22 New Type1 feeling useless

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SophieEve

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Relationship to Diabetes
Type 1
I’ve been Type1 diagnosed for 2 months now, at 22 an adult diagnosis.. i’m someone who is very on-top of things so monitoring and tracking my levels has come easy to me, its the isolation and loneliness that comes with it that i’m struggling with. I don’t know a single soul with DT1 or even DT2! I feel like the weight of all of the knowledge i’ve been cramming in my head is overwhelming me!
I’ve joined to hopefully have some stress relief in hearing other people’s story and to be blunt, tell me it will all be ok and that other people have felt this way too!
“I’m fine” seems to be my response to non DT1 people as to save them having to hear all of the info in my head! Where to begin.. Anyway.. Hello, i’m Sophie!
 
Hi @SophieEve and welcome to the forum. You are alone no more. I'm a mere T2 so a lot less to struggle with or cram in than you but I'm sure many of our T1's will be along soon to sympathise, commiserate, support and share stories.

We are a friendly bunch and most of us have got on top of things aided in no small part by sharing stuff on here. So feel free to join in with the banter or the serious stuff, whatever takes your fancy!
 
SophieEve said:
I’ve been Type1 diagnosed for 2 months now, at 22 an adult diagnosis.. i’m someone who is very on-top of things so monitoring and tracking my levels has come easy to me, its the isolation and loneliness that comes with it that i’m struggling with. I don’t know a single soul with DT1 or even DT2! I feel like the weight of all of the knowledge i’ve been cramming in my head is overwhelming me!
I’ve joined to hopefully have some stress relief in hearing other people’s story and to be blunt, tell me it will all be ok and that other people have felt this way too!
“I’m fine” seems to be my response to non DT1 people as to save them having to hear all of the info in my head! Where to begin.. Anyway.. Hello, i’m Sophie!
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Welcome to the forum @SophieEve . I was a lot older than you when I was Diagnosed with T1, but I remember the isolation. Friends were understanding but it was a lot to take in and hard to explain all that was involved.

How are you managing your diabetes. What insulins are you using. Have you been offered a Libre?

I am like you and like to be on top of things. I found that I gradually got better at managing my D initially with Multiple Daily Injections, then a pump and also the chance to use a Libre sensor.

You are not alone and on this forum there are people who ‘get it’. Ask any questions that you have. No questions are considered silly. Keep in touch.
 
Yes Sophie - been where you are though I never wasted my hard earned on the t-shirt. I am still the same person I was before my diagnosis, very much older but probably not very much wiser.

Nobody wants to join this club, it's true. But try and relax now you're here, and let me say you'll get to meet a lot of jolly nice people on the whole, now you are. We get to hear a lot more of the latest news about things that can help us, than we would if we didn't come here. We also discuss amongst ourselves the best way we have each found of dealing with this that or the other happening in our lives - whether it's finding we have retinopathy or looking after a new pet! Not just diabetes, because were are ALL far greater as a whole, than simply our diabetes - and every single one of us is different to the next person so what works for one won't work for another and anyone that gives you the impression that shouldn't happen and therefore you've failed - is talking rubbish !!

It's a brill support network - so use it!
 
Docb said:
Hi @SophieEve and welcome to the forum. You are alone no more. I'm a mere T2 so a lot less to struggle with or cram in than you but I'm sure many of our T1's will be along soon to sympathise, commiserate, support and share stories.

We are a friendly bunch and most of us have got on top of things aided in no small part by sharing stuff on here. So feel free to join in with the banter or the serious stuff, whatever takes your fancy!
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Thank you! Already a few messages back and feeling the love of the group! Looking forward to connecting with like minded DT people and what that will bring!
 
SB2015 said:
Welcome to the forum @SophieEve . I was a lot older than you when I was Diagnosed with T1, but I remember the isolation. Friends were understanding but it was a lot to take in and hard to explain all that was involved.

How are you managing your diabetes. What insulins are you using. Have you been offered a Libre?

I am like you and like to be on top of things. I found that I gradually got better at managing my D initially with Multiple Daily Injections, then a pump and also the chance to use a Libre sensor.

You are not alone and on this forum there are people who ‘get it’. Ask any questions that you have. No questions are considered silly. Keep in touch.
Click to expand...
Thank you! Happy to have found the site! I’ve found that people are sympathetic and understanding to a certain point then strugle to see the whole picture, thinking that that the injection is the worst part!

I’m on multiple daily currently with semglee and Lispo but i have heard some great things about the Libre Sensor, and that there may be an upgraded version that links straight to your phone in the near future?

is anyone aware of a good podcast or book for managing the mental side of this or even hearing other’s stories?

already feeling very welcome, thank you.
 
SophieEve said:
is anyone aware of a good podcast or book for managing the mental side of this or even hearing other’s stories?
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Type 1 on 1 is a good podcast for other's stories. (Sweet Talking is another one I'm aware of but it feels like it's more for healthcare people. Doesn't really click for me. But the host is Partha Kar so I keep it in my list just in case something significant comes up.)

(I'm sure there are relevant books but the only ones that come to my mind are for technical advice (like Think like a Pancreas) so not really what you're looking for.)

Libre is (I think) one of the best things that's happened for decades. (Doubtless I'd have been similarly impressed by a CGM like Dexcom, but Libre is simpler and had a really simple website with a simple way to buy without making any commitment.) And it's cheap enough that now it's offered to many (30% or so) on prescription. Libre 2 is expected to gradually replace the current Libre and as you say it offers a bit more (high/low alarms), and Libre 3 will apparently be a smaller sensor providing (with a phone) a proper CGM (same price). (Libre 3 seems likely to be some time away.)

You're most certainly not alone in finding everything stressful. I think that's a universal experience, at least now and again. People just don't realise the near constant attention it takes, all the tiny little judgements we have to make; when we're injecting for lunch really we're also loosely planning the next four hours (so I really want to know about the afternoon walk before that).
 
Hi SophieEve. So I'm not a diabetic, but have cared for my mum for 23 years. I will be the blunt one here and say it is the most difficult and complicated disease that anyone can have. I have created a post for people to read of my circumstances, but...... please don't be scared. Everyday is a hurdle, but that hurdle can be jumped if you approach it the right/correct way. You need a support network and a contact for your local team. You have made the first steps to joining the website and looking for the correct support via the forums and there are loads of people who will be able to guide you to the correct places. Everyone in your support network will need their own support and guidance in order to help you as the condition affects those people who are close to you. Talk to people and take all the advise you are given. Here if you want to chat
 
I have tried to track through to find a recent thread which asked us what we would have told ourselves at diagnosis from where we are now. (@everydayupsanddowns can you help. It was one that you started). A common thread through all the responses was to link up with others. You are already doing that.

On here be honest about how you are feeling. We ‘get it’ and will have ways round things that crop up for you. Practical advice as well as support.

Keep in touch and keep asking any questions.
 
Hi @SophieEve Yes, a Type 1 diagnosis is a huge shock. It takes time to get used to all the physical stuff, but it takes time too to get your head around it emotionally. You’ll gradually find it less overwhelming. Take one day at a time.

Ask any questions you want here - nothing is too trivial.
 
Hey SophiEve

welcome! You are in the early days of this diagnosis but it does get better to the point you hardly think about it. I’m a 40+ year veteran of the disease and T1 like you.
compared to my early days (I was 7 when I got diagnosed) the modern diabetic has many technology options available to them, I have a CGM+pump system and it has changed my life since I started with it almost 2 years ago.
You sound like your on top of it already so once you get your head around the options out there it will rapidly become a walk in the park for you.
If you haven’t already I would suggest you get a freestyle libre, it makes the BG testing a breeze.
I would also say T1’s are thin on the ground, I don’t know any either, T2’s you probably do know someone and maybe they don’t even know themselves
Looking forward to hearing more about your journey and the great thing about this places is everyone understands at least one of us has experienced it all lol
 
Hi @SophieEve and welcome, glad you've found us.

It is a huge shock to be diagnosed, mentally and physically. Suddenly you're in charge of running your own insulin supply and balancing/juggling insulin, food, blood glucose and a myriad of other factors that just used to happen unnoticed. Who knew how amazing a fully functioning pancreas is!

I didn't know anybody with diabetes until I joined this forum, I didn't ever talk about it. Being part of the forum has been the best thing for learning about all types and to see what works for others as well as having a friendly support network. Even in non Covid times diabetes is approx 99.9% self management so we need to feel as safe as possible with our own choices and decisions, talking to others who just 'get' diabetes is invaluable.

Day by day things will settle into a routine and you'll get some head space back from being over filled with diabetes stuff.
 
COCOMOMO18 said:
cared for my mum for 23 years. I will be the blunt one here and say it is the most difficult and complicated disease that anyone can have.
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I was reading your other thread. You and your mum have had a tough time over the last 23 years.
One thing to bear in mind is the amazing progress that has been made with diabetes technology since your mother's diagnosis in 1988. I would not wish Type 1 on anyone but only in the same way I wouldn't wish any chronic condition on anyone. However, I believe it is much easier now that it used to be.
I have no experience of any other chronic condition but managing diabetes is not the most difficult or complicated thing I have done in my life.
 
Inka said:
You’ll gradually find it less overwhelming.
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I should have emphasised that: like everything, it does become easier with practice.

And as others have mentioned, we have much better insulins now, really tiny needles, and (for some) pumps and things. (And it doesn't feel impossible that proper artificial pancreas systems (combined pump and CGM with automated feedback) will be much more available, and then more of us can avoid having to think about diabetes for days at a time, and then just changing insulin, charging the thing, etc.)
 
Well of course if you happen to be a techno-head and into ongoing personal investment into gadgetry, you can already create a 'hybrid closed loop' system should you want to. A lot of recent pump technology works best with integrated CGM systems too - unless you happen to live in an area whose CCG almost 100% refuses to allow a CCG to be prescribed, in which case forget it.
 
trophywench said:
Well of course if you happen to be a techno-head and into ongoing personal investment into gadgetry, you can already create a 'hybrid closed loop' system should you want to. A lot of recent pump technology works best with integrated CGM systems too - unless you happen to live in an area whose CCG almost 100% refuses to allow a CCG to be prescribed, in which case forget it.
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I know, and I guess I could do that. I think it's plausible that there'll be a collection of closed loop systems commercially available within 5 years (one or more of them likely involving Libre 3 which (because it's supposed to be Libre priced) should be easier for CCGs to offer).

There's at least one experimental one with a dual fluid pump (which can provide insulin and, I think, glycogen or similar). So with any luck in a few years they'll be more routine (much as pumps are now) and it'll be more widely accepted that this is the gold standard treatment. I accept it'll still probably not be offered to me, but it should be easier to argue about then and maybe I can self fund parts of it.

As for some CCGs not offering CGMs that's being looked at, with NICE apparently evaluating them. My guess is the idea is that they'll offer some kind of recommendations which should push CCGs a bit.
 
helli said:
I was reading your other thread. You and your mum have had a tough time over the last 23 years.
One thing to bear in mind is the amazing progress that has been made with diabetes technology since your mother's diagnosis in 1988. I would not wish Type 1 on anyone but only in the same way I wouldn't wish any chronic condition on anyone. However, I believe it is much easier now that it used to be.
I have no experience of any other chronic condition but managing diabetes is not the most difficult or complicated thing I have done in my life.
Click to expand...
Oh yes absolutely, it has definitely moved on for the better and progress is increasing, with any conditions and each person is different in their management and their type of diabetes so can only comment from what I have experienced over the years with my mum. Thank you @helli
 
Hi @SophieEve and welcome to the forum. I was diagnosed T1 almost three years ago and found it hard to take everything in at first. Like you, i don't know anyone else with T1 so I read as much as i could about it and although i can usually keep on top of things, i also was the sort of person who liked to know "if this happens, you do that". As everyone is different obviously that can't really happen so being on this forum has been brilliant. Everyone is helpful, knowledgeable and understanding. You will get days where you are doing really well with managing it, but there will also be days where you just want to have a rant about D. Come on here. We all know how you feel and try to support each other.
 
SB2015 said:
I have tried to track through to find a recent thread which asked us what we would have told ourselves at diagnosis from where we are now. (@everydayupsanddowns can you help. It was one that you started). A common thread through all the responses was to link up with others. You are already doing that
Click to expand...

This one I think?

forum.diabetes.org.uk

5 Top Tips for Better Diabetesing

Just found myself absently wondering what I would say to myself if I could go back in time ‘Bill and Ted’ style and offer newly-diagnosed-me some hints and tips for better diabetes management, and a better relationship with my diabetes from future-me. What 5 hints and tips I might offer myself...
forum.diabetes.org.uk forum.diabetes.org.uk

Welcome to the forum @SophieEve

I was diagnosed at a similar time in life, though a year younger 🙂
 
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