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Just wanted to say Hi

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Mareen

New Member
Relationship to Diabetes
Type 1
Hi everyone.
I am very new to all this so I hope you will be patient with me 🙂
I was diagnosed with Type1 Diabetes 10 months ago and have been struggling with it ever since. Never realised just how much it changes your life. Turned mine on it's head!!
For me, it's not just about coming to terms with the day-to-day things I now have to do. A big part of it is the mental and emotional toll it has taken.
I just want to feel NORMAL again!
Family and friends have been supportive, but find it difficult to understand just how much it has affected me.
I am definitely not the person I was before Diabetes came my way :(
How do I get back to being ME again?
 
Hi everyone.
I am very new to all this so I hope you will be patient with me 🙂
I was diagnosed with Type1 Diabetes 10 months ago and have been struggling with it ever since. Never realised just how much it changes your life. Turned mine on it's head!!
For me, it's not just about coming to terms with the day-to-day things I now have to do. A big part of it is the mental and emotional toll it has taken.
I just want to feel NORMAL again!
Family and friends have been supportive, but find it difficult to understand just how much it has affected me.
I am definitely not the person I was before Diabetes came my way :(
How do I get back to being ME again?
Hi Mareen,

i am also new to all of this and to this forum and i to feel the same way as you do. however i spent a good few hours the other night reading other people's storys on this forum, and i cant tell you a much less alone and better about it all i felt.

please try this and i hope it helps you the way it did me.
 
Welcome to the forum @Mareen I am very pleased that you have found us.

It is a big shock when you get diagnosed and there is a lot to learn very quickly. This all takes some time to get used to and it takes time to accept the change to a new normal life, in which you need to plan a lot more for what you want to do.

First it is not unusual to feel overwhelmed at the start, but things do become easier, both physically and emotionally. It is difficult for anyone to understand what we need to do day by day and the impact of this, so this forum is a great place to be as we do ‘get it’.

It will help us if you can tell us a little about how you are managing your T1.
What insulins are you using?
Are you using pens or a pump?
Have you done a carb counting course- this makes life much more flexible and I know it was the first time I started to feel that I had some control over things.
are you using a Libre sensor.

Sorry about all the questions it just helps us to respond appropriately to any questions that you have.
I think the steps to getting back to being you are being able to put your diabetes in its place, and the practical aspects of our management help us to push it back a bit. We all know it won’t go away but as you say you want to have a more normal life again.

I hope that we can help with that. Ask any questions that arise.
If you need a rant (and we all do at times) come on here and have one. No one will mind.
 
Hi Jack
Thank you for your words of encouragement - I will definitely do what you have suggested.
It's never a good thing to feel alone!
 
In reply to Forum Host
Just want to say I think this forum is going to be a big help to me and it will offer the support that I feel I need at the moment. Thank you for that!
In answer to the questions you have asked - here goes
I am using NovoRapid before each meal and Lantus before going to bed.
I am using pens at the moment but would definitely like to know more about the Pump.
No carb-counting course yet. Covid has supposedly put a stop to that!
I do have a Libre Sensor. It took some getting used to but I'm definitely glad I've got it.

Have I missed anything out?
 
Do we have to be offered a pump or are we able to request one?
It's something that you can certainly initiate a discussion with your team. It may also be something they mention. (Mine mentioned it only to dismiss it on the grounds there was little chance I'd be offered one.)

The NICE guidance is here (which may not precisely match what your team might follow): https://www.nice.org.uk/guidance/ta151/chapter/1-Guidance

(I note that women (and girls, I guess) are about twice as likely as men to get a pump.)
 
Oh I see. Interesting!
How do you feel about not having much chance of getting a pump?
Is it something you were thinking about?
 
How do you feel about not having much chance of getting a pump?
Is it something you were thinking about?
It doesn't really bother me. A pump isn't something I've really wanted since I'm doing fine with pens: Levemir works well for me and keeps my levels flat overnight.

However, now that looping is becoming more common (and is obviously working so well) I want a closed loop (which obviously requires a pump). Guidelines for closed loops are coming (the evidence has been provided to NICE), and while I doubt it'll be offered to us all initially, maybe in a few years there's more of a chance.

There's also been talk of revising TA151 (which is a bit old: I mean 69 or over for HbA1c?); my guess is the updated advice will be for pumps with the expectation of looping (which seems like the way things are going, particularly now that CGMs are so strongly recommended).
 
What is Looping? I've never heard of it.
I also don't know what TA151 is.
Your understanding and knowledge on all this far out-ways the bit I know!!
 
What is Looping? I've never heard of it.
It's the obvious idea once you have a pump and a CGM: connect the two and then some of the tedium of managing diabetes can be automated. You might have your pump pause if you're going low (so reducing hypos especially at night), but you can go further and have the pump increase if you're going too high. (There's obvious risks in that, but they seem to have been reduced enough that people are comfortable with them.)
I also don't know what TA151 is.
It's just the NICE technical appraisal guidance I linked to above.
 
Hi Mareen and welcome from me too.

It is important to understand that there is a huge mental and emotional drain on you with a diabetes diagnosis and it takes time to work through that. What you are feeling is therefore perfectly normal and how most of us felt following our diagnosis.... It is considered to be a form of grieving and is common I believe with other long term conditions too. You are grieving the old carefree life you had when you didn't have to think before you ate or exercised or before you drove the car or went to sleep. The strain of keeping yourself safe and giving consideration to everything you put in your mouth and how much insulin you inject is huge, but you will learn to manage it given the right support and education and understanding and the right tools to help you.

If you are not yet carb counting then a pump would not really be appropriate I believe. They are not "plug and play". You need to have a good level of experience and understanding of carb counting and basal needs and they certainly don't do it all for you. Even the looped pumps need input and if they fail, you need to be able to go back to basics at a moments notice and run things yourself, so they are not by any means a simple solution.

The good news is that this forum can help you to build your knowledge and experience and confidence to the point that you might be considered for a pump but you might also find that you can manage things fine with the tools that you already have once you gain some knowledge and practical experience.
I'm not sure how I would have coped without the help of the good people here but I was lucky that I found the forum almost immediately after diagnosis and it was particularly helpful through that turbulent first few months/year. I have learned a massive amount in that 3.5 year period and now consider myself the expert in my diabetes, more so than a consultant or nurse who just sees me (or speaks to me) once or twice a year. My level of confidence is now so much better and not only that but I am fitter and healthier than I was pre-diagnosis and in fact I feel 20 years younger which at 58 is not bad at all.

My advice to you would be to become a regular visitor here on the forum. Ask lots of questions and educate yourself because you are the person who really needs to know how this all works as you live with it every day and every meal. The diabetes clinics are severely overstretched, particularly now after Covid, so taking responsibility yourself and learning how to manage this condition is not only important but empowering. And if I can do it (I am probably the least organized person I know, have comfort eaten for as long as I can remember, was a sugar addict pre-diagnosis and have suffered from anxiety and depression for over 20 years) then anyone can... especially with the help and support of this forum.

I look forward to getting to know you better and hopefully along with the rest of the forum members, helping you, not just come to terms with this, but to put it in it's place in your life and start managing it and living your life well.
I should also say that we all have hypos and hypers from time to time and that is not failure.... just as well as I had 4 hypos yesterday and 2 so far today 🙄 it is just the nature of the beast and you learn how to deal with them and do your best to work out why they happened and take steps to prevent them from happening again but sometimes they still happen....and when you have a bad day you hope/expect tomorrow will be a better one... and often it is! :D

Diabetes hasn't stopped me doing anything that I did before except eating multipacks of Snickers and having 3 sugars in my coffee and I consider that a good thing not a bad one. I fully expect to live 10 years longer and will want some explanation from the powers that be if I don't 🙄 and I am healthier as a result, so lots of positives. The way I see it, diabetes only makes me ill if I don't manage it well and that is my incentive.
 
Oh my goodness that was incredibly inspiring to read. Thank you for your words of wisdom 🙂
I have had many bad days since being diagnosed but after reading your post I am determined to count the good days and work harder at improving my wellbeing.
I will be reading your post whenever I feel down and despondent.
THANK YOU :D
 
I have had many bad days since being diagnosed but after reading your post I am determined to count the good days and work harder at improving my wellbeing.
Yes, we all have bad days. One thing Libre does is collect data over weeks so it's possible to see a bit of context: while I might be only 30% in range today, over 90 days I'm doing much better.
 
I have been so encouraged by all the posts I have read and want to thank all of you for being there to support me in this.
I am feeling a lot more positive about things and want to put Diabetes in its place!!
 
I have been so encouraged by all the posts I have read and want to thank all of you for being there to support me in this.
I am feeling a lot more positive about things and want to put Diabetes in its place!!
If you (or anyone else) like listening to things I can recommend the recent episodes from the podcast "Type 1 on 1". For a few months it's been a weekly diary, a couple of people (one recently diagnosed) talking about their lives and handling diabetes.

(The earlier episodes were more interviews and didn't grab me, but obviously tastes differ. I've found the diary episodes much more compelling.)
 
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