Type 1 diabetic for 18 years, finally have given up and wonder if anyone else feels like I do

[S1994]

Hello,
I've never made a post before and don't know if I'm doing this right?

I was diagnosed with type 1 diabetes 18 years ago but it has never been controlled and has ruined my life ever since. Not looking for sympathy or feeling sorry for myself but none of the support or clinics have ever been helpful for me and I have never been able to come to terms with it. I have been to different areas and clinics and tried therapy and psychology services at various times but it hasn't helped for me. My best hba1c result was in 2012 and was 8.7 (I think), but I haven't had a reading below 16 in about 8 years now, usually my blood sugar is over 20. I have tried a lot of different insulins with a pen and pump, again it didn't make life any easier (I now just use Levemir pre filled pens) I stopped going to clinics about 4 years ago and have given up on this condition completely, I wouldn't call it diabetes burnout as I have felt the same way since diagnosis. Just over a year ago I lost the central vision completely in my left eye and have had serious neuropathy for 3 years (I'm 28 but feel like 78 at this point), I'm not bothered by it anymore and can still exercise and function fairly well around the house etc. But I know that I probably won't live that much longer. I have tried every kind of support from family, groups, professionals, the hospital and private therapists since the age of 10 but nothing has changed the way I feel about my diabetes. I have never felt suicidal or tried to end my life intentionally but feel that nature is already doing that and I find that easier to come to terms with than the cindition itself. I just wondered if anyone else has resigned or just never cared about having this disease, or if they're coping with poor control or complications too?
Apologies for a negative post, but I can't really say anything positive for diabetes as it has ruined things for me personally.

 

[EllieM]

Hi @S1994 and welcome to the forums.

No need to apologise for a negative post, one of the functions of this forum is for people to vent about their feelings, whatever they are.

I stopped going to clinics about 4 years ago and have given up on this condition completely,

The treatment for T1 has actually improved quite a bit over the last 4 years. It might be worth going back if only to pick up things such as a continuous glucose monitor. Mine has made a massive difference to both my life and my diabetic control.

I've always worked on the principle that however bad my control has been in the past, tomorrow is another day and I can try again, but I realise you may not want to hear platitudes like that. And at 28 I'd hope you are still young enough for much of the current damage to be reversed or halted.

Even if we can't change your mind about your diabetes, I hope some of the posters here can make you feel less alone with it.

Lots and lots and lots of virtual hugs

EllieM

 

[david4503]

You would definitely not be the first person to have major difficulty either accepting this illness or dealing with it — or both. The fact that this has gone on for 18 years says to me very obviously that you haven’t gotten the help you needed, which doesn’t sound right to me. By ”right” I mean that virtually everyone can be helped over the threshold between being unable to cope with the demands of Tyoe 1 and starting to take control of their condition.

The fact that you are even here says to me that you haven’t totally resigned yourself to whatever may happen and would appreciate being in touch with someone capable of helping you out. I don’t know but it seems to me that England, Scotland and Wales are big places and somewhere there you should be able to find the right doctor. Step one, I would say, is pretty simple. Don’t give up. Much easier to say than to do of course but it’s one piece of advice that's hard to argue with.

 

[Juicyj]

@S1994

Can you see if there any local t1 groups that meet near you ? I run one in Worcs called Meter Mates and it's just a group huddle for people who totally get it and to meet new friends, but from living with t1 for 10 years i've come to accept that to manage this condition you need; knowledge (so get on courses like Dose Adjustment for Normal Eating or BERTIE which is online, the right insulin which only you and your t1 team can figure out, the right tools (so pens/Meter/CGM/online apps/pump etc) and peer support.

Getting a grip on this and coming to terms that only you can shape the future means that things can definitely get alot better for you. Step 1 - contact your diabetes team and get yourself back on the radar, they are there to help but you need to ask for it.

 

[Fenn]

What has passed is irrelevant, what matters is what you do from now. Look at what people eat on here, eat food that lowers your numbers, injecting less insulin means making less errors, changing your diet to low carb will allow you to do this easily, with the aid of rapid insulin and a good diet, you can see better numbers today! If you “probably won’t live much longer” anyway, what have you got to lose? There is so much information on here on how to help yourself but you have to be open to it. It’s not until we are in our darkest place that we are able to shine our brightest. Choose what path you want to be on and make choices that allow that.

 

[NicoleC1971]

At 28 and whatever has happened, you do have youth on your side so I am glad you've posted. T1 diabetes is a very demanding condition which asks a lot of you as the patient. I also think that we are sold a bit of a line about self management that if only we continually test, count our carbs and adjust dosage we will have normal sugars and that's a lie IMO though there are some good basic habits to get into consistently. So whatever you are feeling - guilt, anger, depression /isolation is normal and I think we all have felt like that i.e. nothing works, why bother?
I cheat because I've now got a pump and sensor that talk to each other. Not that I can forget about carbs but the tech is a lot lot better than it was. Your team will not care if you've disengaged from them in the past but will be glad to help again IF you're willing to help yourself.
Just wondering if on top of the great suggestions to get peer support and education (Dafne/Bertie etc. which also give you peer support). if there is anything that you feel you could no right here and now that would make your bg s any better? Could be stopping something or starting? It has to be just one thing but make it something that has a decent impact.
If you are in Surrey then we have a pub meet up every 6 weeks in Epsom. We often have a rant and a vent too but we all 'get it'!
IF even that feels too much I think you do need to go back to the professionals and/or family/ good friend because it sounds as if ;you need someone to look after you a bit.
Remember that having a very sugary brain won't help your thought processes or mood.

 

[HopeT1]

Hello,
I've never made a post before and don't know if I'm doing this right?

I was diagnosed with type 1 diabetes 18 years ago but it has never been controlled and has ruined my life ever since. Not looking for sympathy or feeling sorry for myself but none of the support or clinics have ever been helpful for me and I have never been able to come to terms with it. I have been to different areas and clinics and tried therapy and psychology services at various times but it hasn't helped for me. My best hba1c result was in 2012 and was 8.7 (I think), but I haven't had a reading below 16 in about 8 years now, usually my blood sugar is over 20. I have tried a lot of different insulins with a pen and pump, again it didn't make life any easier (I now just use Levemir pre filled pens) I stopped going to clinics about 4 years ago and have given up on this condition completely, I wouldn't call it diabetes burnout as I have felt the same way since diagnosis. Just over a year ago I lost the central vision completely in my left eye and have had serious neuropathy for 3 years (I'm 28 but feel like 78 at this point), I'm not bothered by it anymore and can still exercise and function fairly well around the house etc. But I know that I probably won't live that much longer. I have tried every kind of support from family, groups, professionals, the hospital and private therapists since the age of 10 but nothing has changed the way I feel about my diabetes. I have never felt suicidal or tried to end my life intentionally but feel that nature is already doing that and I find that easier to come to terms with than the cindition itself. I just wondered if anyone else has resigned or just never cared about having this disease, or if they're coping with poor control or complications too?
Apologies for a negative post, but I can't really say anything positive for diabetes as it has ruined things for me personally.

Hi, totally understand and agree. Living with T1 since 12. before 2010 there were much better insulins available. I was on 2 injections Mixtard30/70, had a good glucose control and lived normal life. This insulin was discontinued in 2010 and since then NHS offering new insulins with 4-7 injections per day. Personally for me it was physical and psychological torture. Many of us suffer in silence. Insulin producing companies benefiting from our pains and suffering. I used to hope for cure and not for more injections per day with no control, but complications. I also stopped going to the diabetic clinic, no support there, lack of clinical knowledge, no compassion, just business. I am questioning the Integrity of whole system NHS- Insulin Pharma- UK Government. I hope believe that we all should voice our opinion on dysfunctional new insulins and lack of professional services on Government level .

 

[Antje77]

I was on 2 injections Mixtard30/70, had a good glucose control and lived normal life. This insulin was discontinued in 2010 and since then NHS offering new insulins with 4-7 injections per day. Personally for me it was physical and psychological torture.

Hi @HopeT1 , I'm sorry that the switch to a basal/bolus regime has been hard for you. Many diabetics find the multiple injections suit them much better than the old mixed insulins, but this doesn't mean this is true for all, as your story clearly shows.

While the Mixtard is discontinued, there are still mixed insulins available, might be worth having a talk about this with your doctor:
https://www.iddt.org/news/withdrawal-of-mixtard-30/nearest-equivalent-insulin-to-mixtard-30

 

[Zhnyaka]

****, my diabetes is also 18 years old and you and I are almost the same age, sometimes my diabetes is well controlled, sometimes it seems that it is completely impossible to control it. Your story is really scary to read. It's doubly scary because it's the same 18 years as mine... I don't know if it makes sense, but maybe you should try going to the doctor after all. I understand that all the attempts of doctors to help you were useless, and that it is unlikely that you do not measure bg and do not count carbohydrates, I think you have learned so much about diabetes in 18 years that hardly a single doctor will tell you something new, but... in any case, go to the doctor at least once more. Maybe you'll try the pump? I don't know if this will help. ****, it's really ****** up. Virtual hugs to you

 

[Deleted member 45091]

Hi I can understand what ya going through its rough, this so called game of life is, Iam on levimir and nova rapid, can't see nothing out of right eye, had another bleed again, had loads of operations on it this year, had jabs in both eyes, last hba1c was over 100, the amount of tears I've cried over the years through anxiety, panic attacks depression etc is unreal, I don't work, don't drive never been on a plane etc, but from what it sounds like you hate your diabetes along with yourself and they both go hand in hand, before you can sort your diabetes out, find out why you've stopped caring about yourself, where all going the same way and going to die some day, some are taken quick without choice, but for the rest of us all we can do is try and make it that bit easier while we are on our way, things can improve with small changes at a time, there is hope but it has to be small improvements slow and steady, I've noticed you can get a lot more help from the medical proffesions when you start ringing and wanting help and working with them a little and also realising that they do not know everything and we can understand our own body's best. what I'm trying to say is, you might as well try abit see where it takes you, give doctors/hospital team a ring for where to start, i don't know you or you don't know me, all I do know is when you love/care for yourself again things should start to fall into place abit better.

 

[Seaquest]

Hello s1994 a reply of some sort would be appreciated if your still around.The poster above DannyH has nailed it for me,very accurate description of the situation,Socialy,physcologicaly,emotionally,physically it's a very hard to put into words .Try your best that's all you can do...

 

[RobertJ]

****, my diabetes is also 18 years old and you and I are almost the same age, sometimes my diabetes is well controlled, sometimes it seems that it is completely impossible to control it. Your story is really scary to read. It's doubly scary because it's the same 18 years as mine... I don't know if it makes sense, but maybe you should try going to the doctor after all. I understand that all the attempts of doctors to help you were useless, and that it is unlikely that you do not measure bg and do not count carbohydrates, I think you have learned so much about diabetes in 18 years that hardly a single doctor will tell you something new, but... in any case, go to the doctor at least once more. Maybe you'll try the pump? I don't know if this will help. ****, it's really ****** up. Virtual hugs to you

I agree. My control has not always been perfect but I the only answer is to engage with diabetes, accept it and use the resources available to get advice and have good control. We get one chance at life and if that chance includes having Type 1 Diabetes, the best thing to do is engage with it and control it while still aiming to live a full life.

The more knowledge someone has, the easier it makes it to do activities without diabetes getting in the way. For example, I didn't used to understand how different forms of exercise make blood sugar go up or down but now I do. It's only through understanding this that I've been able to start a new sport (Korfball) and maintain decent levels throughout the two hours I'm doing it. If I'd attempted this back in the day when I used to think I needed to eat a chocolate bar before any exercise, I'd be high all the time, dehydrated, and I'd feel tired.

So the more you know about the condition, the less it will get in the way of your life because knowing more means better control.

 

[mentat]

Hi @S1994

I also had my life, mind and soul utterly ruined by this disease. I spent many years with my sugars above 10 because anything lower had horrific consequences. Nobody listened, nobody helped, and very few people even wanted to help. In the end I had to not only learn everything there was to learn about diabetes and psychology, but develop my own theories about both diabetes and psychology because existing thinking is inadequate. I succeeded—for the first time since diagnosis 12 years ago, I am in control of my diabetes and I have also repaired most of the immense trauma it caused.

I am not yet comfortable saying any more about this publicly because of damage that was done to me in the past, but if you DM me I will do my best to help you.

 

[csmmandy]

So many people reading your message will recognise your frustrations, your anger and the desire to bury your head in the sand.
I don't know anyone who hasn't felt like that at times. But please, oh please, don't give up.
I too didn't want to play the 'diabetes game' and actually didn't for a while! but, my goodness, once I started testing etc again I felt so much better.
For me, seeing the diabetic psychologist really really helped. Remember the people who hold these roles change - so if the nurse or specialist you saw didn't click with you, they may have now moved on.
You know you can join meetings on zoom from all around the country?
Don't give up on yourself. Your diabetes is as much part of you as your legs are, or your earlobes. You might not like it but it's part of you that you are stuck with. Accept it - even if you don't embrace it. Please feel loved and lovable

 

[Member34835]

Hello,
I've never made a post before and don't know if I'm doing this right?

I was diagnosed with type 1 diabetes 18 years ago but it has never been controlled and has ruined my life ever since. Not looking for sympathy or feeling sorry for myself but none of the support or clinics have ever been helpful for me and I have never been able to come to terms with it. I have been to different areas and clinics and tried therapy and psychology services at various times but it hasn't helped for me. My best hba1c result was in 2012 and was 8.7 (I think), but I haven't had a reading below 16 in about 8 years now, usually my blood sugar is over 20. I have tried a lot of different insulins with a pen and pump, again it didn't make life any easier (I now just use Levemir pre filled pens) I stopped going to clinics about 4 years ago and have given up on this condition completely, I wouldn't call it diabetes burnout as I have felt the same way since diagnosis. Just over a year ago I lost the central vision completely in my left eye and have had serious neuropathy for 3 years (I'm 28 but feel like 78 at this point), I'm not bothered by it anymore and can still exercise and function fairly well around the house etc. But I know that I probably won't live that much longer. I have tried every kind of support from family, groups, professionals, the hospital and private therapists since the age of 10 but nothing has changed the way I feel about my diabetes. I have never felt suicidal or tried to end my life intentionally but feel that nature is already doing that and I find that easier to come to terms with than the cindition itself. I just wondered if anyone else has resigned or just never cared about having this disease, or if they're coping with poor control or complications too?
Apologies for a negative post, but I can't really say anything positive for diabetes as it has ruined things for me personally.

Hello. Are you still out there? Be good to hear from you.

 

[MartinWalker]

S1994. First of all, big, BIG sympathy and a virtual hug! Diabetes is a horrible condition - I've been Type 1 for 54 years, and I know many people, including good friends, who've given up. We never asked to have it, and only 3% of the population do - it all seems so unfair, like an undeserved death sentence. When I was in my mid-30s, my HbA1c was 11.6, I was already suffering early damage, and I was on course for dying before 50. I decided that, good advice or bad advice, I was going to crack this, so did the DAFNE course and pestered people constantly until I got answers to my questions. My doctor, to his great credit, said one day, "You're going to crack this." So can you. To tell you the truth, my decision to fight was one of the best decisions I've ever made. Nothing changed overnight - I had to change my lifestyle, eating habits, cut out alcohol - in short, I had to change everything. Now, I'm a happy, healthy 57 year old. It hasn't been easy (man, its been tough, and there have been many setbacks), but to tell you the truth, it was one of the best decisions I ever made. It's tough - start small, don't be discouraged, and don't expect too much too soon. The battle is tough - but it CAN be won - and the improvement in my quality of life over the past 20-ish years (and mood!) have been amazing! You can do it, bro - above all, don't give up. Good luck!

 

[Juicyj]

Sadly @S1994 hasn't been back online since their original post, hoping they do return soon tho

 

[homer190376]

I have had Type 1 for 23 years now, first few years of that really didn't understand it at all and went a little of the rails, the past 4 years I have continuous complications, from chacot foot, neuropathy, postural hypertension, eye issues( I wouldn't recommend laser treatment!!) and more recently my Autonomic nervous system has substantial damage and approaching complete failure. All this has had a tremendous affect on my metal wellbeing as well. But I keep going, I keep going for my family and friends. It is really tough sometimes I think the terrible things, but life throws many things and i tackle each one as a new challenge. My next descision is wether or not to have a left leg amputation. You have to look on the bright side of things, and you are still young enough to change things and enjoy life.

 

[S1994]

Hello,
I am still here but was unaware of how to follow the post or be notified.
I have read all of the replies and I really appreciate people taking their time to reply. My eyesight has deteriorated more since this post even, I have looked at treatment options for that but they don't seem at all effective or worthwhile and that part seems hopeless. I don't know if severe retinopathy can be reversed at all, as I wouldn't be willing to have injections in my eyes. I don't check glucose anymore, but I don't actually eat any carbohydrates and haven't for about 4 years (I only eat some fish, mostly plain meat with no sauces or condiments and occasionally eggs and I just take vitamins) but I am also a heavy smoker which I know doesn't help. Mainly it is the eye problem that has made me want to give up, as I have read that exercise, smoking and anything that raises blood pressure like caffeine will worsen it (those are the only things in life I can still enjoy to some extent) I also don't drink any kind of alcohol and have never used drugs, but I really don't know if anything else can repair the damage done.
Thank you to all of the replies, I'm not good at conversation with people but I have read all of them, just I find it difficult to find any examples of someone recovering from such a long term bad state of health and not being permanently disabled from it, so I don't always believe that is a possibility.

@DannyH I'm not sure how to reply properly on here but I'm in a very similar situation now as I can't work anymore and am not able to drive, I think the loss of sight is the most depressing part for me.

 

[S1994]

Hi, totally understand and agree. Living with T1 since 12. before 2010 there were much better insulins available. I was on 2 injections Mixtard30/70, had a good glucose control and lived normal life. This insulin was discontinued in 2010 and since then NHS offering new insulins with 4-7 injections per day. Personally for me it was physical and psychological torture. Many of us suffer in silence. Insulin producing companies benefiting from our pains and suffering. I used to hope for cure and not for more injections per day with no control, but complications. I also stopped going to the diabetic clinic, no support there, lack of clinical knowledge, no compassion, just business. I am questioning the Integrity of whole system NHS- Insulin Pharma- UK Government. I hope believe that we all should voice our opinion on dysfunctional new insulins and lack of professional services on Government level .

Hello,
I 100% agree with everything you've said and beyond - I originally started on mixtard 30/70, my control has never been good but my life, eating, weight control etc was far more normal and the majority of problems started being this bad when bolus and lantus/levemir was started. If there was an equivalent to the twice daily injections I would consider trying that because I felt less controlled by the diabetes back then (I despise all these pumps and injecting/adding up every time you eat anything and I will never be able to manage that) so I completely relate