Sick of all this

[Chasisfedup]

Hi, ive had type 1 for 28 years. Its always been a struggle for me, whatever I did my levels were high and I literally just stopped giving a toss, I never did blood tests, always struggled with my weight, any exercise I did I'd get higher sugars then crash low in the middle of the night.
I had a phase of not waking up until late into the afternoon, to be of missed calls from work on my phone (24hr insulin was too high). My kidneys were shot at least 12-15 years ago and now I'm having massive issues with my eyes. I had an injection in the left one 3 years ago and since Jan this year I've had vessels in both eyes burst, had lazering every month since jan, which i really struggle with, and now, due to no end of lazering and STILL getting bleeds I've been signed off work for 6 weeks so far because I can't see well enough to do my job and today the optholomogy has decided to put me for surgery on both eyes.
Multiple times I've wished I could just snuggle into my duvet and not wake up. I'm SO done, fed up, beaten and if just ONE person is struggling I'd be delighted to have someone with similar issues to speak to.

I'm only 36 and the thought of living as many years to come fills me with misery. I live alone, NEED my job, am facing redeployment and I don't kbow the outcome of surgery or, indeed, life.

Anyone else?
Thanks guys for reading

 

[rebrascora]

Hi and welcome Chas.

So very sorry to hear about how much you have struggled with your diabetes over the years and that it is affecting your kidneys and sight now.
I am relatively newly diagnosed myself so can't offer any personal experience you could relate to but we have a new member @Lewis Mushin whose story is very similar and hopefully he may be able to give you some support/mentoring as he has also been through the mill with eye injections and lazer treatment. He posted a video in his introduction which I think is incredibly brave and inspiring and I hope it will give you some hope and maybe a way to move forward...

https://forum.diabetes.org.uk/boards/threads/my-diabetic-story.94634/

Hopefully he will find time to view this thread now that I have tagged him and offer you some personal insight, but please push your diabetes nurse/clinic staff for more support to manage your diabetes. We can also offer practical advice here, but I think a good starting point would be an intensive education course like DAFNE (Dose Adjustment For Normal Eating) or your local equivalent. Don't be fooled by the title, this is not just about carb counting but a huge range of situations to help you manage your diabetes more effectively and can help you get access to tech which might make managing your diabetes easier and just having access to a highly qualified and trained but most importantly non judgmental DSN over 5 whole days could be invaluable for you.

Please don't give up hope. You can turn things around with the right support and mind set.

 

[Flower]

Hi and welcome @Chasisfedup , glad you've joined us

I'm really sorry for all the tough stuff you're dealing with. Diabetes complications are terrifying and it is hard to keep juggling everything we need to. I've been through a similar challenge with my sight a few decades back but I'm still here and very grateful for that.

The surgery will probably be vitrectomy where all the jelly, trapped blood and debris is cleared out of your eye and replaced with a liquid. The relief of seeing light again is amazing and should there be further retinal bleeds they wash away a lot quicker rather than spending months trapped inside your eye jelly and obscuring sight.

This is something I wrote about my battle with proliferative retinopathy & sight loss and how I am now. I reached an incredibly low point where I didn't think I could continue but the surgery and some stability in the sight I had took the pressure off a bit and I scrambled back to a better place where I could cope. It took me a long time before I could even write about it because I found it so overwhelmingly frightening and exhausting.

Sight threatening Retinopathy

This is my experience of living with sight threatening retinopathy. It has taken me about 30 years post retinopathy diagnosis to start to ta...

diabetest1ghtrope.blogspot.com

I really hope the surgery will help you in the same way and give you hope for the future. Best Wishes.

 

[Amity Island]

Hi, ive had type 1 for 28 years. Its always been a struggle for me, whatever I did my levels were high and I literally just stopped giving a toss, I never did blood tests, always struggled with my weight, any exercise I did I'd get higher sugars then crash low in the middle of the night.
I had a phase of not waking up until late into the afternoon, to be of missed calls from work on my phone (24hr insulin was too high). My kidneys were shot at least 12-15 years ago and now I'm having massive issues with my eyes. I had an injection in the left one 3 years ago and since Jan this year I've had vessels in both eyes burst, had lazering every month since jan, which i really struggle with, and now, due to no end of lazering and STILL getting bleeds I've been signed off work for 6 weeks so far because I can't see well enough to do my job and today the optholomogy has decided to put me for surgery on both eyes.
Multiple times I've wished I could just snuggle into my duvet and not wake up. I'm SO done, fed up, beaten and if just ONE person is struggling I'd be delighted to have someone with similar issues to speak to.

I'm only 36 and the thought of living as many years to come fills me with misery. I live alone, NEED my job, am facing redeployment and I don't kbow the outcome of surgery or, indeed, life.

Anyone else?
Thanks guys for reading

Hi @Chasisfedup

You know; when I hear experiences like this it makes sense to me what a consultant once told me a good few years ago. He said something to the effect of people with type 1 diabetes should be allowed to be signed off from work, so they can commit more time and effort into trying to take control of a very serious condition. Why should we have to juggle life, work and diabetes? It's more than enough on it's own. It seems to have been side lined in terms of it's difficulties.

My own view is, if someone with type 1 wants to juggle everything then they should be encouraged to do so, but for those who struggle or don't have it in them to juggle everything, they should receive life long finiancial support to help them focus on their condition.

I really hope you can get some decent help. I know there are those that struggle no matter how hard they try, but surely there must be someone out there who can help you more.

Can you explain some of the sorts of things that you have struggled with? Why has it been difficult to get blood sugars under control? Is it just the randomness in insulin ratios from day to day? Is it a basal problem keeping background steady? Is it certain foods / fats/ proteins being difficult to bolus for?

Perhaps we can help in some way....

 

[Chasisfedup]

Hi and welcome @Chasisfedup , glad you've joined us

I'm really sorry for all the tough stuff you're dealing with. Diabetes complications are terrifying and it is hard to keep juggling everything we need to. I've been through a similar challenge with my sight a few decades back but I'm still here and very grateful for that.

The surgery will probably be vitrectomy where all the jelly, trapped blood and debris is cleared out of your eye and replaced with a liquid. The relief of seeing light again is amazing and should there be further retinal bleeds they wash away a lot quicker rather than spending months trapped inside your eye jelly and obscuring sight.

This is something I wrote about my battle with proliferative retinopathy & sight loss and how I am now. I reached an incredibly low point where I didn't think I could continue but the surgery and some stability in the sight I had took the pressure off a bit and I scrambled back to a better place where I could cope. It took me a long time before I could even write about it because I found it so overwhelmingly frightening and exhausting.

Sight threatening Retinopathy

This is my experience of living with sight threatening retinopathy. It has taken me about 30 years post retinopathy diagnosis to start to ta...

diabetest1ghtrope.blogspot.com

I really hope the surgery will help you in the same way and give you hope for the future. Best Wishes.

Hi, thank you so much for replying. It makes a huge differdifference just feeling you're not alone in what you're dealing with. It's so isolating.

Despite my eyes I'm just sick fed up of diabetes. It's like looking after a toddler 24/7 for life. It dictates everything.

I sound like a proper misery guts - im honestly not! Im avtually very upbeat and happy but i go straight from that to "had enough, hope I die soon" in waves. Those waves are more regular this year due to the ongoing stress of my eyes.

Glad you're in such a happier place now and All worked out well, and thanks again for your reply and well wishes. X

 

[Chasisfedup]

Hi and welcome Chas.

So very sorry to hear about how much you have struggled with your diabetes over the years and that it is affecting your kidneys and sight now.
I am relatively newly diagnosed myself so can't offer any personal experience you could relate to but we have a new member @Lewis Mushin whose story is very similar and hopefully he may be able to give you some support/mentoring as he has also been through the mill with eye injections and lazer treatment. He posted a video in his introduction which I think is incredibly brave and inspiring and I hope it will give you some hope and maybe a way to move forward...

https://forum.diabetes.org.uk/boards/threads/my-diabetic-story.94634/

Hopefully he will find time to view this thread now that I have tagged him and offer you some personal insight, but please push your diabetes nurse/clinic staff for more support to manage your diabetes. We can also offer practical advice here, but I think a good starting point would be an intensive education course like DAFNE (Dose Adjustment For Normal Eating) or your local equivalent. Don't be fooled by the title, this is not just about carb counting but a huge range of situations to help you manage your diabetes more effectively and can help you get access to tech which might make managing your diabetes easier and just having access to a highly qualified and trained but most importantly non judgmental DSN over 5 whole days could be invaluable for you.

Please don't give up hope. You can turn things around with the right support and mind set.

Thank you. The video wont work for me, i might try youtube itself and see if i can find it. Thanks for tagging him, would be helpful for me to hear from others in a similar boat. X

 

[Chasisfedup]

Hi @Chasisfedup

You know; when I hear experiences like this it makes sense to me what a consultant once told me a good few years ago. He said something to the effect of people with type 1 diabetes should be allowed to be signed off from work, so they can commit more time and effort into trying to take control of a very serious condition. Why should we have to juggle life, work and diabetes? It's more than enough on it's own. It seems to have been side lined in terms of it's difficulties.

My own view is, if someone with type 1 wants to juggle everything then they should be encouraged to do so, but for those who struggle or don't have it in them to juggle everything, they should receive life long finiancial support to help them focus on their condition.

I really hope you can get some decent help. I know there are those that struggle no matter how hard they try, but surely there must be someone out there who can help you more.

Can you explain some of the sorts of things that you have struggled with? Why has it been difficult to get blood sugars under control? Is it just the randomness in insulin ratios from day to day? Is it a basal problem keeping background steady? Is it certain foods / fats/ proteins being difficult to bolus for?

Perhaps we can help in some ways consultant who

 

[Chasisfedup]

A smart consultant!
Therr was none of this bolus, carbs to insulin ratio stuff when I got it. It was 2 injections a day, no room for changing doses, ifvyou were high - go a ealk. Stau away from fruit and sweets.
I dont feel i need help with it, jist to chatvto someone feelingvthe same way about it and going theough similar upheavals due to the side effects of diabetes.

Sick of being dictated to by an illness. Can't eat anything without counting carbs and doing units of insulin any time you decide to have an apple. It's tiresome,tedious and no way to live every single day.

As I say, there's a reason people with chronic illnesses died before drugs - it's no way to live.
I don't speak for everyone, though! X

 

[mark king]

Welcome and chin up @Chasisfedup.
We're all very much in the same boat as you but with varying levels and types of Diabetes, as can be seen in our signatures.
I remember back in 1987 when I was first diagnosed of saying I would control the Diabetes and not the other way around.
While I was in hospital I read up various hand out Diabetic books that were available and one that I still have to this day called Carbs & Cals or though I do also have it on my mobile now too.
To simplify our illness the bit in our body that calcs the insulin portion control has stopped working so we must do the calc for it.
Your medical team will set up your start settings which will put you in the ball park for reasonable control.
Then by taking a blood sample [finger prick] and using a meter to read your test strip and knowing your food carbs you can work out your insulin requirement amount.
This is where the Carbs & Calcs book came in handy at the beginning.

As time goes by you will begin to recognise similar sized foods and remember what their carbs are. ie small egg sized potatoes are about 10-12 Carbs. You can easily work out chip portions by compiling in you head how many chips make a small egg sized potato. As you get more confident you will be able to expand your food locker and be reasonably sure with your calculations.
Technology has jumped way forward compared to where it was when I started. My first needle was a L O N G Brass & Glass beast that had to be stripped down and suspended in a plastic tube in a sterile solution after each use.
I did wonder how I would cope, fortunately the company I worked for were very helpful allowing me space and time if I needed to get a snack to lift my Blood Sugar back into normal range.
But things did improve and did get better for instance the needle moved onto the disposable needle which was tiny in comparison and much easier to use and carry about with me. Next came preloaded pen needles which could be concealed in your top pocket and inject through your clothing and people sitting next to you would not even know you had injected.
These days I wear a wireless and tubeless Omni-pod pump for insulin delivery and wear a Free style Libre 2 sensor to monitor my blood sugar readings 24/7. Both are quite small the pod is about the size of a small match box while the blood sensor is like a £2 coin. A small phone like device is used to wirelessly talk to the pump and add your meal time instructions which take less than 5 mins to complete.
Both those items have been the best thing I ever moved on to and I would suggest them to you, other types are available. I also did some diabetic courses that the NHS made available along with other diabetic patients.
You do need to have gained an understanding of what you are trying to achieve for your body but they do give full training on how to apply and use them.
Like you some years back I had to have a course of laser work done through the year but some alterations in my diet sorted that out over time and also helped my Hba1c level too.

I'm 77 now still riding my e-bike [helps on the hills] building my 0 gauge model railway in my 30ft shed/workshop, driving about to visit places of interest with my wife and plenty of gardening etc.

Make your Diabetic nurse your best friend and trust their advice and follow it.

Set small targets -- make plans -- achieve goals.

Best of luck

 

[trophywench]

Chas - as Mark has just said - things can indeed be a lot easier now than when we both started - except in some ways they aren't because the new things also take time and effort to get your head around and get used to finding how they can improve your life - and some are worth the effort, others aren't for me - because we are all different and a bit like his e-bike, there's just no point me spending money on one since I've never yet managed to master the basic art of cycling! I did try 15 years ago, but I still fell off when I stopped, same as I did aged 10. Just blooming hurts more is all .....

Carb counting and calculating bolus doses is repetitively boring but there again if you eat the same-ish things, then you know what the bolus will be, hence the only thing that will vary is the pre-food BG. It is far quicker to scan a Libre sensor though than it is to test the BG and once I know the sensor is reading a true reflection of my actual BG, I trust it. I enjoy eating to be honest, so test-calculate-bolus isn't really that much of a chore - more a necessary evil I'm stuck with - like having straight hair and a bunion etc. Oh - and parents who never bought either of their daughters a bike of course ....... (most likely couldn't have afforded to do so, had we been boys anyway!)

Don't let the barstewards (of which, Type 1 is one) grind you down Chas!!

 

[Chasisfedup]

Welcome and chin up @Chasisfedup.
We're all very much in the same boat as you but with varying levels and types of Diabetes, as can be seen in our signatures.
I remember back in 1987 when I was first diagnosed of saying I would control the Diabetes and not the other way around.
While I was in hospital I read up various hand out Diabetic books that were available and one that I still have to this day called Carbs & Cals or though I do also have it on my mobile now too.
To simplify our illness the bit in our body that calcs the insulin portion control has stopped working so we must do the calc for it.
Your medical team will set up your start settings which will put you in the ball park for reasonable control.
Then by taking a blood sample [finger prick] and using a meter to read your test strip and knowing your food carbs you can work out your insulin requirement amount.
This is where the Carbs & Calcs book came in handy at the beginning.

As time goes by you will begin to recognise similar sized foods and remember what their carbs are. ie small egg sized potatoes are about 10-12 Carbs. You can easily work out chip portions by compiling in you head how many chips make a small egg sized potato. As you get more confident you will be able to expand your food locker and be reasonably sure with your calculations.
Technology has jumped way forward compared to where it was when I started. My first needle was a L O N G Brass & Glass beast that had to be stripped down and suspended in a plastic tube in a sterile solution after each use.
I did wonder how I would cope, fortunately the company I worked for were very helpful allowing me space and time if I needed to get a snack to lift my Blood Sugar back into normal range.
But things did improve and did get better for instance the needle moved onto the disposable needle which was tiny in comparison and much easier to use and carry about with me. Next came preloaded pen needles which could be concealed in your top pocket and inject through your clothing and people sitting next to you would not even know you had injected.
These days I wear a wireless and tubeless Omni-pod pump for insulin delivery and wear a Free style Libre 2 sensor to monitor my blood sugar readings 24/7. Both are quite small the pod is about the size of a small match box while the blood sensor is like a £2 coin. A small phone like device is used to wirelessly talk to the pump and add your meal time instructions which take less than 5 mins to complete.
Both those items have been the best thing I ever moved on to and I would suggest them to you, other types are available. I also did some diabetic courses that the NHS made available along with other diabetic patients.
You do need to have gained an understanding of what you are trying to achieve for your body but they do give full training on how to apply and use them.
Like you some years back I had to have a course of laser work done through the year but some alterations in my diet sorted that out over time and also helped my Hba1c level too.

I'm 77 now still riding my e-bike [helps on the hills] building my 0 gauge model railway in my 30ft shed/workshop, driving about to visit places of interest with my wife and plenty of gardening etc.

Make your Diabetic nurse your best friend and trust their advice and follow it.

Set small targets -- make plans -- achieve goals.

Best of luck

Hi, thanks for replying. My issue isn't coming to terms with it, it's that I'm sick to death of having it and it controlling my entire life. 28 years of being docgayed to by my body and it's failures.

Glad you're contented and still actively happy! X

 

[Chasisfedup]

Hi, thanks for replying. My issue isn't coming to terms with it, it's that I'm sick to death of having it and it controlling my entire life. 28 years of being dictated to by my body and it's failures.

Glad you're contented and still actively happy! X

 

[DaveB]

You are not alone and a good few years back the meds solutions etc were way behind where they are now. Take things a step at a time. Whatever any one says, many T1s do need to reduce their carb intake and can't 'eat what they like'. This should have a large impact on blood sugar. I'm not sure what insulin regime you are on but Basal/Bolus is now the standard for T1s and is what I use. Aside from the need to finger-prick test you may be able to get NHS approval to use a Freestyle Libre BS sensor system which is brilliant. I self-fund mine but as your control is not good you may meet the criteria for a free system. You may even be a candidate for a kidney transplant if they are that bad. My wife has just had hers at age 76. They are more available if you are older.

 

[Chasisfedup]

You are not alone and a good few years back the meds solutions etc were way behind where they are now. Take things a step at a time. Whatever any one says, many T1s do need to reduce their carb intake and can't 'eat what they like'. This should have a large impact on blood sugar. I'm not sure what insulin regime you are on but Basal/Bolus is now the standard for T1s and is what I use. Aside from the need to finger-prick test you may be able to get NHS approval to use a Freestyle Libre BS sensor system which is brilliant. I self-fund mine but as your control is not good you may meet the criteria for a free system. You may even be a candidate for a kidney transplant if they are that bad. My wife has just had hers at age 76. They are more available if you are older.

Hi, thanks for replying. Yes I only eat eggs, olives and small amounts of steamed veg as they're the only things I can eat without thinking about insulin and blood tests. Eat a bit more free at weekends.

Just sick of it ruling my every day.

 

[Inka]

Hi, thanks for replying. My issue isn't coming to terms with it, it's that I'm sick to death of having it and it controlling my entire life. 28 years of being docgayed to by my body and it's failures.

Glad you're contented and still actively happy! X

I had Diabetes Burnout recently and am still suffering from it on and off. Type 1 is bl**dy relentless and it does get you down day after day. I found external stresses started my burnout off. Coping with Type 1 on top of other stuff was just the final straw.

What helped me was simplifying things - same breakfast, same lunch - no carb counting needed. You say you don’t eat many carbs. I actually found that made control harder. It made me get highs kind of breaking through and delayed, or just random. Also, you shouldn’t have to starve yourself.

You mention that things were kind of easier on the older two injections a day routine. There’s no reason why you can’t go back to that if you choose - fixed doses, set amount of carbs. You know it’s less flexible, but in some ways it’s less mental effort.

I agree with @Amity Island I think there should be more financial help and support and less expectation of Type 1s just getting on with things. It’s really hard working and managing the diabetes. It’s hard looking after children and still trying to focus on work and the barstewarding diabetes. It’s just hard.

I hope knowing that others struggle too helps you.

 

[rebrascora]

I too follow a low carb way of eating but you do still need to monitor your levels and inject basal (background) insulin when you are eating low carb and sometimes add a bit of quick acting for protein too.

Can you tell us which insulin(s) you have and when you currently use them. Are you injecting once daily, twice daily or more or not at all some days?

I agree that Freestyle Libre sensors might enable you to feel more in control as you can see what your levels are doing day and night and better understand how to manage it and it is so quick and easy to scan and get a reading. Libre 2 also has alarms to alert you to when you are going high or low so you can take action before you go too far out of range.

If your levels are constantly high that will have a big impact on how you feel emotionally and that will make your diabetes a much bigger burden on your life than it actually should be. If you could make a concerted effort, particularly during these few weeks that you are signed off to test at least 5 times daily and get support from you diabetes clinic.... make a nuisance of yourself if necessary. It is their job to support you and you clearly need support. Ask about Freestyle Libre. Ask about different insulins. Show that you want to get things under control because you will feel so much better when your BG levels are stable and in range and your perspective about your diabetes can and will change.

You deserve to be better supported and have a better life, so please get some professional help.

 

[Amity Island]

I had Diabetes Burnout recently and am still suffering from it on and off.

Inka, sorry to hear that, it certainly hasn't stopped you from helping others and making this a great forum!

 

[Inka]

Inka, sorry to hear that, it certainly hasn't stopped you from helping others and making this a great forum!

Thanks @Amity Island I find being on the forum a great help because I know there are people here who understand, and not feeling so alone can help massively when people are struggling. I think the key thing is to acknowledge that Type 1 is exhausting and relentless. That way you’re kinder to yourself.

I know we often see stories of people with Type 1 going to the N Pole, winning medals, effortlessly flying the world in their career as a top CEO, navigating the Amazon with only a ten-pack of Dextro tabs and 50 gallons of water that they merrily carry on their back while skipping through the jungle, but many of us don’t find it as easy, and that’s not due to weakness or a lack of grit.

I also think the mental burden of it is grossly underestimated.

 

[SB2015]

Hi @Chasisfedup . I am sorry to hear about the difficulties you are experiencing, alongside the complications. I am another who has experienced diabetes burnout. I took a long time before I asked for help, but was pleased that I did eventually do so (thanks to people on here) . I was finally honest with my Consultant about just how monad I felt. The support didn’t take away the relentlessness of managing our T1, but it helped to change my attitude towards it.

For me access to the Libre sensor helped, as did a pump, but we are all different.

If you are in contact with your team and feel able to do so, do ask for help.

 

[Chasisfedup]

I had Diabetes Burnout recently and am still suffering from it on and off. Type 1 is bl**dy relentless and it does get you down day after day. I found external stresses started my burnout off. Coping with Type 1 on top of other stuff was just the final straw.

What helped me was simplifying things - same breakfast, same lunch - no carb counting needed. You say you don’t eat many carbs. I actually found that made control harder. It made me get highs kind of breaking through and delayed, or just random. Also, you shouldn’t have to starve yourself.

You mention that things were kind of easier on the older two injections a day routine. There’s no reason why you can’t go back to that if you choose - fixed doses, set amount of carbs. You know it’s less flexible, but in some ways it’s less mental effort.

I agree with @Amity Island I think there should be more financial help and support and less expectation of Type 1s just getting on with things. It’s really hard working and managing the diabetes. It’s hard looking after children and still trying to focus on work and the barstewarding diabetes. It’s just hard.

I hope knowing that others struggle too helps you.

Hi, thank you so much for replying, it certainly does help hearing from others who are/have been utterly fed up.

I think you misunderstood what I was saying about the 2 injections a day - I ment thays why I struggled so much to control my diabetes as a teen because it was so regimented and considerably less understood than it is now. It was all about sugar and not eating it back then, it's developed A LOT in about 20 years.

Strange how things work, my uncle is diabetic also and like you, eats the same thing does the same activities daily and STILL his levels dance around. Due to fear of eye issues I just don't eat anything that requires much insulin, even veg makes my sugars rise and the carb book and specialists say not to include them in the carb counting. It's just not worth the effort or stress. Luckily I have a weird body who barely gets thirsty or hungry, I can easily go til 20pm without food or liquid, so I don't see it as starving, haha.

I agree too that financial support should be available, even just to buy healthy shopping. I'm lucky I now have a decent paying job, but I didn't used to and many don't and healthy, fresh food is expensive. We also have to make sure we always have something on hand in case of lows. It's all especially difficult for those struggling financially.

Thanks again for replying, I really appreciate it. Also love your name, as someone interested in the inca and having a Charlie bear named inka! x