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explaining what it's really like to live with Type 1

Discussion in 'Type 1 Diabetes' started by himtoo, Jun 29, 2016.

  1. jacckk56

    jacckk56 · Newbie

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    hi
    welcome to this forum site here you can find most interesting answer of your questions , Let me explain what an insulin pump does. First, it removes the need to have multiple injections of insulin on a daily basis.
    thanks
     
  2. tim2000s

    tim2000s Type 1 · Expert
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    That's what the wearenotwaiting movement is all about. If we cant' find the answers, get out and do it ourselves. The medical establishment isn't going to, and as 50% of T1s are female, and probably 80% of the T1 researchers are male, it's probably the only way.
     
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  3. devexity

    devexity Type 1 · Active Member

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    Excellent stuff. While I am indeed doing a PhD, it's in literature. Bah. I'll have to find some other way of contributing.
     
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  4. Steve14

    Steve14 Type 1 · Well-Known Member

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    Living with type 1 diabetes is like lying on the ground, watching hundreds, thousands of people walk by, smiling, chatting with each other. You want to get up, but as soon as you do, then you get punched in the back. You look around, but you can't see the bad guy - it's invisible. You look around carefully, then try to get up again, slowly, then BAM. Again! Get up, punch. Punch after punch. Eventually you just settle lying there while everyone else have obnoxious fun around you. They don't understand you and don't care. That's how T1D feels to me. It's all fine and dandy while you live in a bubble, but as soon as you want to live, then hypos and hypers galore. I'm someone who got stuck with this in my mid-twenties. I had it all: winning medals for the athletic team, going to the beach in the morning and coming home in the evening, hours upon hours of cycling without taking food with us. I was the fastest sprinter around and broke a long jump record in the school's history. I had the best time of my life and never thought that it would come to a screeching halt. These legs were made for running, never to stop! Exercising was my passion, my everything. Could I do it again? Probably, but the OCD sugar monitoring and dealing with "never the same" sugars on a daily basis which eventually lead to extreme numbers is as much of a mood killer as it could be, not to mention slowing me down. They say exercising is good for a diabetic, but the kind of exercise I'm used to doing is bad. How ironic.... because I always pushed my body to the limit and challenged everyone along the way. But I didn't do it to impress people. For me, that was life. I felt normal revving my heart over 140 BPM each day, and I felt unwell by not doing so. That's what I've been doing for the past 2 years - not living in fear of hypos and hypers-, and it is driving me into the verge of suicide. Often times I wish that I was born with this **** so I'd never know how amazing life was without it. Those are my honest thoughts. Living with type 1 diabetes was a double whammy for me because the depression which resulted from restrictions made me become a bitter person, who chased away all his friends and even his wife. Only my Mother stands by me. I developed a video game addiction that keeps me alive and sort of happy, and can work from home on my computer. If any of those two were taken away from me, then I'd call it quits. At least I don't drink alcohol nor do drugs, which is a good thing...
     
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    #144 Steve14, Mar 20, 2017 at 9:17 PM
    Last edited: Mar 20, 2017
  5. benfolger

    benfolger Type 1 · Member

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    I think Type 1 is not fully understood by the public, and this has been backed up by various misinterpreted story lines in various UK soaps over the last few years. I am constantly in battle with work colleagues who say 'my nan was diabetic.' 'Do you have to inject every day?? I couldn't do that!!' 'urhhh you're pricking your finger!!' 'should you be eating that?' The general knowledge on it is poor and it makes you feel so alone.

    I have recently joined the forum and its amazing uplifting it makes you feel when you see and read someone describing how they feel and you can relate to it exactly. As supporting as friends and family are, they will never really know how it feels to hypo and want to eat the entire kitchen, and then how when suffering high BS and DKA, you feel like you're going to keel over and die.
     
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  6. melzee

    melzee Type 1 · Member

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    I was diagnosed T1 when I was 4 - nearly 40 years ago. In my youth I was terrible - I don't know anyone who wasn't. Had lots of scares late 20's with retinopathy, had vitrectomy and now have a dodgy left eye but fab right one.

    As a T1 you do think about everything - what am I doing for lunch, can I have that drink, I want to go to the gym in 3 hours so should I eat...

    BUT it keeps us heathy, because of our lifestyle we know how to look after ourselves and listen to our body.

    I run and own a company with 30 staff - that can be stressful and run havoc with my sugars. If I'm high I can't be grumpy as people rely on me, if I'm in a meeting and low I need food. I've started working abroad in last 6 months - time zones, 3 hour meetings - crazy on my sugars! Stress is a major factor - food, exercise can both be managed, stress raises sugar and is hard to cope with - especially when you are a stress junkie like me!!

    My best advice - listen to your body and your gut, do tests when you can and eat properly. I've always struggled a bit with my weight - but lots of people do! Being T1 is sometimes a pain in the backside but with a positive outlook & healthy lifestyle it can be easily managed.
     
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  7. hboyt

    hboyt Type 1 · Well-Known Member

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    It is a rough run with many ups and downs. You can live a life if you don't let it get you down.
    I'd rather live with diabetes than try to live with something worse...
     
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  8. hboyt

    hboyt Type 1 · Well-Known Member

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    @Snapsy BETWEEN TWO LINES

    WOW!.....that is such a great outline of all departments of a T1 diabetics life! I'm impressed with the analogy and don't think i could add more to that! Thanks for sharing ;)
     
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  9. Snapsy

    Snapsy Type 1 · Well-Known Member

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  10. JoeCo

    JoeCo Type 1 · Member

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    That's really inspiring that you manage to run your own company with type 1 diabetes, good for you! I've always been very ambitious myself but when I was diagnosed in August right after graduating and I thought that was it, I felt hopeless. But as time has progressed I find it's actually compelled me to work towards what I really want in life ... because this is the only life I'll have, and I'm not just going to sit around feeling sorry for myself. No way! I cannot accept that.
     
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  11. mentat

    mentat Type 1 · Well-Known Member

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    Here's one I came up with recently...

    Managing type 1 diabetes is more difficult than driving a car, almost as dangerous, and yet we are expected to do it 24/7, no breaks, no matter how tired (or drunk!) we are.
     
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  12. DiabeticDadUK

    DiabeticDadUK Type 1 · Well-Known Member

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    I've looked at this thread title a lot. Read many of the posts. I think to myself 'Yeah! I totally get that' and ponder contributing.

    T1 is a frustrating, worrying, time consuming, upsetting war. You fight a battle every single day. Sometimes you win, sometimes you lose but the next day the war carries on. You can't stop fighting because you will lose the war against an enemy which is relentless and 24/7. As with all tough and sad situations, you find a way to cope. The mind and body are very strong. Once you accept the battles, the enemy always throwing grenades at you on a daily basis, it becomes life. You can find enjoyment in the little victories and maybe share humour about it with others. Us battle hardened soldiers keep the hopes of a cure locked away at the back of our minds, after being let down so many times before. Maybe one day we'll have peace in our time. Until then, the fight continues.
     
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  13. Deleted Account

    Deleted Account · Guest

    I read about young people who are scared when they are first diagnosed with type 1. They think their lives, dreams and aspirations are over. Some families wrap their type 1 diabetes children in cotton wool. Thankfully, this is not true for all but it definitely happens.
    I have thought that someone like JDRF should gather together stories like yours as part of a "Welcome Pack". There are some great stories about athletes with type 1 but not everyone is sporty. I think stories from other walks of life are also important to inspire the younger generation of type1ers.
     
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  14. dieseleyes

    dieseleyes Type 1 · Member

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    Diagnosed type 1 at 33. Sometimes think it's the best thing that could have happened to me.
    1) I got fit. Probably healthier now than any point in my life since the age of 18
    2) I've done some amazing things. A sudden sense of my own mortality gave me the drive to take a few risks instead of living in fear of failure. That has brought me some great friends and rich experiences. And I'm never short of a story at the dinner table now.
    3) It's made me a better cook. Not knowing what's in my food makes it hard for me to control my blood sugar so I started to cook more and more. Now scratch cooked food is the norm, and ready meals and takeaways are absolute rarities. Cheaper, healthier, and more often than not tastier.

    Yes, it's a pain to always be monitoring and managing, and some days I want to punch holes in the wall because nothing's working as it should, but considering how much diabetes has changed my lifestyle for the better, I reckon I'll probably live longer and achieve more because of it.
     
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  15. sweetbloodsher

    sweetbloodsher Type 1 · Well-Known Member

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    I read this somewhere, so forgive my stealing, but having type one is really just living and trying hard not to die. But I think the near death experience a lot of us have had when first developing the disease has changed me. I think most of my (unconscious) motivation in life is to enjoy it as much as I can b/c I am close to death. Sounds morbid, I know. No one seems to talk about it, even in support forums. That said, I try to be the best diabetic I can be. Sometimes it gets obsessive, and that can become tedious. The frustration of being type one, aside from the freedom and spontanaity (ok, I give up with the spelling!) of the joy of eating, is that most people do not understand this disease, including many in the medical profession. And, there are hardly any therapists trained to treat us. Lastly, please don't mix us up with type two's. I WISH I was a type two. They have so many options.
     
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  16. sweetbloodsher

    sweetbloodsher Type 1 · Well-Known Member

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    Yeah, I had a grenade today. Though my insulin was rotten. LOL.
     
  17. sweetbloodsher

    sweetbloodsher Type 1 · Well-Known Member

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    Just love that you said, "fab". Made me smile.
     
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  18. hh1

    hh1 Type 1 · Well-Known Member

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    The problem with focusing on hbA1c results is that, as you say, they reflect average bg - so ignoring the (potentially) damaging and hard-to-manage spikes and lows. I'd be happier with a (slightly) higher HbA1c if it was a result of a more consistent bg.
     
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  19. megdowney407

    megdowney407 Type 1 · Member

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    I apologize if this is a repeat, but it's probably my strongest feelings about this.

    I was diagnosed at 25, a year ago this week. I feel like there really isn't a lot out there for newly diagnosed type 1's in their 20's. Most type 1 info is geared toward parents or 20-somethings who have had t1 since they were children. I feel really lost a lot of the time. Maybe all of the time. Scared to eat, scared to not eat.

    I plan on starting a blog, which I'm sure many of you have already done. I think it's necessary for there to be more out there for adults who develop type 1.
     
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  20. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Hi @megdowney407 , I'm really sorry you're feeling lost. Sending you a hug! I was diagnosed at age 11 (I'm now 42), so I can't really remember with any clarity what life was like before. Except perhaps it was rather more straightforward pre-diagnosis than it has been since.....! ;)

    Let me introduce you to @Type1Bri - not all that long since he was diagnosed, has a great blog, and together with @ewelina organises get-togethers for us lot to, well, get together.

    :)

    PS And hey look, you've got that first year under your belt. See, you rock already!
     
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