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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. CHICKY53

    CHICKY53 Type 1 · Member

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    I have been on insulin for 60 years, I do not find it necessary to tell everyone I am a diabetic. The majority of people I know have not got a clue. I look after myself, I live on my own and get on fine. The one thing I do is every morning by 9.30 I ring a relative to tell them I am ok and check they are ok
     
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  2. shellbell12

    shellbell12 Type 1 · Newbie

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    What a great post!!! I've only just worked out how to reply!! Have a good day
     
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  3. Snapsy

    Snapsy Type 1 · Well-Known Member

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  4. Propertyoflife

    Propertyoflife Type 1 · Active Member

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    I posted this on my fb when I was feeling frustrated with everything but specifically people's attitude towards something I really find difficult all the time:

    Can I just say that managing diabetes is far more than just "cutting out the sweets and cakes" and "sorting out your diet". Whilst for some people this can be a contributing factor it is more often than not something which can't simply be solved by eating healthier.

    I have found the condition difficult enough to manage without constantly being told to sort myself out with the implication being that it is almost self inflicted. Also being told to eat "healthier" foods such as fruit is not always helpful - there is actually quite a lot of sugar in some fruits.

    I appreciate that this isn't always intentional but sometimes hearing comments like those i have mentioned can make dealing with a very difficult condition, which seems to impose itself on all aspects of your life, even more difficult.
    #diabetesawareness
     
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  5. mindy

    mindy Type 1 · Member

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    Well said!!!
     
  6. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Hang on in there, @mindy - I think the 'getting peed off' bit you mention is in fact all part of the 'game'.... The way I see it is to give myself permission to feel like that from time to time, and then I find it's more manageable. Which might sound a bit odd!

    :)
     
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  7. cjj

    cjj · Active Member

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    It's all about attitude and the way you think about it. You either let it be bothersome and let it control your life or deal with it with positive action and attitude. A doctor once said on a Jimmy Young radio 2 show some 30yrs ago I remember, that type 1 diabetes was a slow death. On hearing that, I thought what the ****. Having had type1 for 40yrs now 55, I feel I've done pretty well considering the life changing attitude needed when living with diabetes. It can have its ups as well as downs. The down side is career: armed forces, police, heavy goods truck driving, merchant navy, etc... so if you were set on careers in any of thise areas you need to re-think. I wanted to join the merchant navy, but diabetes prevented this. But I've had a successful 30yrs in TV as a location cameraman. I still do this but, don't travel overseas anymore because of the physical demands with the job and lack of being in control of your diabetes. The years travelling, I often don't remember checking my (bgs) for weeks on end, only injecting when my body told me so, like feeling ****, (you know the feeling when you need insulin) or downing sugarry thing when feeling hypo; not good really. So I now feel more in control, days when I don't feel great, a degree of neuropathy feet, hands, but I try and be more positive and exersise and eat as healthy as I can, but not always possible as my work is UK only so I still travel a lot. To sum it up. look on the positive side and your diabetes should give you years of trouble free health.
     
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  8. Diamattic

    Diamattic Type 1 · Well-Known Member

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    I did not read this entire thread, or much of it at all to be honest but I thought maybe I could share something.

    Living with diabetes is something others will never fully understand, having never done it - I would say its like a women trying to explain child birth to a man, but again that's something i have never done lol

    The best way I can find to describe it so that maybe others will understand is this -

    Imagine that you're on a cross country road trip, you get your car and set off alone, you expect it should only take just over a week so you pack some supplies to get you between stops. Shortly after setting out, after leaving the city and urban areas you enter the countryside - its beautiful - but you hear a strange rattle, then a bang, and before you know it you're in a ditch. No one around you, all alone. You make some calls and someone eventually, pulls you out. You try to start your car up again and its a struggle but it works, barely. You get moving again but its been so long that you're running out of supplies - still with so much of the trip left!

    You're car starts to sputter again, and then dies, so you pull over and try for help, but no one comes. Its night time, and getting cold - you are so poorly prepared for this because you never imagined it would happen - so you do your best to curl up with what you have and just focus on making through the night.

    The morning comes and you're starving so you eat the rest of your food and snacks because you think the worst is behind you, this can't possible keep up, today will be better - maybe the car will start! You turn the key, it faintly clicks, and rumbles to life. With a smile a fully belly you set off again. Still in the middle of nowhere its only getting colder, but your confident today so you press on. Only a couple hours in you hear that strange clicking, and sputtering and the engine dies again. This time you're only left with scraps, and you've called for help but still nothing, so you wait. You try to look under the hood, and blindly poke around hoping you've done something to help so you turn the key again and with some luck it starts! You're on the road again, still though - the beginning of your journey.

    This trend of constant break down, random fix, calling for help, worry about whats next, how will it end - will it ever be fixed properly? is infinite and cyclical. Its disheartening but we do our best. Over time you learn to cope, some better the others, and over time the break downs become less and less surprising and our reactions grow calmer, but the situation is no less severe and dangerous - we are just a bit tougher.

    This journey that was supposed to be a fun filled, sight seeing adventure we were told all about turns out to be a stressful, problematic mess - sprinkled with fun, sights, and adventure depending on how good of a mechanic we learn to become - but overall its a very different journey then those around us and those who have come before us.

    We can still make all the same stops as everyone else, do all the same touristy things as everyone else - but we will always have to be weary of the next breakdown, doing our best not to take our eyes off the road for too long or we may hit a bump and that could send us into the ditch and loose precious time on the road.

    Keep those eyes and ears open, learn to listen to what the car is saying, and learn to pinpoint all those little rocks, and potholes that may end up damaging our car along the way.

    /fin

    Sorry for the length, but ya know - explaining what its like to live with diabetes cant really be done succinctly lol

    I mean or its like being lost in the woods, or maybe its like having a pet squirrel thats quite annoying and aggressive but is our responsibility... I am sure I can think of a few more if this doesn't hit home with some.
    Cheers
     
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    #88 Diamattic, Jul 28, 2016 at 4:28 PM
    Last edited by a moderator: Jul 28, 2016
  9. Snapsy

    Snapsy Type 1 · Well-Known Member

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    What a brilliant, brilliant way to describe it, @Diamattic - the road trip analogy is just perfect!

    :)
     
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  10. Dodo

    Dodo Type 1 · Well-Known Member

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  11. Snapsy

    Snapsy Type 1 · Well-Known Member

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  12. Dodo

    Dodo Type 1 · Well-Known Member

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  13. Type1Bri

    Type1Bri Type 1 · Well-Known Member

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  14. sugarybibs

    sugarybibs Type 1 · Well-Known Member

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    I've been type 1 for 46 years diagnosed 1970 I was then a skinny teenager stuck in hospital full of old people dying i was so scared no one had heard of sugar diabetes in my family my poor mum and dad were s so worried n for me I had to stay there for two weeks came home with weighing scales glass syringes and big thick needles cotton wool and bottle of methylated spirits I hated it injecting into my poor skinny legs and arms boiling syringes and the pain on injecting was horrendous we have come a long way since then .My parents were told I would not live very long not have kids probably lose my legs go blind etc Well i am still here with 4 grown b up kids my legs and can see and still go out weekends holiday all over Europe not bad for a type 1 diabetic
     
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  15. Jacquelineann

    Jacquelineann Type 1 · Well-Known Member

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    That's the best resume I have heard! I wish I had written it! But like you I don't want to tell people because it's too darn complicated to tell people and you can see boredom setting in truly within the first 30 seconds. However if they are to understand that sometimes I cannot do anything more than sit and allow the BS level to go up for 15 minutes, without talking to them, without answering "Are you having a funny turn" (I'll hit someone one day if they say that!) then they do need to know why I cannot focus, why I carry a mini medical kit around with me and why I run on manual to their automatic, why I can't do that eight mile walk or sit in the spa pool without considering the outcome. And how do you explain that sometimes you can't eat something and sometimes you have to eat the same thing if no one will listen? Here is what happened at a barbecue in Spain where I live the other day...after I had eyed up the table I went to inject according to what I planned to eat...I then said "Do you mind if I inject myself" and wife of an ex-nurse said (are you ready for this??) "No not at all, X (her husband) will do it for you if you like........" So of course I asked him to follow me round 24/7 as I don't manage by myself..... Then we sat down, I ate a burger without a bun and some salad, a piddly little bit of cheese, a tiny square of chocolate and helped myself to a couple of pieces (cubes) of melon..."nurse" said "I don't think you should be having that but you know best....." (thank God he didn't see the chocolate!!) Two hours after eating I tested and it was around 200 (11), not great but I was quite pleased at my guess work. Nurse said "Well I think you should take more insulin"
    Said nurse is still alive, just....
    Have you ever posted something similar on Facebook which I could share? It's brilliant. Actually maybe you haven't as you say you are unsure about sharing it widely...if you ever decide to do so or to publish it anywhere please let me know. Well done you x
     
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  16. Snapsy

    Snapsy Type 1 · Well-Known Member

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    HI @Jacquelineann , thank you for your kind words. And you hit the nail on your head with what you've said here! You're right - it's a complete paradox, and it's inevitable that people don't understand that sometimes you do, sometimes you don't!!! :banghead:

    Regarding sharing - I've not ever put it on Facebook (I'm a lapsed FB-er with no desire to return), and have been meaning to start a blog but haven't. But it's out here, in the public domain, as it were, so by all means. If you could credit that it was posted by Snapsy on the Diabetes.co.uk forum then that would be kind.

    Have a great day!
    :)
     
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  17. Jacquelineann

    Jacquelineann Type 1 · Well-Known Member

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    I'd be delighted! Do you want me to take out your real name? Or give you a pseudonym?
     
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  18. Snapsy

    Snapsy Type 1 · Well-Known Member

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    As it's only first names @Jacquelineann I'm fine with that. Kind of you to ask!

    :)
     
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  19. Jacquelineann

    Jacquelineann Type 1 · Well-Known Member

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    Thank you! Let's hope it raises awareness!
     
  20. james122

    james122 Type 1 · Well-Known Member

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    'A death sentence' in my own words!
     
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