Diabetes Story.. what’s yours so far!

[Rose22]

My diabetes story looks like this so far...over exactly 10 years from my mid twenties to my mid thirties...
Gestational (diet)
Gestational (diet and Insulin)
Pre diabetes (diet and exercise)
Type 2 (diet, exercise, meds and no meds)
Late Onset Type 1 (meds)

It seems diabetes is not simple, but evolving and a life long part of me.
Interested to see others diabetes stories...

 

[therower]

Diagnosed late 20’s .....approaching 29 yrs in.
Diagnosed Type 1 ( insulin )
Healthy diet, plenty of exercise and just get on with living.

 

[Postleneo]

Rushed in to hospital the night before flying home to UK following a two week fabulous holiday in Disneyland Florida 5 years ago. After 2 days in intensive care - diagnosed as T1- lived it up with a further weeks stay in one of the disney hotels feeling on top of the world

Try to eat and live life as normal as possible keeping A1C at around 6.2%

Loving the freedom of the insult Omnipod assisted by freestyle libre, miao miao and xdrip. Basically only thing I don't do now on a regular basis is get wasted with alcohol

 

[Ushthetaff]

Diagnosed T1 on 1st September 1980, after peeing for Wales ,Scotland , Ireland and England , and drinking the contents of lake Windermere.
Things were a bit different back then . Didn’t check sugars so control was poor for years , I didn’t change my life at all really,
I loved my sport and swore that diabetes wouldn’t stop me doing anything and it didn’t , I drank smoked etc etc etc.
However it did come back to bite me in the perversion bum.
At 49 I had a heart attack all be it slight had a stent fitted it was then I decided I better screw the nut , in 2013 I dropped a hammer On my toe which resulted in amputation of right leg below the knee, during which I contracted sepsis which resulted in my kidneys dropping to 1% function , my partner was told I wouldn’t last the night, but hey I did and father 2 weeks of dialysis my kidneyfunction ended up at 30 %.
This sounds a bit of a horror story but it’s not , sure I have a prosthetic( got a great welsh flag on it btw) , my diabetic control is excellent thanks to
(A) actually taking my b/s ( Libre is great)
(B) looking after myself ( don’t smoke or drink these days and don’t miss either)
C and this is the biggest I think I have a positive attitude I don’t let diabetes control me I control it , it’s my body I do things that benefit me , obviously have to obey basic rules but try things that suit me eg I put my sensor for my lLibre on my stomach not had on drop off year and readings are great.
I never think why me ?
I just get on with the cards I’m dealt , having diabetes for nearly 40 teaches you that I can remember when diabetic control was restrictive but now it not that difficult ,
Plus there is a saying always someone worse off than you.
if I can survive with really bad control for the best part of 35 years and the ailments I’ve been through there is hope for anyone
I am more than surviving I am healthy I go to the gym 4 times a week I can walk on 1and half legs life is definitely worth living

 

[sadiek1804]

Diagnosed about 5 years ago as type 2 insulin dependant

Yesterday was told it could now either be LADA or MODY - it’s so confusing.

Poorly controlled diet and diabetes resulting in now being called high risk

Seeing the nurse again in a couple of weeks after keeping a diary of foods and insulin and my tests

Fingers crossed I understand it more to know how serious it all is

 

[Rose22]

Diagnosed late 20’s .....approaching 29 yrs in.
Diagnosed Type 1 ( insulin )
Healthy diet, plenty of exercise and just get on with living.

Amazing respect for you just going along with life and not letting diabetes stop you from living.

 

[Rose22]

Rushed in to hospital the night before flying home to UK following a two week fabulous holiday in Disneyland Florida 5 years ago. After 2 days in intensive care - diagnosed as T1- lived it up with a further weeks stay in one of the disney hotels feeling on top of the world

Try to eat and live life as normal as possible keeping A1C at around 6.2%

Loving the freedom of the insult Omnipod assisted by freestyle libre, miao miao and xdrip. Basically only thing I don't do now on a regular basis is get wasted with alcohol

That’s one way to find out you are diabetic! Wow makes it a memorable holiday! Brilliant to be living as normal as can, and positive attitude.

 

[Rose22]

Diagnosed T1 on 1st September 1980, after peeing for Wales ,Scotland , Ireland and England , and drinking the contents of lake Windermere.
Things were a bit different back then . Didn’t check sugars so control was poor for years , I didn’t change my life at all really,
I loved my sport and swore that diabetes wouldn’t stop me doing anything and it didn’t , I drank smoked etc etc etc.
However it did come back to bite me in the perversion bum.
At 49 I had a heart attack all be it slight had a stent fitted it was then I decided I better screw the nut , in 2013 I dropped a hammer On my toe which resulted in amputation of right leg below the knee, during which I contracted sepsis which resulted in my kidneys dropping to 1% function , my partner was told I wouldn’t last the night, but hey I did and father 2 weeks of dialysis my kidneyfunction ended up at 30 %.
This sounds a bit of a horror story but it’s not , sure I have a prosthetic( got a great welsh flag on it btw) , my diabetic control is excellent thanks to
(A) actually taking my b/s ( Libre is great)
(B) looking after myself ( don’t smoke or drink these days and don’t miss either)
C and this is the biggest I think I have a positive attitude I don’t let diabetes control me I control it , it’s my body I do things that benefit me , obviously have to obey basic rules but try things that suit me eg I put my sensor for my lLibre on my stomach not had on drop off year and readings are great.
I never think why me ?
I just get on with the cards I’m dealt , having diabetes for nearly 40 teaches you that I can remember when diabetic control was restrictive but now it not that difficult ,
Plus there is a saying always someone worse off than you.
if I can survive with really bad control for the best part of 35 years and the ailments I’ve been through there is hope for anyone
I am more than surviving I am healthy I go to the gym 4 times a week I can walk on 1and half legs life is definitely worth living

Thanks for sharing your story, it is inspiring to see how you have been through tough times but not let it stopped you living life to the full. I have total respect for anyone that’s been injecting insulin for 40 odd years! My diabetic (poorly controlled) grandmother lost her foot after gangrene from a wound that wouldn’t heal, and she sadly died shortly after the op in hospital. My type 1 grandmother had poor control from drinking lots, she sadly had a heart attack too, but she had been living on a diet wine and custard for years!
You are certainly a strong fighter!

 

[Rose22]

Diagnosed about 5 years ago as type 2 insulin dependant

Yesterday was told it could now either be LADA or MODY - it’s so confusing.

Poorly controlled diet and diabetes resulting in now being called high risk

Seeing the nurse again in a couple of weeks after keeping a diary of foods and insulin and my tests

Fingers crossed I understand it more to know how serious it all is

I hope you get an answer soon, it can be complicated. I was automatically told type 2, which a few gps questioned and so did I, as I was trying everything to control my blood sugars but it wasn’t happening. Finally saw a consultant and he said similar, was I MODY or LADA? I thought I fitted this more...was chasing up if they where going to do genetic tests for MODY for the consultant to tell me my results where back and I was strongly positive Anti-Gad and Islet. Said I’m late onset type 1...good news is after nearly 2 years on all sorts meds better suited for type 2...I’m now on correct med and had best hba1c since 2018.
Don’t loose hope, it is very frustrating whilst trying find out what type you are, and if like anything like me just want to know! But hopefully they are running the antibody and cpeptide test for you?

 

[ert]

Diagnosed 3 years ago as type 1. Struggling on insulin. Still can't accept it's permanent. Still hoping I will turn up and they will tell me that they made a mistake.

 

[Jam&Scones]

I hope you get an answer soon, it can be complicated. I was automatically told type 2, which a few gps questioned and so did I, as I was trying everything to control my blood sugars but it wasn’t happening. Finally saw a consultant and he said similar, was I MODY or LADA? I thought I fitted this more...was chasing up if they where going to do genetic tests for MODY for the consultant to tell me my results where back and I was strongly positive Anti-Gad and Islet. Said I’m late onset type 1...good news is after nearly 2 years on all sorts meds better suited for type 2...I’m now on correct med and had best hba1c since 2018.
Don’t loose hope, it is very frustrating whilst trying find out what type you are, and if like anything like me just want to know! But hopefully they are running the antibody and cpeptide test for you?

Our stories are very similar! Except mine deviates when I had a negative test for GAD. I may still get a genetic test, but apparently that depends on my insulin output (of which I have had two tests - one high and one low end of normal, so yeah the consultant is scratching his head!). I am now starting to read up about type 3c because I do get symptoms which sound related, so I am going to try to get a referral to a specialist. You'd think it was the doctor who would ask these questions, but I guess if you want something done...

For the moment though, I am considered MODY type 2.

 

[Rose22]

Our stories are very similar! Except mine deviates when I had a negative test for GAD. I may still get a genetic test, but apparently that depends on my insulin output (of which I have had two tests - one high and one low end of normal, so yeah the consultant is scratching his head!). I am now starting to read up about type 3c because I do get symptoms which sound related, so I am going to try to get a referral to a specialist. You'd think it was the doctor who would ask these questions, but I guess if you want something done...

For the moment though, I am considered MODY type 2.

That’s really interesting, I do hope you get some answers soon. As you say if you want something done..do it yourself! I had to in a round about way prove why I didn’t agree with the automatic type 2 diagnosis I’d been given by gp. You know your body best, so keep going and over time I’m sure you will have a more conclusive answer. I think the difficult thing for some of us, is our bodies and diabetes is changing over time.. either very fast to get a strong type 1 you need insulin answer or a we aren’t sure yet answer. I don’t know which is easier to deal with?!

 

[JohnEGreen]

Diagnosed about 20 years ago with Myasthenia Gravis over the course of several years put on higher and higher doses of prednisolone.

Developed cushing like symptoms including weight gain from 12 stones to 18.5 stones.

Then started losing sensations in feet and hands GP says I dunno ask your neurologist when you see him six months later ask neuro he diagnosed neuropathy orders blood tests including HbA1c result in the fifties writes letter to GP.

When I ask GP about letter he says what letter, show him my copy oh yes any way that's nonsense you do not have diabetes.

12 months later neurologist orders repeat HbA1c now at 64 GP says completely normal you do not have diabetes.

12 months later walk into new doctors surgery first thing he does after saying hello is a finger prick test "oh dear that's rather high" no specifics "seems we have missed the boat here somewhat"

Hands me a prescription for Metformin advises me not to test says I don't know why your upset John you knew you were diabetic pretty much any way.

Bought meter on leaving the surgery came on line here went LCHF and restricted calories from between 600 - 800 per day for about two years lost 8.5 stone blood sugars now mostly within normal range with normal HbA1c .

One day hope to replace some of the muscle mass I lost with that rather drastic diet.

 

[Rose22]

Diagnosed about 20 years ago with Myasthenia Gravis over the course of several years put on higher and higher doses of prednisolone.

Developed cushing like symptoms including weight gain from 12 stones to 18.5 stones.

Then started losing sensations in feet and hands GP says I dunno ask your neurologist when you see him six months later ask neuro he diagnosed neuropathy orders blood tests including HbA1c result in the fifties writes letter to GP.

When I ask GP about letter he says what letter, show him my copy oh yes any way that's nonsense you do not have diabetes.

12 months later neurologist orders repeat HbA1c now at 64 GP says completely normal you do not have diabetes.

12 months later walk into new doctors surgery first thing he does after saying hello is a finger prick test "oh dear that's rather high" no specifics "seems we have missed the boat here somewhat"

Hands me a prescription for Metformin advises me not to test says I don't know why your upset John you knew you were diabetic pretty much any way.

Bought meter on leaving the surgery came on line here went LCHF and restricted calories from between 600 - 800 per day for about two years lost 8.5 stone blood sugars now mostly within normal range with normal HbA1c .

One day hope to replace some of the muscle mass I lost with that rather drastic diet.

Amazing! Gosh it’s hard reading another 12 months and other 12 months on your story. I had a gp say to me out of the blue, as was there for something else...”oh it says here your sugars are pre diabetic. Don’t worry try loose weight and after 3 months re test, you might just need to take a pill each day. Sometimes there’s nothing you can do.” I went home and cried! Not really because of the lack of care but the shock. I’d had to inject insulin only a year before when pregnant and afterwards naively thought that was the end of diabetes and me.That I’d never need insulin again or be having to even think about diabetes and sugar levels...how wrong.
It’s brilliant that you took your health in to your own hands, researched and did what you felt was best for you, what fantastic results you have achieved!

 

[Rose22]

Diagnosed 3 years ago as type 1. Struggling on insulin. Still can't accept it's permanent. Still hoping I will turn up and they will tell me that they made a mistake.

I can understand that feeling! I hope with time you feel acceptance of it being part of your life. A type 1 friend told me, best bit of advice she could offer was, “every day is different” with diabetes. I like to try and take that approach now.
Thanks for sharing your story.

 

[sleepster]

I was diagnosed in 1997 with type 1.
2x daily fixed doses until 2003, MDI until 2012, pump since then, possibly back to MDI at some point this year

 

[Rose22]

I was diagnosed in 1997 with type 1.
2x daily fixed doses until 2003, MDI until 2012, pump since then, possibly back to MDI at some point this year

Thanks for sharing your diabetes story. You have a fair few years to contend with and it seems changing regimes. Best of luck for this year and I have huge respect to you for dealing with all diabetes brings.

 

[novorapidboi26]

Diagnosed 21 years ago....
Had grown up as a child with my younger brother being type 1 since he was 2...
I was put on a diabetes trial as I was tested and came back as higher risk....one half of participants on a pill, the other a placebo...
Diagnosed a year into the trial, was very calm as my mum and dad new the signs..
Straight on to a mixed insulin and didn't really succeed at diabetes by any stretch of the imagination..
My twenties were horrendous with all the partying..
After meeting my wife and deciding to go back to clinic I was introduced to MDI in 2009...
Instantly better control overnight...
Go my pump in 2012...
Been plodding on with the pump and libre since last year....
Apart from some retinopathy, life is good, diabetes doesn't really have any perceived negative impact at all...

 

[sleepster]

Thanks for your kind words @Rose22, I'm struggling a bit at the moment so it was nice to read that

 

[Rose22]

Diagnosed 21 years ago....
Had grown up as a child with my younger brother being type 1 since he was 2...
I was put on a diabetes trial as I was tested and came back as higher risk....one half of participants on a pill, the other a placebo...
Diagnosed a year into the trial, was very calm as my mum and dad new the signs..
Straight on to a mixed insulin and didn't really succeed at diabetes by any stretch of the imagination..
My twenties were horrendous with all the partying..
After meeting my wife and deciding to go back to clinic I was introduced to MDI in 2009...
Instantly better control overnight...
Go my pump in 2012...
Been plodding on with the pump and libre since last year....
Apart from some retinopathy, life is good, diabetes doesn't really have any perceived negative impact at all...

Thanks for sharing, what a start to your diabetes story! I guess in a way maybe it’s all you’ve known from such a young age? It’s brilliant to have such a positive attitude.