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Overwhelmed is an understatement!

Discussion in 'Newly Diagnosed' started by Defiantfitzy, Nov 25, 2019.

  1. Defiantfitzy

    Defiantfitzy · Member

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    I'm 34 and I've just been diagnosed with type 1, after visiting the doctors a month ago, to ask why going for a wee had turned in to such an issue. In terms of managing urgency. Literally going to the toilet every half an hour throughout the night. After being told my pee was full of glucose, I went for fasting glucose test which gave me a HbA1c reading of 102m/mol. Now on metformin, rapid-release and long-acting insulin.

    My diet used to all about the carbs and treats, so that alone has been challenging. Also, eating 3 meals a day is not something I'm used to. I'm regularly guilty of missing meal times.

    Also, my time keeping is shocking at the moment, remembering to test bloods, eat food and then take meds is proving difficult. It doesn't help that my sleep pattern has been screwed up. As you can tell, being up at this time seems to be the new norm. The exhaustion is getting worse. Has anyone else been through this? It would be great to get some advice.
     
  2. EllieM

    EllieM Type 1 · Moderator
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    Don't panic. That's my first piece of advice.

    My second piece of advice is that there is light at the end of the tunnel.

    Most new T1s get put on a basal/bolus regime. The basal (long acting) insulin is there to trickle insulin into your system to metabolise the sugar in your blood when you're not eating (sleeping, fasting, whatever...). Ideally you balance this so that if you fasted for a day your blood sugar at the end of that day would be the same as that at the beginning.

    The short acting insulin, or bolus, is there to counteract the food you eat, and as a correction dose to bring your blood sugar down if it goes too high (for whatever reason: miscalculation of dosage required for a previous meal, stress, illness, wrong colour socks,,,,). Long term you'll be given a ratio of insulin to food (eg 1 unit of insulin gets through 10g of food) and a correction dose (eg 1 unit of insulin brings your blood sugar down by 3 mmol/L). Note those figures vary massively from person to person. Now your clinic don't know what your figures are yet, so they are trying to keep you on a regular regime so that they can work it out. Once you know your figures, and how to carb count, you can skip meals, have extra meals, etc etc and just adjust your insulin to compensate.

    So in the long term it'll all get better, but in the short term your levels are probably still too high (they like to bring them down gradually) and you won't feel better till they are back to normal.

    It will get better, but you need to be patient, as it's a steep learning curve, both for you and your team. Be aware that insulin needs for new T1s can also fluctuate (the dying beta cells in your pancreas are producing varying amounts of insulin). But there are many of us T1s on these forums who've been living with the condition for 20, 30, 40,50,60, 70 etc years and it hasn't ruined our lives. The joy of being T1 rather than T2 is that you can control how much insulin you take, and adapt that amount to your activity and food intake, rather than being forced into a regimented lifestyle. Yes, you'll always have to remember your insulin, glucose and blood testing kit, but think of it like remembering an inhaler of you're asthmatic or a pair of glasses if you're short sighted....

    And the joys of modern technology are increasing all the time. Ask your team about continuous glucose monitors. They don't entirely replace a blood testing meter, but they can be pretty magical (if they work for you, they don't for me unfortunately).

    Good luck. I expect some more recently diagnosed T1s will post soon. I'm in New Zealand so I'm one of the few who's awake to post right now.
     
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  3. Juicyj

    Juicyj Type 1 · Expert
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    Hello and welcome @Defiantfitzy :)

    Yes it's a massive shock, I remember it well even though it's almost 8 years ago now. There's a lot to learn and getting it right is very much trial and error to start with so don't beat yourself if you forget to test or inject, in time it becomes second nature.

    There's lots of support here so feel free to off load anytime.
     
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  4. Diakat

    Diakat Type 1 · Expert
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    Morning @Defiantfitzy
    You’ll get the hang of it, and you can still eat fewer than three meals if you want. Getting to grips with the insulin means snacks and flexibility is absolutely possible.
     
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  5. KK123

    KK123 Type 1 · Well-Known Member

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    Hi there, I would just add that when you have settled down you do NOT have to eat 3 meals a day at regular intervals, as EllieM has said, at first they like you to eat nice and regularly so they can gauge what's going on and how you are reacting to the insulin dosage, etc. I have worked shifts my entire life and I have never eaten 3 regular meals a day, before diagnosis I had fasting periods (some forced, others chosen) for 18 hours or more and my mealtimes were whenever. It's the same now. I eat whenever I choose to, I sometimes have one meal a day, sometimes two, maybe 3 and all at differing times depending on my shifts. YOU can control when you eat once you have begun to understand how it all works. x
     
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  6. Defiantfitzy

    Defiantfitzy · Member

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    Thanks everyone for your comments. Still getting used to the whole thing. Went to the doctors today and had both types of insulin dosages raised. Now take 24 units rapid and 18 units long acting. Are these baby doses? I'm worried about the fatigue at the moment, it's kind of put me in a spin with my depression as well. Going to the toilet all the time has kind of put my sleep pattern out of whack.
     
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  7. Rokaab

    Rokaab Type 1 · Well-Known Member

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    No T1 is the same as another, so that amount might be loads to one person or may be a small amount compared to another, so don't worry about how much you need - however much you end up needing for you is the right amount, it's just trial and error finding out
     
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  8. Marie 2

    Marie 2 LADA · Well-Known Member

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    The commentators before have pretty much covered the bases. It's just a steep learning curve at the beginning and they try to teach you in baby steps as much as they can at the beginning to make it a littler easier to learn.
     
  9. SB.25

    SB.25 Other · Well-Known Member

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    welcome!

    Just as a word of support the same happened to me last year.... got so dizzy I ended up in hospital and told I was diabetic.

    my hba1c was 103 - so very similar to yours. My most recent one (12 months later) was 50.

    Honestly it gets easier over time and don’t panic about getting you levels perfect immediately - it will take a while. Just keep testing when you do something new as everything effects glucose levels... for example heat, stress, timing of food etc.

    best of luck with everything :)
     
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  10. Wilber123

    Wilber123 Prediabetes · Well-Known Member

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  11. Wilber123

    Wilber123 Prediabetes · Well-Known Member

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    I really feel for you and I do wish you well. There is a time of sheer panic, what to do and when. What can you eat. we have most likely all felt like you are at the moment. But you will get yourself sorted, ask questions don’t be afraid to ask. Write things down if your worried you’ll forget. This forum is a place where you can be yourself, you can ask the questions the medical people do not wish to answer.
    When I was given my bad news I was told to eat potato bread pasta and high carb food.
    please be aware that the NHS staff teach a old fashioned way of eating. Listen to those with personal experiences.
    They will show you the way that helps. I find my eating plan very hard. I love all the things I should not eat.
    Best wishes
     
  12. tomfalc

    tomfalc Type 1 · Member

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    The first few months with diabetes is a shock. I lost my job as a result of my diagnosis, 40 years ago, so I had that to contend with as well. You have a period of discovery in front of you, as you and your support team find out your needs. Once through that see if your team can get you on a DAFNE training course, which will teach you how to adjust insulin doses for different size meals, and skipping meals, and sick days, etc.

    Don't forget that we are here to help, and if you get stuck or aren't sure of something, let us know. You're not on your own.
     
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  13. hmcc

    hmcc Type 1 · Member

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    Hi. I was diagnosed T1 3 years ago and still learning. The first few months are the hardest. You will eventually get used to it. This forum will give you advice and support. Good luck.
     
  14. Paul Jay

    Paul Jay Type 1 · Member

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    Hi Defiantfitzy,

    your in good company here. My first piece of advice for you is to try and understand how it all works. You can have the freedom to live how you want to as long as you eat, take meds and test bloods and get good rest.

    I would recommend you ask at the diabetic clinic to go on the DAPHNE course. This will answer questions and really show you how to take charge. Essential for any diabetic new or old.

    I’ve been T1D for 28 yrs and I’ve only just hit 40 so I’ve seen the ups and downs, the do’s and donts.

    Feel free to get in touch if you have any questions.

    Take care
    PJ

     
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  15. jane1754

    jane1754 Type 1 · Member

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    Yes, we've all been there. As others have already said, it's an enormous learning curve, and I also found it quite an emotional shock. When I was diagnosed 11 years ago, I read everything about diabetes that I could get my hands on. The most helpful books I have found are 'Take control of Type 1 Diabetes' by Dr David Cavan, and 'Dr Bernstein's Diabetes Solution' by Richard K Bernstein. If you aren't into books, it's still worth getting the Diabetes UK magazine regularly. There's also a lot of helpful stuff on line - recipes, Youtube clips and such. Be assured it will all settle down and not feel so overwhelming.
     
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  16. videoman

    videoman Type 1 · Well-Known Member

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    Yes , we all have when firsrt told injections for the rest of your life aas I was told at 14 in 1961 when just testing was crude, no blood meters haveing to check glucose in urine then it got better and so did my understanding ,as you will the understanding of what can be achieved and what to alter?
     
  17. mandedog

    mandedog Type 1 · Active Member

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    I have only just seen your post. Sorry to hear about your diagnosis :( I was diagnosed 3 months ago and it is certainly a shock and a steep learning curve. I have learnt so much from this forum though. I started out on basal insulin and metformin but now the metformin has been stopped and a rapid release insulin has been added. As others have said- we are all different and our bodies all react so differently even day to day. I miss the treats like you but once dosage and blood sugars are stable I am assured that occasional treats are possible.
    I will not offer you any advice as I am such a newbie but sending you good wishes and a virtual hug!
     
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