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explaining what it's really like to live with Type 1

Discussion in 'Type 1 Diabetes' started by himtoo, Jun 29, 2016.

  1. Ray B

    Ray B Type 1 · Active Member

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    70 years with Type 1 is amazing and I can say that with some certainty as I have had Type 1 for 74 years. Born 1946, probably with diabetes but not diagnosed for 8 months.
    Things were very different then with insulin produced from pigs, which probably explains the shape of my nose (only kidding).
    I remember injecting once day, before breakfast with 80 Lente insulin. No easy blood glucose testing which consisted of dropping 10 drops of water and 5 drops of urine into a test tube and placing a ‘Clinitest’ tablet in and watching it boil. This would produce a coloured solution, blue represented a good result and orange high sugar level.
    Once a day injection was also more difficult to manage as once in your system you could find yourself ‘chasing’ your blood sugar all day.
    I am presently taking Humalin QA insulin and Lantus background.
    Played sport all my life, including marathon running, cycling, football and now I teach Pilates.
    It is great to see so many long term diabetes people and hopefully this allows newly diagnosed to have some sense of positivity in their life.
    Well done
    Ray B
     
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  2. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Hi there, @Ray B I'm sure you have a nicely well structured nose lol
    I too started on pork Insulin, beef Insulin was also available.
    I am a fit and active person too, I have been through the wars, but always get up and dust myself off. I had my daughter at 42 1/2 which was amazing, she is 19 now.
    I love to read stories of type 1's who have had this condition for such a long time, decades, and they keep going and who are so inspirational.
    Best wishes, take care and stay safe :)
     
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  3. Electra Darling

    Electra Darling Type 1 · Member

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    Hi, I’m new to the forum. I’ve had diabetes for 18 years, diagnosed when I was 12. I’ve been on an insulin pump for 15 years, and am self-funding CGM at the moment. I also trained as a doctor, and until recently was working as an orthopaedic surgeon (I have since quit in favour of an alternative career).

    I think we are taught diabetes pretty terribly at medical school. Almost all doctors, except for the diabetes specialists, are terrified of prescribing insulin and changing insulin doses, because it’s a very unpredictable drug which behaves differently in different people. When I’m explaining to colleagues what it’s like to live with diabetes, I start by reminding them of how nervous they are around insulin, and then tell them to pretend they’re 12 and it’s their own body that they’re treating.

    Type 1 diabetes is one of the only conditions where doctors give us patients the control over our own medication doses. They tell us that it’s our responsibility, that we can never take a day off, and when our HbA1c goes awry most doctors, in my experience, blame us, the patients. Even the language “what’s your control like?” puts all the onus on us to manage our incredibly complicated condition, and sets up inevitable feelings of blame and shame when we struggle.

    I’m sorry to be so negative when so many others here are so positive and upbeat, but my honest answer to the question of what it’s really like to live with type 1, is that it’s exhausting and disheartening and demoralising, and I would give anything just to have one day off.
     
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  4. MarkMunday

    MarkMunday Type 1 · Well-Known Member

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    That is how it is supposed to work. More importantly, the doctor should help the patient feel in control. Only then can patients actually take control and do what needs to be done. The problem is that doctors have very limited understanding of the challenges patients have to deal with. They also have very limited understanding of using insulin in a way that matches insulin action with insulin requirements. Perhaps expecting doctors to have such insights is not realistic.

    After doing this 42 years, I now just tell the doctor what I need, based on my understanding of the requirement. I use a variation on the typical MDI protocol - 13 units Lantus & 8 units Actrapid in the morning to cover basal and Novorapid for bolusing when necessary. When combined with a ketogenic way of eating, it works perfectly for me. But I had to work it out for myself with very little support from doctors. Patients often feel abandoned by doctors and it is a pity that they don't see their role more broadly.
     
  5. ert

    ert Type 1 · Well-Known Member

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    It's ironic that we use a drug that saves our lives but can also kill us.
    I felt insulin would kill me for a while after my diagnosis. I self-funded a Libre and MM straight away after accepting that I needed insulin to save my life. I'm really stable following Dr Beinstein's Diabetes Solution, so feel a lot more self-assured now that my BS's have flatlined. It's not the usual way to managing type 1 but I get BS results.
    My GP has arranged for the Oxford first-year medical students to try to diagnose me, with my initial symptoms, each year in the surgery. I'm amazed at how little they know about diabetes, in general, let alone type 1.
     
  6. KK123

    KK123 Type 1 · Well-Known Member

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    I guess it's a question of them having to, what other condition I wonder requires so much attention every minute of every day? Trying to emulate a working pancreas that in a normal person releases and stops the secretion of insulin every second as and exactly when it needs to. Until they find a cure or invent a system that requires NONE of our personal input then 'it's over to us'. x
     
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