Feel like I'm stuck in a never ending nightmare

[evecainx]

Hello everybody, my name is Eve and I am a type 1 diabetic. I was diagnosed age 5, I am now 21 years old. I will be honest and say I'm not very well controlled. I think I'm going through a phase and have been for a while. I begrudge having diabetes, I know its not the end of the world and once controlled can be quite a mellow condition to have, however I hardly ever check my blood sugars, barely take my insulin and now have background retinopathy at the young age of 21. Can somebody please tell me this is a normal phase to go through? Has anybody else been in the same boat?
I just feel like I'm slowly killing myself but I'm not meaning to, I just need some help, support and advice to get back on track and try and be as healthy as I can be.
Thank you for taking the time to read my post, I'm eager to get to know everybody and find people who go through what I do everyday! 🙂

 

[Docb]

I'm old enough to be your granddad so what can I say. One thing is for sure is that you need to get control of your diabetes otherwise it will define you and that is not right. Sounds like you need some support from someone who is not going to be judgemental, only has your interests at heart and is going to help you work your way through things without telling you what to do or blabbing to all and sundry. Anybody in your circle fit the bill? Granddad maybe? If not, you are in the right place here.

 

[trophywench]

Hear hear - you clearly aren't stupid and you do want to help yourself so that's a really brill beginning!

It isn't an impossible task - the time honoured way of doing such jobs that seem impossibly huge is one that was used in 'management' training donkeys years ago when the question that was posed to the trainees was, 'How do you eat a whole elephant?' - usually, nobody had a clue. The answer was, 'Start by dividing the beast up, into bite-sized pieces!'

That's exactly what we all have to do with diabetes control. My suggestion for you to start with is to read the following link - and then do it, please. https://www.diabetes-support.org.uk/info/?page_id=120

Meanwhile can you please tell us which insulins you are on and what time(s) you inject your basal?

 

[SB2015]

Hi Eve, it is great that you have come looking for help. I have certainly learnt most of what I know about my diabetes from others on here. This is a source of excellent advice and support, whether it is practical or emotional.

As Jenny has said, with more info about what insulin’s you are using and when you test and deliver your insulin we can be of more help.

You have made a good start by coming on here as this shows that your u do want to sort this, and recognise that this is necessary. It is frustrating at times, as D doesn’t always behave properly, but it is manageable and once we have a good routine, and treat it with a bit of respect, it will leave us to get on with our ‘normal’ life.

 

[Flower]

Hi Eve and welcome 🙂

What advice have your diabetes team given you? It's especially important with the start of retinopathy to get better control of your blood sugar gradually, a rapid tightening of control can sometimes make things worse. Have you told you team/DSN what problems you're having with it all?

I found growing up through my early 20's a really tough time, a job in a new area, lots of change in my life and diabetes hanging around all the while and I did start to neglect doing things properly. When you say you're barely taking your insulin what does that mean? Are you taking your long acting insulin and avoiding your bolus insulin or are you just having less insulin than you need for the carbs eaten. Is there a reason for not injecting or is it you're not sure on carb counting and matching insulin to food so you're just injecting a random number of units?

Please speak to your diabetes team and tell them what you're struggling with -sometimes it's assumed that we all know what to do because we've lived with diabetes for decades - they will have heard it before and will want to help you get to a better place with a healthy future. It's a whole lot better to ask for help now and get yourself into a routine where diabetes doesn't fill your head with constant worry about the damage it could be doing.

I've been in a similar sort of place to you where I just wanted to ignore the fact I had diabetes- it didn't ignore me!- and I caused myself and my family years of worry and fear. Not worth it for one moment, I eventually asked for help because I had complications and I was given help and I'm incredibly grateful for that as it got me to a better place.

Start small step by small step and tell yourself that you can do it, start by testing at regular intervals and record the results whether they're pretty or not, keep a food diary with the insulin dose you take and build a picture up of where things are going haywire then you can start to find the solutions. 🙂

 

[HOBIE]

Hello everybody, my name is Eve and I am a type 1 diabetic. I was diagnosed age 5, I am now 21 years old. I will be honest and say I'm not very well controlled. I think I'm going through a phase and have been for a while. I begrudge having diabetes, I know its not the end of the world and once controlled can be quite a mellow condition to have, however I hardly ever check my blood sugars, barely take my insulin and now have background retinopathy at the young age of 21. Can somebody please tell me this is a normal phase to go through? Has anybody else been in the same boat?
I just feel like I'm slowly killing myself but I'm not meaning to, I just need some help, support and advice to get back on track and try and be as healthy as I can be.
Thank you for taking the time to read my post, I'm eager to get to know everybody and find people who go through what I do everyday! 🙂

Welcome Eve ! Have you tried a Freestyle Libre ? The info is excellent & saves your pinkies 🙂

 

[evecainx]

Welcome Eve ! Have you tried a Freestyle Libre ? The info is excellent & saves your pinkies 🙂

Im really hoping for one, however i dont think i meet the criteria, which is a shame, ive heard excellent things about it though!

 

[evecainx]

I'm old enough to be your granddad so what can I say. One thing is for sure is that you need to get control of your diabetes otherwise it will define you and that is not right. Sounds like you need some support from someone who is not going to be judgemental, only has your interests at heart and is going to help you work your way through things without telling you what to do or blabbing to all and sundry. Anybody in your circle fit the bill? Granddad maybe? If not, you are in the right place here.

I do have a really supportive family, however their advice just doesnt have the impact it should on me, my granddad was my rock over my diabetes and really helped and supported me but unfortunately he passed away in 2013, coincidentally when i begun to 'rebel'! Thank you for your advice though!!

 

[evecainx]

Hear hear - you clearly aren't stupid and you do want to help yourself so that's a really brill beginning!

It isn't an impossible task - the time honoured way of doing such jobs that seem impossibly huge is one that was used in 'management' training donkeys years ago when the question that was posed to the trainees was, 'How do you eat a whole elephant?' - usually, nobody had a clue. The answer was, 'Start by dividing the beast up, into bite-sized pieces!'

That's exactly what we all have to do with diabetes control. My suggestion for you to start with is to read the following link - and then do it, please. https://www.diabetes-support.org.uk/info/?page_id=120

Meanwhile can you please tell us which insulins you are on and what time(s) you inject your basal?

Oh yes of course, im on novorapid 1 unit for every 10g, and lantus 38 units at 11pm

 

[evecainx]

Hi Eve and welcome 🙂

What advice have your diabetes team given you? It's especially important with the start of retinopathy to get better control of your blood sugar gradually, a rapid tightening of control can sometimes make things worse. Have you told you team/DSN what problems you're having with it all?

I found growing up through my early 20's a really tough time, a job in a new area, lots of change in my life and diabetes hanging around all the while and I did start to neglect doing things properly. When you say you're barely taking your insulin what does that mean? Are you taking your long acting insulin and avoiding your bolus insulin or are you just having less insulin than you need for the carbs eaten. Is there a reason for not injecting or is it you're not sure on carb counting and matching insulin to food so you're just injecting a random number of units?

Please speak to your diabetes team and tell them what you're struggling with -sometimes it's assumed that we all know what to do because we've lived with diabetes for decades - they will have heard it before and will want to help you get to a better place with a healthy future. It's a whole lot better to ask for help now and get yourself into a routine where diabetes doesn't fill your head with constant worry about the damage it could be doing.

I've been in a similar sort of place to you where I just wanted to ignore the fact I had diabetes- it didn't ignore me!- and I caused myself and my family years of worry and fear. Not worth it for one moment, I eventually asked for help because I had complications and I was given help and I'm incredibly grateful for that as it got me to a better place.

Start small step by small step and tell yourself that you can do it, start by testing at regular intervals and record the results whether they're pretty or not, keep a food diary with the insulin dose you take and build a picture up of where things are going haywire then you can start to find the solutions. 🙂

I stupidly take my insulin after meals or sometimes not at all, just 'forgetting' to as i tell people, ive spoken to my diabetes nurses but i dont really think they care anymore as they have advised me so much, ive brought my mum in to my appointments and shes made a comment that they seem to rush peoples appointments just to get through their day rather than taking an interest in our lives! Im so grateful for yours and everybody elses support, i feel like im finally in a community where i belong, its a lovely feeling 🙂

 

[evecainx]

Hi Eve, it is great that you have come looking for help. I have certainly learnt most of what I know about my diabetes from others on here. This is a source of excellent advice and support, whether it is practical or emotional.

As Jenny has said, with more info about what insulin’s you are using and when you test and deliver your insulin we can be of more help.

You have made a good start by coming on here as this shows that your u do want to sort this, and recognise that this is necessary. It is frustrating at times, as D doesn’t always behave properly, but it is manageable and once we have a good routine, and treat it with a bit of respect, it will leave us to get on with our ‘normal’ life.

Hopefully i will get a grip on it!!!

 

[SB2015]

Hopefully i will get a grip on it!!!

Morning Eve
One of the things that you have highlighted is forgetting to take you Bolus insulin at your meals. Changing this would have an immediate and large impact in your levels. I was advised to inject after my meal when I was diagnosed, and like you there were occasions when I forgot. I switched to doing it at the start of the meal. If I wasn’t sure of the carbs I did a conservative guess, then added a bit more at the end if it was a bit more than I thought.

So how about making that the one thing to focus on at first.
As Jenny said eat the elephant one bite at a time.
So each time you sit down for a meal, estimate the carbs, inject before you start
Job done.

This can be tweaked later, just make a start.

 

[HOBIE]

Oh yes of course, im on novorapid 1 unit for every 10g, and lantus 38 units at 11pm

I used to be on 1-10. Now on a pump which I find superb ! 😱. T1 is right pain at times but keeping at it Helps. Really good luck Eve 🙂

 

[evecainx]

Morning Eve
One of the things that you have highlighted is forgetting to take you Bolus insulin at your meals. Changing this would have an immediate and large impact in your levels. I was advised to inject after my meal when I was diagnosed, and like you there were occasions when I forgot. I switched to doing it at the start of the meal. If I wasn’t sure of the carbs I did a conservative guess, then added a bit more at the end if it was a bit more than I thought.

So how about making that the one thing to focus on at first.
As Jenny said eat the elephant one bite at a time.
So each time you sit down for a meal, estimate the carbs, inject before you start
Job done.

This can be tweaked later, just make a start.

Ive started doing that and my BMs are now perfect, its just trying to stick to it!! Thank you for your help!!!