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New to this and feeling overwhelmed

Discussion in 'Newly Diagnosed' started by ReadyCrowd, Nov 3, 2021.

  1. ReadyCrowd

    ReadyCrowd · Newbie

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    Hello there,

    Hopefully I'm not breaking any rules by posting here. I was diagnosed on the 15th of October, so I'm not entirely confident I qualify as newly diagnosed even though I sure as heck feel that way. I'm going to be honest with you, the last couple of weeks have been a real struggle for me emotionally and physically; as it stands I'm deviating between the feeling that I'm finally coming to terms with my diagnosis and breaking down randomly during the day (usually when I wake up and before meal times). Aside from the stress and anxiety I'm feeling over all of this, the learning curve feels so steep right now due to the relentless torrent of information I've had to take in these past two weeks. I'm desperate for my life to return to some kind of normalcy but I feel as though I'm stuck in a loop.

    I'm sorry in advance, I haven't even introduced myself and I'm here dropping a big old rant. My name is Andrew and I'm 35 years old. As it stands I'm currently waiting on the results of a GAD test; in the meantime I've been placed on insulin as the specialists here in Scotland strongly suspect I'm type 1 due to how quickly my symptoms appeared and escalated. I've come to understand that it's fairly rare to receive a type 1 diagnosis at my age and that I'm fortunate that it was detected before I had a major incident. My last (and first) a1c came back at 124 which I'm told is very high.

    As it stands I'm trying my best to get familiar with counting carbs and dosing myself as best I can. I've been given a Libre 2 thingy and while it's been really useful I can't help but feel as though my life is turning into a graph as I focus on trying to flatten the spikes I'm seeing every time I stuff food into my face hole. While my healthcare team have been telling me I'm doing great for someone newly diagnosed, I feel as though they'd say that no matter what so it would be great if I could discuss the results I'm seeing and get some perspective. I've mostly been struggling with this alone because the people closest to me don't want to talk about it, which is rough because it's really what I need right now.

    I'd really appreciate any questions, input, advice or even kind words you might have to offer.
     
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  2. becca59

    becca59 Type 1 · Well-Known Member

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    Welcome to the forum @ReadyCrowd. It is very early days in your diagnosis. Accept that the feelings you are having are perfectly normal. You are having to change the whole way that you think about eating and living with this condition on a daily basis. It will take time. Yes at the moment there is a torrent of information. Before you know it all this will be second nature. Listen to your medical team, take each day at a time and don’t beat yourself up over results. Within weeks you will have settled down and be feeling more confident.
    It is a shame that other people in your life are not open to talking about it. Mention this next time you speak to your DN there are professionals you can talk to. Plus we are here on the forum for all questions no matter what they are. There is no such thing as a silly question.
    Just to point out, age is no barrier to a type 1 diagnosis. It is very common to be much older. I myself was 54.
     
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  3. PenguinMum

    PenguinMum Type 2 · Expert

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    Hello Andrew I am not T1 so can’t give you any practical advice but would just say it is very early days, it is a shock whatever type you are, the great thing is you want to do the right thing and learn how to manage it. This forum is an absolute godsend because it is the one place where you will get support and understanding in a friendly manner
    Best wishes to you.
     
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  4. Fazzy

    Fazzy · Member

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    Hi Andrew,
    It will get easier with time and you will get use to managing your diabetes. I was diagnosed as type 1 at 43 years old after getting very sick quickly and my HbA1c was off the scale. Technology like the libre 2 really does help manage the condition but I found I really had to go through a steep learning curve particularly understanding how different foods effect me and getting use to the injections. Talk to your family about it as it is important that you have the support available from them.

    This forum is a great resource
     
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  5. nicki92

    nicki92 Type 1 · Active Member

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    Hi Andrew, I'm also new here, got diagnosed with type 1 at the end of September at age 28. (My HBA1C was given as a percentage but an online calculator suggests it was around 150...)
    I'm sorry you're not able to talk about everything with the people around you. I'm the opposite -- I've talked so much about it all.
    Currently everything still feels pretty ******, but within the last week I've started exercising (running & cycling) again which has felt really good, though I have a long way to go with understanding the best way to manage my blood sugar levels. I feel like I'll just end up eating a load more food and put on weight exercising as a result!

    I'm based in Berlin, and when I was diagnosed the advisors in the hospital told me about a local (facebook) group of people with type 1 who meet up once a month for a drink. I'm going today for the first time, but look forward to meeting them all. Maybe there's something like that local to you?
     
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  6. Soplewis12

    Soplewis12 Type 1 · Well-Known Member

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    Morning Andrew,
    I was diagnosed at 21 and am now 52 but still remember the shock of diagnosis. Please do not be hard on yourself (from one person who learned through experience). Just now for you is just a period of settling down & getting to know your bodies needs. With regards to the food spikes always make sure you bolus before eating, follow the guidelines for your type of bolus insulin. Great that you have a libre as this will help. I started using an insulin pump in March, which was another huge learning curve. 9 months down the line I'm feeling confident in using it, joined a gym, etc.
    You will get there it just takes time, be kind to yourself.
    I am also Scottish, NHS Greater Glasgow & Clyde. What health board are you with?
     
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  7. ReadyCrowd

    ReadyCrowd · Newbie

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    Hi @becca59, @PenguinMum, @Fazzy, @nicki92 and @Soplewis12 - thank you for dropping in and saying hello!

    I'm doing the best I can to keep up with it all - I've recently been given my insulin-to-carb ratio of 1 unit per 18. Is that a high number? I've been given a target of 8 as of last week but I'm consistently finding that I'm dropping to numbers below that, so my healthcare team have offered to switch me to a half unit pen as they don't want me coming down so quickly from the 19 and 20 range I was at a couple of weeks ago. Is this something I should be concerned with? I've only just gotten used to taking the NovaRapid so for the meantime I've said I would think about it.

    I know that when I start dropping below 6 my vision goes blurry and I begin to feel irritable, tired and lightheaded but I'm not sure whether that's related to the diabetes. After a bit of Googling online, it looks as though blood glucose readings above 4 should be too high for me to be feeling the effects of low blood sugar - so I'm starting to wonder whether it's all in my head.

    I appreciate your concern - I've let my DN know about my situation and I'm hoping she'll point me in the direction of some support groups in the near future. Unfortunately (like many people I'm sure) I've lost contact with most of my friends over the COVID period and done a pretty good job of alienating myself. I do live with my brother, but apart from him the rest of my family lives in the United States so talking with them isn't easy. I think the timezone differences, distances between us and their lack of knowledge of type 1 has made the whole thing a bit more complicated than it normally would be. The general attitude towards my diagnosis has been disbelief (I'll be the first type 1 in the family) due to my age and how healthy I am in general - something I think is made more difficult by the fact I'm still waiting on the results of my GAD test.

    If I'm being honest, even if I could speak to them I'm sick of the platitudes. They don't want to believe the specialists are right so any conversation on the subject is shut down with a "don't worry, when you get the test results back you'll see you're type 2" and it's driving me crazy. While I appreciate the sentiment behind the words, it's what I want to hear and it's preventing me from accepting the true reality of my situation. Apart from that, I don't know how much it matters - diabetes is diabetes at the end of the day and we're all on the same boat regardless of the type. I would much rather believe the specialists who diagnoised me and move forward under the assumption that I'm type 1 if only to avoid being dissapointed down the road.

    @Soplewis12 I'm with NHS Tayside. So far my healthcare team have been brilliant! How have they been where you are?
     
  8. Soplewis12

    Soplewis12 Type 1 · Well-Known Member

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  9. Mrs T 123

    Mrs T 123 Type 2 (in remission!) · Well-Known Member

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    Hi & Welcome @ReadyCrowd to the club nobody wants to be part of ... they are a really friendly, knowledgeable, approachable bunch around here so any questions just ask away ... we have all been were you are at the moment
     
  10. EllieM

    EllieM Type 1 · Moderator
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    When people have been running high blood sugars for a while they often get false hypos, where they have hypo symptoms at low levels compared to the old normal but high levels compared to real hypoglycemia. This should pass as your body gets used to normal levels again.

    Although you're stuck with insulin if T1 there are some advantages in comparison to T2, as you can inject for your carbs rather than being insulin resistant and therefore better off reducing them. (Though some T1s do eat low carb just to reduce the insulin injected.). An insulin ratio of 1u to 18g is quite a low starting point for insulin (DNs often start people at 1 to 10) which suggests to me that you are either not at all insulin resistant and/or you are still producing quite a bit of your own insulin. The technology for new T1s is improving all the time so though it's not a disease that anyone wants to get, there's very little it stops you from doing. (And if it turns out you are T2, that's good too, you may well be able to control your diabetes by diet instead of insulin).

    It sounds like you are coping very well, try not to get discouraged if/when your readings aren't what you want. As everyone always says, it's a marathon not a sprint.

    One final point, my single most important recommendation for anyone new to insulin. Hypos can happen at any time, always have glucose (or equivalent) with you.

    I hope your family come round when you have an official diagnosis (whether T1 or T2). Till then you'll find plenty of friendly posters on here if you have questions or just want to vent.
     
  11. robketts

    robketts · Member

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    Hi I have been type 1 for nearly 2 years and I am 52. So it came as a shock to me, plus I don't know anyone else who has it either.

    So like you I have had to listen and learn quickly. What is important is that you do get used to it.

    Try and stick to healthy eating and do exercise and that will help you manage your blood sugars. Plus it's good for you anyway. I have seen my motivation grow to be more healthy. So you never know it might help in the long term

    Good luck with it all you should be fine

    All the best Rob
     
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  12. nicki92

    nicki92 Type 1 · Active Member

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    Hi again,
    re the hypo feeling: I woke up a couple of days in hospital shaky and feeling so hypo-y, had a bit of a cry as well because I found it so scary. My numbers were usually around 5.5 -- so too high for a "real" hypo -- and I'm not getting that any more with BG levels of over ~4.5ish. I expect it was my body not being used to those levels, as someone said above. I'm sure you'll get more used to it all; in the meantime sending lots of hugs.
     
  13. h884

    h884 Type 1 · Well-Known Member

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    Hi Andrew

    I have been Type 1 for about 2 + plus years. A lot maturer than you. I am also in Scotland further north than you. Support locally has been excellent. I started with a pump over a year ago. It takes time to get your head around everything.

    Friends and family have generally been supportive. Happy to let me talk. A few people have commented that I must have had Type 2 and become Type 1. Despite explaining things they still believe that.

    Keep in close contact with your team and keep asking questions. Take one day at a time.
     
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