Diabetes has ruined my life

[Erin]

Hyperglycemia:

I am getting higher and higher bg's and the symptoms of hyperglycemia, esp. sleep. I think I need higher glyclazide now. To avoid hyperglycemia I am trying to eat less and less. I wish we had diabetic clinics.

 

[JoeT1]

Can we please exercise more compassion on this thread - Susie is recently diagnosed and coming to terms with a life changing event - we can all speculate about worse conditions to deal with, I can remember being in a complete state of shock handling my diagnosis, I know others readily accept this immediately and face this with a completely positive mindset, however not everyone is the same, words of encouragement provide more support than anything. @NoKindOfSusie Part of the initial shock for me was trying to live my life again, knowing it wasn't going to be quite like it was before but that it had to change and I had to adapt. Life will improve, it's dealing with how this fits into your life, so that you can live your life more fully again, my best advice is to read 'Think like a pancreas' and have faith that it will get easier in time. Try to talk to people around you, there is support there if you ask for it.

Personally I think there has been a lot of compassion on this thread. Everybody is trying to help.

 

[YunmaKahn]

As far as I know the options are:

1) don't be so careful - have a nicer life now - have a worse life later
2) be really careful - have a worse life now - have a nicer life later

But either way it will probably get me in the end and even the less careful option is miserable.

Neither of them works in practice. The term '' nicer '' here is never nice as it sounds. From what i understand, you 've been newly diagnosed. The loss of physical power, endurance are hindering your daily activities you used to do before, which is a very drastic change occured all of a sudden. Sadly, it's normal. Even if you always keep your glucose at reference levels, you won't have the same power, endurance, dynamism as you had before. This '' disability '' is not only about what and how much you eat.

I was diagnosed with only 170 mg/dl. Being a hyperactive, windbag kid at those times, people had suspected why i couldn't run, why so lifeless, weak, why not speaking, that wasn't me ... they took me to the hospital where i was told about my '' death sentence ''. They let me out after 1 weeks of brainwashing and i still wasn't cured. I still wasn't me.
Since then, i 've tried every possible option, nothing works. Nothing provides me even a single bit of freedom. Something is always there, physically restricting me regardless of my glucose level. The person you used to be is dead and she will never come back, even for an instant.
After that point, it doesn't really matter if you be careful or not. Either way you won't be '' you ''.

'' Live fast, die young. '' doesn't work for a diabetic ... You can die young, but that short life still won't be really fast or enjoyable.

 

[leahkian]

Susie i see your mindset has not changed over the Christmas holidays, i know that you see no good future for yourself and there are a lot of diabetics who feel the same as you. These range from people who are young when they get diabetes to people who have had it a long time and i would love to say i have a magic wand to make it all better but i don't. Every person who get diabetes is different and deals with things in different ways, it seems at the minute you are angry, upset and see no light at the end. I was a diabetic for 36 years and hated it from constant blood checks to injecting insulin of course there are good days but even then you still have to do the same routine and the constant toll that it takes on your body as well as your mind. Diabetes is like no other illness how can a pancreas not working effect so much in your body and why is there no cure for it? None of us would choose diabetes or would like one of our loved ones to get it but we don't get a choice, the choice we do get is how we deal with it. There are so many feelings you have hate, denial, why me, i wish i was dead, sick of diabetes, cannot do what i want, having to watch what i eat and drink and fear. No one can tell you whats going to happen and when, one doctor says this yet the other one said that, It is true in a way that doctors would rather have you run your BS a bit high than low but if your BS are high over a long time that's when things can start to go wrong. If you look at it a different way Sir Steven Readgrave got diabetes in between winning 2 gold medals so if a man who looks after himself and is lean and fit how does he get diabetes, the answer is we don't no. I have suffered with all most all the diabetic problems which ended up with me having a pancreas and kidney transplant which means i no longer have diabetes but it has come at a cost, i am in serve pain everyday caused by nerve damage, my bladder and bowel do not work as they should, i still get tired easy, over the last 2 years i have had 129 appointments with medical or mental health team and my children have seen things which they should never have to see. The thing is i am still here not knowing when the pancreas is going to stop working and then go back to been a diabetic again. You are right that there is no way to win but now winning to me is waking up everyday and being alive as there are many diabetics who are no longer here. I am only here because someone died who was only 23 and his family no longer have him but he is still alive in me and other people, there is not a day goes by when i don't feel guilty so that is another thing that i can add to my list of how i feel. Diabetes can be treated but it takes fight courage and been able to get back up after another set back, i have a older brother who has had diabetes for 10 years but still says he has not got it and his life revolves around drink and drugs, yet he thinks he will get a transplant when he needs it. The local hospital have told him that they are going to refuse to treat him as he is in about once a month and as soon as he is sorted he sighs himself out and do you no what i hate him because one day soon he is going to end up dead and leave his children and parents behind ans he has seen everything that i have been through but chooses his own path. I can tell you i don't know what life has in store for me or you but at least we can have some say in how we want it to go, there is no easy path with any disease there is heartache and pain but i put my faith in myself and all those people around the world who want to find a cure for diabetes because if i don't all i will be is a shell not a person.

 

[NoKindOfSusie]

First off I am not here for compassion, I am just annoyed by the fact that everyone seems to think this situation is great and I have no reason to be unhappy.

Second off.

Even if you always keep your glucose at reference levels, you won't have the same power, endurance, dynamism as you had before. This '' disability '' is not only about what and how much you eat.

I was diagnosed with only 170 mg/dl. Being a hyperactive, windbag kid at those times, people had suspected why i couldn't run, why so lifeless, weak, why not speaking, that wasn't me ... they took me to the hospital where i was told about my '' death sentence ''. They let me out after 1 weeks of brainwashing and i still wasn't cured. I still wasn't me.
Since then, i 've tried every possible option, nothing works. Nothing provides me even a single bit of freedom. Something is always there, physically restricting me regardless of my glucose level. The person you used to be is dead and she will never come back, even for an instant.
After that point, it doesn't really matter if you be careful or not. Either way you won't be '' you ''.

THIS. EXACTLY THIS. I feel like a ghost.

 

[lucylocket61]

First off I am not here for compassion, I am just annoyed by the fact that everyone seems to think this situation is great and I have no reason to be unhappy.

.

I have read every one of the posts on this thread and havent seen anyone saying that the situation is great and you have no reason to be unhappy.

I have seen a great many posts acknowledging that it is difficult and life changing, but that a good quality of life is still possible within that framework of being a type 1 diabetic. The consensus seems to be that you have to work with your diabetes, and accept it, and get the best life experiences you can with the challenges it throws at you.

Over twenty years ago I had a serious injury which changed my life. It is still changing my life. I will never be the person i was before. I went through the stages of denial and grief and depression. Sometimes i still have to go through those stages, although they are less frequent and not as deep as they were initially. Life is difficult and i dont recognise myself in the person I am since my accident, compared to who i was and what I could do before. its hard. But it can be done, day by day. its a mindset.

I do urge you to get professional advice and help with adjusting to your new life. I am only a person on the internet, there are properly trained people out there who can help with your distress and difficulty in accepting your new life.

I was only 32 when my life changed forever. I have had, in the main, 20+ years of quality life since. Its not the same life i had before. I am not the same person as I was before. My opportunities and abilities are not the same as they were before. My future is not the same and my career ended that day. But happiness and contentment and adaption are possible for us all. I had some general counselling, and grief counselling, and therapy for a time afterwards, and occasionally I seek out and get more mental health help when i sink under with depression.

I do hope you are able to find some help, and able to maybe re-read some of the posts on here to see that there is a lot of positive, helpful stuff from people who have walked a similar path to you and wish to help.

You may well find, as I have, that the person you now are is better in many ways than the person you were. And you dont lose all of the old you, or even most of your pre-diagnosis self, as most of ourselves are inside our heads, regardless of what our bodies are or are not able to do.

 

[Cobia]

First off I am not here for compassion, I am just annoyed by the fact that everyone seems to think this situation is great and I have no reason to be unhappy.

Second off.



THIS. EXACTLY THIS. I feel like a ghost.

There is 2 sides to a forum.... one is compation the other you may not like...


Its the act of a fool to bite the hand that feeds you....

In the end you have to come to some sort of peace with your self.

Plenty here that are trying to help you.

Im to blunt to participate in this thread too much rent a crowd...

Hope im not out of place....

 

[YunmaKahn]

First off I am not here for compassion, I am just annoyed by the fact that everyone seems to think this situation is great and I have no reason to be unhappy.

Second off.



THIS. EXACTLY THIS. I feel like a ghost.

Wish i was a ghost, wish i could completely hide myself or end this mind-break once and for all. But, i am a coward, can't end this and can't hide. Last week our new neighbour came at my door with her 10 years old brat. Asked me nicely (!) to calculate his bs, because she got suspected that he was peeing and drinking a lot. After a bit of struggle with that spoiled brat's yelling, screaming, i 've lost patience and almost stroke off one of his fingers for good ... His bs was unfortunately (!) '' OK ''. She was so happy to hear that, '' Oh, thank god, i was so scared ! ''What did they do to deserve better than me or what have i done ?

edited by mod to remove aggressive statement.

 

[JoeT1]

First off I am not here for compassion, I am just annoyed by the fact that everyone seems to think this situation is great and I have no reason to be unhappy.

Second off.



THIS. EXACTLY THIS. I feel like a ghost.

This is not the case with all Type 1's. Initially your endurance and strength may go down, but there is absolutely no reason why it can't be built back up with the correct insulin and food routine, couple with the correct training and patience.

 

[Rokaab]

Last week our new neighbour came at my door with her 10 years old brat. Asked me nicely (!) to calculate his bs, because she got suspected that he was peeing and drinking a lot. After a bit of struggle with that spoiled brat's yelling, screaming, i 've lost patience and almost stroke off one of his fingers for good ...

It's gotta be said most 10 years olds aren't going to be happy if they're trotted round to meet one of their new neighbours to get stabbed in the finger - not something anyone would want - not surpised he was acting up!
I'm pretty sure when I was 10 my parents had a right old fight getting me to do blood tests cos it hurt.

 

[Circuspony]

This is not the case with all Type 1's. Initially your endurance and strength may go down, but there is absolutely no reason why it can't be built back up with the correct insulin and food routine, couple with the correct training and patience.

I felt like jelly when I was first put on insulin. Remember telling my OH there was no point in me keeping my horse if I couldn't ride her. I was lucky enough to have an early consultant appointment, and he warned me that my metabolism would need at least 6 months to adjust. I think it will take longer than 6 months, but it is definitely improving.

 

[NoKindOfSusie]

Or are you just getting used to it.

I'm determined not to let that happen to me. This is not normal, it is not what my life is supposed to be.

 

[Noblecheese]

Reading this has just made me feel like absolute c**p. What a crock.

[Moderator edit for language.]

 

[becca59]

Reading this has just made me feel like absolute c**p. What a crock.

And that just about sums it all up.
The unwillingness to take advice or listen to all the positive comments given. Or indeed not wanting to accept empathy even when there has been plenty offered, makes this thread feel depressing.
It is not at all helpful for newly diagnosed members. I feel as someone else did numerous pages ago that this thread should be put an end to.

[Moderator quote edit.]

 

[lucylocket61]

Or are you just getting used to it.

I'm determined not to let that happen to me. This is not normal, it is not what my life is supposed to be.

You do not know what your life was supposed to be. None of us know what lies ahead, what turns our lives will take. This is your life. The way it is. This is your normal. Many, many people have problems, issues, disabilities (not saying diabetes is a disability), challenges, life altering and limited conditions and that is just the way it is.

In time, I hope and trust you will be able to get some professional help in adjusting to this, and realise that there is a lot more living and happiness ahead of you, regardless of what life throws at you.

I will bow out of this thread now, and send you my good wishes.

 

[Spencer67]

Hi @ExtremelyW0rried Yes diabetes can be pretty awful, intrusive and debilitating on your life, i know , i have been T1 for 23 yrs, but in this time i have learned to not let diabetes control me, change your mind set so you control the diabetes, depression comes as part of the condition and is known for bringing with it cognitive impairment, if you begin to understand your mental health better you may be able to get out of the rut you are in. I recommend you take a look at some youtube vids on diabetes and depression. Remember you are a complex biological organism and there are lots of factors working within you. Perhaps make a start this year to change your approach to managing your lifestyle. Learning to cope is half the battle.

https://www.youtube.com/results?search_query=depression+and+diabetes

"When we are no longer able to change a situation, we are challenged to change ourselves." Viktor Frankl

I do hope you feel better soon)). gl

 

[Juicyj]

"When we are no longer able to change a situation, we are challenged to change ourselves." Viktor Frankl

Love this quote

 

[Miso89]

Hey ExtremelyWorried,

I think first and foremost you must take responsibility for what has happend in terms of your health. I got t1 diabetes at the age of 15 and it wasn't until now that I took into account my eating habits, stress levels, etc over a long period of time that gave me the result of my t1 health condition. Im 28 years old now and have finally taken my head out of my bum. Life was never meant to be easy, if it was how could you possibly enjoy it? This obstacle that many of us share was presented to use because we CAN over come it. You are a remarkable human being and the mother of 2 children, you should take great pride in that. There is a way to beat t1 and many people are trying including myself. You must take responsibility of your life and not begrudge it. You can do it, your children and all of us are rooting for you. You must never give up! Think of the tears of joy you will experience once you've overcome this. Other people are burdened with mundane things and use it to justify things and their worth. You are gifted with having to cherish 1 of the most essential things in life that a lot of us (including myself or use to) take for granted, our health. I am not a doctor nor am I a dietitian, however I have tried a myriad of things in 2017 and have found outstanding results. I went on a low carb diet for 4-5 months all the while doing a rigorous workout plan. This is not to grief your mind into thinking you must continue a far-fetched lifestyle, it is just to help you with my findings for what seems to be working. While on a low carb diet (By the way make no mistake the kind of carbs you eat matters, not all carbs are equal!) I started running and doing kettle bells like crazy. The visceral fat dropped and from the healthy diet choices i was making my health felt a lot better. I would go on runs with a BSL of 16 and in 20m of running it would drop down to 5-6. Even just with this I had tears in my eyes, because doctors have told me the entire time my pancreas will never work again. Well that turned out to be a bust, because my sugar dropped over 10 points without any insulin! The thing i am now trying to fix is the liver dump after exercise and what is normal for my body to sustain as routine. I got so obsessed with thinking running and kettle bells was the key and i was going to run myself to a cure, i did 25km marathons for 2 weeks straight to the point i started peeing blood (I didnt do enough research and ran without hydrating, also peed before runs. A big no-no because your bladder walls will bang on eachother resulting in irritation and blood in urine). I am now incorporating intermittent fasting along with some new spices and herbs to diets that have been shown to promote pancreas regeneration of beta-cells (fenugreek, yams, etc). Remember that its not important to dwell on negatives, or how much pharmas and doctors are making off people needing insulin, whats important to remember is that life is ALWAYS worth living and you can come out victorious in this challenge that is t1! I will continue to exert myself and share more findings that I come across. Many people are trying and you should keep trying. Think of how bad ass you'll to your kids and the message you will send them! "My mom never gives up!" that is truly the most noble thing you can do as a parent. I believe in you but more importantly you should believe in yourself!!

Sincerely,
Adrian

P.S - No effort is ever wasted!

 

[YunmaKahn]

It's gotta be said most 10 years olds aren't going to be happy if they're trotted round to meet one of their new neighbours to get stabbed in the finger - not something anyone would want - not surpised he was acting up!
I'm pretty sure when I was 10 my parents had a right old fight getting me to do blood tests cos it hurt.

It's not the kid i'm angry at. I actually told his mother that i'm not very keen on struggling with little kids, suggested her to just go hospital which is only 500 meters away, so that she could also get in-dept results. But, she kept insisting for me to do it. What annoys me off is someone, who doesn't care about you at all, coming at your house for the first and the last time, just to step on your wound ( Don't even know where she learned about my disability. ). Then yelling out of joy, thanking her so called '' god '' literally meaning '' I'm so grateful that my son won't end up like him. '' in front of me.

*edited by a moderator to remove swear words

 

[Zilsniggy]

Yes i prefer people not to know either.
Lots of people I work with don't know.

I've never really spoken about it to friends, it's boring isn't it? For other people. Now I just don't go out socially at all anyway, what's the point?

Part of what upset me Christmas was was we were out with my husband's family and they probably thought I was making a stupid fuss not eating anything. They kept saying 'won't you be better if you eat?' No no. It'll go higher if I eat. I just wanted to be left alone but I felt it was really noticeable when out for Christmas lunch that I wasn't able to eat anything.

First of all, you need to tell friends, family and coworkers that you are diabetic, so that they know what to do if you have a hypo.
Secondly, you’re in a forum here where nearly every poster is diabetic too. If I were you, I’d count my blessings. Your diabetes sounds well controlled. You’re one of the lucky few who actually have a pump! I can’t even get blood glucose strips. It sounds to me as if you partly enjoy this sick role, and making a martyr of yourself. ‘Poor me, I have diabetes, my life’s ruined’. Really, you need to get a grip and sort yourself out. You are lucky that you are very sensitive to insulin, some of us aren’t, and are at higher risk of dreadful complications than you. You seem to be looking at every last thing the wrong way. If we all did that there would be no diabetes epidemic, because we’d all have shuffled off our mortal coils. We are ALL dealing with our own issues, some better than others. Instead of moaning about this on a forum, get hold of your diabetes specialist nurses, GP, and consultant if you have one, and get something done about it. Yes u obviouslybhave anxiety issues, and need to speak to someone about those, and the way you feel about your diabetes. Sitting moaning about it on a forum to anybody who will listen will get you nowhere. Sorry if you don’t like this, but there it is, that’s what you need to do.