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Once was a pleasure, now it is a walk through hell

Discussion in 'Type 1 Diabetes' started by mrtn.pllr, Dec 5, 2019.

  1. mrtn.pllr

    mrtn.pllr Type 1 · Well-Known Member

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    Hello everyone!
    Of course I am speaking about eating. Most people like to eat, like to taste the food, enjoy different meals. That's a pleasure which is a big part of the "living is worth it" feeling.
    What is the hardest part of this illnes for you?
    I have been diagnosed with type I diabetes a month ago, I had a blood glucose level of 33 mmol/L when I was admitted to the hospital. Life hasn't been easy since then. Never knowing what to eat, or how much. I need to constantly remind myself to this illnes, "oh gosh, it's been 2 hours already, need to check sugar, eat snacks".
    I bet you know this feel, when you were not self-disciplined enough, and now you don't have a proper lunch.
    I guess it takes time to accomodate :)

    Have a wonderful day!
     
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  2. Marie 2

    Marie 2 LADA · Well-Known Member

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    @mrtn.pllr At the beginning it's a rather large learning curve. But honestly it starts to become old hat pretty quickly. It's just for now as a newly diagnosed type 1 you are probably still in some kind of what we call honeymoon phase.Which means you still make some insulin, until you don't. The time on this can vary so it throws a kink in the works in trying to figure out dosing and Bg levels when your pancreas decides to still spit out some insulin off and on.

    I was a strict vegan way before I got this disease and have chosen to stay that way. But I eat what I want (as long as it's vegan for me) I just have to dose for it. You can learn to eat what you want too, it's just a learning curve right now.

    I'm assuming, I could be wrong that you are on set doses? Your comments suggest so. So the best thing you can do is to learn to carb count and dose appropriately as soon as possible. Because you don't have to eat when you don't want to, you can eat what you want to, you just have to learn how to dose for what you eat. (although a healthier diet is of course better for everyone) and you will still have to eat a hypo fix when your BG's drop too much, it happens to all of us at times. Always, always carry a hypo fix with you whenever you are going somewhere.

    The first step is getting your basal right, that would be a long acting insulin. This makes up for what your liver produces without eating anything. So what should happen with that (or close to) is the number you wake up with, without eating should be basically the same number by night. Then you can get your bolus amounts for food down right. You can get really good at this if you want to!!!!
     
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  3. EllieM

    EllieM Type 1 · Moderator
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    I would argue that T1 diabetics have much more freedom of eating choice than T2s. T2s are carb intolerant, if they don't watch their carbs they'll get sick. As a T1 your problem is (lack of) insulin. Once you learn how to balance your insulin, food, activity, illness etc you have much more freedom than a T2.

    It's a learning curve, a steep one, but give it a few years and you'll feel much better about the whole thing. Plus the improving technology (continuous glucose monitors, insulin pumps, looping (?)) means that treatment is much better now than a few decades ago and for young T1s an effective cure is a real possibility.

    For me, the hardest part of being T1 is the hypos... and I work very hard to avoid them.
     
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  4. Shannon27

    Shannon27 Type 1 · Well-Known Member

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    @mrtn.pllr oh my gosh i want to hug you!
    Food makes me happy too!
    You can still eat whatever the heck you want to. Just curb the sweet tooth, chocolate, cake. Don't stop eating them because denying yourself any pleasure in it makes it hard. Just limit the amount of sweet things you eat and know how it is going to affect you. A small bar of chocolate (40-50grams) has about 20-25grams sugar in it. Sugar doesn't last as long as carbohydrates, so do you need to inject for it? Depends on your blood sugars, if they're low, i'd say no. If they're high, yes! I'd recommend the Carbs and Cals app on your phone for working out carbohydrate intake :)
    Since you have just been diagnosed, you may not have optimised your insulin yet. Different insulins work best for different people, which is crazy really. I am using Novorapid at mealtimes (fast acting insulin or bolus) and Tresiba at bedtime (long acting insulin or basal). You may be using different ones. If you have a diabetes consultant, talk to them about getting it optimised. This means a carb free day, but there's so much you can still eat!
    I was diagnosed at 4 years old, so for all intents and purposes i've been diabetic all my life. It's a whirlwind of information, but you will get used to it. For me, the hardest part is sleeping - there is always a nagging worry that i am going to go hypo overnight. Doesn't stop me!
    I say it time and time again, don't let your diabetes run your life. Make it work with the life you lead. If you don't like having a big lunch, don't inject. If you want that chocolate, know how it is going to affect you and act accordingly. You will get used to it soon :)
     
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  5. Juicyj

    Juicyj Type 1 · Expert
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    Hello and welcome @mrtn.pllr

    It is a minefield when your first diagnosed as there is so much to think about that it can feel incredibly overwhelming, trying to get a grip on carb values, insulin dosing, timing, testing, injecting and all the time walking on a tightrope.

    Take it easy and hang on in there, it does get easier in time, try sticking to the same foods to start so you know their carb values and can get used to the insulin doses, I find when I want to snack that I eat cheese, pork scratchings, olive and nuts as I don't take insulin for them so makes life somewhat easier.

    There's lots of folk who understand here so feel free to vent whenever it suits, but do have faith it will be second nature in time.
     
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  6. porl69

    porl69 Type 1 · Well-Known Member

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    Hi @mrtn.pllr and welcome to the forum. I have been T1D for 49 years so its all I have ever known. Foodwise, nothing is off limits for me. As long as I count carbs and give myself the correct insulin dosage then all is fine. I get it wrong sometimes and have to correct.
    Diabetes will NOT stop me doing what I want. I am in control of it and not it in control of me.
    You are new to this at the moment and it is VERY over whelming. You will get the hang of it very quickly. Any questions you may have get them posted up on here and someone will be along to help/guide you. Good luck
     
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  7. annliggins

    annliggins Type 1 · Well-Known Member

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    Hello and welcome !
    Im a newbie to T1 ..10yrs thats all
    I used to have food envy...envy of others eating out, stuffing stringy chips and steaks etc my appetite was always good pre diagnosis.
    I restricted what i ate and what my poor husband ate.i ate food i knew how to bolus for carrot and swede mash , wet fish, chicken i grew fins !!!!
    A couple of years ago the light came on for me ....i was sure i could get better at this .
    I got a little notebook and began my plan.
    I tested by basal it was wrong i had to eat every 4 hours. I experimented.
    I experimented on bolus timings ...i adjusted them
    I experimented with differant foods ...small portions always and i logged in my little book the results.
    Everything takes time and alot of effort but it does get second nature eventually...
    I can weigh 100g in my hand or visualize it now ....
    Please keep positive it will be hard and there will be tears but youll do it .
    My real nemisis will be encountered this afternoon .....indian restraunt and a madras the first one in 10yrs ....i cant wait!!! .
     
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  8. MauroM

    MauroM Type 1 · Member

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    @mrtn.pllr , by personal experience (diagnosed 14 years ago), it gets easier. Sometimes it gets complicated and even difficult to understand how food relates to our blood sugar and general well-being, but the glucose meters exist exactly for helping us with this task. I'm afraid the confidence to eat without stressing about how the food affects us only comes with time (to me, it is similar to driving a car: initially, you have to be careful about everything, since you don't know what you should be paying attention to, and can be somewhat scary and stressful. after you've grown used to it, though, you can even enjoy it)
    Also, about eating whatever without worrying about anything: don't nondiabetics get fat? or have to worry about dietery goals? blood pressure? allergies? upset stomach? No one eats whatever without consequences. We are just more aware of this and usually have a greater understanding of how food affects our health. Maybe I'm just smug about this (hope not), but when I hear someone (non-D) talking about feeling unwell for eating something, or bloated, or complaining about diets, I feel glad to know better. Hope that helps (most of us have felt similar to you at some point). :)
     
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  9. Jaylee

    Jaylee Type 1 · Moderator
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    Hi @mrtn.pllr ,

    Welcome to the forum & the club.
    It's always interesting for me to see an another's indevidual perspective.

    I've had it since I was a kid. & walked through the "valley of darkness" myself a couple of times. (Even before diagnosis.)
    It is what it is.. No one's fault. Just a "default setting" waiting to happen at some point if it's set to happen at all?

    You will find yourself chatting on a forum with fellow diabetics.. If we all had it sussed (43 years with it for me.) you would be talking to "Jedi." ;)

    But that's why we're here, to impart experience, discuss the "grey areas" & share what we do know..

    I don't believe in heaven or the other place.. Though I understand the "underworld" is hot.
    There are means devised to keep your insulin cool on the journey. There are also apps on phones to help light the way..

    I'm confident you will get that "proper lunch." You just got to get "out there" to grab it for yourself..

    Best wishes.
     
  10. Daibell

    Daibell LADA · Master

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    Hi. Did you mean 33mmol? That's a non-diabetic BS level. 48mmol and above is a diabetic level. You have had a lot of good posts and I think you will find things become a lot easier over the next few weeks. Once you get the two insulins set to the right levels you can eat very freely apart from controlling the carbs to avoid excessive BS spikes and weight gain. You will first need to get the Basal insulin balanced and then carb-count at meals to get the Bolus ratio right.
     
  11. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    You really will be able to eat normally again - yes, it will be a constant balancing act, but it can be done. You'll get a lot of great advice and encouragement on this forum.
    I'm a type two and want to avoid medication - I will not eat lunch again - not eat many of the foods which are thought of as normal eating - but I eat to live.
    If I discovered that I had to subsist on frogspawn in order to survive - sorry frogs.
    Happily, I can eat meals which are pleasant, they just have low levels of carbohydrate. My first meal of the day has around 10gm of carb. I eat a second meal in the evening - about 25gm of carbs with that one.
    This is, of course the same thing as that tale of someone being angry at having no shoes, until they met someone who had no feet - though of course, my feet are not going to suffer the effects of poor glucose control.
    I started off the process of gaining control with a notebook and a set of accurate kitchen scales, plus a glucose tester.You of course have the secret super power of insulin.
     
  12. mrtn.pllr

    mrtn.pllr Type 1 · Well-Known Member

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    Hello everyone! Thank you for all your answers! I feel much less alone now :) It is a hard journey, but there is help out there. Maybe the biggest difficulty for me now is the fixed insulin doses, that makes me feel like i'm in prison. My doctor says that my therapy will be loosened when the time comes, but gosh, it is a huge burdon until then. Maybe I'm too unexperienced for this, but does anyone know anything about insulin pumps?
     
  13. Jaylee

    Jaylee Type 1 · Moderator
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    I would wager the "33" would be the top end of the register with a fingerprick reading.. :)

    It's early days at the moment.

    Don't see it as a prison but the first rung of a ladder, a way out to freedom...

    Take a look at the book "Think like a pancreas," by Gary Scheiner.
     
  14. mrtn.pllr

    mrtn.pllr Type 1 · Well-Known Member

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    I meant 33mmol/L, it's about 594mg/dl :) I think 33 was pretty high and life threatening, but once I read that the world record was 144mmol/L, soooo.... :D
    Staying positive!
     
  15. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Hello and welcome @mrtn.pllr diabetes is a club that no body wants to join, but with friendly support and help, you'll get there, it can be quite daunting and scary at first, but you'll get there, take baby steps as it's a learning curve.
    I am still learning 3 decades on, so take care, we are here for each other :)
    edited
     
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  16. Ushthetaff

    Ushthetaff Type 1 · Well-Known Member

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    Hi I have to agree with the previous comments here it is an absolute minefield in the beginning, but as everyone has said it does get easier , it’s a bit like the first time you try and drive a car so many controls and not knowing which one to use . As a T1 of 40 years I will say dont worry about making mistakes . Diabetes is now a part of your life , but it’s not your whole life , if you make it your whole life it will feel like jail, at this point in time there is more information available then ever before and with technology as it is you can take your bs quite easily , however you will realise very quickly that trying to react constantly to lows or highs will be impossible. You will learn how your body works and how it reacts to different things whether it be food , illness , stress the list is endless . But think of it this way by having diabetes you will understand your body far better than someone who doesn’t .
    Forums like this give a great amount of support as do specialist nurses and doctors. Don’t be afraid to ask because I can guarantee no matter what the problem someone here will have gone through the same or something very similar.
    Welcome to the club there are far worse ones to be a member of .
     
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  17. Justin04

    Justin04 · Active Member

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    Hi mate welcome to the forced club. Been part of it for 23 years. But have been part of this club here for 18 months and have learnt more from here than the previous 21.5 years I was type 1. Lots of great info on here which is much more informant than you could ever research. Probably don’t jump the gun and focus on pumps so soon. Get used to learning your carbs and dosing properly and go from there. It gets easier with time. On the plus side there’s lots better technology and insulin out there now. Type 1 has never stopped me from doing anything anyone else has done, just live life to the fullest.
     
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