Diabetes has ruined my life

[XxBeaudynexX]

I am so fed up. Every special occasion. Every 'enjoyable' time. There it is. Ruining everything.

My pump set failed at 12pm on Christmas Day so I had to sit and watch all the normal people enjoying Christmas lunch with a blood sugar of 18, feeling ill, and I couldn't eat anything. One piece of toast I had on Christmas Day to eat and that was all. I know it's not the end of the world but it just spoils everything. I can't plan anything in case it's a day my blood sugars aren't behaving. I can't go out for meals. I can't go on holiday. I can't sleep more than two hours in a stretch as I have to get up to check my blood sugar. And after all that my a1c remains mediocre at 46. What is the point?! I may as well give up.

It's not like I can think in six months it'll be better. In a year. Two years. Because it won't ever be better, this is how it'll be for the rest of my life.

I don't understand how people with t1 say they can do everything other people do or how t1 fits in with them. Mine dominates my life every second of the day and night.

Hey! I know it’s hard and it can seem like it never gets easier! I’ve been t1d since I was 10 - now 24. I’ve always been very blasé and went through my whole teen years being angry and upset that I was different and had to inject before I could enjoy my food or having to prick my finger and make them sore before eating! But...it has never stopped me from doing anything. I’ve been abroad several times (not usually any further than a 4 hour flight and it was only a 2 hour time difference) joined in with any activity’s going, I’ve eaten out and pretty much do everything everyone else does. Don’t get me wrong, it’s hasn’t always gone to plan, but as long as I’ve been aware and mindful to keep an eye on my bloods I usually managed to keep things from spiralling out of control.

I haven’t always been good though. My A1c would never be below 90 and I use to not check my bloods and just guess any random number for my carbs. But then a couple of years ago I decided things need to change.

I’ve been on an insulin pump since January 2017 and had a freestyle Libre since 2016. They have both changed my life. I also came to a point in my life and decided if I’m careful and stop cutting corners I’ll actually help myself control my bloods and it’ll end up making my life easier.

I understand people deal with things differently but it’s all about positive mental attitude. Think about the good points you see through the day. Don’t worry about what happened yesterday think about today. Your a1c is better than mine, heck it’s better than most people! Mine is 56 and I’m still working on getting it lower.

Also not saying things go perfectly for me now. I get occlusions, I still can get high bloods and when I’m ill I might as well give up because nothing seems to work how it should do. My Christmas day was messed up too. I had high ketones for no apparent reason as my bloods were perfect so ended up throwing up all afternoon and couldn’t eat my dinner.

All you can do is try your best.

 

[XxBeaudynexX]

There is a process of grieving for the life you could of have. It’s perfectly normal. But if you’re struggling a lot and feel that things don’t change, you’re probably best to talk to someone. Good luck

 

[NoKindOfSusie]

What's going to change? It's permanent.

 

[Grant_Vicat]

What's going to change? It's permanent.

I thought that until I had a kidney pancreas transplant in 2013, after 54 years of Type 1. I have been rejuvenated, even at the age of 59. You live in the right times for this sort of miracle. I hope you have the luck I have had

 

[NoKindOfSusie]

At that rate I will be eligible by the time I'm seventy-eight years old.

 

[Grant_Vicat]

At that rate I will be eligible by the time I'm seventy-eight years old.

Don't forget that in my first 20 years, treatment was at best primeval and largely guesswork. Talking to a retired doctor who was at University College Hospital London up until the mid 1980's, she said that they didn't really know what they had to do for a considerable part of her career - they were just glad to keep people alive. We live in VERY different times and it is not in any government's interest to ignore finding a cure. I hope for your sake that my optimism is not unfounded

 

[Scott-C]

Don't forget that in my first 20 years, treatment was at best primeval and largely guesswork. Talking to a retired doctor who was at University College Hospital London up until the mid 1980's, she said that they didn't really know what they had to do for a considerable part of her career - they were just glad to keep people alive. We live in VERY different times and it is not in any government's interest to ignore finding a cure. I hope for your sake that my optimism is not unfounded

Thea Cooper's book, Breakthrough..., about the discovery of insulin, is fascinating. She had access to original papers from Banting and the other major players, so there's a high degree of accuracy in it, but it's not just a dry read about hard science: plenty of stuff about the politics and personalities, which brings home the humanity of it all.

The stories about the kids existing pre-discovery on ultra-low carb diets (particularly the kid who died after eating his budgie's seed because he was so hungry) are heartbreaking, as are the stories about parents coming from all over the place queuing up round the block, to see if they could get their wee ones on the trials.

T1 isn't an easy ride, I'd remortgage my house instantly if there was an expensive cure, but, all in all, I'm reasonably content that I'm T1 now and not back in the early days.

I take my hat off to you old timers who winged it through the early days!

 

[nessals946]

I thought that until I had a kidney pancreas transplant in 2013, after 54 years of Type 1. I have been rejuvenated, even at the age of 59. You live in the right times for this sort of miracle. I hope you have the luck I have had

What was the reason for yoyr transplant? Ive been type 1 for almost 43 years,lost a lot of my sight and have kidney problems but im only at stage 1.Im not sure i would qualify.

 

[Grant_Vicat]

What was the reason for yoyr transplant? Ive been type 1 for almost 43 years,lost a lot of my sight and have kidney problems but im only at stage 1.Im not sure i would qualify.

What was the reason for yoyr transplant? Ive been type 1 for almost 43 years,lost a lot of my sight and have kidney problems but im only at stage 1.Im not sure i would qualify.

Hi @nessals946. I feel almost a traitor when I talk to people like you. I was put on the waiting list for a kidney/pancreas transplant at Addenbrooke's Hospital, Cambridge in early 2012. Prior to that they had noticed kidney problems as far back as 1973, when I was fifteen. Fortunately I got a place at King's College, University of London and was therefore made an in- and outpatient at King's College Hospital. I was looked after by this internationally respected Diabetic Department for 22 years, and although my kidney function did not stop deteriorating, they slowed the process down, having read the Riot Act! In 2000 I was referred to Addenbrooke's Hospital Cambridge, who gave an estimated 5 years before I would go on dialysis. by 2012 my Creatinine level was over 600 and hence going on the list. As it happened, they decided that in spite of very poor kidney function, for a nearly 54 year-old I was remarkably fit, especially regarding heart and liver. So they suggested pancreas while they were at it. To this day that is the most astonishing suggestion in my entire life. They ordered me to go home to think about it, but my mind was already made up!After six false alarms, I had the op on 13th August 2013. I had been given an appointment to start dialysis on 22nd August...As Fats Waller sang: "I believe in miracles"
The thing is that a pancreas transplant is life threatening and very much depends on the patient. Obviously I know only the info within your post, but you could get in touch, maybe via your GP (if that's hopeless, I would write directly to whichever of the following are nearest: Churchill Hospital, Oxford Royal Infirmary Edinburgh, Freeman Hospital, Newcastle Guy's Hospital London, Manchester Royal Infirmary University Hospital of Wales, Cardiff, Hammersmith Hospital London and of course Addenbrooke's itself, one of the finest centres in the world - google Sir Roy Calne.
I can only say that it distresses me to hear stories like yours and I hope that your luck will change for the better and quickly.

 

[EllieM]

Going by the timing of peak crappiness it's lantus, though.

You don't have to be on lantus. There are other insulins (tresiba???). Can you phone your clinic and make a pest of yourself till they give you an emergency appointment? (Freely admit I'm out of date with UK medical system, since I moved to Australia in 1999 and NZ this year). Good luck.

 

[NoKindOfSusie]

If all else fails I will end up moving back to Australia in a few months anyway. That would really be the final failure. I have never dealt with this in Australia so I have no idea what the system is like.

 

[Robinredbreast]

I don't get this at all.

OK lots of people are better at this than me and I am not arguing with them for a heartbeat.

But how can you possibly not resent it. I didn't do anything. I looked after myself. I went running, I ate right, I was in decent shape. It isn't in my family. I was happy, I was living my life, I had a job I was good at and now I am at the very least, far less good at it, I am turning down work I would desperately love to do because I just can't handle it. It is slowly wrecking everything and I did not ask for this in any way.

How can you possibly not resent it. It's hateful.

If you resent something, hate it, despise it, it can engulf and burden your life with such negativity, we have to try and live a full life, I know how hard it can be, but we have to dig deep and find that inner strength and determination to live positive life and not just exist.................. but if you are really struggling, talk to your DSN or Gp for help and support.
ps I chose my signature for a reason and it really does help. Take care x

 

[XxBeaudynexX]

What's going to change? It's permanent.

Change as in managing and dealing with t1d. Yes it’s a lifetime diagnosis but that doesn’t mean you can’t change the way you look after yourself.

 

[NoKindOfSusie]

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.

 

[Circuspony]

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.

I think I was diagnosed around the same time as you. I've chosen option 1. I try and keep BG levels <10. I haven't given up my chocolate addiction - in fact I need it to be able to exercise - but I have given up pasta because eating it leaves me feeling hungover. That's about the only change diet wise.

Being diagnosed in my 40s also means my organs haven't had decades of BG issues to destroy them, so with any luck they'll grant me a few more decades before they give up!

 

[NoKindOfSusie]

Yes well unfortunately I'm 24.

 

[Sue192]

Yes well unfortunately I'm 24.

Or, you are fortunate that you have at least 20 years head start on @Circuspony to benefit from medical advances. As for your options, well, The Grim Reaper gets us all in the end. It could be any number of things - cancer, heart disease, accident, the No. 57 bus ***. And yes, it could be T1. But considering the longevity of some members with T1, then the other tricks of the man with the scythe are more likely. I am sorry to be so dismissive but I fear that you are not yet in a position to take any advice and support, of which there is a considerable amount in this thread, and every post of yours is a negative counter-argument. Many others have said that you should try and find counselling or even a helpline: voicing your fears, sadness and anger against the ****** hand you have been dealt will help you to work through those emotions. I do send you my virtual hug and fervent hope that you can find a better way to ease your pain, but it looks as if we cannot help you, sadly, even though we all dearly would wish to. X

 

[JoeT1]

Yes well unfortunately I'm 24.

Have you got access to somebody to talk to regarding this? I am sure it's been asked, but unfortunately, it does seem that nothing anybody says on here is working for you.

I'm recently diagnosed, mid October in fact, has my life changed? Yes. Have I had a couple of meltdowns? Absolutely. That's where things need to stop though. I know from experience, continuously feeling sorry for myself doesn't work. It does nothing for my health only make it worse. It's a hard illness to get, no doubt, but it's manageable, life goes on. I have connected with my friends even more than before, my family, my football team mates. I have learned so much about my own body in just three months, what food doesn't agree with it, what does, how I feel at any given moment.

You need to embrace it, learn from it and make it yours. Trust me, everyone is entitled to a ***** and a moan about things, but constantly doing it will make others around you feel as bad, and it is not good for your mental health to continuously be so down. Do one thing every day that you enjoy, smile for absolutely no reason. I'm no motivational speaker, but it's so important to get to grips with things, no matter what. There are so many people so much worse off.

 

[Juicyj]

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.

 

[Granny_grump_]

Yes well unfortunately I'm 24.

My sister also type1 was ten when diagnosed and nobody in family at that time was ever diabetic that was 46 years ago, then at 18 years of age my grandson was diagnosed type1,I'm type2 my grandson was at first like you he felt is life wasn't worth living because he only dwelt on what he couldn't do like going out drinking with friends etc. But he's Now in his thirties and leads a full life works miles away from home driving their everyday and has had some issues to deal with but on the whole he's doing good.
But he had to accept some lifestyle changes but nothing over the top,it's about looking at what you need to do to give yourself control of your diabetes and not your diabetes controlling you! It's a learning curve life is a learning curve people need to take charge of there health issues everyday, diabetes is manageable just get the help you need to get yourself their.
Has someone else has said their are lots more health issues far worse than diabetes you are a young person with all there life in front of them grab it by the throat and shake the living daylights out of it And Live It .
On this site you can get all the advice and help you need just ask! K