My story......

porl69 · Jan 17, 2018

After reading a thread just now by @Jeremy_Wood I thought I should write my story
Long story......
Diagnosed T1D 45 years ago at the tender age of 6. To me at the time it was no big deal! My mother was very strict with what I ate and my urine tests were always pretty good. Then High School happened... used to have a packed lunch for dinner, all healthy eating, until I started to notice all my friends were having strange chocolate thing and Coke. Nothing diet happening then. Needless to say I started to cheat with my healthy lifestyle a lot... Down to see the diabetic doctor with my test result pad in hand the vast majority of it made up, was told I was having the dreaded "lie detector" test (HBA1C). Waited 6 months for my next appointment and the doctor said that my HBA1C was really high and if I did nothing to lower it I would have problems later on in life. At 14 years old I knew better than the doctors, my eye sight was amazing I still had 2 feet and my kidneys were working fine!
So from around 14 I totally lost control of my T1 and didnt really care as I was having no problems. On times I would be a really good diabetic just to get my HBA1C down to a reasonable level.
Early twenties was always out drinking with my friends then a curry after and seldom doing an injection until the following day when my blood sugars were thru the roof......still I knew better than the doctors.....still had very good eyesight, still had 2 feet and kidneys seemed like they were working fine...... so the abuse of my T1 continued
Around the early 1990s I had my first eye test and retinopathy was taking hold, so was given appointments to have laser treatment. Can remember feeling VERY nervous but after 1 treatment realized that it wasn't soo bad and carried on with the abuse, but not so bad now as I realized I was starting to have a few problems. After numerous laser treatments on both eyes I woke one morning to see that I had "corrugated" vision out of my left eye, so straight down the eye clinic to ask what was happening. Was seen and told I needed to go to Bristol Eye Hospital to see them straight away. Bristol...surgeon said I needed an urgent operation to lift my retina and remove the scar tissue that was forming behind my eye. Am now scared. Had the op, and was told I could go home, impaired vision in my left eye but was told it would get better. 2 weeks after the op was rushed back to Bristol with severe pains in my eye. Was told that my retina had detached and needed an emergency op to put it back in place. That happened another twice over 2 months at which point the surgeon said he had to remove my retina. So am now blind in my left eye!!! Did that teach me a lesson??? Hell no I continued with the abuse, again not so bad BUT still not a well controlled diabetic AND still I knew better than the doctors.
3 years ago was called in to my GP and told that my creatinine level was high. Rushed down to the local hospital and waited the customary 6 hours to be seen and told after blood test and scans that my kidney was only functioning at 21% and that I now was stage 4 CKD.
NOW this has really scared me as I am needle sensitive!!!! OK doing my own injections after 85K of the little sods BUT anyone else doing them ie bloods etc I am a total wimp. So with the thought of dialysis and or kidney transplant stuck in my head I have now decided that it is about time I actually listened to the doctors and specialist nurses have been telling me for 45 years that I really need to get and keep control of my diabetes.
I am now a VERY well controlled diabetic for 95% of the time. My kidneys are still working at 21% not good I know BUT not getting worst. I have just been prescribed the Freestyle Libre and am awaiting for a consultation with a different diabetic doctor about going on and insulin pump (Omnipod)
Any younger diabetics reading this.... TAKE NOT OF WHAT YOUR DIABETIC DOCTOR AND DSNs TELL YOU else you will end up in the same place as me OR worst...
Really had to shorten this massive story down a load

nessals946 · Jan 17, 2018

porl69 said:
After reading a thread just now by @Jeremy_Wood I thought I should write my story
Long story......
Diagnosed T1D 45 years ago at the tender age of 6. To me at the time it was no big deal! My mother was very strict with what I ate and my urine tests were always pretty good. Then High School happened... used to have a packed lunch for dinner, all healthy eating, until I started to notice all my friends were having strange chocolate thing and Coke. Nothing diet happening then. Needless to say I started to cheat with my healthy lifestyle a lot... Down to see the diabetic doctor with my test result pad in hand the vast majority of it made up, was told I was having the dreaded "lie detector" test (HBA1C). Waited 6 months for my next appointment and the doctor said that my HBA1C was really high and if I did nothing to lower it I would have problems later on in life. At 14 years old I knew better than the doctors, my eye sight was amazing I still had 2 feet and my kidneys were working fine!
So from around 14 I totally lost control of my T1 and didnt really care as I was having no problems. On times I would be a really good diabetic just to get my HBA1C down to a reasonable level.
Early twenties was always out drinking with my friends then a curry after and seldom doing an injection until the following day when my blood sugars were thru the roof......still I knew better than the doctors.....still had very good eyesight, still had 2 feet and kidneys seemed like they were working fine...... so the abuse of my T1 continued
Around the early 1990s I had my first eye test and retinopathy was taking hold, so was given appointments to have laser treatment. Can remember feeling VERY nervous but after 1 treatment realized that it wasn't soo bad and carried on with the abuse, but not so bad now as I realized I was starting to have a few problems. After numerous laser treatments on both eyes I woke one morning to see that I had "corrugated" vision out of my left eye, so straight down the eye clinic to ask what was happening. Was seen and told I needed to go to Bristol Eye Hospital to see them straight away. Bristol...surgeon said I needed an urgent operation to lift my retina and remove the scar tissue that was forming behind my eye. Am now scared. Had the op, and was told I could go home, impaired vision in my left eye but was told it would get better. 2 weeks after the op was rushed back to Bristol with severe pains in my eye. Was told that my retina had detached and needed an emergency op to put it back in place. That happened another twice over 2 months at which point the surgeon said he had to remove my retina. So am now blind in my left eye!!! Did that teach me a lesson??? Hell no I continued with the abuse, again not so bad BUT still not a well controlled diabetic AND still I knew better than the doctors.
3 years ago was called in to my GP and told that my creatinine level was high. Rushed down to the local hospital and waited the customary 6 hours to be seen and told after blood test and scans that my kidney was only functioning at 21% and that I now was stage 4 CKD.
NOW this has really scared me as I am needle sensitive!!!! OK doing my own injections after 85K of the little sods BUT anyone else doing them ie bloods etc I am a total wimp. So with the thought of dialysis and or kidney transplant stuck in my head I have now decided that it is about time I actually listened to the doctors and specialist nurses have been telling me for 45 years that I really need to get and keep control of my diabetes.
I am now a VERY well controlled diabetic for 95% of the time. My kidneys are still working at 21% not good I know BUT not getting worst. I have just been prescribed the Freestyle Libre and am awaiting for a consultation with a different diabetic doctor about going on and insulin pump (Omnipod)
Any younger diabetics reading this.... TAKE NOT OF WHAT YOUR DIABETIC DOCTOR AND DSNs RTELL YOU else you will end u[ in the same place as me OR worst...
Really had to shorten this massive story down a load

Ive just read my own story,diagnosed at 6 years old.Ive had this for 42 years but im still not as "good" as some of the newbies.My lack of control started in secondary school,i didnt want to be different from my friends and regularly bought chocolate from the tuck shop.
As i got older and started working and driving,all i did was inject my insulin and eat/drank whatever i wanted.
My 21st birthday resulted in me drinking so much alcohol that i ended up in hospital because of a hypo.
I didnt care,wanted to be "normal" and apart from my 21st birthday i hardly had any hypos,my blood sugar was always so high.
Warnings from my parents and hospital team fell on deaf ears,until i was 22 and started having bleeds in my right eye.
My left eye soon followed and after numerous ops in the Moorfield eye hospital,i now have partial sight in my left eye and no sight in my right.
In fact,my right eye had to be removed.I have glaucoma and a cataract.My kidneys arent so bad,stage 1 kidney disease but i live in dread of having to have a limb amputated.
I do my best now,been using a libre for just over 2 years and it helps enormously.

Jeremy_Wood · Jan 17, 2018

porl69 said:
After reading a thread just now by @Jeremy_Wood I thought I should write my story
Long story......
Diagnosed T1D 45 years ago at the tender age of 6. To me at the time it was no big deal! My mother was very strict with what I ate and my urine tests were always pretty good. Then High School happened... used to have a packed lunch for dinner, all healthy eating, until I started to notice all my friends were having strange chocolate thing and Coke. Nothing diet happening then. Needless to say I started to cheat with my healthy lifestyle a lot... Down to see the diabetic doctor with my test result pad in hand the vast majority of it made up, was told I was having the dreaded "lie detector" test (HBA1C). Waited 6 months for my next appointment and the doctor said that my HBA1C was really high and if I did nothing to lower it I would have problems later on in life. At 14 years old I knew better than the doctors, my eye sight was amazing I still had 2 feet and my kidneys were working fine!
So from around 14 I totally lost control of my T1 and didnt really care as I was having no problems. On times I would be a really good diabetic just to get my HBA1C down to a reasonable level.
Early twenties was always out drinking with my friends then a curry after and seldom doing an injection until the following day when my blood sugars were thru the roof......still I knew better than the doctors.....still had very good eyesight, still had 2 feet and kidneys seemed like they were working fine...... so the abuse of my T1 continued
Around the early 1990s I had my first eye test and retinopathy was taking hold, so was given appointments to have laser treatment. Can remember feeling VERY nervous but after 1 treatment realized that it wasn't soo bad and carried on with the abuse, but not so bad now as I realized I was starting to have a few problems. After numerous laser treatments on both eyes I woke one morning to see that I had "corrugated" vision out of my left eye, so straight down the eye clinic to ask what was happening. Was seen and told I needed to go to Bristol Eye Hospital to see them straight away. Bristol...surgeon said I needed an urgent operation to lift my retina and remove the scar tissue that was forming behind my eye. Am now scared. Had the op, and was told I could go home, impaired vision in my left eye but was told it would get better. 2 weeks after the op was rushed back to Bristol with severe pains in my eye. Was told that my retina had detached and needed an emergency op to put it back in place. That happened another twice over 2 months at which point the surgeon said he had to remove my retina. So am now blind in my left eye!!! Did that teach me a lesson??? Hell no I continued with the abuse, again not so bad BUT still not a well controlled diabetic AND still I knew better than the doctors.
3 years ago was called in to my GP and told that my creatinine level was high. Rushed down to the local hospital and waited the customary 6 hours to be seen and told after blood test and scans that my kidney was only functioning at 21% and that I now was stage 4 CKD.
NOW this has really scared me as I am needle sensitive!!!! OK doing my own injections after 85K of the little sods BUT anyone else doing them ie bloods etc I am a total wimp. So with the thought of dialysis and or kidney transplant stuck in my head I have now decided that it is about time I actually listened to the doctors and specialist nurses have been telling me for 45 years that I really need to get and keep control of my diabetes.
I am now a VERY well controlled diabetic for 95% of the time. My kidneys are still working at 21% not good I know BUT not getting worst. I have just been prescribed the Freestyle Libre and am awaiting for a consultation with a different diabetic doctor about going on and insulin pump (Omnipod)
Any younger diabetics reading this.... TAKE NOT OF WHAT YOUR DIABETIC DOCTOR AND DSNs TELL YOU else you will end up in the same place as me OR worst...
Really had to shorten this massive story down a load

Glad to hear other people have had a tough time of it! Glad also that you're out the other side.

Isn't it funny how we so nonchalantly screw ourselves up? I often wonder whether survival instinct is a real thing.

Juicyj · Jan 17, 2018

Wow powerful reading @porl69 and @nessals946 - thank goodness you are here to tell your stories though

I mentioned before on Jeremy's thread - but what would you ask your younger selves which could of averted this and set you straight ?

I am lucky in so much as I was 39 when diagnosed so had no choice but to just get on with it as quickly as I could - but as a mum I also take interest in how we can help the younger folk to deal with this and stay on the right path so they have long and healthy lives.

porl69 · Jan 17, 2018

Juicyj said:
Wow powerful reading @porl69 and @nessals946 - thank goodness you are here to tell your stories though

I mentioned before on Jeremy's thread - but what would you ask your younger selves which could of averted this and set you straight ?

I am lucky in so much as I was 39 when diagnosed so had no choice but to just get on with it as quickly as I could - but as a mum I also take interest in how we can help the younger folk to deal with this and stay on the right path so they have long and healthy lives.

What would I tell the younger generation? Listen to your diabetic doctors and DSNs as they DO know best. Always test your blood, regularly, and try and stay on track. When you look after your diabetes it does look after you,, abuse it and it WILL kick you up the backside.

Juicyj · Jan 17, 2018

It's a good message @porl69 but as you know our younger selves 'always know better'.. The issue with type 1 is you cannot see the damage being done within, so it is almost like an invisible condition, and if you feel ok you battle on regardless, I think some youngsters use their type 1 to rebel against, it's being told you have to conform and follow the rules, but rebel regardless and then of course there is the 'wanting to fit in' and not stand out - this is the biggest issue I see facing our kids, that no one wants to be seen as different - which as well all know when you get older, you want to be different and accepting your strengths and weaknesses makes you ok to stand out more and be proud of yourself despite whatever condition/label you own.

NoKindOfSusie · Jan 17, 2018

"In Soviet Russia, Condition Owns You."

porl69 · Jan 17, 2018

I work in a garage as a receptionist. See a fair few diabetics come in and always ask them if they test frequently and look after themselves. I always tell them my story and always get the same astonished reply. Not many people realise the consequences of not looking after yourself....

TheBigNewt · Jan 17, 2018

The dangerous thing about diabetes is that it's pretty much a painless disease even then you're in bad control. As long as you don't scare yourself with blood sugars of 15 on the meter you'll do fine as long as you stay out of DKA. We had this guy in our fraternity house when I was at the university who was Type 1. He did/drank/ate everything we did as far as I could tell. He seemed fine. It wasn't until 15-20 years later I found out he had it back then (by then I had it too). I think he died at around age 50 or so. But he got into pretty heavy coke too, I've sure that didn't help.

Grant_Vicat · Jan 17, 2018

nessals946 said:
Ive just read my own story,diagnosed at 6 years old.Ive had this for 42 years but im still not as "good" as some of the newbies.My lack of control started in secondary school,i didnt want to be different from my friends and regularly bought chocolate from the tuck shop.
As i got older and started working and driving,all i did was inject my insulin and eat/drank whatever i wanted.
My 21st birthday resulted in me drinking so much alcohol that i ended up in hospital because of a hypo.
I didnt care,wanted to be "normal" and apart from my 21st birthday i hardly had any hypos,my blood sugar was always so high.
Warnings from my parents and hospital team fell on deaf ears,until i was 22 and started having bleeds in my right eye.
My left eye soon followed and after numerous ops in the Moorfield eye hospital,i now have partial sight in my left eye and no sight in my right.
In fact,my right eye had to be removed.I have glaucoma and a cataract.My kidneys arent so bad,stage 1 kidney disease but i live in dread of having to have a limb amputated.
I do my best now,been using a libre for just over 2 years and it helps enormously.

You have my absolute sympathy (and empathy!) Everything that led up to a kidney/pancreas transplant in 2013 can be traced back to the years 1959-1978. I knew better than the doctors (Really?!) and tried to hide the fact that I had diabetes. I would mysteriously lose record books/charts and lie to my parents that I had tested urine. Just another Clinitest down the pan. It was my own fate that caused me to write Fifty Years of Malfunction in 2009. If I get through to one diabetic in our childhood position I shall be thrilled. I wish you all the best.

nessals946 · Jan 17, 2018

Juicyj said:
Wow powerful reading @porl69 and @nessals946 - thank goodness you are here to tell your stories though

I mentioned before on Jeremy's thread - but what would you ask your younger selves which could of averted this and set you straight ?

I am lucky in so much as I was 39 when diagnosed so had no choice but to just get on with it as quickly as I could - but as a mum I also take interest in how we can help the younger folk to deal with this and stay on the right path so they have long and healthy lives.

I cant think of anything that would have got through to me at the time.

Grant_Vicat · Jan 17, 2018

nessals946 said:
I cant think of anything that would have got through to me at the time.

Maybe the likes of us should be invited to school assemblies or PHSE sessions? If they meet people who can tell an unarguable and even visible story, it might help. Many children ask me why my hands shake and why I am not allowed to run, dance, hop or skip. They can still ignore us, but you never know!

NoKindOfSusie · Jan 18, 2018

Can I just point out here that not all young people are idiots.

I am 24 and for the last four months I have done very little else other than try to make the meter read six. I don't think I would have reacted any differently when I was 14. I was a kid, I wasn't an idiot. I am terrified of the future and I don't really need a lecture on what might happen to me in order to make that any worse. I know more or less what's go going to happen to me, it's just a matter of when. You guys are not a cautionary tale so much as a glimpse at the future and I am already doing everything I can not to end up in the same boat. And I do mean, absolutely every single thing I can.

nessals946 · Jan 18, 2018

NoKindOfSusie said:
Can I just point out here that not all young people are idiots.

I am 24 and for the last four months I have done very little else other than try to make the meter read six. I don't think I would have reacted any differently when I was 14. I was a kid, I wasn't an idiot. I am terrified of the future and I don't really need a lecture on what might happen to me in order to make that any worse. I know more or less what's go going to happen to me, it's just a matter of when. You guys are not a cautionary tale so much as a glimpse at the future and I am already doing everything I can not to end up in the same boat. And I do mean, absolutely every single thing I can.

Having read through many of your posts,you are a very pessimistic person.You have been diagnosed at 24,you are an adult.By the time i was your age i had been dealing with diabetes for 18 years,with very archaic practices.
No blood testing machines,needles 5 times as long and 10 times as thick as the ones used today.Glass syringes kept in surgical spirit and the regime for me was 5 injections a day at set times.
No ratios or carb counting.
Many of us who have problems now were foolish yes,but idiots no.
I cant see how you can possibly think you would have handled this any differently as a child/teenager because you are certainly not handling it now.

kev-w · Jan 18, 2018

Sitting waiting at the diabetic clinic in the mid 80s with the very high numbers of amputees & overweight ill looking people was the hint I needed to look after myself so I avoided high sugars.

I've had a lot of hypos mind....

NoKindOfSusie · Jan 18, 2018

Well that's exactly what I just said. I don't think I'd handle it differently as a kid. I think I'd be just as terrified and just as desperate to be careful. I certainly wouldn't be buying chocolate and trying to keep it a secret.

I would not hold myself up as an example to anyone, as the numbers show I am a miserable failure at dealing with this and I would never claim any different, but please let's not pretend that graphic descriptions of the likely outcome would help. I am already scared, trying to make me more scared is not going to make any difference. I think I've used up about ten lifetimes worth of fear in the last few months, I've spent so much time being frightened that it's starting to feel normal.

Mike d · Jan 18, 2018

NoKindOfSusie said:
I think I've used up about ten lifetimes worth of fear in the last few months

Again, that's not the way you live a life

phdiabetic · Jan 18, 2018

NoKindOfSusie said:
Can I just point out here that not all young people are idiots.

I am 24 and for the last four months I have done very little else other than try to make the meter read six. I don't think I would have reacted any differently when I was 14. I was a kid, I wasn't an idiot. I am terrified of the future and I don't really need a lecture on what might happen to me in order to make that any worse. I know more or less what's go going to happen to me, it's just a matter of when. You guys are not a cautionary tale so much as a glimpse at the future and I am already doing everything I can not to end up in the same boat. And I do mean, absolutely every single thing I can.

Agree, I was diagnosed age 17 and I always behaved myself. I have never skipped an injection, neglected to test, cheated on my diet, gotten drunk or done drugs. My blood test results have always been amazing.

phdiabetic · Jan 18, 2018

Mike D said:
Again, that's not the way you live a life

I live in constant fear of low blood sugars (and to a lesser extent, highs) but still have a good life. I think it's necessary to have a good amount of caution as a T1, like it's some survival instinct. I get top grades in all my subjects and have many hobbies and interests. I don't get out as much as I'd like but I still get to see my friends. I would rather be afraid when it's not necessary than let my guard down and miss a dangerous blood sugar. Life is also no fun if your blood sugar is out of control.

Mike d · Jan 18, 2018

I don't doubt any of that for a moment (especially if you're a T1) but life needs a balance as you have adequately illustrated. The value is diminished if you are forever preoccupied and paralysed with fear

@nessals946 post said it all

My story......

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