What have I done?!

[Diabetic Girl]

I'm 26 and have been a T1 diabetic since the age of 4. I went through the typical rebellious teen stage of denial with my diabetes and let that go into my early 20's. I have been fighting to control it and do the best I can with my health for a few years now but I am scared it's too late. I went off the rails and now I am paying the price. I now have neropathy, kidney disease and have gone partially blind to the point where I can no longer drive. I know this is my own doing and I deserve this. I feel so alone and have yet to know or hear of a diabetic around my age with these complications. I go to my eye clinic and I'm surrounded by diabetics well
into there 60's or above. Am I the only one my age with all these complications? Did I screw up that badly that I somehow managed to get these "later in life" problems earlier in life?

 

[Guzzler]

I am sorry that you are going through all of this at such a young age and that being a T2 I can't advise you but there is one thing I know for sure and that none of this was your fault, none of it.

It is late and things often look bleak in the small hours but there are members here who are very knowledgeable and experienced about T1 and I'm sure someone will be along shortly to give you what seems like the help, support and advice you need. There are many people of your own age group who have T1 here. Best wishes.

 

[sd29]

Firstly, I’m so sorry. You sound quite down and frustrated, understandably so.

I’m t1, and 35. In the 7 years since diagnosis, I have ignored my Diabetes to the point I have retinopathy, stage 4 nephropathy, Gastroparesis, peripheral neuropathy and autonomic neuropathy. Unfortunately, Diabetes can be very cruel. I also went blind through severe cataracts, now fixed.

I feel I bought this all on and take full responsibility, but I also acknowledge that no other medical condition puts so much emphasis on self management and that although I can’t change what has happened I can work to reduce further damage and move forward with life.

There are times it feels so unfair, but you are obviously strong and can work with everything. Plus, there is always some small comfort in comparison- you’ve not screwed up you’ve got everything wrong!

Complications come hand in hand with the condition, I know a perfect diabetic instead of a diabolical one like me and she also has nephropathy, so I do feel luck can also play a part.

Embrace the nonsense, stick two fingers up at it and keep on moving forward. You can live with all these things, although hard. Plus, my attitude is I’ve got this all out the way early, old age will be a breeze! (Sorry, not being flippant, Just had to develop humour about myself)

Keep trying, and don’t give up. Good luck x

 

[leahkian]

Hello diabetic girl i got diabetes when i was 3 and from the age of 18-21 i had laser treatment on both eyes and had to finish it by knocking me out but to no avail. This did not work and i had 3 ops on my left eye and 2 on the right all in the space of 3 years and was told by my eye doctor last years if i did not have all the treatment that i would have been blind by now. Just 3 months after all that i was told that by the time i was 30 that i would need a kidney transplant and it looked like it was going that way but when i was 30 my kidneys were working at 20% and did so for the next 7 years and after a meeting with all the doctors we thought having a kidney and pancreas would be the best plan. So i had the op in April 2015 which went well no more injections but i was one of the unlucky ones as when my BS was normal all the damage came to light. The thing was i wanted to live as i wanted to see my children grow up and i was to young to die. I know how you feel and i admit that i went off the rails for a while and i think most diabetics do. In my personal feeling are form the age of 14-24 are the hardest for a diabetic as your life changes so much and you don't want to be left behind so you do try to push your diabetes. The thought of meeting a partner and how they will react to you being a diabetic, how alcohol will effect your BS is always there and you see your friends without a care in the world and think why can that not be me. At about 20 i started to have mental health issues as i could not cope with all the changes in my life and diabetes and still suffer form mental health to this day. The thing is when these problems come along you either sink or swim, once you get over the shock the one thing diabetes has given me is a will to fight and as you know everyday is a new fight but if you do not fight then you will need a transplant sooner. You say it is all your fault well now is the time to fight diabetes for you and not to take it, the longer you can keep your BS and renal levels stable then your eyesight will not get worse and you will delay a transplant and who to say by the time you need a transplant that research has found away to make a kidney last a lifetime. You are still young and have made mistakes which i think most diabetics so we are only human fighting a disease that no one can see what it is doing inside your body. If you would like to chat, have a rant or just want someone to talk to about anything that is on your mind then drop me a line

 

[AdamJames]

I'm 26 and have been a T1 diabetic since the age of 4. I went through the typical rebellious teen stage of denial with my diabetes and let that go into my early 20's. I have been fighting to control it and do the best I can with my health for a few years now but I am scared it's too late. I went off the rails and now I am paying the price. I now have neropathy, kidney disease and have gone partially blind to the point where I can no longer drive. I know this is my own doing and I deserve this. I feel so alone and have yet to know or hear of a diabetic around my age with these complications. I go to my eye clinic and I'm surrounded by diabetics well
into there 60's or above. Am I the only one my age with all these complications? Did I screw up that badly that I somehow managed to get these "later in life" problems earlier in life?

In answer to the question in the thread title, I'd say what you've done is you've been human and tried to enjoy life. The problem is not that you deserve anything bad to happen, the problem is that life is not fair.

Metaphorically speaking, you've been given two buttons to press: one that gives you enjoyment, and one that *may* allow you to live a long and healthy life and only if you're lucky. That's not fair, in fact it's very cruel.

I can't offer any advice on Type 1, but I noticed in another thread that this name came up: Dr. Bernstein. I remember reading his story and thinking it was pretty inspirational, possibly even more so to people with Type 1.

 

[ewpfaffly]

I'm 26 and have been a T1 diabetic since the age of 4. I went through the typical rebellious teen stage of denial with my diabetes and let that go into my early 20's. I have been fighting to control it and do the best I can with my health for a few years now but I am scared it's too late. I went off the rails and now I am paying the price. I now have neropathy, kidney disease and have gone partially blind to the point where I can no longer drive. I know this is my own doing and I deserve this. I feel so alone and have yet to know or hear of a diabetic around my age with these complications. I go to my eye clinic and I'm surrounded by diabetics well
into there 60's or above. Am I the only one my age with all these complications? Did I screw up that badly that I somehow managed to get these "later in life" problems earlier in life?

Let me start by saying that I do not think that you deserve this or brought it on yourself. I am type 2 and have been for over 2 years now and I do not have mine under control either. Usually I run high but recently have had issues with being way too low. It is so hard to keep the levels right, especially when the Novolog drops me so low I get the shakes, sweats, and confusion. It makes me so scared of the short term that it's much easier to just ride high. I'm at 23.3mmol right now and just took 50 units of Lantus along with 3 units of the Novolog. My point is that since the long term effects aren't something you notice immediately, and it's so scary dropping so low you can go into a coma, it is easy to just ignore it. I am so sorry for the problems you are having, just don't blame yourself, your human just like me and I "get it". I don't have all the symptoms you do but they are starting. My left arm has started to go numb and my hand tingles most of the time. My sight isn't going yet, but I do have noticeable changes in my vision. I have already lost my gall bladder and 80% of my pancreas, but those are what caused my diabetes, not lost because of it. And that is after only 2 years. I can't tell you that you will get better, but I can tell you that it is never too late to at least do what you can to keep it from getting worse, and believe me, there is worse. My wife's mother had both her legs amputated from complications from diabetes. Not wanting to scare you, just want you to know that there are even worse thing that can happen. You can't change the past but you can change, or at least shape, the future. Hang tough and don't let this get the best of you.

 

[Resurgam]

I saw my grandmother die from the complications of diabetes - it was in the 1950s, but the same series of events seems to happen to people these days too - and although I was just a small child I still have memories of the time and the events.
No matter what has already happened, I can only urge you to consider your future and what you want it to be like. There are so many things to help with controlling diabetes which were not even dreamed of back in the last century, please do make the most of all that is available to you.

 

[leahkian]

I hope you can see that you are not alone in this as we are here for you and you need to get the blame game out of your head and start as it was the first day you became a diabetic that is the way forward

 

[Diabetic Girl]

Firstly, I’m so sorry. You sound quite down and frustrated, understandably so.

I’m t1, and 35. In the 7 years since diagnosis, I have ignored my Diabetes to the point I have retinopathy, stage 4 nephropathy, Gastroparesis, peripheral neuropathy and autonomic neuropathy. Unfortunately, Diabetes can be very cruel. I also went blind through severe cataracts, now fixed.

I feel I bought this all on and take full responsibility, but I also acknowledge that no other medical condition puts so much emphasis on self management and that although I can’t change what has happened I can work to reduce further damage and move forward with life.

There are times it feels so unfair, but you are obviously strong and can work with everything. Plus, there is always some small comfort in comparison- you’ve not screwed up you’ve got everything wrong!

Complications come hand in hand with the condition, I know a perfect diabetic instead of a diabolical one like me and she also has nephropathy, so I do feel luck can also play a part.

Embrace the nonsense, stick two fingers up at it and keep on moving forward. You can live with all these things, although hard. Plus, my attitude is I’ve got this all out the way early, old age will be a breeze! (Sorry, not being flippant, Just had to develop humour about myself)

Keep trying, and don’t give up. Good luck x

Thank you for your comment. I do agree with the luck aspect of it to a certain degree as I also know a perez diabetic with complications and also agree with having humour towards it. I sometimes have dark days when I forget about these points and i want to thank you for reminding me

 

[Diabetic Girl]

Hello diabetic girl i got diabetes when i was 3 and from the age of 18-21 i had laser treatment on both eyes and had to finish it by knocking me out but to no avail. This did not work and i had 3 ops on my left eye and 2 on the right all in the space of 3 years and was told by my eye doctor last years if i did not have all the treatment that i would have been blind by now. Just 3 months after all that i was told that by the time i was 30 that i would need a kidney transplant and it looked like it was going that way but when i was 30 my kidneys were working at 20% and did so for the next 7 years and after a meeting with all the doctors we thought having a kidney and pancreas would be the best plan. So i had the op in April 2015 which went well no more injections but i was one of the unlucky ones as when my BS was normal all the damage came to light. The thing was i wanted to live as i wanted to see my children grow up and i was to young to die. I know how you feel and i admit that i went off the rails for a while and i think most diabetics do. In my personal feeling are form the age of 14-24 are the hardest for a diabetic as your life changes so much and you don't want to be left behind so you do try to push your diabetes. The thought of meeting a partner and how they will react to you being a diabetic, how alcohol will effect your BS is always there and you see your friends without a care in the world and think why can that not be me. At about 20 i started to have mental health issues as i could not cope with all the changes in my life and diabetes and still suffer form mental health to this day. The thing is when these problems come along you either sink or swim, once you get over the shock the one thing diabetes has given me is a will to fight and as you know everyday is a new fight but if you do not fight then you will need a transplant sooner. You say it is all your fault well now is the time to fight diabetes for you and not to take it, the longer you can keep your BS and renal levels stable then your eyesight will not get worse and you will delay a transplant and who to say by the time you need a transplant that research has found away to make a kidney last a lifetime. You are still young and have made mistakes which i think most diabetics so we are only human fighting a disease that no one can see what it is doing inside your body. If you would like to chat, have a rant or just want someone to talk to about anything that is on your mind then drop me a line

I really appreciate your support and advice. It's comforting to know that there are others out there with similar issues, thoughts and feeling about this cruel disease. You are right about fighting it to prevent my health getting worse and I know that. I think the frustration and lack of motivation comes when I try so hard and still don't get good results. Got to keep fighting I guess but it can be difficult as I am sure you understand. I too have mental health issues because of my diabetes and how it has effected my life. I feel there needs to me more mental support for diabetics and this place is a good start.

 

[leahkian]

The diabetic team that i am under dose have a person who only deals with diabetics and mental health issues. You will find that there are many diabetics who do suffer with mental health issues due to diabetes, as you say when you try the best you can and the results come back the same as before. With having a transplant i am on a diabetic holiday but am more frustrated now as the nerve damage and pain are still effecting my life and it is all caused by diabetes, more help for people with mental health would be a good way forward but the lack of funds is stopping it. Last year i had a mental health worker who would see me once a month but one she came and told me that my case had been reviewed and they said that my mental health was as good as it was going to get and she would not see me anymore. She told me that the funding had been cut and they had more people who needed help so anyone who had seen a member of her team for more than 6 months were told that the service could no longer be done.My consultants at where my transplant was done went crazy and wanted me to see the head consultant for mental health in my area, this was 17 months a go and nothing has been done but my GP did sort some help for me but you could only have 8 visits. So now i am in limbo to see what is going to be sorted for me, for me it comes down to funding but if i get down on the bottom again my children suffer, i may forget my meds and then need a hospital bed to get me back on track. The government spends over 10% of the NHS budget on diabetes so why are they not doing more to help, Mrs May is a diabetic herself but has done nothing since she became PM. It is left to forums like this where we can talk to other diabetics who face the same fight, the only good thing is that research is finding ways of helping make diabetes easier than before but i think it might come to late for a 41 year old single dad like me but with you being young you may benefit from it. In the past i have had junior doctors do a Q and A session with me and done a couple of diabetic talks to people who are finding it hard to cope with diabetes, in these talks i explain that diabetes is not all about your BS it is about the whole of your body and mind as there are so many things that can go wrong and your mindset has to be right. I see diabetes as a slow killer as the longer you have it the more chance of one of the side effects will get you, i have been lucky that i found a doctor who was there not only to tell me what to do but would listen to my point. There are not many like him as when i had my transplant he came on to the ward to do some paperwork at 9 30 at night and had been in clinic all day but before he went home he popped in for a couple of minutes to see if i needed anything which i told him that he had given me a chance to see my children grow up and i could never repay him for that.

 

[Bud1979]

I'm 26 and have been a T1 diabetic since the age of 4. I went through the typical rebellious teen stage of denial with my diabetes and let that go into my early 20's. I have been fighting to control it and do the best I can with my health for a few years now but I am scared it's too late. I went off the rails and now I am paying the price. I now have neropathy, kidney disease and have gone partially blind to the point where I can no longer drive. I know this is my own doing and I deserve this. I feel so alone and have yet to know or hear of a diabetic around my age with these complications. I go to my eye clinic and I'm surrounded by diabetics well
into there 60's or above. Am I the only one my age with all these complications? Did I screw up that badly that I somehow managed to get these "later in life" problems earlier in life?

Your being way way too harsh on yourself, feeling sorry for yourself ? I don’t know but if you feel your entitled to it, why not ? When you get up to your knees, then your own two feet, and it will happen, struggle on, there’s no secret to it, it grinds you down, kicks you in the teeth but then gives you a break, struggle on. We can’t help or avoid these complications and this is hard. It’s not easy I often feel like throwing in the towel but then I get onto my knees and it begins again. Do not give in or give up.

 

[Bud1979]

Ps it’s funny when I was first diagnosed in the dark and distant 70’s I was the only poor working class young teenager it was all older middle class people ( teachers, bank managers, ) now I am the auld white haired foagy. In my t1 career I have seen doctors and nurses start their careers and retire. I think I keep going just to annoy / confound others.

 

[donnellysdogs]

My consultant says that some kidney problems are genetic with diabetes.. even those with seemingly good control are still prone. His words to me "if you havent had probs in the first 15 years of T1 you are unlikely to get kidney probs..."

So balancing up... you may have been more predisposed to the complications anyway.

Now you need to get medics and yourself on one side only.... loooking to the future... you cannot undo any of the past.... but the future is yours to build.

I dont know your insulin regime or how your control is now but never give up.
Technology and insulins have taken good steps forward... I know.. I've tried them all... if you are still on mdi, perhaps a pump my help (or not), if you still just test, perhaps a Libre may help? If on mdi there's a lot of variety in insulin choices now to try..

You are not alone and never will be....

 

[Antje77]

I know this is my own doing and I deserve this.

Huh? Why would someone deserve diabetes and diabetic complications? Most of us did stupid things between the age of 12 and 24, and most of us got away with it. I was lucky I didn't have diabetes back then or I would likely be in your shoes right now.

 

[Alexandra100]

I have been fighting to control it and do the best I can with my health for a few years now but I am scared it's too late. I went off the rails and now I am paying the price

I wonder if you have come across Dr Bernstein's famous book "Diabetes Solution"? Here is a chapter from that book where he tells his story.
http://www.diabetes-book.com/bernstein-life-with-diabetes/
He was diagnosed at 12 with T1 and had developed all sorts of serious complications and almost died before he himself was the first lay person to use a blood glucose monitor and discovered that he could heal himself with a strict very low carb diet - what today we would call a Keto diet. Some of the complications took years to heal, and a few health problems are still with him, but you can see from his videos that today at 83 he is full of beans and enjoying life. He even still works as a doctor. I do hope his story will encourage you.

 

[sinead.morgan]

I'm 26 and have been a T1 diabetic since the age of 4. I went through the typical rebellious teen stage of denial with my diabetes and let that go into my early 20's. I have been fighting to control it and do the best I can with my health for a few years now but I am scared it's too late. I went off the rails and now I am paying the price. I now have neropathy, kidney disease and have gone partially blind to the point where I can no longer drive. I know this is my own doing and I deserve this. I feel so alone and have yet to know or hear of a diabetic around my age with these complications. I go to my eye clinic and I'm surrounded by diabetics well
into there 60's or above. Am I the only one my age with all these complications? Did I screw up that badly that I somehow managed to get these "later in life" problems earlier in life?

Hi you are definetly not alone. Im 27 and have been T1 since i was 3. I went through the same rebellious teenage phase that i also continued to my early 20s. I do not have retinopathy like yourself however i do have gastroparesis, a type of neuropathy that makes my face drip with sweat anytime i eat and have recently been told that i my kidney function is dereasing. I have spent the last few years trying to get my hbA1c down and finding it a struggle. Please do not be so hard on yourself we are only human we make mistakes. Keep your head up and keep fighting. Its definetly not too late if you can get your diabetes under control you can prevent further complications. We can do this!

 

[Marvin Zanoria]

Hi there. I hope you get all the help you need with your condition. God bless you and please keep the faith.