New to Forum T1 49 years

[Oliver Bull]

Good evening,

I saw this thread and thought you never know, give it a try find out what people think?

I have had T1 since I was 9 years old 49 years ago and hate it now as I did when I was first diagnosed. It feels like a living horror film from an old hammer house of horrors.

From all the groups listed they sound helpful, but really can't get past hating the condition so much it feels like it has sucked me dry of rational.

I am in wonder of people that can cope with this condition.

Not looking for sympathy as doesn't help but a solution that works would be great as I am just plain tired and emotionally knackered with Diabetes.

Thanks for the moan hopeit doesn't bring you down.

Kindest regards

Olly

 

[rebrascora]

Hi Olly and welcome.

So sorry to hear that you have had such a struggle all these years with your diabetes and not yet found a way to get along peaceably. I think engaging with others who face the same challenge can help to give you a new perspective, so I hope the forum can somehow help you to find a way through the brick wall you are facing.

Just for a little background info if you don't mind.... Can you tell us a bit about how you manage your diabetes?
Things like....
Do you use MDI or a pump?
Which insulin(s) you use?
Do you have Freestyle Libre or similar CGM?
if you have had an intensive educational course like DAFNE..... many people who have been diagnosed since childhood seem to miss out on this and it can be really helpful to give you a new approach. Spending a week with other Type 1s is in itself really insightful and a highly qualified DSN going through your daily results can also help to pinpoint problem areas with your management and not just get back on track but learn to problem solve for the future. It can also help to fast track you for better tech like an insulin pump if you don't have one and they feel you would benefit from one. I was really apprehensive about it but it gave me frameworks for dealing with lots of different everyday situations and improved my confidence particularly with regard to adjusting my basal insulin doses which need tweaking rather too frequently. It really sets you up to take more control of your diabetes rather than just muddling along.

I think aside from visiting this forum regularly to gain knowledge from other Type 1 diabetics, Freestyle Libre is the other thing which has been an absolute gamechanger to the way that I tackle my diabetes and I treat it more like a long running video game now than a serious health condition, trying to maintain my BG within target and achieve a personal best Time in Range. I also feel that the wider target of 3.9-10 70% of the time is more easily achieved than the old targets of 4.7 before meals which I regularly failed at.... very dispiriting when you fail almost as much as you succeed, whereas with Libre I can consistently achieve 80-90% and have a personal best of 96% for one week. Anyway, who doesn't love a new toy/bit of tech to play with ..... Of course you may have had Libre sensors for years and be totally bored with them.... it is still early days for me.

Anyway, I hope we can provide you with some support and a way forward which is not as grueling as the past has been for you by the sound of it. Knowledge is power with diabetes, so the more you learn the better you can manage to live with it and keep it in it's place.
Look forward to hearing more from you. Feel free to ask any questions you have. I imagine it has probably been pretty lonely trying to manage it more or less on your own for so long, so comparing notes with others can really be an eye opener, especially as diabetes can be surprisingly individual.

 

[Inka]

Welcome @Oliver Bull Type 1 is relentless - never a day off from the b*%#@ thing! You’ll find a lot of understanding here.

If your feelings have intensified recently, have you considered diabetes burnout? Have you spoken to your DSN or doctor about it? I had burnout and I dealt with it by relaxing control a little and trying to be more laidback. Over time that helped.

Do you have things like a Libre to help you? Sometimes getting new tech can relieve some of the stress.

 

[Pumper_Sue]

Hello and welcome to the forum @Oliver Bull.
Yes life and diabetes can and does suck at times doesn't it?
No idea if this will help you but the easiest way I have ever found to live life as normal as can be is to treat your meter numbers as just that (numbers)eat or inject and move on. Dwelling on things doesn't help.

 

[cameron]

Hi @Oliver Bull, welcome to the forum. 🙂

49 years with diabetes, that's a fantastic achievement! I was diagnosed at a similar age as yourself, so I am always inspired to hear people living with diabetes for so long (I will be "celebrating" my 20th anniversary soon).

You're more than welcome to vent and moan, it's what we're here for! It's important to talk to someone when you're feeling low, even if you're not looking for any practical help. As @Inka says, many here on the forum can relate. Do you have a good friend or family member you can talk to as well?

Have you ever spoken with a GP or your diabetes team about how you're feeling?

 

[helli]

Hi @Oliver Bull
Welcome from a fellow T1er. I think most of us can relate to the relentless demands diabetes make upon us.

As a member of the forum, feel free to vent, rant, share, over-share, not share at all, just watch the threads (it's not stalking) or joining in as much as you want.
We have some members who are over eager asking for all your details - we all want to help but do not feel obliged to open your heart if you don't want to. For many it is enough that there are others to talk to who understand.

 

[Abida DUK]

Hi @Oliver Bull - a very warm welcome to the forum!

Sorry to hear that you've been struggling with your type 1 diabetes - it's often underestimated how much this condition can affect you emotionally, so please feel free to 'moan' about it as much as you need as this is a part of your lived experience of diabetes. We have a friendly and knowledgeable community here on the forum, so if you have any questions/concerns we will be happy to help.

Having said that, we also have a Helpline service where you can speak to one of our advisors if you are in need of some support - not only are our advisors trained with extensive knowledge of diabetes, but they are also trained counsellors so if you just need to talk to someone and are feeling a little low, please do not hesitate to get in touch. You can call on 0345 123 2399 Monday to Friday between 9am and 6pm, where a member of the team will be happy to assist and/or listen.

All the best, and take care.

 

[nonethewiser]

9 is so young, don't think any of us love condition so hate is understandable, maybe your experiencing burnout as Inka said above, discuss things over with your diabetes team.

 

[everydayupsanddowns]

Welcome to the forum @Oliver Bull

I think a lot of folks here will know exactly where you are coming from. Diabetes can be overwhelming, frustrating, relentless, depressing, exhausting and life-changing. And it is completely valid to feel all those things.

Some members here channel that rage into action to help them manage their diabetes better, effectively wanting to ‘beat it’ or ‘not let it win’.

Some profound experiences for me over the last 4-5 years have taught me a few significant life lessons. Without wanting to get all touchy-feely-mystical, life is generally awful and depressing and full of despair. And also life is generally amazing and beautiful and full of hope. It is all of those things, all at once. It is tedious and invigorating, it is cruel and it is kind. Full of acts of hatred and of love.

I read an interesting philosophical book after my wife died in 2018 entitled ‘the courage to be disliked’. Framed as a conversation between a philosopher and a (sceptical) student. One arresting concept within it is that there are no good or bad events, no truimphs or disasters, there is only how you choose to respond to things. Like water down a well that is ice cold in summer and almost lukewarm in winter… the water remains the same temperature, it is only our perception of it, and reaction to it that changes.

I’m not sure I can completely go along with that… But I can certainly see examples of people going through really dreadful awful life events and experiences, and somehow managing to make something positive out of them. And in a sense it empowers me to think that if I can change my reaction to things, then I won’t have to keep on feeling so low /annoyed / down.

Even it is is just acknowledging the awfulness of whatever it is, but also making the effort to find the tiny glimmers of joy in the everyday.

 

[trophywench]

Mmmmmmmmm ... @Oliver Bull - I'll be reaching my 50 years diaversary in August. Curiously I went through a long patch of 'The Glums' last year - curious cos it was 49, same as you now. Once I'd come out the other side and was able to analyse this, it wasn't ONLY my D - it was quite a number of other things too. Most of em though were somewhat like T1D ie not a lot anyone can do about them cos more than a bit of it is either caused or exacerbated by anno domini.

You know your first D consultant in 1973 - and mine in 1972 - do you ever wonder if they're now spinning in their graves for telling both of us there'd probably be a cure found within 10 years? Just imagining them spinning out of the ground and into orbit .... in truth mine was probably cremated anyway .......

Since I can't possibly control time passing, us getting older and unable to do some physical things - one thing almost wholly in my control day to day - is the control of my BG. So - let's get on with that bit then!