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Type 1

Discussion in 'Type 1 Diabetes' started by Oscar1996, Feb 2, 2019.

  1. Oscar1996

    Oscar1996 Type 1 · Member

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    Ever since I was diagnosed in 2015 at the age of 18 I’ve always done so bad with type 1.
    I’ve had about 7 - 8 DKAs and constant high BG.

    Yes I’ve heard “ it’s about taking control” but it’s harder than you can imagine. My first year of university in 2017 I had 2 DKS alone.

    My second year that is now I’ve had none but I feel I’m going bad very quickly. Today I bought 1L x2 bottles of apple juice and drank 5 - 5 bottles of 750 bottle of water.

    According to my Libre I haven’t tested since November 16 2018. Also my Diabetic nurse has quit her job so I have no idea who my new nurse is. I wanted answers but no one gave them to me.

    Today I’ve slept around 13 hours, and all I want to do is just lay in bed. I just need someone who can relate because I just feel so alone right now.

    (Moderator radio edit.)
     
    • Hug Hug x 2
    #1 Oscar1996, Feb 2, 2019 at 4:04 PM
    Last edited by a moderator: Feb 2, 2019
  2. Knikki

    Knikki · Guest

    Hello @Oscar1996 seems you not having a good time, was 17 once many years ago, but still here and been T1 for 52+ years but veterans like me and others get it wrong sometimes.

    No T1 is not easy, it can be a battle but why are you trying to kill yourself?

    Several DKA must be incredibly draining, why are you doing this?

    I don't know how to help you other than go seek some medical advice but I guess you know this, But more to the point how can we help?
     
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  3. Jaylee

    Jaylee Type 1 · Moderator
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    Hi @Oscar1996 ,

    High BGs will put you in this position of negative thought. That is why "taking control" is paramount.

    None of us gets it right all of the time, there would be no need for this forum if we were all naturally adept at this stuff.

    First thing I would action in your position is check in with the new DSN (find out who they are.) & get the meter out knock the dust off it, & start taking notes on where I am..

    All the best!
     
    • Agree Agree x 1
  4. Juicyj

    Juicyj Type 1 · Expert
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    Hello Oscar,

    Sounds like you having a rough time of it, it would help to know more about your day to day management. How often are you testing and what insulins are you using ? Are you injecting for each meal and carb counting ? Have you done any courses ?

    Getting control is achievable but it all starts with your mindset, do you want to make the change or does your T1 get in the way of your lifestyle ?

    My philosophy to t1 is that it's 90% mental and 10% t1, only you can decide this but with better control it will have very little impact on your life, yes it's hard we all know this but with the impact it's having on your life you need to make some radical changes and start putting this back in its box, please keep chatting as its sounds like you need the support right now.
     
    • Agree Agree x 1
  5. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Hi, @Oscar1996 , I'm wondering whether when you were dx'd they gave you some basic info about how to manage T1 and then chucked you out into the wide world to fend for yourself?

    It's maybe worthwhile seeing if your hospital can get you booked onto the waiting list for a DAFNE course, or the local variant.

    It varies from place to place, but is generally along the lines of 6 or so T1s sitting down with a DSN and a dietician for a week (sometimes it's split across several weeks), and doing practical exercises in carb counting and reminding folks of basic rules like 1u tends to lower by 2 to 3, 10g tends to raise by 2 to 3.

    Yes, I know, it sounds a bit twee, but, believe me, on the course I was on a few years back, there was a couple of people about your age who were in the same position as you, multiple hospital admission hypos, DKAs.

    At the start of the week, neither of them cared, one said she was only there because her mum told her to go.

    By the end of the week, the turnaround was amazing. The combination of the formal parts of the course, along with us all just shooting the breeze about how to handle different situations, got them both to a stage where they were engaged, saying, yep, they could see ways to work with it now.

    There's sometimes long waiting lists for those courses, so as a stop-gap, having a browse through Think Like a Pancreas by Gary Scheiner, or maybe signing up for the online Bertie course, link below, will give you a reminder of some of the basic rules.

    https://www.bertieonline.org.uk

    Also, seeing as you've got libre, I'd encourage you to make full use of that. If you buy a blucon (£100) or miaomiao (£150) transmitter to attach to it, it turns it into full on cgm with the apps xDrip+ (android) or Spike (ios). The graphs are cool (black background) and make a major difference with control once you learn to read them wellm

    The book Sugar Surfing by Stephen Ponder covers how to use cgm properly.

    Sure, all that is just a bit of technology and reading, but the cgm stuff (been using libre for over 2 yrs and xDrip+ for about 18 months now) has made an incredible difference to my life. I can now see in real time what my bg is doing and as each day goes by I'm learning subtler tricks to just gently steer it in real time and co-operate with it, instead of fighting it.

    I think it's the lack of control which leads to the sort of burnout which you are dealing with. Sure, it does take a lot of thinking about, and that takes effort, but if you were to change your mindset a bit and say, ok, new start, I'll get me a transmitter, read that Sugar Surfing book, start figuring out how much 1u drops me, how much 10g raises me, experiment with correction doses, you might start to see a way forward.

    The big difference which cgm makes, for me at least, is that instead of T1 just doing things to me, like hypos/hypers, and it being in control, I can see what is happening on the graph and control it before any bad happens. That makes a huge difference in approach to it.

    It's just little things like seeing how, say, 9u prebolused by 20 mins handles a 60g meal, noting what happens and deciding whether that combo worked or needs tweaking, then storing that away at the back of my mind for reference. Do that sort of stuff for 6 months or so and bolus choices just become more obvious and the control becomes easier.

    You've obviously survived the dka's. If you spend some time looking around this forum, you'll see posts from people in their late 20s facing serious complications. Often, it turns out that it's because they've played fast and loose with their bg. All of them wish they could rewind the clock and play the game differently. This condition can and will kill you, put you on a dialysis machine, limit your eyesight if you mess with it. That sounds hard but it's fair. It is your decision how you now play it. You're not doing it for your docs, your parents, you're doing it for you.

    Take care, mate.
     
    • Winner Winner x 2
    #5 Scott-C, Feb 2, 2019 at 6:07 PM
    Last edited by a moderator: Feb 2, 2019
  6. Fairygodmother

    Fairygodmother Type 1 · Well-Known Member

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    Hi Oscar,
    Yes, lots of us have been there and come out the other side - you can do it!
    Have you tested your blood sugars? Have you got enough kit? Have you told any of your friends who you can trust to be on your side?
    I think you’ll probably have the hardest challenge now when you take the fist step and test your sugars, then monitor your bloods after taking the insulin to lower them. If you can do that you’ll be on your way to getting it sorted! And you CAN do it!
    You say your DSN has left, that’s not good, but will they be replaced? Are you registered with a Consultant? The Uni must have a medical centre where you can see a doc and ask them to refer them if you’re not.
    There are some fantastic books as well. I like Sugar Surfing by Stephen Ponder, and Think Like a Pancreas by Gary Scheiner. Interestingly, Gary Scheiner got himself into a real T1 mess before he decided to get on top of it so that he could control it, not it him. Like I said, lots of us have been there.
    I’m also sending you a hug. High blood sugars are horrible, so you need more than one.
    And please get back ASAP and let us know how you’re doing.
     
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  7. JAT1

    JAT1 Type 1 · Well-Known Member

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    Hello there Oscar1996. I have diabetes type 1 too, although only diagnosed for 6 months now. It sounds like your blood sugar is high. Drinking apple juice will raise your sugar - it would send mine to the moon! What you eat and drink is very important. The way to feel better and lift your mood is to keep your blood sugar between 4.5 and 8.0 and this is done by reducing carbs (first from starches and sugars), counting carbs and injecting the appropriate amount of insulin. Do you know your insulin to carb ratio?
    If the medical support you have is inadequate (mine is), then you have to take responsibility for yourself. Six months ago I was a total wreck and since then I have regained my health, all because I tried my hardest to learn about my diabetes. It is up to the individual how much they want to look after their diabetes but if you do - life is fantastic. Unlike many other diseases, diabetes gives us a choice.
     
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  8. Fairygodmother

    Fairygodmother Type 1 · Well-Known Member

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    Good morning Oscar, hope your sugars are down and you got through the night ok.
     
    • Friendly Friendly x 1
  9. Oscar1996

    Oscar1996 Type 1 · Member

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    Hi

    Thank you everyone.

    The replies I got made me test my BG. I didn't mention in my original post that I had been taken of the Libre sensor because I never made it to an appointment (back last year in November) because I was at University and my Dr decided to take me off the Libre sensor as I never made it to that appointment. Ever since I just decided to stop because I thought I could make progress on getting a better way to test my BG and going back to Blood testing was a step back, and I feel like all my DR actually cares about is getting statistics and not actually helping.

    My last BG was 17.3 if you were wondering.
     
  10. Oscar1996

    Oscar1996 Type 1 · Member

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    I'm better than yesterday. I'm still registered at home, but temporarily registered here. BG is still high.
     
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  11. Jaylee

    Jaylee Type 1 · Moderator
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    Hi @Oscar1996 ,

    Thanks for getting back & letting us know.
    My view is if your doc has prescribed you the Libre. Grab it with both hands. Appointments can be rescheduled if you phone up well in advance. I'm not sure if you are located away from your surgery due to uni? But registering with a GP nearer your "digs" may help?
    Maybe liaise with your uni too, explaining vital check ups/treatment for a long term condition.?
    Most of us Ds appreciate the frustration when an apointment letter arives with a dodgy date.

    I do this with work. & find them quite accommodating when I keep them in the "loop." :)
     
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  12. Oscar1996

    Oscar1996 Type 1 · Member

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    I don't really know how to get it again, I can't keep going back and forth. I don't know if Cheltenham are prescribing it.
     
  13. Fairygodmother

    Fairygodmother Type 1 · Well-Known Member

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    Just my view/hope, but the University has a duty of care for its students so if you make another appointment to see the uni doc, and tell them about the way you’ve experienced difficulties, including, I suspect, psychological difficulties with T1, then any doc worth their weight in hypocratic oath will help you.
    Can you also speak to your tutor?
    You don’t say whereabouts in the country you’re at Uni but there may well be a decent specialist Diabetes Clinic within reach too. Is it Cheltenham?
    I’m glad your BS is ‘only’ in the high teens: more insulin to bring it down a bit further and give you more energy?
    Keep checking those bloods, and good luck!
     
  14. becca59

    becca59 Type 1 · Well-Known Member

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    Take each day in isolation. Make a decision on one day that you are going to check bloods before eating, correcting if necessary, and inject for food eaten accordingly. If the day after that you cannot be so precise, cut your self some slack and do your best. Then choose another day to be strict again. Hopefully it may encourage you to be more motivated more often.
    As @Fairygodmother says, get your student medical team on the case helping you. That’s what they are there for. Sending positive vibes.
     
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