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First thoughts when diagnosed? (Type 1)

Discussion in 'Ask A Question' started by Llinz04, Mar 6, 2018.

  1. Llinz04

    Llinz04 Type 1 · Well-Known Member

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    I'm curious to see what everyone's first thoughts when they got diagnosed. When were you diagnosed, and how old were you. Thoughts about the present and the future.. needles and diet that would have to be followed, checking blood levels everyday for the rest of your life...

    Let's see if there were similarities in people's stories, share your thoughts :bookworm::)
     
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  2. Mr_J

    Mr_J Type 1 · Member

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    I was diagnosed with type 1 just over 3 weeks ago at 34, and I'm weirdly calm about the whole thing.
    I'm still getting used to the routine of constant bg tests and daily injections, and had a few "waah" moments over certain foods, like the tub of ice cream I see every time I open the freezer!
    I do wonder, as time goes on, if I'm going to have a proper meltdown over it all once the novelty wears off though.
     
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  3. slip

    slip Type 1 · Well-Known Member

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    Aged 27, part of me was glad/relieved of the diagnosis - finally I can start to feel better (which was pretty instant after my first dose of insulin). And all this injecting and testing malarky, ah so what? they said they'd be a cure in 10 years.............that was 20 odd years ago

    and now I think ah so what? it's what I do, have to do (to stay alive) and keep it under control to stay well.
     
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  4. novorapidboi26

    novorapidboi26 Type 1 · Well-Known Member

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    I was 15 and had been exposed to type one diabetes all my life because my younger brother had it....

    I don't actually remember a doctor telling me face to face in hospital that I had diabetes, it was just assumed silently which I find strange....it wasn't a young child who couldn't handle it.....

    I distinctly remember going through several emotional states, denial, anger, grief.....

    It hasn't really effected my life or stopped me doing anything I want to do.....I do believe that when my time is up there will be a connection with the diabetes....

    getting a diagnosis today isn't so bad as the knowledge and technology that exists can make life a lot easier with diabetes.....its just unfortunate that not all diabetes have equal access to the knowledge and tech....
     
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  5. Deleted Account

    Deleted Account · Guest

    My first thoughts were very mixed.
    I was in my mid 30s, had been feeling run down for a few months and had had a couple of previous doctors' appointments where they had suggested a virus or UTI or something else so I was relieved to finally have something which could be treated.
    I knew nothing about diabetes at the time because no one in my family or friends had it so I was scared and upset but not sure what I was scared and upset about.
    However, my overwhelming emotion was determination: the diabetes nurse I met told me diabetes should not stop me doing what I want so I was determined to prove that ... including doing the Moon Walk (26 mile night time walk around London for Breast Cancer) in a couple of months.
     
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  6. Rokaab

    Rokaab Type 1 · Well-Known Member

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    I'm afraid my first thoughts are not going to be very useful as I was diagnosed when I was two, when my thoughts were probably along the lines of whether I could eat that thing in front of me at the time (which may well have been a soft toy, a worm in the garden and various other non-edible items :))
     
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  7. Circuspony

    Circuspony Type 1 · Well-Known Member

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    I was 43 and had a suspicion already that something wasn't right. My eyesight was playing up and feeling thirsty had turned into an obsession with drinking. They thought I was type 2 to start with but I had already done some online research and was ticking virtually every box for type 1. So torn between relieved in A&E when they confirmed they thought type 1 and started treating me and annoyed / angry that it had happened to me.

    Everyone said I took the news calmly but by the time the s*** hit the fan in A&E I'd already guessed what was wrong and what the outcome was going to be so it wasn't a shock.
     
  8. dancer

    dancer Type 1 · Well-Known Member

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    I was diagnosed at 24. My GP told me not to go home and tell my mother I was diabetic, as it could be something else (even though he was referring me to the diabetic clinic). My consultant said "I know you're hoping that there's been some mistake but I'm afraid you are diabetic. He asked how I felt about that and all I could do was point to my tears.

    I was taken up to the ward and eventually managed to get a grip. I knew absolutely nothing about diabetes except you couldn't eat sugar and couldn't walk barefoot (good old TV's Marcus Welby MD!) A staff nurse came to give me my first insulin injection. She was chatting away, telling me I would soon get used to it all. As she was getting rid of air bubbles she mentioned hypos (I thought this meant hypodermic needles) and she said, "You must have seen people collapsing in the street, as they've too much insulin in their blood. That's a hypo - you'll just have to make sure you're careful, so it doesn't happen to you." That's when I started crying again!

    I thought diabetes was pretty disgusting, as I had to test my urine.
    I was relieved that I could still eat some sweet things (tea biscuits, digestives and ice cream) but hadn't realised that I would have to limit other carbohydrate too.

    It took me about 2 years to accept it and stop feeling sorry for myself.
     
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  9. EllsKBells

    EllsKBells Type 1 · Well-Known Member

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    Well at first in the doctors, I was shocked, and didn't really process it. Later, when I got to A&E, my first real thought was 'wow, I guess I won't be able to donate blood'. This was followed by me laughing hysterically for a while. At this point my blood sugar was nearly 40, so I'm going to guess it wasn't the most rational response.
     
  10. Carol11

    Carol11 · Well-Known Member

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    I was 60 and was in total shock. I am the only T1 in the family. I have such a visceral, absolute hatred for this disease. It is such a violation & an assault on my body. And I have 2 pages of such descriptions of this! (My venting) I can never & will never accept what has been done to me.
     
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  11. Andy V

    Andy V Type 1 · Newbie

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    I was 18 months so I was too busy concentrating on the strange sensations caused when filling my nappy. Happy days.

    Being diagnosed Type 1 at that age means you have no idea what it's like to not test, inject or be observant of what food you eat.

    That said I have periodic moments of being utterly f**ked off with it all ('scuse the expletive moderators, this warrants it) and knowing that tomorrow is just another day of the same. I long to eat a plate piled high with cheese cake or wake to a breakfast of fresh, very ripe pineapple, mango, orange, melon, guava and kiwi...I'm talking a mountain of it. Been walking the walk for 48 years. Maybe one day they can stick some stem cells in me so I can grab that cheese cake bonanza
     
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  12. gilliananne7

    gilliananne7 Type 1 · Member

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    I 'm 63 and was diagnosed at 61, initially with type 2, and had a bit of a battle to get the diagnosis of type 1. I'm also Coeliac and had 2 brothers with type 1 ( my elder brother sadly died of diabetes complications at 58). It took 6 months to have a first appointment with a consultant who confirmed from further blood tests that I was type 1. I was already on insulin by then. My initial reaction was relief. I'd had all kinds of symptoms including lethargy, weight loss and urinary frequency. My GP had checked me for diabetes 18 months before so didn't do this again. I was also very low in iron. It did take a while for the novelty to wear off though. After about a year of finger pricking, injections and hypos I got very low about the whole thing. I now have 2 other autoimmune conditions to deal with- Polymyalgia Rhematica and Giant Cell Arteritis for which I'm on high dose prednisolone. This throws my blood sugar and my hb1c is far too high. I try to be positive about all of this but sometimes it does get me down and I start to feel sorry for myself. All my conditions, including type 1 diabetes, are treatable though and it's great to have the NHS. Because i have diabetes later and had coeliac at 40 I missed all the problems of growing up with these conditions. I'm also hopeful that the late onset will not significantly shorten my life expectancy. A positive mindset (mostly) is the biggest contribution I can make to managing this annoying condition .
     
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  13. videoman

    videoman Type 1 · Well-Known Member

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    At the age of 14 in 1960 I thought what a out come to love a nearly "normal" life for the next 50 to 60 years then ? well I lived to 71 not bad ? Ifonly all this modern treatments were not available then
     
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  14. Interaud

    Interaud Type 1 · Well-Known Member

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    Diagnosed T2 originally 3 years ago aged 49. but insulin dependant and treated T1. Scary, read loads of stuff, fell into routine and acceptance and pretty damned good BG control. HOWEVER, feel I'm turning a bit of an OCD person with clocks, timing of tasks and what has to be done at certain times/being in control of normal life stuff. Sleep **** with too much over-thinking ahead planning for next day's obstacles
     
  15. videoman

    videoman Type 1 · Well-Known Member

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    Hi Interaud; Don't worry as you will live through the first few months and then just relate it to haveing meds every day and not a lot of sugars
     
  16. bobandpat

    bobandpat Type 1 · Well-Known Member

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    24 when I was diagnosed type 1. GP had done lots of different blood tests over a 10 month period as the blood sugar ones always came back as normal?!? Must admit to being relieved as I was convinced I had cancer and didn't want to leave my 2 littlies motherless. 45 years ago now so seen lots of improvements in diabetes care.
     
  17. Neoncat

    Neoncat Type 1 · Well-Known Member

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    I followed the classic "stages of grief", starting with denial! Not in that I refused to take my injections or test or anything like that. But no one in my family had it so we didn't really understand what it meant. I was home from Uni and my Mum came with me to the doctors because my little brother had (an unrelated) appointment too. He told us to go straight to A&E but we didn't understand how urgent it was so we went home first and my Mum cooked me a special lunch to prepare for the hospital (poor Mum when we realised later!). I was very DKA so it was straight onto a drip and constant monitoring. I remember sitting there thinking "oh there has been a mistake, I am sick NOW but I've been stressed with exams, I haven't been eating properly" (not surprising based on how sick I was!) "tomorrow someone will tell me that we just need to treat this and then I can go home" Sadly that was not the case!
     
  18. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    I was pretty excited at the age of 10.5 to get 2 weeks off school staying in a children's ward. Counting 'lines' and injecting oranges (parents had to do this though no idea why...). Still in the era of urine testing and diabetics not expected to live more than 25 years post diagnosis so my parents may have been terrified (although no Dr Google in 1981 so perhaps not..). It has been up and down for 36+ years since and as my 3 kids approach the same life stage I do watch and think about how bad I'd feel if any of them got type 1. Roll on transplanted beta cells or, more likely, the artificial pancreas!
     
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  19. therower

    therower Type 1 · Well-Known Member

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    Diagnosed at 27 yrs old ( 27 yrs ago ).
    Suspected something was wrong prior to diagnosis but with a lack of internet/ information back then I actually knew very little about diabetes and it's seriousness.
    On being diagnosed, I thought WOW I'm a DIABETIC TYPE 1. Ignorance can be bliss I guess.
    For some reason I'm not entirely sure of I just accepted and embraced being diabetic.
    Injections with the old syringes on occasion were difficult, spent many a 10 mins trying to find the courage to inject.:):).
    Diet was never really an issue, dietician said " eat healthy and cut out junk food " and it worked and still does.

    I feel sorry for a lot of newly diagnosed T1's. With the internet, forums and google there is just to much information for the beginner.
    Keep it basic , keep it simple at first.
    Time = experience = control.;)
     
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  20. Scott-C

    Scott-C Type 1 · Well-Known Member

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    That was a cruel ruse when they got me to do that on my first day - for a moment, I thought, this ain't so bad, I just need to carry an orange around with me and inject it every now and then...
     
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