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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. Bertyboy

    Bertyboy Type 1 · Well-Known Member

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    There must be a rich vein of diabetes jokes?
     
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  2. Bertyboy

    Bertyboy Type 1 · Well-Known Member

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    My colleagues are genuinely curious and helpful.
    The only time I think it was even a small issue was about two months ago when I obviously had a dull lancet (set too deep). When I did my test just before lunch and gave my finger a good squeeze, I sent a jet of blood over my shoulder and along my colleague's desk. I cleared it up.
     
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  3. Moosh97

    Moosh97 Type 1 · Active Member

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    I’ve been a type one diabetic for 17 years (i was diagnosed at 3), and I found it hard living with type one diabetes. I never hid it from people if they wanted to know I’d tell them, I was recently in KFC and a young girl was sitting in front of me and she was acting nervous and she kept her hands under the table. I soon realised that she was diabetic and I think she was uncomfortable with what others should have thought about her, I soon reached into my bag and with full confidence checked my glucose levels and even did my injection in a full restaurant. She see that I also being a diabetic had to do the same things as her and she felt more confident to lift her injection up and inject herself it made me feel so good to show that I was once like this young girl and I’m glad she didn’t have to feel so shy and nervous about doing something that is gonna save our lives. I love helping people and also explaining to young and curious children what I have to do to “make me feel better”
     
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  4. donnieboy

    donnieboy Prefer not to say · Member

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    My grandfather had diabetes and, at that time, sharpened and sterilized (boiled) his own syringes, relied on animal insulin and lived until 80. I never knew he was a diabetic. It never came up, almost like he was embarrassed.
    I discovered the fun of diabetes in my mid-30s and for the past 30+ years have experienced the intensities of this malady. The extreme low blood sugars (shaking, sweating, rapid heartbeat, confusion, weakness, paramedic rescue) to the extreme highs (tiredness, vomiting, coma). What great fun! But I am not embarrassed. It happens that my sister died from Multiple Sclerosis which cannot be managed but can only be endured. Of the two, I am quite fortunate.

    I travel weekly for my work and do make it a point to advise my colleagues of my situation. Just in case I need help. I work with a man who has a pacemaker. I am quite fortunate.

    I recall my son's hockey teammate Drew who was diagnosed a T1 when 9 or 10 years old. Having to go through adolescence with such a burden would be highly problematic, dangerous, and frustrating. I did not have to do this. I am quite fortunate.

    But diabetes is no friend to me. I will do my best to adapt and with vigilance should manage to see my grandchildren grow into wonderful humans. I am quite fortunate.
     
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  5. himtoo

    himtoo Type 1 · Well-Known Member
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    that is such an amazing post -- thank you for sharing this.
     
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  6. nessals946

    nessals946 Type 1 · Well-Known Member

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    Ive always had a chip on my shoulder about having diabetes,i was diagnosed at 6 years old in 1975 and was the only child in a very small primary school with t1d.
    I was an oddity to my peers and endured years of bullying and teasing because of it.
    My parents took me out of that school and i continued my education elsewhere.There was one boy who tormented me about it but it was short lived once the headnaster found out.
    By this time it was ingrained in me to be embaressed and secretive about having diabetes and although to a lesser degree, 43 years later i still feel the same.
     
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  7. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    What a star!
     
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  8. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Better contact Spike Milligan!
     
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  9. Bridie9408

    Bridie9408 · Well-Known Member

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    Hi I'm type 1diabetic have been for 31 years and I still go to toilets r the car to injec when I am out. I guess it is embarrassment r I think people might think l am on drugs.
     
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  10. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Hi @Bridie9408 I completely understand your views. I enclose the following excerpt from the book I'm holding, which shows exactly why toilets are not always foolproof and why a basic vocabulary (certainly being able to say "I am diabetic") in whatever language they speak is essential!

    1978 I went Interrailing round Europe with Jonty Ward, a great friend from school. We stayed with some of his relatives in northwest Paris for three days and then progressed towards Florence. By the time the train had reached Novara I was not very well and we decided to leave the train and look for somewhere for me to do my injection, in relative privacy and hygiene. We found nothing useful. Later on we looked at the Michelin Guide in which the first entry stated “Novara is a grim town.” We proceeded to Milan Central. As expected, the station was enormous and we had little difficulty spotting the signs for “Gabinetti” (WC). Unfortunately these were all holes in the concrete with squatting slabs. Nothing would make me inject myself in there. We therefore crossed the street and headed towards a brand new Al Italia office. Jonty sat with the back packs against a bus stop, while I ventured inside a very plush office, hoping to spot the magic sign. They were downstairs, which meant passing the reception desk. Once downstairs I was able to wash my hands and find the first proper lavatory in Italy. Wouldn’t the Romans be proud? This meant that I had somewhere I could sit behind a locked door. Having injected myself in the thigh, the fact that somebody in heavy shoes had been constantly pacing backwards and forwards outside my cubicle suddenly took on an alarming significance, so I pretended to be in there for legitimate reasons. He tried the door handle. I sweated. After a few minutes I realised the futility of my acting and decided to brave it. A tall man in a very smart braided uniform allowed me to wash my hands and then walked slowly ahead of me towards the stairs. On the way up, he spun on his heel and curtly demanded “Documenti.” I handed him my brand new passport, which aroused suspicion. He snatched my syringe case, which was of the old type, with a double ended spirit-filled tube inside an aluminium box. He opened this and started to unscrew the tube. In the best English that flooded into my racing head, I advised “I shouldn’t do that if I were you.” Spirit sprang over his wrist and for some reason he took exception to this. He had found what he wanted and pulled me up to the reception, where two other men were seated. Their conversation reminded me of a million starlings. Eventually I uttered the only words of Italian which I knew (probably in a laughable accent) “Sono diabetico.” Blank stares. Help! Should I try French? “Je suis diabetique et en regime d’insuline.” Suddenly the smallest of the three brilliantly deduced “Ah, e diabetico.” I could have kissed him and happily shot the other two.
    Congratulations on achieving 31 years. I hope modern research is greatly to your advantage.
     
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    #290 Grant_Vicat, May 7, 2018 at 1:31 PM
    Last edited: May 8, 2018
  11. Oblomov

    Oblomov · Member

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    I find that no one other than other T1 diabetics understand what its like. Even some of those dont. Maybe because their diabetes is easier to manage? Mine certainly is not, it is very brittle and im quite an emotional diabetic.

    I like other posters have been told to ease up, that I'm overthinking things.

    I'm a mother of two, I've been diabetic for over 40 years since, since birth and I hold down a part-time job and I spend half my life like other mothers balancing two boys - playing football part-time job, mufti days, parents evening etc.

    as soon as I wake up in the morning my first thoughts before I even open my eyes are: Am I low; did I go hypo in the night;has my husband already gone to work - am I in charge of the boys; am I walking my youngest to school or driving - ie do I need less carbs or more carbs- etc.

    and I make those kind of decisions many many times per day.

    Risk analysis.

    I'm told by my Diabetic Team that I'm over-thinking things - That I need cbt. I find that offensive. Surely many diabetics go through these thought processes.

    I can see others have posted that they do.

    Would appreciate responses / replies to that specifically.
     
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  12. a.mcintosh8276

    a.mcintosh8276 Type 1 · Newbie

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    I don't think you're over thinking things...... think your being practical. It is hard to juggle daily life on top of diabetes. Diabetes causes so much problems mentally and physically if you are not able to control it. in the past i have suffered depression and anxiety and have major complicationds now but I wont let diabetes beat me. Keep your chin up and don't let diabetes control your life! You take control of the diabetes.
     
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  13. viv k

    viv k Type 1 · Well-Known Member

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    I don't think you are "over-thinking" things either.
    IF your diabetic team were actually T1 themselves,then they would understand that we have to think about SO many things related to our BG levels, carb intake, activities we are about to undertake, over and over every single day. The diabetic team probably get to go home and not think about diabetes until they are back at work. We don't have that option, it's always there.
    I've only been T1 for 3 years, lucky to get it over 50. Well done to you for managing it for 40 years. You deserve a medal, not cbt!
     
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  14. MagicFirefly

    MagicFirefly Type 1 · Well-Known Member

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    I have always just got on with it. Struggled and gotten through highs and lows – quite literally and although my family have been supportive, there was something lonely about it. They didn’t know what it was like to wake up in the middle of the night, sweating and feeling the dire need for something sweet but not really being able to comprehend how I was going to do that when my body did not seem to want to move the way it should. They didn’t understand the bitter tiredness after spending the day with an undying thirst, constantly running back and forth to urinate and administering injections that did not seem to be working. But they did offer words of encouragement, ran to get Lucozade when I needed it and my dear mother who was always willing to spend the night in accident and emergency when I was too sick to stay at home any more. Despite having a friend who also has type 1 diabetes, we never really talked about the nitty gritty of being a slave to finger pricks and injections. We were both children when diagnosed and in our early 20’s by the time we met properly.

    Previously, I have held issue with online forums and chat rooms. Previous experience has shown me that there are far too many judgemental people out there. However, I have recently joined some Facebook pages, one just for women with type 1 diabetes, one local page, one local specifically for those using insulin pumps and one for type 1 diabetes in general, including parents or carers of someone with type 1 and now here, despite signing up 3 years ago, I tend to dip in and out. I find myself reading posts with interest regarding all sorts of things. Some asking for advice, others offering advice, some just wanting to vent their frustration about how unfair diabetes is. I even found myself writing a post or two of my own, particularly when I was really fed up and wanted to share with someone who would just understand without me having to explain anything.

    I have always been the ‘sick’ one of the family. Before my diagnosis, I suffered with many chest, kidney or ear infections which had me at the doctors more often than I cared for. And then I was diagnosed, placed under the care of the endocrinologist team. In addition, I have also been under the care of gastro, orthopaedics, ophthalmology, dermatology, cardiology and immunology. This has resulted in cumulative hours sat in hospital waiting rooms, x-rays, scans and other investigations. How related to the diabetes each of these are, I do not know. Some are ongoing. Sometimes it’s not just the diabetes, but everything it affects. Being told, ‘It’s your diabetes’, like it’s some kind of explain all. Having some patronising ophthalmologist tell me, ‘You have to keep your sugar under control’ like I wasn’t already aware of that and after I told him my HbA1c has been on a downward trend (which personally I’m pretty pleased about).

    I am 34 and had more hospital admissions than some in their 70’s or 80’s. Admittedly less so in the last 8years due largely to the amazing little pump as my external pancreas. Trying to explain to someone that diabetes effects everything, that sometimes you’re just too tired to go out, that you get frustrated that you’re at more risk of things like frozen shoulder or trigger finger. But it’s not even the ignorant people who just don’t understand and think you’re being a drama queen who are the worst. The worst is the judgemental people. The ones who give you disapproving looks whilst you’re eating your lunch. The ones who make comments about losing limbs because you had a little chocolate whilst running around on your feet on a ward hotter than Spain in the height of summer for 12.5 hours.

    We battle ignorance, exhaustion, frustration, judgement, despair and pain from testing and injecting. Yet we live for the triumphs of getting a good reading after bolusing for a meal, waking up with a reading that puts you in a good mood for the rest of the day, because lets face it, anything too low or too high can result in headaches, tiredness, grumpiness, and general feelings of deflation.

    We didn’t ask for this. We didn’t do something that we knew would cause this. Our pancreas just stopped working properly.
     
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  15. MagicFirefly

    MagicFirefly Type 1 · Well-Known Member

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    I find myself in an extremely lucky position of having a consultant who does seem to just get it. I don't know if he has t1, but if he doesn't, I applaud him all the more. I don't feel like I have to explain too much to him, because he understood already. And not just nodded like he thought he did but he explained to me what he thought was right and he was dead on. I actually love him. Best doctor ever!
     
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  16. nessals946

    nessals946 Type 1 · Well-Known Member

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    This post is so spot on,i think you have a great view and understanding of this ****** thing we live with.I have one friend with diabetes but we dont see/speak too often and i always feel like the odd one out with everyone else.
    I was diagnosed at age 6 in the days where technology was non existent.Im rambling now but just wanted to say i loved your post x
     
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  17. MagicFirefly

    MagicFirefly Type 1 · Well-Known Member

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    Thank you. I was diagnosed in 1994. Insulin pumps were heard of but rare due to the expense and not being available on the wonderful NHS.
     
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  18. nessals946

    nessals946 Type 1 · Well-Known Member

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    I was diagnosed in 1976,think dinosaurs were still around
     
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  19. Pocketfullofroses

    Pocketfullofroses Type 1 · Newbie

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    I used to hate it when people would stare. But my mom says "let them stare till their eyeballs fall out"
    I discovered most people are just curious. If thwyre staring because they dont like it, oh well. This is how I live. (Shrug emoji)
     
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  20. SueJB

    SueJB Type 1 · Well-Known Member

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    @Oblomov You are a magic person and are doing grand. I've been T1 for less than a year and think just being me is hard but you handling family life is truly awesome. Take a bow!!
     
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