1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2021 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Has anyone here been a diabetic for more than 40 years?

Discussion in 'Type 1 Diabetes' started by BOHDE, Jun 10, 2014.

  1. Omnipod

    Omnipod Type 1 · Well-Known Member

    Messages:
    498
    Likes Received:
    656
    Trophy Points:
    133
    What Id like to ask is... all those T1's who have and who are posting in this thread.... When you speak of being young and not taking as much care..... how long did you not take your diabetes seriously.... what was your HBA1c back then.... and now that you are taking care...what is your hba1c now?
     
  2. yingtong

    yingtong Type 1 · Well-Known Member

    Messages:
    487
    Likes Received:
    1,397
    Trophy Points:
    178
    Hi Omnipod,back 1963 I'm not sure what Hba1c was or if they did that test then. It took me 10 years to come to grips with my diabetes .My last Hba1c,7 weeks ago was 46%
     
    • Like Like x 2
  3. CarbsRok

    CarbsRok Type 1 · Well-Known Member

    Messages:
    4,696
    Likes Received:
    5,286
    Trophy Points:
    178
    I can't remember when the A1c came out but don't think it was around in the 1960's do remember it from the 70's though.
    Home blood testing came along in about 1982. So all we had was strict diets or supposedly as the case may be. Back in those days I don't think we had as many stresses from diabetes as no testing etc. so no worries.
    My A1c is 6.4 and hasn't been above 6.5 for 10 years and not above 7 in the last 20. That's as far as I can go back with my own records.
     
  4. Minnie45

    Minnie45 Type 1 · Well-Known Member

    Messages:
    157
    Likes Received:
    199
    Trophy Points:
    103
    40 years for me this month, diagnosed when I was 6 - only found that out this month as I thought I was 7 lol. Have other auto immune conditions (under active thyroid, ulcerative colitis and inflammatory arthritis) but otherwise good health, and the not unexpected background retinopathy. I'm fortunate I had good care, my old Dr years ago put me on blood pressure tablets and statins to help protect things. My mum on the other hand has been a T1 for 49 years and has really suffered with her eyes in recent years, she also has coronary disease and is undergoing stents next month.
     
    • Like Like x 2
  5. RuthW

    RuthW Type 1 · Well-Known Member

    Messages:
    1,158
    Likes Received:
    1,921
    Trophy Points:
    178
    Hey. My mum keeps telling me that when you've been Type 1 for fifty years, you can get a medal ( from whatever the British Diabetic Association is called now). Did you get one?

    In answer to OP's question:

    And I've had it since 1967, probably triggered by a minor operation I had a few months before. I got hypothyroidism at 13 (1975). I've had frozen shoulder twice and very, very minor bleeding in one eye. No laser treatment yet and no detectable vision deficiencies. I am rather inflexible, which can be a side effect of high blood sugars, though I can improve that with exercise.

    Lately, I have been putting on belly fat, my previously superb blood pressure was not good at the last appointment, and my cholesterol is relatively high ( trigs are very low, though).

    I also believe that some people (like me) are just lucky. There's no justice in this illness. I know people who have always been "good diabetics", much better than me, and they have much worse complications after a very short time. I believe that it's not all about the blood sugar. I think that's very important, but I think some people have more of a syndrome, where the autoimmune system attacks other parts of the body too. Otherwise, I think the variation in outcomes is inexplicable.
     
    • Like Like x 4
    #65 RuthW, Jun 12, 2015 at 6:45 PM
    Last edited by a moderator: Jun 12, 2015
  6. RuthW

    RuthW Type 1 · Well-Known Member

    Messages:
    1,158
    Likes Received:
    1,921
    Trophy Points:
    178
    Hahaha! There was no such thing as the HbA1c. There were no blood tests. We had to do urine tests twice a day. And of course most people hated them, couldn't see the point of them and faked their records. I can remember as a teenager sitting in the waiting room ( we also waited for hours and hours and hours back then) filling out my "results" and some little old lady telling me how to fake them better and how she did it! I was a bit startled. I still thought adults didn't tell lies, and also I had no idea what she was doing at the children's clinic. So, in short, we didn't know what our Hb was. Our treatment was hopeless. Our prospects were hopeless. I don't really understand why any poor doctor chose to specialize in diabetes.

    The last ten years has been a complete revolution in diabetes treatments.
     
    • Like Like x 8
    • Agree Agree x 1
    #66 RuthW, Jun 12, 2015 at 6:50 PM
    Last edited by a moderator: Jun 12, 2015
  7. CarbsRok

    CarbsRok Type 1 · Well-Known Member

    Messages:
    4,696
    Likes Received:
    5,286
    Trophy Points:
    178
    I had one sent to me last week :)
     
    • Like Like x 4
  8. RuthW

    RuthW Type 1 · Well-Known Member

    Messages:
    1,158
    Likes Received:
    1,921
    Trophy Points:
    178
    Really? That's so great! Post a picture! Who awards it? I'm nearly there! 48 years diabetic this year!
     
  9. RuthW

    RuthW Type 1 · Well-Known Member

    Messages:
    1,158
    Likes Received:
    1,921
    Trophy Points:
    178
    When it comes to "not taking as much care", there were no DAFNE courses back then. There were no basal and bolus regimes. Nobody knew their "carb ratio". (The doctor did but never mentioned it.) Nobody knew their own factors of any kind. We staggered from accidental hyper (mistake at estimating carbs) to hypo (no mention EVER of planning a change in your insulin regime for exercise or unusual activity) when we just schlucked back dextrose tablets or whatever else we could lay our hands on. It was like trying to live on the deck of a ship in a raging sea. And when you went to the clinic, desperate, sad and exhausted, unable to make sense of it all, you got a "telling off" because of course it was your fault, wasn't it? You were "non-compliant." Oh the bad old days!
     
    • Like Like x 6
    • Funny Funny x 1
  10. Marling

    Marling · Member

    Messages:
    18
    Likes Received:
    36
    Trophy Points:
    33
    @ Ruth. Yes, true, I did get a beautiful gold medal in a very smart blue case. It made me smile :)). I actually thought it came from my clinic, as they always told me how well I was doing...
     
    • Like Like x 5
  11. zjed

    zjed Type 1 · Well-Known Member

    Messages:
    110
    Likes Received:
    153
    Trophy Points:
    83
    I've had T1 for 43 years, since I was 7. Lots of drugs, alcohol and partying in my teens and 20s but somehow I've got away with it. I must have some protective genes in there somewhere.
    I am now under pretty tight control and am confident of not getting complications.
    Here in Victoria you get a 50 year medal and high tea at the governor general's house (not sure if it's low carb)
     
    • Like Like x 6
  12. notoriousnick

    notoriousnick Type 1 · Member

    Messages:
    10
    Likes Received:
    10
    Trophy Points:
    43
    I was diagnosed in 1972 at the age of 12. I've been using a pump for the last ten years and a CGM for the past couple of weeks. Like others here, early control was terrible - finding myself unconscious or near-unconscious on a regular basis from low BGs. Single shot of insulin a day, which peaked during late morning, forcing me to stuff myself full of carbs to prevent a plummeting BG. No BG tests, just urine tests. Then the insulin would run out in late evening meaning sky high BGs overnight.

    In my late teens I worked out that running in the evenings stopped the jump in BGs overnight (still no BG tests available), and so have kept up running (and other activities) ever since. Then around 1980, after knocking myself out on a skating rink (as you do) and winding up in hospital, I was kept there also to stabilise my BGs. Switched over to MDI. I was so impressed by how much better I felt when using the hospital's BG measuring device (a big machine) I begged and pleaded if there was any sort of device I could borrow or rent to do this at home. Doctors looked at each other, disappeared for a while, and came back with one of the first home BG meters ever invented - the size of a house brick! I believe it was originally designed by some Melbourne engineer for his T1 daughter, then developed by Ames, but the details escape me now.

    Anyhow, no complications, highly fit and waiting for another 7 years to get that medal :).

    If someone were to ask me what the secret is to surviving T1, I'd say (apart from picking the right genes and controlling BGs), high amounts of exercise. Live like an athlete (but no doping! :)).

    Cheers,
    Nicholas
     
    • Like Like x 5
  13. CarbsRok

    CarbsRok Type 1 · Well-Known Member

    Messages:
    4,696
    Likes Received:
    5,286
    Trophy Points:
    178
  14. himtoo

    himtoo Type 1 · Well-Known Member
    Retired Moderator

    Messages:
    4,723
    Likes Received:
    5,435
    Trophy Points:
    198
    don't know how i haven't stumbled on to this thread before............

    great inspiration :)

    been type 1 since august 1972 so coming up 43 years shortly. ( am 57 )

    I have had some issues overs the years but its funny that some of them they don't really tell you that it is because of the diabetes until you start having the trouble

    frozen shoulder , duyputrens contracture , necrobiosis lipoidica to name 3

    i have taken BP and cholesterol meds for about 18 years so am reasonably well controlled there
    and I started MDI by myself after I read about it happening in germany.
    had a bit of laser in 2002 and 2012 for minor bleeds and a few ( 3 ) lucentis injections in 2013 for a macular edema close to my central vision in 2013.

    as I am such a positive person I think I am doing remarkably well all things considered
    I do test religiously and eat a lot of green veg and have managed to keep my A1c's below 6.5% for many many years now
     
    • Like Like x 7
  15. Robinredbreast

    Robinredbreast Type 1 · Oracle

    Messages:
    18,448
    Likes Received:
    27,584
    Trophy Points:
    298
    I think you are ALL fantastic.:) so inspirational. I have 14 more years to go until my 40th diaversity and I hope those years will be good ones with not too many blips along the way.

    With best wishes RRB :)
     
    • Like Like x 5
  16. zjed

    zjed Type 1 · Well-Known Member

    Messages:
    110
    Likes Received:
    153
    Trophy Points:
    83
    I think half the people in this thread were diagnosed in 1972, must have been a bad year for T1
     
    • Like Like x 6
  17. robert72

    robert72 Type 1 · Well-Known Member

    Messages:
    2,884
    Likes Received:
    3,621
    Trophy Points:
    178
    I was thinking the same thing ;)
     
    • Like Like x 4
  18. RuthW

    RuthW Type 1 · Well-Known Member

    Messages:
    1,158
    Likes Received:
    1,921
    Trophy Points:
    178
    Oh, wow! I don't know why these medals make me so **** happy, but they do! I have GOT to aim for that John McLeod medal now!
     
    • Like Like x 2
  19. zjed

    zjed Type 1 · Well-Known Member

    Messages:
    110
    Likes Received:
    153
    Trophy Points:
    83
    • Like Like x 3
  20. Gemma2

    Gemma2 Type 1 · Well-Known Member

    Messages:
    152
    Likes Received:
    125
    Trophy Points:
    83
    Hi. I have been Type 1 for 52years. Now 74years and very soon going on a pump. Bit apprehensive but after reading Pumping Insulin and going on DAFNE course feel ready to take on the challenge.
     
    • Like Like x 12
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook