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Going back a few years!

Discussion in 'Type 1 Diabetes' started by Emirp, Apr 30, 2019.

  1. Emirp

    Emirp Type 1 · Newbie

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    Thought I would add a little more to the comments i made previously concerning my 68 years with type 1 diabetes. When I was first diagnosed very few people had even heard of the complaint, it was referred to as Sugar Diabetes and most thought it was caused through eating too much sugary foodstuff. There was very little awareness in schools and the general public had no idea of the condition. Had I had a hypo at school or whilst playing outdoors very few, other than family or close friends, would have known what to do. School personel were unfamiliar with the condition, no on site nurses in those days. I knew no one in my school or neighbourhood with either type 1 or type 2 condition until my GP contacted me regarding a local boy, some years my junior, was diagnosed. The doctor asked if I would meet with this lad and his mother to offer support and advice.
    I would love to hear how other Type 1 sufferers got on in the early days, did they have any similar problems. What now is the percentage of population with a type 1 condition and how has that number change since the 1950?
     
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  2. Jaylee

    Jaylee Type 1 · Expert
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    Hi @Emirp ,

    Love yer post!

    Summer of 1976 for me. Diagnosed after being driven like the "Sweeny" by my dad after a visit to the GP. Then rushed are on da kiddy ward & given a bed on the spot. It was my 8th birthday.
    After about a week in hospital, I was out & injecting myself.
    September term came round & the "care package" was in a sachel of an 8 year old..
    I was the only D in the village. Until a chance meeting at a fair on our local rec with a guy in his early 20s a couple of years later? who it also turned out in conversation with my mum was T1.
    Actually his girlfriend blurted it out.. My mum took one look at the pint he was nursing from the bar tent. & enquired, "should you be drinking that?" He visibly shrunk & I winced at the comment..

    There were other diabetics I saw waiting at the appointments. But back in the day. It felt more like going to a "rehab" than anything.. At this point I was walking out the appointments thinking I may as well stollen a car..?

    I'll tag in @Knikki , he's been at it longer I believe. & @kitedoc from Australia. @himtoo has some years behind him too.
     
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  3. Fairygodmother

    Fairygodmother Type 1 · Well-Known Member

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    1969 for me and like many at that time there were very few who knew anything about T1. I was at Uni and apart from having some consideration for one of the finals papers when I walked out to treat a hypo, there were no concessions for the year of ill health and struggle that T1 caused.
    I didn’t have much knowledge myself of how to deal with T1 at the time and only really got to grips with it through trial and error. However, most of my friends wanted to have a go at giving me the jabs, it was a treat for them. I don’t think I’d let any friends do that now! I think I probably survived through a combination of luck and bloody mindedness. I hate to think what my HbA1c was back then but there weren’t any of those done until I was expecting my first daughter in 1978.
    Life’s easier now with the plethora of insulin choice and cgm but in some ways a lack of constant awareness gave me more courage to have a go at things I’d definitely think twice about now.
     
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  4. Fairygodmother

    Fairygodmother Type 1 · Well-Known Member

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    And wow, 68 years, 2 years to go for Top Nabarro. You’re amazing @Emrip.
     
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  5. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @Emirp,
    Congratulations, 68 years is a looong time !!!
    I was diagnosed in 1966, at age 13 - 1966 is memorable as the year Australia changed to decimal currency.

    My mother was concerned at how tired I was, having recently been training and performing well at athletics.
    A sweet concoction called 'GI' cordial was my preferred drink at the time - galloons of it.
    I was lucky that my GP was very astute and diagnosed me on the basis of having a ketone breath and sugar in my urine.
    I was in hospital that afternoon - receiving injections and wondering what was going on.

    The physician was another excellent doctor who explained things to me and, as I learned later, even invited my parents to his home for a meal in order to explain what diabetes was and what to expect.
    Things are rather different these days in the 'bedside' manner and approach of most doctors !!
    I recall having a really mean charge sister who thought that I should be able to inject myself then and there - by practising on an orange !!

    My physician arranged for me to have a hypo in hospital and he only missed being there by 5 minutes !! and explained what it was so that I could recognise it in future and know what to do.

    My parents being science trained were very helpful in helping me once home from hospital.
    An aluminium medication tin was re-purposed as a 'billy' to boil up the glass syringes and re-useable needles (long ones)! on the electric hotplate with (new)! metal flyscreen fashioned into a carrier inside the 'billy). No skinny, thin needles back then !!
    A butter dish filled with methylated spirits (metho) was where the sterilised syringe and needles were kept.
    Insulin was Soluble and Isophane (clear and cloudy) - once daily at the start.

    The laundry was the 'laboratory' where I tested my urine with either the 'Testape' strips or the Ames caustic soda in test tube testing kit - how I wished for the blue colour each time.!! No glucose monitors in those days - now until about 1980.
    I had trouble giving myself injections, so my parents purchased a self-injector device , brand name Busher, I think, and later a better one called ? Dekker. No diabetes educators, support groups or camps back then to help !!

    I was looked after medical-wise by my GP and physician until I started at medical school at age 19.
    The hospital clinics were a shocker!! People with amputations, blindness - no soft approach - and some doctors would use those examples as a threat to make me do better with my diabetes control. No thought given to the variability in absorption of the old insulins, no real diet beyond counting portions. The threats were traumatic - the only saving grace was that I can look back now and say that perhaps I am lucky to have suffered only cataracts, carpal tunnel trouble and trigger fingers as complications.

    What probably also helped was getting lots of exercise during teenage years when the BSLs were on a real roller-coaster as I went through growth spurts where I would have to increase my twice daily Soluble and Isophane double or more for some weeks and then quickly drop doses back as the growth spurt finished.
    What I have only come to appreciate lately is that having lots of protein during that time probably meant my BSLs were less affected than if I had hoed into breakfast cereal etc.
    Yes, lots of memories !!!
     
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  6. EllieM

    EllieM Type 1 · Well-Known Member

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    I often wonder about that aspect of being diagnosed with diabetes pre glucometers. No worries about good or bad blood sugars, I just remember the doctors increasing my insulin dose because I'd lost (or not gained enough?) weight when I was 12.

    I was diagnosed at 8, so 1970, though I've no idea of the date (though that was the year that the UK went decimal :)). My mother was T1, so she diagnosed me very early, and though I discovered in adult life just how devastated she was about this (and guilty, sigh) I never knew any of this and was convinced both that diabetes was normal and also that it shouldn't stop me from doing anything. (Go on summer adventure camp for non-diabetics at the age of 14, no problem, though I could wish that they'd talked to the camp organisers about hypos:)). But honestly, I had very very few hypos as a child, probably lots of hypers, but we never knew about them. I remember laughing at newspaper articles which would describe some "brave diabetic" living a "nearly normal life" and thinking how ridiculous it was that a diabetic should be regarded differently than anyone else. And though I knew about hypos, no one talked about diabetic complications till I was adult.

    As I saw a private consultant as a child, I don't think I really met any other diabetics (other than my Mum). I was on MDI, there were no glucometers, just a complicated urine test involving a tablet, 5 drops or urine, 10 of water, and a shake in a test tube. I think you then had to wait a minute (90 seconds??) to see the results of the chemical experiment. My diabetic doctor would change my insulin dose, but that was it. I think I met one other diabetic diagnosed in my last year of school. My mother bought disposable syringes privately so that I didn't have to sterilise syringes like @kitedoc.

    I never had problems with diabetes at school or university (I suspect my blood sugar levels were too high for more than the most occasional hypo) and the only time I actually remember feeling really ill was one bout with flu (the kind where you don't even want to leave bed to go to the bathroom) and one time when I had two desert waffles with chantilly and maple syrup. I also don't remember keeping my insulin in the fridge (as a student in university accommodation I didn't have a fridge).
    When I went to Addenbrookes hospital when I was twenty (finally time to organise my own diabetic health care) they were very keen to get me my first glucometer and get my blood sugars down (not sure whether 13 was my hba1c or my average blood sugar, I didn't know the difference at the time). There were other diabetics at the clinic, but the split seemed to be 50/50 between T1 and T2. The T1s were all young, the T2s all much older. But the glucometer, and the change to basal/bolus, was a life changer.

    I was sent to hospital for a week at diagnosis, and was very proud that I did my own injections and didn't have to practice on an orange. They told me that my T1 mother was in another ward being "rebalanced", I actually wonder now whether she was really doing this or they just told me that to reassure me. But about 6 months after diagnosis I got upset about injections and my mother gave me injections for a few days while I got over it.

    I am very grateful to my parents for hiding any worries about my diabetes and never allowing my diabetes to prevent any activities that I wanted to undertake. Yes, it was something that I had to pay a little attention to (count carbs and don't forget insulin) but it was never a major focus of the family. Yes, there was a jar of dead syringes on the kitchen benchtop (we had two diabetics) and I did not spend pocket money on sweets/lollies, but otherwise everything was normal. Easter was good though, as my parents would buy me some colouring pencils instead of an Easter egg :).
     
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  7. porl69

    porl69 Type 1 · Well-Known Member

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    Hi @Emirp. WOW 68 years type 1. I feel like a newbie now :)
    I was diagnosed Feb 1971. No one knew what "sugar diabetes" was then. Teachers in school didn't have a clue, now that worked to my advantage. Will never forget testing my pee OR the 1 1/2" needles which had to last forever!!!!! Was never allowed on school trips as no one wanted to take responsibility for me! Until my mother went to my high school and told them that I could look after myself and they gave in as long as me and my mother signed a waiver.......oh how easy newly diagnosed have got it now :hilarious::hilarious::hilarious:

    Got a 1001 stories to tell :)
     
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  8. C_Wilson_14

    C_Wilson_14 Type 1 · Newbie

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    Diagnosed in 1968, aged 9, stayed in hospital for 2 weeks, came out on one injection a day, but by summer the next year, I had a nasty appendicitis operation which got infected. But this led me to meeting a young boy who came in with sugar diabetes, 2 years younger than me, he went on to have his appendix out & then got yellow jaundice, he stayed in for 6 weeks, I also developed yellow jaundice & ended up staying 7 weeks & 4 days!! Came out doing my own injections, after practising on those oranges. My uncle who was also a type 1, lived next door to us. My brother hated having a secret sweet without me, but was so grateful when I went onto mdi a number of years ago, so I could if I wanted, have a treat. My primary school, were good & gave me a slightly different lunch to every one else, but there were no nasty comments, because of this. Secondary school became packed lunches. An Easter egg was the cardboard ones you can still buy today & a small gift was put inside. How times have changed.
     
  9. Parisemo

    Parisemo Type 1 · Active Member

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    I was diagnosed with type 1 in 1958 being the first in my family to have diabetes. Back then the syringes were glass and kept in metholated spirit and the needles were thick and I had to use them till they were blunt. How times have changed. I only had one dose of insulin a day. There were no machin bues to test your bloodsugar levels, we tested our urine with clinitest tablets. I do not remember life without diabetes but it did not effect my life at school. I did all sports that I was allowed to do in those days, even football and cricket but was not allowed to play in the school teams as those sports were boys only. I did suffer Retinopathy and Necrobiosis in my early 20's due to rebelling in my late teens early 20's wanting to be normal like my friends. Meaning I did not take care of the diabetes and now I am registered blind and have had skin grafts on both shins. I learnt the hard way and have taken good care of myself since then. Diabetes is a way of life accept it and get on with it. You can do anything you choose just take care of yourself. I don't understand people who cry all the time about it, it's not M.S or terminal cancer or other incurable deserves. My motto accept it and get on with it. Life is for living not being miserable, let's face it we can't change it !
     
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  10. barbarapreston

    barbarapreston Type 1 · Member

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    Yes,things have changed a lot since I was diagnosed in February 1954 aged10.The doctor came to see me at home on the Friday and arranged for me to be admitted to hospital on the Monday.I cam remember drinking cabbage water at home and eating very little.I was in hospital for 6 weeks and taught to inject using an orange.Soluble insulin once a day and black and red lines for a diet.Black was carbohydrates and red protein.2 Marie biscuits or an apple were 1 black line.I was at a convent school and stayed for dinners.The nuns were very apprehensive about my diet and arranged for my mother to come to the school dining room and cook my meals!So she became a dinner lady and was eventually employ as a tailored to mend habits.I was the only diabetic in my home town for a few years and saw the consultant every week.How different from today when I see the nurse at the surgery once a year.Apart from the cost of insulin,I don't think I have cost the NHS too much as I have only been in hospital once since diagnosed and that was through eating sweets on the sly.I am happy to keep injecting 5 times a day and adjusting my insulin when necessary .I have read today that there are 3.1million diabetics in the UK but only 10% of those are type 1.
     
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  11. Jaylee

    Jaylee Type 1 · Expert
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    Hi,

    I was trained on an orange.
    I had pockets full of "emergencies" when sent to school..
    Secondary school for me was packed lunches too..
    Easter was the "mug" with the egg replaced by a pair of socks.. I believe my sister got an extra egg out of the deal. ;):)

    It's great hearing from guys diagnosed even longer than me...
     
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  12. Mally666

    Mally666 · Newbie

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  13. Mally666

    Mally666 · Newbie

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    I would totally agree with you about anyone ever heard of what we in them days called it Sugar Diabetes, i became Diabetic in late 1952 although I had the symptoms earlier that year I or anyone else new what it was, I remember sweets were still on ration then!! Urine testing was awful, having to boil a test tube over a gas stove I soon got sick of that , I remember almost falling into a hypo, too afraid to tell the teacher incase they did not understand I managed to last until I got to the front door of home when I collapsed on the door step it was a good job somebody was in and heard me. Now everyone and there granny has Diabetes.
     
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  14. ShirleyD

    ShirleyD Type 1 · Newbie

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    1959 for me age 10. Lots of hypos during the night and coming round in hospital the next morning. I was the only person with diabetes all through my schooling. Terrible teenager but calmed down early twenties. Have had two daughters and now have 5 grandchildren all healthy but diabetes has never stopped me living a full and active life with lots of travelling. How things have changed from boiling syringes to insulin pumps and sensors. I know which I prefer.
     
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  15. Jaylee

    Jaylee Type 1 · Expert
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    I got vivid memories of geting a hypo in an English class & trying to "ride it out" till the end of the lesson, it was approaching lunch.. & the longest sweaty, glazed 5 minutes of my life...
    I had a pocket full of treatment, but was too scared eat in class. & make a fuss. This teacher was formidable.
     
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  16. Diabetic46years

    Diabetic46years Type 1 · Member

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    I was 5 years old living in South Africa in 1972 when I was diagnosed. I have found it a very difficult disease to live with. Thankfully the development in treatment has helped, but I still would have preferred a life without it!
     
  17. Tongey

    Tongey Type 1 · Newbie

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    Peter, it is so good to see you here.
    I was diagnosed in 1958 as a 'Sugar Diabetes' 2 year old and appear to have gone through the same. Zero knowledge outside of close family and certain Specialists. In fact my Specialist was a Doctor Thompson at Pendlebury Hospital and he was also a Diabetic.
    I have a twin Brother, same sack, who has not got any murmurings of any Diabetes. Thankfully he saved me a couple of times when I Hypo'd at school.
    I am pleased to report absolutely zero interference from the dreaded Complications that I was warned I would suffer from.
    I would love to talk to you.

    [ Personal details edited by moderator.]
     
    #17 Tongey, May 3, 2019 at 9:33 AM
    Last edited by a moderator: May 3, 2019
  18. TerriH

    TerriH Type 1 · Member

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    I too have been Type1 for 54 years now and developed it at the age of 17 when I was in the lower Sixth Form at grammar school. I too can relate to the Clinitest, "orange" injection practice, and my stay on a general ward in hospital to be stabilised for a week after which i begged to be let out and go home. Prior to my diagnosis I had lost a lot of weight and was constantly thirsty, so much so that my mouth and tongue burnt and nothing could help the thirst no matter how much I drank.
    The thought of dealing with this for the rest of my life when I was 17 filled me with horror and I cannot say that being diabetic has been in any way a positive experience and has led to a lot of heartbreak in my life.
    On the plus side I did get my degree and teaching qualification but as I get older life is not any the less complicated as I go "hypo" after any exhersion even though I am on a very low dose of insulin.
    I have made it mostly through my own efforts and being "bloody minded" as the medical profeesion has done very little for me apart from one or two brilliant individuals.
    To sum up I think that diabetes is a very complex and difficult health condition and ALL diabetics no matter how young, old, abiding by the rules or not, have mental and physical stength by the bucketload and should be very proud that they have survived and managed to live their lives in spite of diabetes.
     
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  19. helensaramay

    helensaramay Type 1 · Expert

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    Hey @Tongey you may not want to share your email address so publicly.
    If you want to contact Peter directly you can personal message (PM) him through the forum: if you are on the website (sorry I don't use the app), click on the envelope on the top right of the page and "Start a Conversation".

    You can also edit your message above to remove the email address.
     
  20. endocrinegremlin

    endocrinegremlin Type 1 · Well-Known Member

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    I was diagnosed age 6 in 97 so there were more people aware by the time I was diagnosed and I was sent home with a blood kid. They were not that common on the NHS for those with good control who didn't ask questions though. Both my aunt and mum (at that time t1 33 & 21 years respectively) were stunned at my new gadget and demanded one too.

    I was sent home within days because of mum. Because of that I got a sort of crash course in 'what you half listened to before is now VERY IMPORTANT'. I had helped mum with hypos before and such. I didn't need to make the change to sugar free drinks as that is all we had. I was mostly miffed I had to take different insulin from mum.

    School was horrible. I had to eat a milkyway before gym eat week and was hated for it. My first in class hypo led me to being put on the teacher's seat at her desk to eat digestives while she converted our usual schedule into storytime. She sat on a regular seat and my classmates glared at me from the floor. The diabetes, in a way, was the easy part. People were hard. I was offered camps to go and hang out with other type one kids but I was painfully shy and I hated playing sport. Being wrapped with strangers to do things that might make me hypo was hell to me. It was nice to know they existed though. I was lucky in that I am a family of type ones. My mum and aunt are on one side and when I was in my late twenties their brother joined us. My father's brother was type one too. I wasn't the odd one out, I guess and that helped. Still, it is always hard.
     
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