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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. Bon83

    Bon83 Type 1 · Well-Known Member

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    I agree that young people and younger adults need more help! I still class myself as a young adult although I doubt that I am at 34 lol. Some books I have read have been brilliant - diabetic athletes handbook and dealing with diabetes burnout for example. It's probably the case that the nhs cannot endorse books or forums but it certainly makes things slightly different when you find them! I live a totally different life now since type 1 diagnosis, I think someone else said they are healthier and make better choices. I know I do! It's easy to feel that those without diabetes can do what they want and eat what they want but nobody should hammer sweets and junk food and drink loads of booze. remember to be easy on yourself we are all only human!
     
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  2. Vicky_Salmon

    Vicky_Salmon Type 1 · Member

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    I have been type 1 since 2003, so 14 years. I take 3 injections a day and am relatively active - a single mum with 2 teenagers and a dog. I am not paraoid or overly careful about my blood sugars since I am the only carer of the 3 above mentioned. Maybe I could be considered foolish.... I am English and live in Rome, I have no family here, only good friends so I have to look after myself.
     
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  3. James_Donnelly

    James_Donnelly · Member

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    I was diagnosed just before I was 21. I'm quite well controlled most of the time.

    It freaking sucks though. There is no getting around that. Sometimes I just want to pig the hell out and stuff my face with junk food but know that I can't really do that. I just want to eat stuff at the cinema but know if I don't have my insulin I can't do that either.

    It sucks and I'd love just a day of not being a diabetic. I can remember when I wasn't as I went through my whole teens not even having to think about it.

    But I know what can happen if it isn't controlled. I was diagnosed not long after my uncle died through complications of diabetes. He was in his 40s and had went from being what I thought was living a normal life to having to have nurses look after him on a daily basis for years after he fell in to a diabetic coma and that was something that really scared me.
     
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  4. Gabebd1985

    Gabebd1985 Type 1 · Member

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    ^ I'm sorry to hear your loss. Frankly I've lived life with the same urges, you want to just go out and eat all ya can but then you have that haunting reminder that you'll pay double for every mistake. What help me get through it is some healthy distractions, pets and animals over all all ways do the trick.
     
  5. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    It must be tough living in another country with no family. I had my daughter at 42 1/2 and virtually a single parent even though my ex partner and I remained good friends until his death, when our daughter was 11, but the five months leading up to his death ( I knew he was dying, but my daughter didn't) made my BS go haywire and I became Coeliac after his death and a month later, diagnosed with Osteoporosis, so stress, worry and upset has a big impact on my management of diabetes.
    At 59 I am still active and my weight is good. I went to bed last night on a 7.5 and awoke on a 3.5, not a great start to the day and I concur with your last sentence, I have had to look after myself and I will continue to do so.
    All the best and take care @Vicky_Salmon
     
  6. Diakat

    Diakat Type 1 · Well-Known Member

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    To be sitting on the cattle truck of a train home in the heat and look at a stranger standing up drenched in sweat and rather than logically thinking "that's normal it is 30 degrees outside" to think, oh goodness he's hypo! Before checking my levels in case I'm not thinking straight.
     
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  7. SHROPSHIRE_LADY

    SHROPSHIRE_LADY Type 1 · Member

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    You have just explained how I feel, thank you.
     
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  8. F1_fan

    F1_fan Type 1 · Newbie

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    I was diagnosed as type 1, six years ago and it came totally out of the blue..I was in shock and terrified because my sister died the previous year, and that was diabetes related.
    She had been type 2 for years and she needed to go on dialysis. She had a heart attack after her first session and suffered brain damage.
    The sad thing is, she had always been overweight but she spent her last two years losing a lot of weight by healthy eating and exercising constantly.
    In the beginning, I became very depressed and lost interest in almost everything.
    After a while, I came round, got used to it and got on with my life. After all, it was only 2 minutes of my life twice a day, for a tiny jab and a tablet.
    I quit smoking straight away, and my wife helped by quitting as well..With the money we save, we have regular weekends away and treat ourselves to some new gadget or other that we couldnt afford before.
    I learnt not to let diabetes rule my life.
     
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  9. ksierra1901

    ksierra1901 Type 1 · Newbie

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    Hello, I've just joined the forum today and this is one of the first articles I have read. I wanted to post a reply as reading what you have written has actually been a massive help to me, and I wanted to say thank you. It's so brave to put out to the world how you really feel/have felt in the past especially when it's hard for many people to truly understand!
     
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  10. PaulAshby

    PaulAshby Type 1 · Member

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    I've had type 1 for 54 years and although it can be a pain it's a condition that's relatively easy to manage but it does need discipline, it Won't stop you doing most things you want to unless you want to fly/drive a plane, bus taxi or anything to do with public transportation which we are not allowed to drive for good reason, you can be pissed off sometimes but don't let it get you or get you down.
     
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  11. azure

    azure Type 1 · Expert

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    Welcome @ksierra1901 :)
     
  12. Lulu9101112

    Lulu9101112 Type 1 · Well-Known Member

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    I got diagnosed at age 7 type 1 during my childhood I lived back in Singapore back then. I'm now 18 once you get used to it it just becomes part of your daily routine. The main annoying bits are:
    Not knowing the cause of how you got it?
    Getting Bullied because of it at school/college etc...
    Getting odd looks when your doing your blood/injections in public places or on transport.

    To be honest if you just think of positves and not negatives it rarely brings you down as there's worse things you could of gotten take being blind, deaf, dissabled etc..

    Also it's not like it stops you from doing anything you can still do pretty much anything just have to be more careful
     
    #172 Lulu9101112, Jul 26, 2017 at 8:38 PM
    Last edited: Jul 26, 2017
  13. Lulu9101112

    Lulu9101112 Type 1 · Well-Known Member

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    According to DVLA you can still drive a bus/lorry if you have 3 months of continuos glucose readings every time you apply for your licence (Just googled it).
    With planes. No insulin dependent diabetic no matter what type can fly a plane.
     
  14. Diabeticliberty

    Diabeticliberty · Well-Known Member

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    I have been type 1 for 32 years and would like to assure any newly or not so nearly newly diagnosed person who is wondering that the condition doe snot need to restrict anything you wish to do. The condition, if approached with reason is completely manageable. As this is a Diabetic Forum I suspect I am preaching to the converted but above all you must test and test and test again. Without testing we are pretty much powerless to change any aspect of our care and management. The condition then will more than likely beat you. Knowledge really is power and the power that testing provides really is the key to a long and healthy life. Grab that healthy life and don't ever let go. Life is brief. Make the most of what you have and never, ever give in
     
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  15. Johnr57

    Johnr57 Type 1 · Member

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    Absolutely excellent post !!! Only 31 years t1 here but agree 100%.

    I saw a post the other day that summed it up well

    Live life - don't google it!
     
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  16. Angrysadhappy

    Angrysadhappy Type 1 · Newbie

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    At the beginning of every yoga class, when you are to tell the teacher of any ailments - I stick my hand up and I say "I need to let you know that I am a Type 1 diabetic and I will probably test my blood sugar in the middle of the class" at best the response is "ok, thanks for letting me know". Often I get, "just listen to your body, you know it will tell you...." and they go on for a minute or so and I have to stop my self from being sarcastic and mean. THAT'S ALL I DO IS MONITOR THIS BODY, I'm dying to shout. Sometimes the instructor looks slightly terrified and I have to comfort them. I think to my self in these moments, why am I telling them. I am going regularly to the same place now and some of them remember sometimes and we exchange a remembering face/wink/smile thing which is good.
    Once, having been to the same weekly yoga class on 4 consecutive weeks, having said it each time. "has anyone got anything wrong with their body that I need to know about?" she goes round the class. I wearily looked up with my monitor and glucose tablets on display, full to the brim with fed-up-ness. "Its a bit tiresome for me to say every week" I say wondering where the f*** that came from. "well I teach a lot of people, so everyone needs to say at the beginning...." I interrupt her like a teenager, "Fine, yes, ok. I have type 1 diabetes and I will probably test my blood sugar in the middle of the class". I never go to her class again.
    Went into the lido on Saturday morning asking if anyone had handed in my blood sugar monitor... the lady said "No.". I was a bit startled at her tone and said "just No?" "I've looked this morning and there is nothing like that" she snarled.
    Phoned 4 pharmacies, none of them supplied them (I felt a horrible dread, WHY DON'T I HAVE A SPARE!! I might be destroying my sight, my nerves, shortening my life). On the next call they confirmed that they had it. I was specific about the strips. Drove 4 miles there. picked it up, elated, relieved. Bought the £25 monitor, went out side, ripped open the box, wrong strips.... went back to the pharmacy, told them, asked them if I had the other that I asked for on the phone... they had thought that it was the right one too. Went home to bed and cried. From bed emailed the diabetic nurse at the hospital that only works on Thursday and put in my diary to sort it out on Monday. I have 10 strips, its going to be ok, stop worrying about it. Got up, went to a weird comedy thing with my Aunt laughed a lot, drank tea (not drinking because I am on anti biotics for an infection that my body can't expel). Sunday morning, go to the lido with a friend. "Oh - did you come in yesterday looking for a thing that......" turns to the other receptionist "I think this is the lady that we sent the email around about that lost the thing". "My blood sugar monitor????????" "Yes" the receptionist said... GRRRRRRRR.....
     
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  17. Angrysadhappy

    Angrysadhappy Type 1 · Newbie

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    I was diagnosed around 23/24 and it was like that then. I just feel so sad reading your post because I just remember how hard it was and is... I went on the DAFNE course and it changed everything for me. I don't know what the rest of the forum think about this, as it is my first day on here and I don't know what's what. I got on it through the consultant at the hospital. I think different places offer different training courses. DANFE means Dosage Adjustment For Normal Eating. I think there is a website. I still feel lost sometimes, but less helpless than I did.
    Are you feeling down quite a bit as well? I get quite down about it a lot and feel a bit isolated and frustrated that I can't really talk to my friends about it, because you sort of have to teach them about it then you sort of don't get to straight up and down moan about it.
     
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  18. Shannon27

    Shannon27 Type 1 · Well-Known Member

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    @Snapsy to be honest right now I'm almost crying! I've had T1 since I was 4 (1999), now I'm nearly 22 and living with three other people, none of whom have the slightest idea. It's so hard, and this post has summed up exactly how I feel. I've struggled to control it myself for years, and have recently decided, RIGHT! Time to get it sorted out, to get it under control. It's difficult though when no one else in your social circle really gets it, and I keep lapsing. This post, however old, has really helped me :)
     
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  19. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Oh @Shannon27 thank you for your lovely rating on my 'Between Two Lines' post, and this lovely post from you!

    It's difficult, isn't it, when people in our day-to-day lives aren't able to grasp what needs to be - for us - second nature? All the testing, working out, changing plans at the last minute to deal with hypos or the fact you've suddenly run out of insulin, etc etc - all that stuff. It's only now that I'm about 200 years old (okay, 42 and a half!) that I've finally got to grips with trying to have diabetes with confidence - when I was a teenager and then a student it just seemed easier to hide it, deal with it on my own, not let any of the feelings - not to mention all the diabetic kit! - even show. With hindsight that was tremendously lifestyle-limiting - so I think if I'd tried to get people on board with it I would have been able to better deal with it.

    As people we diabetes we have so much more to deal with than a lot of other people do. And although my diabetes is my diabetes, I'd find it all the more difficult to deal with if those around me didn't know about it. I wish I'd realised that quite a lot of years ago - LOL!

    Hugs!

    Love Snapsy
    :)
     
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  20. Lord Midas

    Lord Midas Type 1 · Well-Known Member

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    I just came up with a metaphor:
    Could be like the Terminator. It absolutely will not stop until you are dead. And you are Sarah Connah, constantly monitoring your blood sugars (before you eat, after you eat, before bed, when you wake up, before you drive or even before leaving the house for any length of time, etc etc) to ensure you are in the sweet spot. Staying in the sweet spot allows you to avoid the Terminator. Bloody Arnie.
     
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