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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. himtoo

    himtoo Type 1 · Moderator
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    Hi There
    I am hoping that the fabulous community here will post replies on this thread about the subject in the title.
    or possibly provide links to people's blogs on the subject , or even copy a link to an old topic that covers this area

    this topic could then hopefully be something that could be shown to gather support from family members, it could be helpful to newly diagnosed families as well as families with a D peep going through issues at the present time.

    thanks so much for reading and for posting if you are able.

    all the best !!
     
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  2. Bluemarine Josephine

    Bluemarine Josephine Type 1 · Well-Known Member

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    Good morning my beautiful friend! I hope that you are very well today!
    You do know that I am going to write a whole thesis on this topic... I can visualize the full 150 pages dissertation project already...
    Regards
    Josephine
     
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  3. johnbear2

    johnbear2 Type 1 · Well-Known Member

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    Being type 1 diabetes for 13 years,I have always managed my insulin around my job as a security guard.i take novorapid during the day and lantus at night,and still go out at the weekend.the point I am making is life does not stop because of being diabetic

    Sent from my SM-A300FU using Diabetes.co.uk Forum mobile app
     
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  4. lovinglife

    lovinglife Type 2 · Well-Known Member

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    Can't contribute as aT2 - but a lovely idea:)
     
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  5. alaska

    alaska · Well-Known Member

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    Currently, life as a type 1 for me is scanning my arm with my Libre every half hour or so and taking a series of small injections (typically around 10 a day at present) through the day.

    Injections and Libre scanning is the relatively easy part.

    Needing to sometimes wait to eat until your sugar comes down so that you don't spike your sugar levels super-high from an already high level is one of the annoyances.

    Having to make dozens of not easy decisions about how much to inject and when, what to eat, how and when. Taking into account a range of different factors every single can be mentally tiring some days.

    Never being able to go much more than 500-yards without taking kit and glucose with you just in case your levels start dropping (or sometimes rising -depending how far you're going).

    Having your emotions and ability to cope (physically and mentally) tied to your sugar levels. Low sugar levels making you slow and unable to cope with usual tasks that would be a doddle. High sugar levels making you irritable and/or lethargic plus can also initiate short term depressive symptoms. Both low and high sugar levels amplify emotions making it that bit harder to keep one's head together under some situations.

    Having to delay or interrupt sex because of low blood sugar.

    Urinary tract infections being more likely if sugar levels have been high for several hours or over a number of days -particularly if stressed at the same time.

    Occasionally having to battle off feeling depressed about the risk of developing long-term complications if sugar levels having been high for longer than I'd like.

    Mostly for me, type 1 diabetes is fine to deal with when control is good. But, when control goes a bit skewiff, the little persistent things can add up to the short term difficulties and that's when things get tough and you want to scream a bit inside or out.

    Type 1 can amplify things. When life is tough, the type 1 makes everything that bit harder. However, perhaps the dealing with the tough stuff makes us a bit sunnier and brighter when the good times do happen?

    Ed
     
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  6. Type1Lad

    Type1Lad Type 1 · Well-Known Member

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    here is my blog i haven't wrote a day in a life but will do shortly :)
     
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  7. tim2000s

    tim2000s Type 1 · Moderator
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  8. himtoo

    himtoo Type 1 · Moderator
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    thank you to everyone that has posted -- keep em coming please .

    It is really very much appreciated.
     
  9. Snapsy

    Snapsy Type 1 · Well-Known Member

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    I wrote this in April 2014, in the middle of a meltdown.
    Things are different now - I'm on a pump, I have a Libre, I have discovered exercise and I choose to not base my diet around much carbohydrate. And I'm finally feeling that I am actually living my life.
    This is my story. I am very unsure about sharing it so widely, so please be gentle with me.
    Thank you.

    * * * * * * * * * * * *

    BETWEEN TWO LINES

    When I introduce myself to people, I often ‘forget’ to introduce my other half. No, not Jim, my husband-to-be, my partner-in-crime, the funny man to my straight guy, who’s been with me since 2006, but my type 1 diabetes, my constant, lifelong, other till-death-us-do-part companion since May 1986.

    And when I say ‘forget’ to introduce it, the inverted commas are there for a reason. Because, well, it’s a bit of a fib.
    I choose to not mention it. Because why would I mention it?
    It’s not interesting. It’s an effort to explain. And if I talk about it the second I meet you, I feel I would come across as self-obsessed.

    And if I do mention it, I find it difficult that people think they know about diabetes. ‘No sugar, and injections, right?’ Wrong.
    It’s more complicated than that. It takes a long time to explain.
    And in that whole time I’m taking to explain it, I’m the centre of attention. It’s all about me, me, me. And that’s social death, isn’t it? ‘Hi, I’m me. Let’s talk about me.’

    Why would people need an introduction to it, though? ‘Hi, I’m Rebecca’ should surely suffice. That’s ‘me’, isn’t it? They don’t need to know that I have type 1 diabetes.

    They don’t necessarily need to know.
    But actually, I need them to know.

    Many people summarise – to me – my diabetes with the catch-all statement ‘You can’t eat sugar’. Yes, I can. But it’s more complicated than that.

    You see, sugar isn’t just sugar. What people get confused about is the fact that all carbohydrate in food breaks down into glucose, or ‘sugar’, in the body. If I eat anything containing carbohydrate, it will raise my blood glucose level. Not just sugar.

    Not just that white granulated stuff, or the crunchy brown Demerara, or the treacly Muscovado that’s the magic ingredient in my banana cake recipe. Not even just sweet things. There are many things that break down into ‘sugar’ in the body. Things like milk, bread, rice, potatoes, carrots, fruit, oats, pasta, tomatoes, beans, cereal, sauces, yoghurt, biscuits, peas, couscous, curry – and lots and lots of other food and drink.

    I can eat what you eat. But it’s a process. It’s not spontaneous – I can’t just decide halfway through Sunday lunch that actually I’ll have another two roast potatoes and a slug of nice thick gravy. Well, actually I can, but I’ll have to go through the process all over again. Which a lot of the time, frankly, is too much trouble. So I’ll either avoid the tempting seconds and feel hard done by, or I’ll have the potatoes and gravy regardless and then beat myself up later for the resulting high blood sugar level.

    The process is this:
    • I calculate (or estimate and hope for the best) the number of grammes of carbohydrate in the food I am eating.
    • I test my blood glucose level – and I’m going to talk about this a bit more later on. It’s a messy, painful, attention-grabbing process involving a noisy, bulky machine, a drop of blood, a tissue. Perhaps then another tissue. If you see me grasping a tissue in my hand, with my fingers tucked into my palm – well, that’s there because I’ve just done a test. And because I do so many tests, there is usually a tissue in my hand. It is not a bandage. Please don’t ask ‘what have you done to your hand?’ because then I’ll have to explain.
    • Based on the time of day, the results of my blood glucose test, and the number of grammes of carbohydrate in the food I am eating – these are three separate factors which will inevitably differ from one occasion to the next - I work out how many units of insulin I need to inject. Every time I eat.

    I test at these points of the day:
    • When I wake up.
    • Before I eat or drink anything containing carbohydrate.
    • Often after I eat.
    • Whenever I don’t feel ‘right’. This is a lot of the time.
    • Whenever I am about to go out.
    • If I’m going to be in the company of other people and don’t want to make a fool of myself by being low.
    • Before important meetings, so I don’t mess up my responsibilities.
    • Before I start work. I work alone, and I work with fire. It would be crazy not to test. It would be crazy to go low – or high. I need to be safe.
    • During my work. See above.
    • Before bed.
    • Sometimes during the night.

    Let me explain what amounts to a Catch 22, really.
    It frustrates me that people don’t know about diabetes.
    It frustrates me that people don’t know about my diabetes.
    But I don’t want to tell them.
    I’m embarrassed to be ‘different’.
    And I don’t want to talk about myself, because it’s a) too intimate and b) feels rather self-centred.

    So, do I tell them? Well, I suppose I should – because I want people to understand - but it frustrates me that I feel I need to waste their time by telling them everything about it. And yet I can’t summarise it. A little knowledge is a dangerous thing.
    If I’m going to tell you, I’m going to have to tell you everything.

    Ready? Here goes. You might want to get comfy – it’s going to take a while.

    It’s all about numbers.
    Keeping between two lines.

    There’s a target range for blood glucose test results. It’s between 4mmol/l and 7mmol/l (that’s millimoles of glucose per litre of blood, if you’re interested).

    Imagine those numbers as two lines on a graph.

    Since the age of 11, my all-consuming ambition has been for my test results to be numbers between those two lines. Always.

    Every single test.

    It’s a full-time job with no time off, no chance of retirement. Given that the numbers change on a minute-by-minute basis, according to what I’ve eaten or haven’t eaten, whether I’ve correctly or incorrectly calculated the amount of insulin I’ve taken, whether I’ve been very active or inactive, whether it’s a hot day or a cold day, whether I’m stressed out or chilled out, or simply because of that mystical factor of ‘just because’, – well, I’m constantly being chased by a whole series of numbers. It’s fine to be chased by the ‘good’ numbers – the ones between two lines – in fact, that’s quite fun. It’s ‘good’. It’s ‘right’.

    The numbers that aren’t between those two lines, though, are the baddies. And I feel as if they’re going to get me.

    But whether they’re high or low, they’re not just numbers. Those two lines aren’t arbitrary. Each number on the scale represents its own set of physical feelings.

    Most of the time, I feel slightly unwell. Not awful, not ill, just slightly unwell. Bearable. Physically, it’s bearable.
    But what does it all actually feel like?

    High blood glucose levels
    • Over about 10mmol/l, I feel sluggish and slow.
    • Over about 12mmol/l, I feel tired and cross. If I’m at this level for a while, I’ll get pain in my lower back, because my kidneys are working harder to get rid of the excess glucose. I’ll feel thirsty. I’ll feel poorly. My breath will smell.
    • If the number is higher, I’ll feel worse.
    • Over about 18mmol/l, I’ll also feel slightly sick, and will want to curl up and go to sleep. Except I can’t curl up, because if I bend my legs I will get crippling cramp. All that sugar has made me slow and syrupy, and my blood feels just too sticky to move effectively.

    Physically, then, if I’m too high, I’ll feel rubbish.

    Low blood glucose levels
    • At around 4.5mmol/l, I’ll begin to feel shaky.
    • At around 4mmol/l, I’ll start to get hot. Very hot. And confused.
    And I’ll be talking and talking without making much sense.
    • Below 4mmol/l, I’ll be vague and vacant. My eyes won’t focus.
    • Below 3mmol/l, I’ll be feeling – and appearing to others – very odd.
    • Below 2mmol/l, it’ll get scary. I’ll be soaking wet and freezing cold.

    Physically, then, if I’m too low, I’ll feel rubbish.

    And if my blood glucose level is dropping fast, I might not even realise any of these things are happening.

    I lose entire days to hypoglycaemia, low blood glucose. On a particularly ‘fun’ day, I’ll be a diabetes rollercoaster. If I’ve been low in the night, I’ll be stratospheric first thing. That’ll make me cross. I’ll sort that out with a corrective dose of insulin at breakfast time, calculated by me according to the ‘right’ criteria. But that might be too much, which means I’ll go low a couple of hours later. By which time I’ll be cross, and if I’m by this stage sick and tired of the situation, I’ll be impatient, and not want to wait to feel better (a process which takes 10-15 minutes or so). So I’ll eat more glucose. And more. Maybe then a biscuit, just to make sure. Or something else. And then I’ll kick myself for being high again afterwards. Again, cross. And then I’ll correct that with some more insulin. And then I might go low again, and – yes - get cross. Eventually I’ll probably just go to bed and hope that tomorrow will be better.
    Tomorrow, though, will be its own rollercoaster. Because diabetes doesn’t ‘improve’. It’s not like a cold, which feels progressively better day after day until it’s gone. Every day, every single day, I feel like a beginner, a novice, a failure. I’m out of control with trying to be in control. It’s a nightmare.

    Sorry, where was I? Oh yes:

    It’s important to consider – for me to consider as well as for you to consider - my lack of ability, when I’m lower than I should be, to think rationally, to concentrate, and to make decisions. When I’m low, my brain doesn’t work properly. Thinking is not its main priority of function.

    Consider this:
    Before Jim’s recent operation, we were reading the pre-op assessment blurb from the hospital. This bit caught my eye:

    ‘If you have had a general anaesthetic or sedation, you should not sign legal documents for at least 24 hours.’

    I realised something huge.
    One can assume from the above that after general anaesthetic or sedation, one isn’t quite all ‘there’. Not quite compus mentis. Not competent to sign legal documents. Not ‘right in the head’.
    I’m not ‘all there’ when my blood glucose levels are below that bottom line. I can’t think. I’m confused. But to you I might not look or seem any different, especially if you don’t know me well.

    I probably won’t realise this, though. If you ask me to do something, commit to something, sign something, then the chances are I’ll be keen to do it. I’m a pleaser, and I like to help, but I might be making a decision when I’m not in full control of my brain. Yes, that sounds dramatic, but that’s the only way I can describe it.

    Often, when I’m low, particularly if it’s an instance where I’ve ‘crashed’ very quickly, and although I will have awareness of not being right, I cannot be relied upon to make the right decisions and go through the right processes to fix the problem. If I’m away with the fairies, generally I’m more interested in the fairies than in finding a source of fast-acting carbohydrate.

    Not only can I not make the decision to take the action required, I don’t have the capacity to make the decision to not make the decision. So I’ll just drift. The social and safety repercussions of such a scenario have the potential to haunt me for a lifetime. Some already do.

    Want to hear about the psychological implications of all this? If the number’s not between those two lines on the graph, then I’m rubbish. By that I don’t mean that I physically feel rubbish (although that is often the case), but that I am rubbish.
    And that I’ve got it wrong.
    I’m an idiot.
    It’s my fault.
    I’m stupid.
    I’m a failure.
    And that I’ve broken my day. I might as well not go to work, not go out. Perhaps I’ll go back to bed, or eat a 1kg tin of Quality Street – after all, if the numbers are going to be ‘wrong’ anyway, I might as well make the most of it. Perhaps I’ll drive to Margate on a whim, without telling anybody. I’m unpredictable and I’m complicated. Who knows what I might do? I certainly don’t.
    Too high? I feel rubbish both physically and psychologically.
    I beat myself up about it. I’m cross. I hate myself for getting it wrong.

    Too low? I feel rubbish both physically and psychologically.
    I beat myself up about it. I’m cross. I hate myself for getting it wrong.

    Do you see a pattern here? This is what it’s like.

    And even when I’m not in the process of doing a test, or if I haven’t done one for an hour, or if I’m changing my plans for the day, or I’m drinking alcohol, or am full of adrenaline thanks to things going on around me, I’m always wondering where I am on the scale.
    Am I ‘right’?
    Am I low?
    Am I high?
    Am I just right but possibly dropping slowly?
    Or dropping fast?
    Or going high?
    There is no escape. It is in my head all the time.

    And for the sake of my long-term health (avoiding diabetes complications such as blindness, neuropathy, amputations, kidney failure) that’s absolutely the way it should be. It is, really.

    Aiming for perfect control means that I’m more likely to be low than high. But whenever I’m low, I come across to myself and to others as completely bonkers. That’s not good for my social life, my work, or my confidence. Or indeed my safety.

    I am told on a regular basis – often in fact by the very healthcare professionals who gave me the target of those two lines to stay between – that I’m too hard on myself, and that I should ease up. After all, a few numbers here and there that don’t fall between two lines are okay, surely?
    Well, are they?

    If you tell me to keep between two lines, then it is right to keep between two lines; ergo going out of that range is therefore wrong.

    How does that compute, exactly?
    ‘You’ve got to be right, but actually, being right all of the time is wrong, so it’s okay to be wrong even though you need to be right’.
    Eh?

    I get so cross when I’m high. And when I’m low.

    Sometimes, I’m just cross.

    * * * * * * * * * * * *

    Love Snapsy xxx
     
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  10. noblehead

    noblehead Type 1 · Guru
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    If you go to YouTube and type in #Type1uncut you will find some useful and informative video's of what it's like to live with type 1 diabetes, here's some information about how #Type1uncut came about:

    https://www.diabetes.org.uk/Guide-to-diabetes/Type-1-Uncut-for-young-adults/

    I quite like the following, it's an amusing take on the frustrations of everyday life with type 1 like testing, injecting and clinic appointments to name a few:

     
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  11. azure

    azure Type 1 · Expert

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    @noblehead I love that video :D I've sent that to more than a few friends. It's not only funny, it really does cover all the frustrations.

    The endless daily grind of it is how I'd explain Type 1 to someone who didn't have it. Nobody gets that if they don't have it. I'd happily do injections every day for the rest of my life if I didn't have to do all the rest of the cr@p that that video portrays so well.
     
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  12. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Brilliant video - thank you for sharing, @noblehead !

    :)
     
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  13. himtoo

    himtoo Type 1 · Moderator
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    WOW !! @Snapsy
    that is a brilliantly written piece.
    ( haven't got as far as the video below it in the next post yet !! )

    haha -- just watched the video -- it is brilliant too !!
    Thanks @noblehead
     
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    #14 himtoo, Jun 30, 2016 at 3:09 PM
    Last edited by a moderator: Jun 30, 2016
  14. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Thank you so much, @himtoo . I really appreciate that. I wrote it in desperation a couple of years ago, to get my head around things, and showing it to my DSN back then was the start of my journey to get myself a little more balanced in my attitude towards my diabetes, and motivated me (and my DSN) to start talking pumps. I occasionally dig it out to have another read of it, because it reminds me how far I've come just in the last two years.

    Thank you for starting this thread - it's brilliant to hear how others cope with diabetes in our everyday lives.

    :)
     
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  15. richyb

    richyb Type 1 · Well-Known Member

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  16. Snapsy

    Snapsy Type 1 · Well-Known Member

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    "you though are lucky at least you have a pump. NHS say's i can't have one yet i have terrible injection sites and had laser on both eyes. NHS is predudice (50yrs and no more room to inject)"

    @richyb I count myself extremely lucky, especially as I didn't fit the 'standard' NICE guidelines. Instead I was considered suitable for one under the ABCD criteria, specifically the quality of life aspects.
    https://www.nice.org.uk/guidance/ta151/documents/association-of-british-clinical-diabetologists2

    I'm sure you've had a look already, but do you know about Input? Their mission is to help people to access diabetes technology, and can offer advice on how to go about being considered for a pump.
    http://www.inputdiabetes.org.uk

    I'd wanted a pump for most of my time spent treating my diabetes with MDI, but had concluded (for myself) that as I didn't fit the standard guidelines, that was it, no chance. I didn't then pursue it properly until last year, and even then was convinced I would not be considered suitable. And to be honest, it was a long journey to get there - a couple of decades wanting one, and then most of last year having numerous appointments with the Diabetes Centre. The 'yes' came last July, and I started pumping last October.

    Do keep asking them, @richyb . I hope it all works out.

    :)
     
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  17. Jeztrob

    Jeztrob · Newbie

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    @Snapsy - agree with all previous comments - so well written and exactly what I've felt over my time as a type 1.

    I'm new to this forum lark so bear with me.

    Type 1 - diagnosed in Oct 1968. I was 18 months old... So my lovely caring Mum took on board looking after me and my diabetes. What an awesome job she did :) I am still alive - despite my own ideas of what might seem to be a good idea at the time...!

    So - what do I know about type 1? What's it like to live with?

    I'm lucky - I'm a healthy 49 year old man, living a life of glee!

    Cons:
    I test three or four times a day - generally before meals and before bed.
    I have to calculate carbs in my food - I've got better at it after the High Wycombe 'Insight' course 10 years ago.
    I inject 1 unit for every 10grams of carbs.
    I inject 24 units of Lanthus for overnights.
    I test before I drive and every two hours into the journey.
    I cannot drive a train or a public-service vehicle - always wanted to drive a train...

    Pros:
    I ski once a year with friends - I'd ski more if I could afford it!
    I have an advanced motorcycle licence (November 2012) - although perhaps a mid-life crisis ;)?
    I've (voluntarily) jumped out of an aircarft - with parachute - static line.
    I've done one bungy jump - that's enough for me
    I eat what I want and inject for the estimated carbs.
    I drink - but never inject for the alcoholic drinks.
    I have my own limited company.
    I have a lovely wife.
    I have a car.
    I have an affection for the eating of cheese (no carbs, see?)

    I lead a normal life - but I'm unsure what 'normal' is?

    I know that there are far worse-off folk out there than me.

    As for being different - I celebrate this! I've had to learn how - but I do it.

    jeztrob
     
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  18. blinddate

    blinddate Type 1 · Member

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  19. blinddate

    blinddate Type 1 · Member

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    Unfortunately being between the two lines does not prevent complications. I have also experienced what you are writing about and it is confusing and a real pain in the a-- but life goes on.
    I have every complication you can think of practically, my liver is still ok more or less. I have been a Type 1 since 1960, I was 4. I became visually impaired in my early 20s, but I can still partially see from my left eye. I started with gum disease in my mid-twenties and now have no upper teeth and a bridge on the bottom. My kidneys started malfunctioning in my late 30s and are now about 15% but I am not yet on dialysis. My heart diesease started at 50 and on July 10. 1010, the stent they had inserted because the heart surgeon thought a triple bypass was too risky blew causing a major heart attack. I was told 3 mornings in a row I was going to die, but I am still here having to worry how much insulin and carbs to have. I have fastidiously taken care of myself all my life and I am still here struggling. And I was told you could live a perfectly normal life.
     
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