Burning Out After 20 Years T1d

Emj185 · Sep 11, 2018

Hi All

Just really looking to vent and see if anyone has any suggestions/recommendations for me.

I am 24 years old and have been diabetic since the age of 4. I’ve had moderate levels of diabetes distress for the past 3 years and an ongoing battle with anxiety and depression. I know life is not all that bad, others have it far worse, but the daily worries and effort required by T1D is just becoming something I don’t feel I have the headspace to deal with. I find myself skipping blood tests, and taking insulin with a very ‘suck it and see’ approach. My appetite has always been hit and miss, I easily skip meals.

Has anyone got any little ideas for getting back on track? Even just easy low carb meals or the best approach to starting again with the self care. I have been self funding a Freestyle Libre but the monthly costs of this are becoming prohibitive... I apparently don’t qualify for the grant as I have good hypo awareness, that just feels like a real kick in the teeth right now!!

I know it’s a case of pulling myself together and these are the cards I’ve been dealt, so deal with it but it’s just so blooming wearing!

Any input greatly appreciated.
Thanks in advance Xx

KK123 · Sep 11, 2018

Emj185 said:
Hi All

Just really looking to vent and see if anyone has any suggestions/recommendations for me.

I am 24 years old and have been diabetic since the age of 4. I’ve had moderate levels of diabetes distress for the past 3 years and an ongoing battle with anxiety and depression. I know life is not all that bad, others have it far worse, but the daily worries and effort required by T1D is just becoming something I don’t feel I have the headspace to deal with. I find myself skipping blood tests, and taking insulin with a very ‘suck it and see’ approach. My appetite has always been hit and miss, I easily skip meals.

Has anyone got any little ideas for getting back on track? Even just easy low carb meals or the best approach to starting again with the self care. I have been self funding a Freestyle Libre but the monthly costs of this are becoming prohibitive... I apparently don’t qualify for the grant as I have good hypo awareness, that just feels like a real kick in the teeth right now!!

I know it’s a case of pulling myself together and these are the cards I’ve been dealt, so deal with it but it’s just so blooming wearing!

Any input greatly appreciated.
Thanks in advance Xx

Hi Emj, whether other people are worse off than you or not, please don't think that you are not entitled to feel how you do about YOUR diabetes, I reckon that is a good sign as you can then try and do something about it (which you are obviously doing by posting on this site).
I would say maybe just start from scratch again, almost as if you were newly diagnosed, ie seeing what your readings are before each meal and 2 hours afterwards etc, I have no experience of using a Libre but I guess you know your levels constantly?
Are your current readings up and down?, what insulin do you actually take and when etc. I think if you can get back into a routine again it might just help you manage to match your insulin to your carbs?
I do lowish carbs as a type 1 and with lots and lots of testing I do find that I require a lot less insulin as a consequence, obviously you need to test, test, test and you do NOT need to be afraid of eating. You say you have good hypo awareness, do you have hypo's often?
It's not a case of pulling yourself together either, we ALL need help sometimes and I know others will be along too. Please don't be too hard on yourself, relax a little, breath out and take it one day at a time. x

Emj185 · Sep 11, 2018

KK123 said:
Hi Emj, whether other people are worse off than you or not, please don't think that you are not entitled to feel how you do about YOUR diabetes, I reckon that is a good sign as you can then try and do something about it (which you are obviously doing by posting on this site).
I would say maybe just start from scratch again, almost as if you were newly diagnosed, ie seeing what your readings are before each meal and 2 hours afterwards etc, I have no experience of using a Libre but I guess you know your levels constantly?
Are your current readings up and down?, what insulin do you actually take and when etc. I think if you can get back into a routine again it might just help you manage to match your insulin to your carbs?
I do lowish carbs as a type 1 and with lots and lots of testing I do find that I require a lot less insulin as a consequence, obviously you need to test, test, test and you do NOT need to be afraid of eating. You say you have good hypo awareness, do you have hypo's often?
It's not a case of pulling yourself together either, we ALL need help sometimes and I know others will be along too. Please don't be too hard on yourself, relax a little, breath out and take it one day at a time. x

Hi KK

Thanks for your message, it’s good to speak with people who understand where I’m coming from.

Just find it so frustrating that I managed to get through all the hormonal/stressful teenager years and now I’m old enough to know better and the consequences of not looking after your diabetes, I seem to have lost the plot! It’s almost excusable through puberty and school, but I feel I should have it under control and have everything together now.

My levels fluctuate quite a bit if I’m struggling to manage my diabetes, so I found knowing continuous levels with the Libre helpful. With my standard metre if I take 2x tests a day it’s good for me at the moment, whereas I spent years doing a minimum of 8 tests.

My hypos tend to be early hours of the morning (4-5am) and occasionally breakfast time. Insulin wise I take Novorapid (4-8u) with my meals and then Tresiba (30u) at bedtime.

Do you find low carbs helps you to manage your diabetes better?

Emj X

KK123 · Sep 11, 2018

Emj185 said:
Hi KK

Thanks for your message, it’s good to speak with people who understand where I’m coming from.

Just find it so frustrating that I managed to get through all the hormonal/stressful teenager years and now I’m old enough to know better and the consequences of not looking after your diabetes, I seem to have lost the plot! It’s almost excusable through puberty and school, but I feel I should have it under control and have everything together now.

My levels fluctuate quite a bit if I’m struggling to manage my diabetes, so I found knowing continuous levels with the Libre helpful. With my standard metre if I take 2x tests a day it’s good for me at the moment, whereas I spent years doing a minimum of 8 tests.

My hypos tend to be early hours of the morning (4-5am) and occasionally breakfast time. Insulin wise I take Novorapid (4-8u) with my meals and then Tresiba (30u) at bedtime.

Do you find low carbs helps you to manage your diabetes better?

Emj X

Hi Emj, I am in the so called honeymoon period so I am on very low doses anyway but yes, I do find that low carb helps me to keep my levels stable. I know for a fact there are other type 1s who do follow a low carb diet and they will be able to share their stories. I think the premise is that if you have a low carb meal it follows that you will need less insulin to cover it therefore minimising the risk of hypo'ing or hyper'ing. I was diagnosed last year at the grand old age of 57 so I cannot imagine what it is like for such a young person, you have my admiration. x

Knikki · Sep 11, 2018

Hello @Emj185, if your finding yourself hypo at 4-5 am I would think about lowering your night time insulin, BUT be careful Tresbia takes a while to kick in when you make any changes, so even dropping say half a unit may take 4 days or so before you notice anything. Or you could eat some slow acting carbs to maybe counter the hypo early morning.

Check with your DSN or doctor first just to be on the safe side.

I grew up with diabetes it is all I have known but even now I still find things to learn about this .whole condition. Once you get your head around it, it becomes much easier to manage, it is good you have Libre it really is such a useful tool, wish I had it when I was 24 but alas no

Take care and don't stop asking questions, there is always someone around that will listen and give some advice

Emj185 · Sep 11, 2018

Knikki said:
Hello @Emj185, if your finding yourself hypo at 4-5 am I would think about lowering your night time insulin, BUT be careful Tresbia takes a while to kick in when you make any changes, so even dropping say half a unit may take 4 days or so before you notice anything. Or you could eat some slow acting carbs to maybe counter the hypo early morning.

I grew up with diabetes it is all I have known but even now I still find things to learn about this .whole condition. Once you get your head around it, it becomes much easier to manage, it is good you have Libre it really is such a useful tool, wish I had it when I was 24 but alas no

Take care and don't stop asking questions, there is always someone around that will listen and give some advice

Thanks Knikki, I’ll try dropping my Tresiba a little. I didn’t know it took a while too take effect so I’ll keep my eye on that
Appreciate the advice

Robinredbreast · Sep 11, 2018

https://www.diabetes.co.uk/forum/threads/diabetes-burnout.13994/page-13#post-1869227

This is a good read and I hope you start to feel better, just take small steps and when things are going well, give yourself a pat on the back and give yourself a little treat.

Knikki · Sep 11, 2018

Just reading back if your after info on Carb Counting then have a look at "bertie online" (if you do a search just on "bertie" u will get hits on Edward VII, which while interesting is not diabetic related )

It is a way of working out a ratio of carbs to insulin which also helps control things (again something new for me too) and while many do go down the Low Carb route it does not suite all but again, if it helps no harm in trying.

Me I like cake to much

Emj185 · Sep 11, 2018

Robinredbreast said:
This is a good read and I hope you start to feel better, just take small steps and when things are going well, give yourself a pat on the back and give yourself a little treat.

Thank you! I hadn’t found this thread appreciate all the help and advice from everyone. Sometimes just lose the way a little!

alphabeta · Sep 11, 2018

I personally had something like diabetes burnout. I never dropped testing, skipping meals, or not taking insulin, I just did not care at all about my sugar levels at all. I could easily reach above 20 mmol/L and not give a **** about it. Then, this forum with its wonderful people showed me the path, i.e. told me about basal bolus regime and explained the real danger of sugar spikes. I still learn, but whenever I feel down, nothing makes me motivated except writing my feelings down on a paper, take a deap breath and pour all my emotions. This has helped me always to keep moving forward. I also keep thinking about the good moments I had with diabetes control, something I never thought it was possible, I stopped waking up high, I stopped having high BG after breakfast particularly, and as a result I stopped being high (pun intended). What helped me the most is to open up to other diabetics, they understand, not like those pricks who tell me that 4 tests a day are more than enough! Have faith in yourself dear, you are your best friend. Talk to your best friend and listen to him.

Alison54321 · Sep 11, 2018

I think you're being a bit hard on yourself. 24 is an age when there are a lot of other things to think about, it's the point where you seriously start entering adulthood, and have a lot of things to worry about, like career, where you're going to live, relationships, and just sort of who you want to be, so it's no wonder that managing your diabetes isn't top priority.

Obviously you don't want to mess up completely with your diabetes management, but, maybe part of what is happening here is you are moving from the routine you followed in childhood, into how you want to manage your diabetes as an adult. Thinking in those terms might help you get back on track. Now you're 24 you can eat what you want when you want, and pretty much manage your diabetes to suit you, so adapting to what you want might be a way to get past the burn out.

Don't be too critical of yourself, you really don't need to pull yourself together, because you aren't doing anything that requires that, you're doing just fine.

Emj185 · Sep 12, 2018

alphabeta said:
I personally had something like diabetes burnout. I never dropped testing, skipping meals, or not taking insulin, I just did not care at all about my sugar levels at all. I could easily reach above 20 mmol/L and not give a **** about it. Then, this forum with its wonderful people showed me the path, i.e. told me about basal bolus regime and explained the real danger of sugar spikes. I still learn, but whenever I feel down, nothing makes me motivated except writing my feelings down on a paper, take a deap breath and pour all my emotions. This has helped me always to keep moving forward. I also keep thinking about the good moments I had with diabetes control, something I never thought it was possible, I stopped waking up high, I stopped having high BG after breakfast particularly, and as a result I stopped being high (pun intended). What helped me the most is to open up to other diabetics, they understand, not like those pricks who tell me that 4 tests a day are more than enough! Have faith in yourself dear, you are your best friend. Talk to your best friend and listen to him.

Thanks! You’re right. This forum is a brilliant place to turn when you’re feeling lost or in a rut, I’m lucky to have a supportive network of people around me but there’s nothing like talking to people who really understand where you’re coming from

Emj185 · Sep 12, 2018

Alison54321 said:
I think you're being a bit hard on yourself. 24 is an age when there are a lot of other things to think about, it's the point where you seriously start entering adulthood, and have a lot of things to worry about, like career, where you're going to live, relationships, and just sort of who you want to be, so it's no wonder that managing your diabetes isn't top priority.

Obviously you don't want to mess up completely with your diabetes management, but, maybe part of what is happening here is you are moving from the routine you followed in childhood, into how you want to manage your diabetes as an adult. Thinking in those terms might help you get back on track. Now you're 24 you can eat what you want when you want, and pretty much manage your diabetes to suit you, so adapting to what you want might be a way to get past the burn out.

Don't be too critical of yourself, you really don't need to pull yourself together, because you aren't doing anything that requires that, you're doing just fine.

Thanks Alison, that’s kind of you to say. I suppose there are a lot of changes going on right now and it’s easy to lose sight of that.
I’m going to try look at it as me figuring out how I want to handle my diabetes rather than trying to get back to my childhood routine

Emj185 · Sep 12, 2018

Alison54321 said:
I think you're being a bit hard on yourself. 24 is an age when there are a lot of other things to think about, it's the point where you seriously start entering adulthood, and have a lot of things to worry about, like career, where you're going to live, relationships, and just sort of who you want to be, so it's no wonder that managing your diabetes isn't top priority.

Obviously you don't want to mess up completely with your diabetes management, but, maybe part of what is happening here is you are moving from the routine you followed in childhood, into how you want to manage your diabetes as an adult. Thinking in those terms might help you get back on track. Now you're 24 you can eat what you want when you want, and pretty much manage your diabetes to suit you, so adapting to what you want might be a way to get past the burn out.

Don't be too critical of yourself, you really don't need to pull yourself together, because you aren't doing anything that requires that, you're doing just fine.

Thanks Alison, that’s kind of you to say. I suppose there are a lot of changes going on right now and it’s easy to lose sight of that.
I’m going to try look at it as me figuring out how I want to handle my diabetes rather than trying to get back to my childhood routine

bradley_smasher · Sep 12, 2018

Hey well done for posting up about this, it’s good to talk!
I’m going through very similar, t1 for 16 years, and struggling a lot with depression and very low mood... thanks to people here I’ve got the courage up to go and get help! I’ve started antidepressants and going for therapy to talk about everything if you want to talk more feel free to message
Don’t compare yourself against others though, it’s very true that others have it worse, but we have a real rough ride of it! I know first hand lol!
Heads up

Bevulars · Sep 12, 2018

Hi Emj,

One possible answer to your dilemma is Dr Bernstein’s Diabetes solution, there is lots of info on YouTube as well as books which he has written. He is a practicing doctor with a clinic in the US specialising in the management of T1d using appropriate low carb diets. He is a T1d himself who is now in his nineties! Hope this helps. Good luck x

Grumpy ole thing · Sep 12, 2018

Hi @Emj185 ,

For me, someone onside has made a massive difference and that for me has been my dafne lead, she’s fabulous and sees patterns where I just can’t see the wood for the trees. At its worst, I figure I’ve got this far, and I’m certainly not giving up now. Cut back for a little while anything and anyone who takes away from you (no need to cut ties, just step back a little and you can pick them up again later)…then one foot in front of the other one day at a time….loads of luck, and I hope you’re soon feeling better x

jackthejoker · Sep 15, 2018

Emj185 said:
Thanks Knikki, I’ll try dropping my Tresiba a little. I didn’t know it took a while too take effect so I’ll keep my eye on that
Appreciate the advice

Just my experience...I dont have type 1 diabetes but my 10 year old daughter has,and for a year and a half I've looked after all aspects of her condition and have found any change in tresiba dose works immediately...

Knikki · Sep 15, 2018

jackthejoker said:
Just my experience...I dont have type 1 diabetes but my 10 year old daughter has,and for a year and a half I've looked after all aspects of her condition and have found any change in tresiba dose works immediately...

Interesting, one of the great things about being a T1D is that we are all different, I guess that your daughter being only 10 will have a higher/better metabolism than me, so the Tresbia will work quicker, as you have found.

It was only my own observations that I expressed caution and looking at the blurb and profiles that show how long Tresbia lasts for in the system and how long changes may take to work their way in.

But thank you for sharing I will eye Tresbia with a little more care from now on

Emilybriggs.94 · Oct 9, 2018

Emj185 said:
Hi All

Just really looking to vent and see if anyone has any suggestions/recommendations for me.

I am 24 years old and have been diabetic since the age of 4. I’ve had moderate levels of diabetes distress for the past 3 years and an ongoing battle with anxiety and depression. I know life is not all that bad, others have it far worse, but the daily worries and effort required by T1D is just becoming something I don’t feel I have the headspace to deal with. I find myself skipping blood tests, and taking insulin with a very ‘suck it and see’ approach. My appetite has always been hit and miss, I easily skip meals.

Has anyone got any little ideas for getting back on track? Even just easy low carb meals or the best approach to starting again with the self care. I have been self funding a Freestyle Libre but the monthly costs of this are becoming prohibitive... I apparently don’t qualify for the grant as I have good hypo awareness, that just feels like a real kick in the teeth right now!!

I know it’s a case of pulling myself together and these are the cards I’ve been dealt, so deal with it but it’s just so blooming wearing!

Any input greatly appreciated.
Thanks in advance Xx

Hi! I am feeling the exact same as your I'm 24 and was diagnosed at 5 years old with type 1! I have the dexcom g5, I suffer from depression and contstanly get told to pull myself together I control mine as much as I can but I totally get that you don't have the headspace for it sometimes, I go through phases of not being great with it and all of a sudden having some sort of mental break down over it all, when I'm trying to cut out carbs I try things like omelette with veggies and hummus and carrot sticks, I'm looking for new meals too as it gets boring doesn't it, glad I'm not the only one feeling like this!
Emily x

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