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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. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Yup!
    :wideyed:
     
  2. Crystalwand

    Crystalwand Type 1 · Well-Known Member

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    Hi I love your post, T1 40 years and counting, two adult kids, a hubby, still going though the change its hell and every time I tell the nurse, all she ever says is I know, how you feel me too, but you need to have better control, you need to loose weight as well, ps my hba1c were 52 and my weight was 61kg she is saying I need to be 55kg or less now I just say ok and walk out, the change is hell, and no one has anything to say so really what I am saying is that I am done what will be will be X X X

    Sent from my Moto G (4) using Diabetes.co.uk Forum mobile app
     
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  3. Lord Midas

    Lord Midas Type 1 · Well-Known Member

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    Oh @Snapsy, I hope you don't mind but I mentioned you on my blog linking to this thread, and to your post (#10). It's bloody brilliant
     
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  4. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Awwwwwwww.........!
    :angelic:
     
  5. Scott-C

    Scott-C Type 1 · Well-Known Member

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    What's that line at the end of it? "There's a storm coming."

    Are we outside of the storm trying to run ahead of it, or are we trying to keep safely placed in the calm eye at the centre of it, knowing all the time there's a storm of potential hypos and hypers surrounding us?
     
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  6. evj95

    evj95 Type 1 · Active Member

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    All I can explain it like is having to test my bg and thinking multiple times a day 'Why the hell can't I bleed like normal people?!?' then Injecting myself 4 times a day with insulin and people cringing because it's a needle and I'm sat there thinking 'This is nothing.. wait until you're in hospital having your bg taken every hour and a blood gas every 2 hours. Then you'll become immune to the stings of needles'

    Sometimes I think I'm crazy that I find it actually fascinating that I am able to do this myself whereas before diagnosis I would try everything in the book to get away from the next jab I had to have.
     
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  7. Bon83

    Bon83 Type 1 · Well-Known Member

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    Loads of people say they feel sorry for me having to do all these injections - if I know them well enough I say that injecting is the easy bit it's the relentless worry of if you're too high or low remembering to put your bg machine in your pocket along with various glucose products stuffed In your pockets. ...All to just get some milk from the shop. Diabetes can be so inconvenient!
     
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  8. evj95

    evj95 Type 1 · Active Member

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    @Bon83 I know! I miss the days where I could walk out of the door with just my phone, purse and keys in my pocket and walk to the next village about three miles away. Now I have to do a mental checklist of what needs to go in my bag, triple check I have everything and then worry about going low or too high! I'm only just diagnosed so it's weird trying to change my habits.

    Like I would go do the weekly shop with just my phone and purse and now i'm forced to carry my bag with me around the whole shop by my mother as she 'doesn't want me going hypo on her'. I just told her that whether I'm with her or someone else if my bg tanks, it tanks! No stopping it from happening until it has happened. Then all I can do is stuff my face :D
     
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  9. Circuspony

    Circuspony Type 1 · Well-Known Member

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    I'm newly diagnosed type 1 and all anyone asks me these days is 'how are the injections going'. They are the easy bit! The blurry eyesight causing me headaches and stopping me driving is a nightmare. Trying to work out how much insulin to have is stressful. Working out which sore finger to prick is tiresome. Oh - and I'll never be able to go out with a small handbag ever again!!
     
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  10. Diakat

    Diakat Type 1 · Well-Known Member

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    Loss of small handbags caused me great distress as well.
     
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  11. Dianemacfaden

    Dianemacfaden Type 1 · Member

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  12. Dianemacfaden

    Dianemacfaden Type 1 · Member

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    Hi there
    Sounds like you need are trying to imitate what a pump does. Have you done DAFNE? Freestyle litres are brilliant, just wish we could get them free! Had type 1 since age 8 , 48 years ago and have eventually realised that low carving is the safest way of life!
     
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  13. Dianemacfaden

    Dianemacfaden Type 1 · Member

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  14. Smsquire90

    Smsquire90 Type 1 · Newbie

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    I was diagnosed a month ago and still struggling so I know how you all feel especially when you have friends that do not understand what you are going through I just get them telling me what to eat or not eat and what I should or shouldn't do but this does sum it up for a lot of type ones out there
     
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  15. evj95

    evj95 Type 1 · Active Member

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    @Smsquire90 I know the feeling of friends dictating what to eat or not! I still get that too, but now I either just tell them to fob off, or if its a friend that has just known and don't know much about T1D, I will explain to them very briefly and quite harshly to be honest that I can eat what I want as long as I'm careful.
    I also hate it when I have the stupid feelings that I have when I'm too high - Headache that just makes me want to crawl into a hole and die, feeling so god damn tired I could sleep all day. These are not good combination when I'm trying to do stuff at work before I finish because jesus christ if I sit down for five minutes I'll be asleep!.
    Then an hour later I could be having a hypo and can't think properly, can't get my words out right and shaking like hell.
    There is no perfect number for this, no bullseye to hit.

    A friend has described it to me as a tightrope that I am walking and everyday its trying to balance right to not fall off, knowing how fast or slow I can walk that tightrope before I lose balance altogether.
     
  16. Fairygodmother

    Fairygodmother Type 1 · Well-Known Member

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    Brilliant piece Snapsy!!! You say you were reluctant to share it but I'm so glad you did! I wish everyone could read it. May I show friends and family and anyone who just happens to assume that it's easy? That we can always be rational? That we can always be even-tempered? That we're not naturally self-absorbed?

    Thank you so much for posting.
     
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  17. clanders

    clanders Type 1 · Active Member

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    Hi there. I have been type 1 for 45 years after being diagnosed at 10 years of age.
    Diabetes has impacted on every area of my live in a fairly negative way.
    I lost all hypo awareness in 1986 was I was changed from porcine insulin to human insulin.
    As an expectant mum and then new mum I spent most of that first pregnancy unconscious and then subsequently with my daughter was also in an unconscious state frequently.
    Relationships 1 marriage and one common law relationship were impacted by my diabetes and particularly my complete unawareness of hypoglyceamia. My second relationship was particularly difficult (he is a doctor) as he had no tolerance for hypos and I was punished for having them. The stress of the abuse/risk of abuse made more hypos occur.
    My daughters are gorgeous young women but I am aware that they watch me for signs of hypo when we spend time together which makes me feels like a useless mum. (I should be minding them).
    I suffer with depression.
    Last year, following a shock at work, I became a brittle diabetic and now have to check BS 8-10 times a day.
    I dislike injecting in toilets and struggle with comments from judgemental people who assume because it's an injection it is something 'dodgy'.
    With frequent unconscious hypos I dread going out. In December last year I became unconscious in my local shopping centre. I came to, to find 2 police men, 2 security guards and two paramedics attending me. I was mortified and could hear members of the public talking about what a disgrace it was to have women falling around drunk at that time of day.
    I don't drink because of the risk of a hypo being mistaken for alcohol consumption.
    I am waiting for an ETA hearing as I was sacked from my last job and the company I worked for made a huge deal about me being diabetic and having hypos even though I had disclosed this at interview and had completed a health questionnaire.
    I have a plethora of other autoimmune diseases now including Raynaards, Hypothyroidism, Arthritis, Vitilligo, Anaemia and excruciating joint pain. I have a recent diagnoses of background retinopathy.
    Type 1 diabetes is a hideous disease. There is simply no aspect of my life which is not adversely impacted by it.
     
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  18. therower

    therower Type 1 · Well-Known Member

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    @clanders . I'm struggling to know what to say to you, but I just felt a need to post something.
    Diabetes has had the totally opposite affect on my life compared to you. I would willingly give you my positivity if I could.
    I hope and pray light and well being find a way into your life.
     
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  19. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Course you can! Glad it's helpful!

    Your reference to 'rational' has really made me giggle.....!
    ;)
     
  20. Snapsy

    Snapsy Type 1 · Well-Known Member

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    @clanders I'm sending strength.

    Unlike my good friend @therower I often lean towards a less than positive viewpoint on the impact diabetes has had on my life - but I do my best to live the simpler life I've chosen (due to the impact of my diabetes and my mental health on my previous life and career, for instance) as best I can, taking it into consideration as I do every step of the way.

    We're all different, and that's a good thing. I would like to find things easier than I do, but I do my best with what I've got, even though I know I'm missing out on some things. I absolutely give myself a much harder time than I need to, but perhaps that's just how I'm wired.

    Not entirely sure what I'm trying to say here - just coming up from a 3.4 (bike ride this afternoon - FORGOT about likelihood of a sudden drop several hours later - my bad) so I'm revoltingly incomprehensible - but I want you just to know @clanders that I totally understand where you're coming from, and please have a hug on me.

    Love Snapsy xxx
     
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