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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. Brendon.Dean

    Brendon.Dean Type 1 · Well-Known Member

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    Thank you @himtoo it seems very resourceful so far.

    Thank you as well @Snapsy

    I forgot al about the honeymoon factor but let me tell you if that is the case I pray that it is over; the level of unpredictability is unprecedented to me!

    It's definitely reassuring though hearing others such as yourself and some of the experiences you've had. Knowing what you still battle with, it's a motivating feeling, it motivates me just knowing I'm not alone.
     
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  2. Snapsy

    Snapsy Type 1 · Well-Known Member

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  3. donnellysdogs

    donnellysdogs Type 1 · Master

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    Such a moving, challenging time you have had but so wonderful to see that you are starting a new chapter. Your positiveness is actually shining through. Well done....
     
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  4. Bic

    Bic Type 1 · Well-Known Member

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    Cracking post, pal!
    You quoted a doctor defining T1 diabetes as a slow death; that reminds me of a booklet I was given to read when first diagnosed (I was around 20). It said that T1s could live a next-to-normal life, though «not a happy one, of course»… I stopped short, threw the book out of the window and busied myself living happily ever since.
     
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  5. jasmine1616

    jasmine1616 Type 1 · Well-Known Member

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    I am going to try and put this in a way that is not a million page essay that takes forever to read so I am going to try and put it in a few sentences.
    First of all, I have only had Type 1 Diabetes for about a year and it was very stressful, but fun. It was stressful finding out that I had diabetes and learning how I had to adjust to this condition. The fun part was participating in so many different diabetes walks and seeing other people who deal have to do (for the most part) the same stuff as I do. I got to see all of my family and friends (some people who I didn't even know came to my diabetes walk) who support me. It is definitely something that I never thought would happen to me, but sometimes I am glad it happened.
     
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  6. Ledzeptt

    Ledzeptt Type 3c · Well-Known Member

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    My wife understands what life as a diabetic is like, but not my wider family.

    I'm in hospital at present (non-diabetes) and have time to kill (probably too much time). I decided to invite my family to play a little game via our WhatsApp group. I photographed my dessert and asked them to guess how many carbs it contained and what my BG would be before my next meal, initially just for fun (I gave them a little info, but not much).

    I turned it into a educational exercise to explain why I needed to know this info and why I needed to do these sums all the time. The carb guesses were reasonable, but as you'd imagine, there were some ridiculous BG answers (e.g. 700mmol), but amazingly one guessed my BG would be 5.6, close to the actual 5.8.

    However, as I tend to do, I took it too far (at least in my wife's opinion), by explaining what would happen if I get the maths wrong and my BG ends up too high or low. Apparently, some people don't like the idea of diabetics "dicing" with coma/death and "I have too much time on my hands" :-(

    I thought it was useful, but I probably won't do it again. If anyone wants to try such a game, it may be better at a family gathering rather than online so you can gauge the reaction (and treat adults as small children if appropriate).

    ==> Maybe it's my sense of humour, though I'd expect my family to understand it :)
     
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  7. noblehead

    noblehead Type 1 · Guru
    Retired Moderator

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    @Ledzeptt , here's to a speedy recovery and hope your back home in time for Christmas.
     
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  8. Paul520785

    Paul520785 Type 1 · Well-Known Member

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    For me - Type 1 for 59 years - 2 injections every day for as long as I can remember.

    My motto - I can do anything that anyone else can do but I will always take my sandwiches with me.
    The only snag with this is that, from personal experience, when a mile off shore on a jet ski cheese and tomato sandwiches taste revolting even with just a little salt water.


    So being serious - every one needs to fully understand their condition and be happy and confident with the medication provided and used.
     
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  9. Paul520785

    Paul520785 Type 1 · Well-Known Member

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    I solved the same dilemma by using a fixed daily insulin dose which was tailored to a day of total laziness. I then ate to balance the exercise. The essential factor is not to change both food level and insulin at the same time because doing both together gives you no base level to work from. Remember food can be adjusted as you work tho' the day with a nearly immediate effect.
     
  10. leslie10152

    leslie10152 Type 2 · Well-Known Member

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    I am type 2 yet I live with this ****.
     
  11. DiabeticSince1

    DiabeticSince1 Type 1 · Member

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    As a Type 1, NOTHING changes.
    The only slight change is the needles...? And you need to take some additional responsibility.
    Other than that, nothing.

    You can still eat whatever as long as you can take care of the insulin it requires.
    You can do whatever you want as long as you can take care of your bloodsugar levels.

    Some requirements, but you barely notice it.
     
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  12. Samh3891

    Samh3891 Type 1 · Newbie

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    I was diagnosed 20 years ago as a type 1. Ive found it fine up until the last sort of 12 months circumstances have changed etc. But one thing I have learned quite recently through reading advice and peoples great stories and experiences on here is don't be too proud if you in a rut to admit and ask for help thats what I'm finding. Reading a lot of these stories on the forum (which i only joined today) has inspired me to change and get back to how I used to be. Not to be too proud to admit it and do something about it now before its too late. I think with diabetes regardless of what type you will have your ups and downs but when you are on a down its how you deal with it and break through
     
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  13. Eireannn

    Eireannn Type 1 · Well-Known Member

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    Before most of us became diabetics, we never really thought about or considered anything when shoving food into our mouths. It was natural to us. I didn't know anything about diabetes and I heard from everyone else that too much sugar (which now I kick myself over because it's so **** wrong) caused diabetes.

    When you become a type 1, you question yourself all these questions and blame yourself. I blamed myself, I thought I did something that caused it, when really it was possibly genetics. I cried everyday asking myself the same questions, "why me?" or "what have I been doing wrong?"

    Everyday is so much more hard-working. Checking blood sugars constantly, injecting or taking Insulin before eating that delicious piece of food right in front of your eyes. Not only that, but carb counting and becoming a genius mathematic you never thought you could be and also the lows and highs we experience everyday.

    For me, being a diabetic has benefits such as keeping weight off as you can't be bothered to inject to eat that bar of chocolate but it also has the downsides such as hypers, hypos and watching your friends munch away right in front of you, wishing you could be doing that too. Hypos are a pain in the bottom because you have to treat it (which is alright, I suppose ;)) but then have to wait up during the night until you're in your target range again.

    It really pees me off when someone doesn't understand the difference between type 1 and type 2. We can't just have a simple healthy diet and lifestyle and reduce the amount of medication we need. We have to fight for the rest of our lives. All of us do. Including the type 2's. And that **** sugar didn't give us diabetes!!!!!
     
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  14. PurpleChrisB

    PurpleChrisB Type 1 · Member

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    Oh my goodness. I dont know if my post will be helpful or not. I have had Type 1 for 41 years, since I was 7 - I had my 8th birthday in hospital. It was the 1975. In those days we were on pig insulin, and one injection a day. If you think it is hard now...nevermind :) At the age of 7 I was banned from chocolate, sweets, cake, and all the things a 7 year old likes. But the thing someone told me then that is still relevant today is that either you control it, or it controls you, so you better do it with a smile. I am so grateful for that advice over the years. Yes it has been hard sometimes, but it could have been harder. I didnt get cancer, and I didnt loose a limb. To all intense purposes I look healthy. I am not disfigured. I am diabetic. I have made friends I would never have made, I have probably eaten healthier than I would have done otherwise. And I dont feel like I have to "fight" every day, I just have to "manage" just like everyone else. Some people, friends and family will never "get it". That is their problem, not mine. There are things about them that I will never understand either. I am so so grateful I never went through the whole anger, why me thing. I just accepted it and got on with it. It may have helped that i knew one of the first men that survived being diabetic. People used to die from this. We dont die now, unless we are really silly anyway :)
    I hope this helps. Just stay positive and realise how god you got it. It may take hard work and I know that is out of fasion, but that is just tough luck. It is doable, and can even be enjoyable if you let it.

    Love Chris
     
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  15. Brendon.Dean

    Brendon.Dean Type 1 · Well-Known Member

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    I'm not sure I really understand what you're saying to do. If you find the time to dive deeper and break it down for me that would be appreciated, thanks @Paul520785
     
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  16. Smithsky

    Smithsky Type 1 · Member

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    I have been type 1 for a few years, I was in my 40's so it was a bit of a change in mindset but is normally OK ish. (pre menopause now is turning into a bit of a challenge) at my age my children can never know I get scared - apart from times little one really does need to shut up so I can say I need to eat something sort of NOW. I did forget that dancing at a party was possibly not in my calculations last night but no one is perfect and we all need to stop beating ourselves up about all this. Low GI is great- you need carbs, diabetic now compared to people I have met who used to try and measure their pee against a colour chart to work out their blood sugar - you have to admit its not as bad as it used to be.

    Keep positive, eat cherries - neutral and lovely for a month of the year at least - my tip is get a dog it makes you go out when you don't want to and walk more than you would have on a mini health kick. And red wine is neutral enough to keep me sane
     
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  17. Deleted Account

    Deleted Account · Guest

    As I was diagnosed with Type 1 in my 30s, I can say that I do all the things with diabetes that I did without: I eat the same, drink the same, exercise at least as much, work a stressful job, travel frequently, try new challenges (sky diving, sailing, canoing, walking in the Himalayas, Via Ferante,...).
    The difference is I know my way to the local hospital as I have a diabetes review, I am no longer afraid of blood tests (which is sad because I can no longer give blood), I am aware of the carb content of all I eat and drink, my finger tips are bruised from BG tests (about 6 - 8 a day depending on what I am doing especially exercise wise) and I have a "pack of cards" sized pump attached to my waist which I press buttons on every time I eat and most times I prick my finger.
     
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  18. powerley

    powerley Type 1 · Active Member

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    One phrase i have always been told and think about every day is.

    Diabetes does not control my life, if i control diabetes
     
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  19. kimlouise1502_

    kimlouise1502_ Type 1 · Active Member

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    I can see that we are all feeling this way. Even after 37 years i still get good and bad days its part of life. Take care all xx
     
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  20. devexity

    devexity Type 1 · Active Member

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    I was diagnosed when I was 32 and pregnant, and for ten years it made no difference to me at all. Just like it doesn't for all the smug, unhelpful people who show up on boards like this telling other diabetics how easy the condition is, and how they must be doing something wrong. Then I hit my early 40s, and my glucose went insane.

    For those of you not walking around in and managing a female body, you have not even an inkling of an idea of the chaos that hormone changes wreak on insulin sensitivity and requirements. For two weeks of every month I may as well be injecting water; for the other two weeks I crash constantly. Try looking up glycaemic control and perimenopause/menopause and you'll find a host of medical research papers that begin with lines like, "It is not yet understood..." and "The relationship of progesterone and insulin sensitivity has not been studied..." It's hard not to come to the conclusion that if menopause happened to men, someone would have bothered to investigate.
     
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