Excited to talk about Type1 Diabetes.. but have things gone too far? [emoji26]

[daisymj14]

Hi all

I have had type 1 diabetes for 16 years.. but I have never spoken about it to anyone.
I now feel worried sick that my health situation may have gone too far already.

An unstable life has meant that I have got used to not talking about diabetes (completely ignoring it is probably a better term) so I have joined the forum. A light bulb has come on inside my head and made me realise that I need to start looking after myself after reading a heartbreaking news article today about a diabetes related tragedy of someone my age.

I have great respect for everyone who supports each other on this forum, I didn't even know it existed.

I don't know where to start but I am going to spend a few days reading posts and actually doing my blood sugars properly.

I am now settled in a new home with an amazing partner, but he doesn't know much about Diabetes because I don't know very much.
I have some retinopathy issues that I'm awaiting treatment for, I haven't had a HBA1C done for a few years but have today booked in with the doctor for next week.

Any support is much appreciated x

 

[zand]

Hi welcome to the forum Let us know your HbA1c (and any other blood test results) when you know them, then we can help. (Not me I'm T2, but there are plenty of knowledgeable T1s here)

 

[tim2000s]

Hi @daisymj14 - welcome to the forum and congratulations on the decision you've made! It will help. This topic has a really good load of resources in it: http://www.diabetes.co.uk/forum/threads/useful-tools-and-links-for-t1ds.88209/ That will help.

I'd also strongly recommend the new www.t1resources.uk and www.bertieonline.org.uk sites that are brilliant! BERTiE is all about carb counting and insulin adjustment.

 

[Harrysdad]

Hi Daisy, I too only started taking all this T1 seriously after a touch of retinopathy (seems to have settled after some laser treatment). I'd ignored the whole thing pretty much for 30 years. I would highly recommend getting a referral from your doctors for a course, an awful lot of ideas and practices have changed recently. I went on the Insight Course (similar to DAFNE I believe) earlier this year and feel 10 times better about myself and my situation. Also I would recommend the book "Think Like A Pancreas".
Good Luck, it's worth the effort.

 

[Kristin251]

Hi daisy and welcome! It's never too late to start. We all have to start somewhere. New beginnings are a good thing.

I would start reading everything and testing. This is the best forum you could have found. So many knowledgable friendly people who are willing to help.
No reason to shy away. Ask any and all questions you have. The only stupid question is the one not asked.

 

[daisymj14]

Thank you all for responding to my post.
I am absolutely dreading having my bloods done with the doctor as when I registered with them and had my initial appointment around a year ago, I felt like the nurse was almost judging me.. hence why I had given up again after trying to make a change and felt as though I am at the point of no return.
I now know that I HAVE to do it for myself, and I need to educate my partner as well as myself as i definitely need a lifestyle change. Doing 'whatever' for 16 years is now making me feel very tired and worried.
This forum is making me feel like I'm not the only person in the world that is trying to cope with Diabetes and that I don't have to hide it from everyone.
I will take a look at the links tonight

 

[daisymj14]

'The only stupid question is the one not asked'
Kristen I love that! You are so right!

Thank you for your positivity x

 

[azure]

@daisymj14 You've done a huge thing - made a fresh start Don't beat yourself up about the past - look to the future.

If you haven't seen a consultant and DSN recently, get a referral. They will know more than your surgery and could be a great help to you now you're taking the diabetes by the scruff of the neck and sorting it.

I second the recommendation to get Think Like A Pancreas. It's got loads of info in but is written in a friendly style. You don't have to take everything in at once but it's a good reference guide to have.

Don't worry about 'judging looks'. It doesn't matter what those people think. This is about you

 

[Kristin251]

You have the best attitude. Do this for YOU, and no one else. It's your life. As far as the nurse who judged you, who cares? I'm sure you could find plenty of things about her to judge. It's only a blink of an eyes time spent with her in comparison to your whole life. Let it go and shrug it off.

Hopefully your partner will support you and work with you. That is very important.

As far as being alone? Girl! This forum is loaded with people with all progressions of diabetes and all kinds of different diets. One thing you will not be on this forum is alone! Many of us come here and continue here because we are not alone as we have each other. Diabetes is not an easy disease to cope with and it can be very frustrating but there will always be someone here to help you through the tough times as well as share your progress and joys!!
So much to learn. Just stick around.

 

[CarbsRok]

Thank you all for responding to my post.
I am absolutely dreading having my bloods done with the doctor as when I registered with them and had my initial appointment around a year ago, I felt like the nurse was almost judging me.. hence why I had given up again after trying to make a change and felt as though I am at the point of no return.
I now know that I HAVE to do it for myself, and I need to educate my partner as well as myself as i definitely need a lifestyle change. Doing 'whatever' for 16 years is now making me feel very tired and worried.
This forum is making me feel like I'm not the only person in the world that is trying to cope with Diabetes and that I don't have to hide it from everyone.
I will take a look at the links tonight

Hi Daisy, firstly welcome to the forum
Even though you are dreading your A1c look at it as a positive move you are taking control. So if it turns out not to be to good then look at it as your new beginning which means the next one will be better and just remember Rome wasn't built in a day.

 

[Beetle3501]

I am new to the forum but after having type one since I was 3 have a wealth of knowledge, been through the bad times, lived through teenage years with many ups and downs and am out the other side.
Talking about it is good, knowledge is power and I would advise your partner to read up more as people around you are needed sometimes.
It is nothing to be ashamed about, be proud to be different .
Looking after yourself is important and in time you don't even think about it, just comes naturally.
Ryan

 

[himtoo]

Hi @daisymj14
a warm welcome to you

what a great post as a start to the forum !!!

most important is to just be kind to yourself -- we have all had times ( moments , months , or years ) where we didn't do the best for ourselves ............ so joining here is a great start to being the best you can .

keep posting -- there is always somebody about with good suggestions and an empathetic ear ( including me )

all the best !

 

[donnellysdogs]

Hi Daisy
Welcome!
Its never to late. With partner it would be good if partner is also included in your thoughts about it all and what you want to achieve....

My only advice really is that diabetes consultants are far more knowledgeable just dealing with diabetes, day in, day out. Personally I would get bloods done and speak to GP to request a referral to a specialist who will be able to specialise in helping you.. And the nurses are better too.

However, some CCGs are wanting T1's to be treated by GPs but if this is the case with your GP then it would be worthwhile just asking him about the new insulins like degludec and pumps etc. It may be that your GP is good with his knowledge, but in all honesty its probably unlikely.

When you see nurse, she should be areanging your annual diabetes checks. Some nurses in GPs are quite knowledgeable but you know a GP and nurses rarely have time unless you book a double appt to deal with everything.


Well done on wanting to turn things around.

 

[dex44lego9]

Hi I have a new question do any of you think diabetics runs in families because my granny had it in later years and my cousin took it when she was 4 and I took it when I was 21. I worry about my son who is 9 in case he is at risk.

 

[therower]

Hi @daisymj14. Welcome to the forum.
I'm sure you are going to find all the support you might need right here, some great people on the forum.
Don't get stressed about your hba1c results. It will be what it is, technically it's history.
It's a number that you can take control of and I'm sure you're going to do just that.
As for the diabetes, my approach is i embrace it, I've got it, I can't get rid of it, I can't be ***** to fight it day in day out so I put my arm around it and take pride in my T1 sidekick.
We have an agreement, I'm the boss we do things my way and it works out 95% of the time.
I'm not saying my approach is best but it works for me.
Good luck on your new journey.

 

[catapillar]

Hi I have a new question do any of you think diabetics runs in families because my granny had it in later years and my cousin took it when she was 4 and I took it when I was 21. I worry about my son who is 9 in case he is at risk.

Yes, there is s genetic element with type 1. If you have a relative with type 1 youre 15 times more likely to get it than someone without a relative with type 1 (but that is 15 X a really small number, so still = a really small number). If you are concerned about your sons risk, you might want to have a look at the trial net study - http://www.bristol.ac.uk/media-library/sites/clinical-sciences/migrated/documents/factsheet.pdf

 

[chalup]

Hi I have a new question do any of you think diabetics runs in families because my granny had it in later years and my cousin took it when she was 4 and I took it when I was 21. I worry about my son who is 9 in case he is at risk.

I think all you can do is know the signs and keep an eye on it. It can happen to literally anyone at any time. Worrying about something that may never happen is not productive. You are aware and that is most of the battle right there.

 

[hansolo]

@daisymj14 good choice and all power to you. I have, myself, only been T1 for just over a year, having gone 40 years of enjoying carbs unhindered! How I would have coped in my teens/twenties.. even thirties, I really don't know. Anyway, here I am, one year in and although I embraced it all and got on top of it, it gets me down. It's a second job - on top of a big job, family etc. It's hard. Facing up to it is the first step, so you have my admiration.

Keep your chin up

 

[DavidGrahamJones]

I worry about my son who is 9 in case he is at risk.

As you can imagine this is a complex question without a simple answer. I would suggest that you research this subject a little further. From the little that I have read not only do you have to have both parents with diabetes, but environmental factors have to be considered as well. There are even cases of twins where one is type I and the other with no diabetes, these case are especially interesting to scientists who are trying to establish genetic risk factors. It is still difficult to quote a risk fact so be wary of any suggestions that there is.

You know the signs to look for, please try not to obsess about it, read up what's known. I'm sure nobody here will worry about you wanting to verify what they might have said