Someone to speak to

[Nia]

Hey everyone,

I have been feeling pretty alone in my type one journey lately and would really love to connect with others who understand what it’s like. I’ve had type one diabetes for almost 20 years now but no matter how much experience I’ve got there are some days where I feel so alone and burnt out

I want to connect with people who are feeling the same

Hope whoever is reading this has a blessed day x

 

[goodybags]

Hey everyone,

I have been feeling pretty alone in my type one journey lately and would really love to connect with others who understand what it’s like. I’ve had type one diabetes for almost 20 years now but no matter how much experience I’ve got there are some days where I feel so alone and burnt out

I want to connect with people who are feeling the same

Hope whoever is reading this has a blessed day x

hi welcome to the forum it’s a great place to get some support which we all need sometimes

 

[Bruce Stephens]

I have been feeling pretty alone in my type one journey lately and would really love to connect with others who understand what it’s like. I’ve had type one diabetes for almost 20 years now but no matter how much experience I’ve got there are some days where I feel so alone and burnt out

I want to connect with people who are feeling the same

I think that's largely why most of us joined.

 

[gail2]

hello welcome to the forum plenty of T1s on here to help you
gail

 

[Alan44]

Hi and welcome to the forum @Nia

Alan 😉

 

[everydayupsanddowns]

Welcome to the forum @Nia

Sorry you’ve been having a hard time with your diabetes some days. I think a lot of us will understand that.

Diabetes can be relentless and unforgiving at times, and seems to hve a knack of throwing curve-balls and being extra invonvenient and demanding at the worst times.

Diabetes burnout and diabetes distress are increasingly widely recognised by healthcare professionals as important issues that need attention and handling, just as much as physical things like doses.

Not many clinics offer diabetes-specialist psychological support for adults, but you may be able to access some if you are lucky.

Alternatively you may be able to get a referral for some counselling to help work though these challenges.

But know that you aren’t alone in them.

 

[Nia]

I think that's largely why most of us joined.

I’m embarrassed it’s taken me this long to reach out

 

[Nia]

Welcome to the forum @Nia

Sorry you’ve been having a hard time with your diabetes some days. I think a lot of us will understand that.

Diabetes can be relentless and unforgiving at times, and seems to hve a knack of throwing curve-balls and being extra invonvenient and demanding at the worst times.

Diabetes burnout and diabetes distress are increasingly widely recognised by healthcare professionals as important issues that need attention and handling, just as much as physical things like doses.

Not many clinics offer diabetes-specialist psychological support for adults, but you may be able to access some if you are lucky.

Alternatively you may be able to get a referral for some counselling to help work though these challenges.

But know that you aren’t alone in them.

Thank you for your message - I’ve got my review in a weeks time so I will ask for that referral and get the ball rolling..

I’ve got to a point now where I’ve over shared with people who don’t have diabetes such as family members etc and I don’t always share the details of how it’s affecting me mentally. I fear they won’t know how to respond or might just end up finding it too difficult to process

 

[rebrascora]

Hi and welcome.

You are certainly not alone here and we do understand how much "bandwidth" in our brain diabetes can take up. Sometimes letting standards slide a little for a while and just doing the basics for a week or two can help or having a break from the technology can reset your mental approach. I am on MDI but occasionally I have a break from LIbre for a few days when I feel chewed off with my diabetes, especially if it is being difficult and I have perhaps been lured by Libre into trying to micromanage it. After a few days of finger pricking, I can go back to Libre full of appreciation for how much easier it makes life but also reminded that I can survive perfectly well without it. I don't know how you manage your diabetes but I think some people similarly find a pump break helpful in resetting their relationship to diabetes. The technology is great but you can end up feeling like you are becoming a slave to it especially if alarms are going off more frequently and sometimes just reverting to the basics is quite liberating.

If you can give us an idea of anything particular about your diabetes management that is getting to you most, members can perhaps share what helped them deal with it. It is perhaps just a very minor issue which has been the last straw, but finding a better solution for that can help you get back onto an even keel again. There is a very broad range of practical experience and lifestyle variability here to tap into, that there is usually a range of solutions for any one issue. If you feel comfortable to share how you manage your diabetes and what are the particular issues which have led to you feeling burnt out, people can perhaps suggest practical solutions..... or indeed just voicing/typing the issues to people who understand can be cathartic.
I feel that just logging into the forum regularly and comparing notes with others here and learning practical tips and tricks to make life a bit easier and being a member of a community who are facing the same challenges, is really beneficial to my mental outlook. I hope you come to feel the same.

 

[Proud to be erratic]

I’m embarrassed it’s taken me this long to reach out

Hello @Nia, don't look back and don't be embarrassed. When you were diagnosed so much was different. The understanding of Diabetes was basic, the digital age barely existed and the tech we can now pretty routinely turn to just wasn't there.

Have you come across the book "Think Like a Pancreas" by Gary Scheiner? He is himself T1, a US citizen working as a Specialist in the world of Diabetes care. I found his chatty style of writing helpful and very useful. Where he uses numerical examples to illustrate a point he also helpfully provides European units alongside the American units.

I’ve got to a point now where I’ve over shared with people who don’t have diabetes such as family members etc and I don’t always share the details of how it’s affecting me mentally. I fear they won’t know how to respond or might just end up finding it too difficult to process

I freely share, almost certainly over-share, with anyone who asks. I was intrigued by my Consultant, a year ago, quite specifically turning to my wife and explaining to her that I routinely make over 300 decisions daily about my D management; my Consultant told her I'm doing that because my D is, sublimanally, at the forefront of everything else that I do. Intrigued: because my Consultant had picked up a hint of frustration on my wife's part, which I didn't notice, who was having her moment of finding it all difficult to process.

For me, finding the balance between explaining why I want extra time for my pre-bolus [or whatever] and disrupting "the plan" is still tricky. Somewhat selfishly I'm trying to get my D management as "right" as I possibly can - sometimes at the expense of finding that "balance" of going with the flow. There are no right answers - this Forum allows us to document such moments amongst others who themselves understand: it can sometimes our D can just be frustrating, demanding and mentally draining.

Welcome to the Forum.

 

[mashedupmatt]

Hi @Nia and welcome to the forum - as mentioned before Diabetes Distress and Diabetes Burnout is not uncommon at all, there are times when it all just gets a bit too much, and unfortunately the emotional side of the condition is often overlooked - you should be able to access "Talking Therapy" via your healthcare team with trained pschologists, but how long it would take to get a referral is anyone's guess - but definitely worth asking about - in the meantime ask any questions you may have on here - we're a friendly bunch and we're all here to help and support each other

 

[Nia]

Hi and welcome.

You are certainly not alone here and we do understand how much "bandwidth" in our brain diabetes can take up. Sometimes letting standards slide a little for a while and just doing the basics for a week or two can help or having a break from the technology can reset your mental approach. I am on MDI but occasionally I have a break from LIbre for a few days when I feel chewed off with my diabetes, especially if it is being difficult and I have perhaps been lured by Libre into trying to micromanage it. After a few days of finger pricking, I can go back to Libre full of appreciation for how much easier it makes life but also reminded that I can survive perfectly well without it. I don't know how you manage your diabetes but I think some people similarly find a pump break helpful in resetting their relationship to diabetes. The technology is great but you can end up feeling like you are becoming a slave to it especially if alarms are going off more frequently and sometimes just reverting to the basics is quite liberating.

If you can give us an idea of anything particular about your diabetes management that is getting to you most, members can perhaps share what helped them deal with it. It is perhaps just a very minor issue which has been the last straw, but finding a better solution for that can help you get back onto an even keel again. There is a very broad range of practical experience and lifestyle variability here to tap into, that there is usually a range of solutions for any one issue. If you feel comfortable to share how you manage your diabetes and what are the particular issues which have led to you feeling burnt out, people can perhaps suggest practical solutions..... or indeed just voicing/typing the issues to people who understand can be cathartic.
I feel that just logging into the forum regularly and comparing notes with others here and learning practical tips and tricks to make life a bit easier and being a member of a community who are facing the same challenges, is really beneficial to my mental outlook. I hope you come to feel the same.

Thank you for this message - what you said about micromanaging is spot on.. that's exactly how it feels with all the tech, charts and targets etc -- it all feels too much.

I've definitely let standards slide more recently.. I've got a few significant changes happening this year, I'm getting married and moving abroad so it's a new chapter for sure, and the lead up to it has meant my diabetes management has been a bit messy - I'm occasionally telling myself "it's alright.. it won't be like this once I'm "settled", I can "sort it" once this move happens" (silly, I know..)

I like the idea of having a break from tech - there's periods when I'm changing my Dexcom I have had moments where I've left a gap for about an hour as I tend to become "busy" doing something more important apparently.. but really it makes me feel like I'm off the grid! no charts staring back at me

Have to admit I've let the carb counting slip once again.. for the hundredth time it feels like. When it's good and I've got the rhythm, I somehow manage to eff it up and then decide I could just do a bit of guesswork for a bit. I don't even know what my last discussed ratio is anymore.. all I know is that it's moved around a bit from 1:8 to 1:12.

On the plus side, my last review was in Aug last year and my Hba1c was 39 (I switched from Libre 2 to Dexcom G7 a few months before then)

but since then, I've had too many ups and downs (it was then when I discovered I was going to be getting married, and moving abroad in 2025..) and now I've got this crazy anxiety for my next review which is in a weeks time, where I fear the needle has moved... it sounds like I'm really looking for perfection

 

[Nia]

Hi @Nia and welcome to the forum - as mentioned before Diabetes Distress and Diabetes Burnout is not uncommon at all, there are times when it all just gets a bit too much, and unfortunately the emotional side of the condition is often overlooked - you should be able to access "Talking Therapy" via your healthcare team with trained pschologists, but how long it would take to get a referral is anyone's guess - but definitely worth asking about - in the meantime ask any questions you may have on here - we're a friendly bunch and we're all here to help and support each other

Thanks @mashedupmatt

I will look into this, never heard of this "Talking Therapy" before..

 

[Leadinglights]

Obviously a move to a new country is going to be a whole new experience so it would be worth while looking at what the system is there for health care and support for managing Type 1 diabetes so you know what to expect and can plan accordingly.
It must be exciting at the same time as being filled with some apprehension. Getting yourself in a better place now hopefully can take some of the pressure away.

 

[rebrascora]

Wow! An HbA1c of 39 is really great but that means you have plenty of wriggle room to relax whilst you deal with this stressful phase of your life. Most consultants are very happy with anything under 56 I think, although the focus is now shifting much more to Time in Range and there the target is 70%. I think it is easy to push yourself to maintain really excellent results because you have got them before, so you put pressure on yourself to maintain that level, when it is quite acceptable to ease your foot off the pedal and relax it a bit, especially when life is throwing curve balls at you, so I think you need to cut yourself some slack.

Personally I don't bother to carb count but that is partly because I follow a low carb way of eating. I think with CGM carb counting is perhaps less important than it used to be when we only had finger pricks to see what levels were a few times a day, whereas now we can see it 24/7 and correct as and when we need to, so again, don't beat yourself up about not being as rigorous about carb counting. The tech is there to help us not to judge us, although I know when you are stressed it can sometimes feel like that and that is when I take a break and after a few days it resets my perspective and I am so grateful for how much easier it makes things.

We all know perfection isn't possible but it is tempting to keep pushing ourselves to get as good results as we can, when really we just need to get "good enough" results. It is about "balance".

I find my diabetes ebbs and flows. I have good spells where it is relatively smooth sailing and then I have patches where it is really quite challenging and I just have to keep doing all the right things until I get back into calmer waters. I have learned that this is normal and I accept the less good patches for what they are, part of life and enjoy the plain sailing when it happens. Nothing in life is good all the time, so you have to take the rough with the smooth and make the best of it, without being too hard on yourself.

 

[Flower]

Hi and welcome @Nia glad you’ve joined us. I’m sorry you’re feeling worn down and alone with diabetes.

You’re definitely not alone, it doesn’t matter how long you’ve had to juggle diabetes sometimes it can become overwhelming, exasperating & isolating. I think you only fully get its relentlessness if you’re living with it.

You’ve got a lot going on competing for headspace along with diabetes. I find dealing with diabetes can feel like the final straw when my head is full up of other stuff. It’s the having to keep doing it no matter what.

Hopefully as some of the big changes such as moving abroad are sorted you can put your diabetes back in its box and won’t feel so burnt out. Your results are amazing and you need to give yourself a huge well done for that.

Joining this forum & having a read of posts was such a relief to me finding others struggling with the same challenges, until then I thought I was the only one struggling so much.

I hope it helps you feel less alone. Best wishes.

 

[Nia]

Wow! An HbA1c of 39 is really great but that means you have plenty of wriggle room to relax whilst you deal with this stressful phase of your life. Most consultants are very happy with anything under 56 I think, although the focus is now shifting much more to Time in Range and there the target is 70%. I think it is easy to push yourself to maintain really excellent results because you have got them before, so you put pressure on yourself to maintain that level, when it is quite acceptable to ease your foot off the pedal and relax it a bit, especially when life is throwing curve balls at you, so I think you need to cut yourself some slack.

Personally I don't bother to carb count but that is partly because I follow a low carb way of eating. I think with CGM carb counting is perhaps less important than it used to be when we only had finger pricks to see what levels were a few times a day, whereas now we can see it 24/7 and correct as and when we need to, so again, don't beat yourself up about not being as rigorous about carb counting. The tech is there to help us not to judge us, although I know when you are stressed it can sometimes feel like that and that is when I take a break and after a few days it resets my perspective and I am so grateful for how much easier it makes things.

We all know perfection isn't possible but it is tempting to keep pushing ourselves to get as good results as we can, when really we just need to get "good enough" results. It is about "balance".

I find my diabetes ebbs and flows. I have good spells where it is relatively smooth sailing and then I have patches where it is really quite challenging and I just have to keep doing all the right things until I get back into calmer waters. I have learned that this is normal and I accept the less good patches for what they are, part of life and enjoy the plain sailing when it happens. Nothing in life is good all the time, so you have to take the rough with the smooth and make the best of it, without being too hard on yourself.

Thank you @rebrascora I like what you say about balance over perfection.. never really thought about it like that

It's so refreshing to hear from others. I keep re-reading some of the comments on this thread so far and genuinely I feel it's lightening the load already.. just knowing that others understand and are going through similar things makes such a big difference.

It's comforting to remember we're all just doing our best and trying to find that balance, but so easy to fall into that mindset of wanting perfection and consistently good readings... I need to work on acceptance.

Thank you for taking the time to respond and for your kind words

 

[Nia]

Hi and welcome @Nia glad you’ve joined us. I’m sorry you’re feeling worn down and alone with diabetes.

You’re definitely not alone, it doesn’t matter how long you’ve had to juggle diabetes sometimes it can become overwhelming, exasperating & isolating. I think you only fully get its relentlessness if you’re living with it.

You’ve got a lot going on competing for headspace along with diabetes. I find dealing with diabetes can feel like the final straw when my head is full up of other stuff. It’s the having to keep doing it no matter what.

Hopefully as some of the big changes such as moving abroad are sorted you can put your diabetes back in its box and won’t feel so burnt out. Your results are amazing and you need to give yourself a huge well done for that.

Joining this forum & having a read of posts was such a relief to me finding others struggling with the same challenges, until then I thought I was the only one struggling so much.

I hope it helps you feel less alone. Best wishes.

Hi @Flower - thank you for your kind words This forum is becoming my new fave - wish I had given it a chance sooner.

Hope you're having a wonderful Sunday

 

[Spannerx]

Hi there,

As strange as it is I want to post how diabetes changed my life for the positive.

It was boxing day in 2008 I was drinking about 6 letters of what ever I could get a hold of for a couple of months prior I had horrible mood swings and was genuinely unhappy In life although I was young at 13 I was definitely not happy I had no friends and felt as if I didn't fit in at school. Anyway on that boxing day I had a fever I was breathing sharply and fast I was vomiting every 5 minutes and had asked my parents to take me to a and e because I felt like I was going to die and it was not just a normal illness. Fast forward into the a and e waiting room and I was drifting in and out of consciousness I then remember waking up on a hospital bed with nurses running tests. My mum had this point asked if it could be diabetes as I was drinking a lot and had mood swings. This is when both my lipids and blood sugar were off the scale for how high it was. Next thing I remember waking up in an ambulance being transferred to a children's hospital I remember looking at my mum and saying I don't want to die and I love you.

I then become unconscious and woke up the next day. It turns out this whole ordeal was DKA and I came in at the right time. I was in hospital a week and was sent on my way as a type 1 diabetic.

My mum later told me that a doctor pulled her aside and informed her that he wasn't sure that I would pull through and that it's possible it could go either way.

Why am I telling this story of how I was diagnosed because since that experience I feel like the most lucky person in the world I survived a near death experience and it completely changed my mental perspective on life. I went from feeling like I never was going to fit in to making a solid group of friends that I still stay in touch with 17 years later in a matter of months I have had a positive attitude to life and how precious it is ever since that experience and although I am not positive with situations I have in life I am always happy to be alive. It's also to let you know that you are never alone everyone here has a journey and story behind their road of diabetes for some it's negative for me however it has changed my life at such an early age for the better I have never struggled with mental health since that experience and I think it's because deep down I know how precious my life is and I am grateful for that.

 

[Spannerx]

I would also like to acknowledge your frustration of the pressure to do everything carb count and maintain a range. All I can say I do what ever your comfterble with just be open with the team about it I know you will feel judged but going in honest.

As I said I was diagnosed 17 years ago and only was really in the right mindset to start carb counting 6 years ago on the point that it was short term I explained this to the team and they were happy ito work out the ratio with me and it's worked since. However I may be a slight exception to the rule due to how much insulin I have to take. And that's the point I'm getting to no one knows your body better than yourself. You know what your comfterble with doing if your open about it I'm sure the team will understand too and Lay off the pressure a bit. They know how diabetes works and what can help over a general rule however they don't know us. Lots of things effect how we respond to insulin and carbs.

This ranges from our metabolism stomach microbiome and hormone balances. I think this should be the next era of diabetes research. Is to measure our hormones our metabolism our microbiome our immune response to certain things this will help doctors understands that diabetes is not a one shoe fits all illness and there are far more factors that can effect how we respond to it

It was only since I got the libra for a constant data stream of my blood sugar and a diary for how much insulin I took before I felt listened to about my high insulin usage.