels like a bit of a guessing game just working out what feels right for me. I feel pretty in tune with my body now though like the symptoms of when I'm going high/low.
Keep in touch, Charlotte xxxx