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New blog as I learn to live with T1 diagnosis

Discussion in 'Newly Diagnosed' started by TIGERLILY1991, Aug 10, 2019.

  1. TIGERLILY1991

    TIGERLILY1991 Type 1 · Member

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    Hi guys,

    I was diagnosed as Type 1 a couple of weeks ago and I have decided to start a blog about my journey.

    https://www.diabeticunicorn.co.uk/

    Please feel free to check it out x
     
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  2. TIGERLILY1991

    TIGERLILY1991 Type 1 · Member

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    Thanks Knikki.

    At the moment I am on fixed doses of Insulin. My DSN said I won't be carb counting until I'm out of my honeymoon period. I'm finding it difficult on fixed doses as I'm either hypo'ing or way too high! I will check it out though, I want to get as ready as I can for carb counting and bolusing.
     
  3. ert

    ert Type 1 · Well-Known Member

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    Great blog. I've just signed up. I'm new to this insulin malarkey too.
     
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    #3 ert, Aug 10, 2019 at 3:40 PM
    Last edited: Aug 10, 2019
  4. becca59

    becca59 Type 1 · Well-Known Member

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    As someone who started carb counting 24 hours after diagnosis, I fail to understand the thought processes here. I too had a honeymoon period which went on for about 3 years. But I became as balanced as I could be and ate pretty much what I wanted. It wasn’t an issue and quite frankly was well within any bodies capabilities.
    If you remain in honeymoon for a long period of time it’s going to be a right drag.
     
  5. TIGERLILY1991

    TIGERLILY1991 Type 1 · Member

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    When I asked the DSN about it, she said about the honeymoon period and just said there was no point. This was only over email, so when I see them face to face on 23rd August I'll ask again. I almost feel like I'm eating more than I want to be to prevent hypos at the moment which seems illogical to me x
     
  6. Japes

    Japes LADA · Well-Known Member

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    Once I'd proved to my DSN and the dietician I knew what carbs were and could count, I was off fixed doses within a month! It certainly felt to me as if I were "feeding" the insulin once my blood sugars had stabilised. Which took about a month, anyway.

    We think I'm having occasional moments of my pancreas spluttering into life, 16 months on from starting insulin, (LADA diagnosis) and 4 years from initial mis-diagnosis (T2). But, it's certainly much less frequent than it was from when I was first started on insulin.
     
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  7. Japes

    Japes LADA · Well-Known Member

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    Blog checked out! I like it!

    LADA - another acronym for you, Latent Autoimmune Diabetes in Adulthood. It's a very slow onset T1 mostly in older adults - I was 50 when it started, and easily mis-diagnosed, especially if you present initially as the classic clinically obese middle-aged soul who looks totally inactive and as if they don't watch what they eat.... luckily I landed with a GP who knew about LADA at the critical point before I landed in A & E with DKA, which was probably less than a week away.
     
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  8. TIGERLILY1991

    TIGERLILY1991 Type 1 · Member

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    Thanks for both comments! I am definitely thinking of trying to convince them to let me try carb counting

    Also thanks for the acronym, I'll get it added to the list x
     
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  9. Circuspony

    Circuspony Type 1 · Well-Known Member

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    I'm still in my honeymoon 2 years post diagnosis. Carb counting is hit and miss (some days I barely need any fast acting) but I'd hate to be on fixed doses. Off to read your blog
     
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  10. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Hi, @TIGERLILY1991 , fixed doses are fairly standard with newly dx'd as it reduces the amount of variables involved and makes it easier for the docs to figure out ratios.

    It won't last forever, so I'd recommend going with the flow for now - there'll be plenty of time for figuring out your own techniques once they let you off the reins, although I do agree with the other posters that this should really only be a few weeks or a month or two.

    Another acronym to get familiar with is CGM, continuous glucose monitoring. A small device gets stuck on your arm or stomach and sends bg readings to your phone every 5 mins, so you can track how bg is moving. It makes managing bg levels several hundred percent easier when you can actually see how those levels are moving.

    One thing to be aware of is that there are dozens of variables involved, which is why x units of insulin for y grams of carbs won't necessarily work out the same way two days running.

    That can lead to newly dx'd becoming hugely frustrated - they're playing by the rules, but T1 isn't.

    There are no quick and easy answers to this. Sometimes T1 is just plain unpredictable. With time, though, and cgm, you'll figure out plenty of techniques to even out the randomness.

    Stephen Ponder's book, Sugar Surfing, is a good read on both using cgm well and psychologically accepting that we are dealing with a moving situation.

    Unlike other conditions, which basically involve taking a pill or two each day, T1 involves active management where the patient makes the decision. Ponder's book is good at getting the point across that we can actively steer and influence the direction of our bg.

    I've found it helps to not think of T1 as a threat or enemy. I think of it more as a small child which needs to be looked after - sometimes T1 behaves, sometimes it doesn't, but whatever it's doing, you're always going to look after it.

    Good luck!
     
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  11. TIGERLILY1991

    TIGERLILY1991 Type 1 · Member

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    Thanks for the information Scott-C - I hate not really being in control so just finding it frustrating. I was thinking about looking at a CGM as I'm a Prison Officer and will have lots of variables for my glucose, like adrenaline for one! I will also check out the book x
     
  12. Scott-C

    Scott-C Type 1 · Well-Known Member

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    William Lee Dubois, Beyond Fingersticks... is worth a look too. It's on kindle, as is Sugar Surfing.

    It's about 10 yrs old so is out of date on current tech but gives some still relevant solid advice and basic principles on what you can and cannot expect from cgm.
     
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  13. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Hi and wishing you good luck with your blog.
     
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  14. becca59

    becca59 Type 1 · Well-Known Member

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    Just sat and read all the blog. Loved it, brought back lots of memories. Google is amazing at helping you to not see the obvious lol!
     
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  15. LooperCat

    LooperCat Type 1 · Well-Known Member

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    Love it! Do join us over on the T1 Stars thread if you fancy, there’s some great support there too :)
     
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  16. Antje77

    Antje77 LADA · Moderator
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  17. Kim Possible

    Kim Possible Type 1 · Expert

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    @TIGERLILY1991 welcome to T1-world.
    It’s a pest but as @Scott-C said, I don’t treat it like the enemy, I treat it like a small child who never grows up (the Peter Pan of autoimmune diseases, perhaps). And just like you can never 100% control a small child, you cannot alway control Diabetes. Trying to do so will drive you crazy. I like the idea of “managing my diabetes”. It implies trying to keep it vaguely predictable most of the time but I won’t can upset if it throws a spanner in the works every so often.
    The other thing very important to me is “balance”. Diabetes is only a small part of who I am. It does not rule my life. Sure, my diabetes management would probably be better if I ate the same food every day, did the same exercise every day, sat at my desk doing a mundane, unstressful job every day, kept myself in a bubble to avoid getting ill ...every day, never drank alcohol, ... But, if I did that, I would no longer exist, I would not have the excitement I strive, I would not enjoy trying new foods, I would miss out on fun with my friends, I would be a boring, unhappy shell.
    So, I take risks with my diabetes with food, exercise, travel, fun, work, ... and measure my BG regularly, watch for trends and learn as much as I can about diabetes.
     
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  18. Marie 2

    Marie 2 LADA · Well-Known Member

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    Hi! Nice blog! First call your diabetic team for an adjustment in dosing if you are dropping too much.
    I started out with a background of slow acting and then fast acting was added. But I immediately started carb counting with fast acting. LADA/type 1 can last 8 years plus in an adult, weeks in a child. It's erratic to figure out dosing when you are in your honeymoon phase because sometimes you still make insulin and sometimes you don't. So you are safer trending to a higher set of numbers than later when you can have more control.

    There is a huge difference of insulin needed with 120 carbs (pizza easily) and a 16 carb meal. You adjust for that by carb counting and dosing accordingly. It's just my opinion but you will have to learn eventually as a type 1 to carb count so I would start reading about it and start asking about being sent to a course for it.
     
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  19. TIGERLILY1991

    TIGERLILY1991 Type 1 · Member

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    Thank you Marie 2. You have helped explain some of my frustration - sometimes I can eat a fair amount of carbs and have a small dose of insulin and then drop into a hypo. Other times I have not so many carbs with a slightly higher dose and I'm on 14+mmol/l. As you say, probably my body inconsistently producing insulin!
     
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  20. Marie 2

    Marie 2 LADA · Well-Known Member

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    Be sure to take a quick sugar snack with you whenever you leave the house. It also helps to have it by your bedside for easy reach in the middle of the night.
     
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