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11 years Type One Diabetic and worst experience ever

Discussion in 'Emotional and Mental Health' started by banana2000, Jun 11, 2019.

  1. banana2000

    banana2000 Type 1 · Active Member

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    I have been type one diabetic since I was 7 years old and from a young age I dealt with my TD1 maturely and never caused a fuss, my parents were very lucky! I would compare living with T1D to a rollercoaster ride as it has its ups and downs with a fair share of surprises. Of course, I am not the "perfect" diabetic with good blood sugars all year round, I try my best and sometimes I believe that I try too hard. In primary school, I was the only diabetic child in the whole school and I was faced with discrimination such as parents passing remarks about me being allowed to drink Coca-Cola when my blood sugar dropped and classmates complaining about me being allowed out to the toilet when I needed it. Secondary school was better as the school I attended provided me with great support for my Diabetes and I really enjoyed my five years at the school. I did have a hard time adjusting to hormones because when menstruation started I didn't have much knowledge about how it affected blood sugar levels and that definitely was the craziest rollercoaster ride ever! However, the two years that I attended a different school to complete my A-Levels was by far the worst diabetic experience ever. I have finished my exams by which I am relieved but part of me is reflecting on just how difficult those two years were. I was extremely unhappy at this school, I didn't have friends to talk to. A typical school day for me was to put my head down and get on with it. I do believe that I had what I now know as Diabetes Distress. Every single school day my blood sugars were high and my mouth always felt like the Sahara desert. This school did not offer good support, I injected myself in the toilets and the school nurse was a horrible woman. I couldn't believe the difference between the schools. During my time at this school, my mental health was up and down. I was sent to see the school councillor who was very nice but I thought that coming from another school and attending counselling, people might have gotten a bad impression from me. I think what is happening to me at the moment is that I can't believe that I stuck that school for two years but the experience has certainly knocked my confidence in living with T1D. I am considering attending counselling as it might help me get things off my chest. I am open to other ideas if anyone has any.
     
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  2. urbanracer

    urbanracer Type 1 · Moderator
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    Hi Banana 2000,

    Just a thought, the people over in the blue corner do have information about diabetes support groups.....
    https://www.diabetes.org.uk/
    ... you might be lucky enough to find a group in your area and it would save the cost of counselling !

    Sadly, your story isn't unfamiliar in these forums but can I ask, with school years now behind you, what aspect do you feel you are struggling with now. Is it diabetes management? Is it being accepted by others? Are you off to Uni' soon?
     
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  3. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    I think it can be quite isolating to live with t1d when a teen and not just because of the hormonal issues you mentioned but on an emotional level you are dealing with learning how to live independently as well as a chronic health condition. If you do the diabetes badly then it impacts upon your mental and physical health and ability to cope with life's dramas e.g. being in a school where you have no mates and a less supportive staff. The opposite of this is true i.e. the afore-mentioned emotional stress affects all the things that make diabetes harder e.g. poor eating patterns, failure to test/dose insulin correctly.
    I don't know what you are doing post school/college but I expect there will be situations like this again as you are deemed to be an adult and help will not be automatically offered. Having someone you can talk this through with would be great for you if only to frame it in your head appropriately before you embark upon a next life stage. I got access to a psychologist via my diabetes clinic when I was university because it was recognised that my emotional state was having an impact on my diabetic health and vice versa. Having said that, I don't think professional counselling is any better than having someone you know who cares about you and in whom you trust, discuss these things with you and I really hope you still have old friends like that around?
    I think we can all relate to the diabetes distress btw and don't underestimate what you are coping with but do be proud of yourself by getting through this stage of your education. You sound determined to draw a line under this one and move forward and have the maturity to know that you need a bit of help to do this successfully. I hope you get what you need and best of luck with the next stage.
     
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  4. banana2000

    banana2000 Type 1 · Active Member

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    Thanks for your reply, I am hoping to attend University in September and I believe that my biggest fear about going is my health and how others will accept me. I don't want my T1D to stop me, however, I do think that sometimes I can be too cautious rather than diving in to something new. Thanks for the information about the support groups, I must look into it.
     
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  5. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @banana2000, welcome to this site and to the club that no-one really wishes to join.
    I was 13 years when diagnosed, 52 years ago, here in Australia.
    As you might imagine diabetes management was sort of in the Stone Age then compared to nowadays.
    Yes, secondary school was pretty dreadful with the teasing and teachers not understanding that i sometimes had to eat in class.
    Being on only one injection per day and later two per day meant i did not have the hassle of thecloo being an injection room but the discrimination was there in other ways such as monitors trying to stop neveating lunch as a punishment for some invented infraction.
    The scars from those days remain but as you did, it was a matter of sticking out the unpleasantness, having one or two people who understood a bit because they had fathers who were doctors. And doing my best with all thevsubjects and sports.
    I can relate to the feeling if lonliness and felling different, and having to wear those things like a badge.
    But these days you may be able to find other TIDs in you area on say facebook or maybe through your health team or Diabetes UK. Having diabuddies who know what it is like, who you can share things with may help.
    I am not suggesting that they would necessarily replace counselling but it is like being in a boat knowing there are others there as well. You sail through the storms as best you can, try not to become so independent- minded and stubborn that you forget or shun offered help and try to keep self-esteem and self-respect afloat.
    Having support includes the use of humour to help through rough patches. Sometimes that humour can be a bit dark, but whatever works and whatever a diabuudy or three might say to you, or you to them.
    I used to call injection time javelin practice. I heard that a husband and son used to bet on what their diabetic wife/mother's bsl before dinner would be and the loser woukd do the washing up.
    One time i went at the swimming baths with some friends and drifted into a hypo, and was found trying to put an imaginary token into the turnstile leading the the ladies change room. Being an Aussue male, that was not the thing to do!¡
    I also found swmming was a good way to keep fit and keep bsls under control, whatever that was before blood glucose meters, pens, fancy insulin, insulin pumps or cgm.
    When bsls are better things tend to feel better. And yes, stress, worry, fear are anathema to good bsls as you know. Exercise heped ease stress and i learned tonadjust my insulin and fiod intake to do that.
    Whilst monthly cycles were not an issue for me, i do recall the growth spurts ir surges, when i coukd feel bsls rising and had to up insulin doses sometimes double or more and stay like that for 2 weeks ir so and then cut doses back quick start as the hypos started, signalling the end of the growth spurt. I also found that i preferred protein like meat and cheese during these growth tomes and that that affected me symptoms ( bsl-wise) less than esating more carbs.
    Little did i know about low carb diets back then and only learned about them through this site about a year ago.. They have been a godsend but thst is another story.
    Developing interests, hobbies is also a way i found to bolster self-esteem and meet others.
    I did sailing and canoeing, learn knots and plaiting ( rope and cord, not hair! Lol
    Some form of interest has helped me through thick and thin ever since.
    This site has also been a godsend in many ways ( and will help me maybe to stop this underlining) !
    Ask whatever you need to and whilst it will nit be health professional advice or opinion, it will be suggestions, support and no matter hiw simple thecquestion maybe, kniw that we have all been there at some point, we have all nade mistakes and tried to learn from them.
    We can suggest ways to stop you perhaps making a mistake, or being less likely to.
    I shall keave it there for niw. Know that you are important, valued and desrerve to live life as happily as you can.
    I woukd not have been as forward- thinking, knowledgeable about my body and mind, as good a doctor which what i became or as mindful of others' rights if i had nit developed diabetes.
    Best Wishes and please keep posting. :):):)

    Nothing is imposible:.....................................'Tis all about balance........Hugs are important, too.

    image.jpeg ..................... image.jpeg ............. image.jpeg ................ image.jpeg

     
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  6. banana2000

    banana2000 Type 1 · Active Member

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    Thanks for the reply, I am hoping to attend university in September and I do have a fear about how my health will be and how others will accept me. I do have a close friend that I talk to about how I am feeling and she is very supportive. My family is very supportive too, my mother really does try to help me as best as she can and I have a good relationship with my sister who can make me laugh at some of the diabetic dilemmas that I experience. I have attended counselling before, however, it was during the hormonal upset that I was experiencing. It only helped me to a certain degree as I felt that the psychologist was providing me with generic advice.
     
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  7. zand

    zand Type 2 · Expert

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    You have been given good advice from others and I have nothimg to add...except...Wow! Be proud of yourself for getting through those horrid years so well and completing your A levels. I am sure that whatever life throws at you at Uni you will cope and indeed flourish. You have been through tough times and are already a winner in my book.
     
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  8. banana2000

    banana2000 Type 1 · Active Member

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  9. banana2000

    banana2000 Type 1 · Active Member

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    Thank you for your reply, it made me smile! :)
     
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  10. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Hi @banana2000 Your post takes me back to my first morning at King's College, London, October 1978, which the following describes:
    I started my first year at the Platanes Hall of Residence in Champion Hill, and I was to find out many years later that my paternal grandmother spent her childhood round the corner in Camberwell Grove and had been christened in St. Giles’s Camberwell. I was somewhat overwhelmed by the fact that I didn’t know a soul since one of the aspects of diabetes is that I have always been anxious about living alone. However there were some remarkable people in the same ghetto of whom a sizeable proportion had attended Northampton Grammar School. This included Iain Lynch and Peter Jones who are still good friends. I met Peter on my first morning at breakfast. Sitting on the outer edge of the refectory, alone at a table that would frighten an agoraphobic, I pondered my ludicrous position. Here was an allegedly intelligent student sitting in a room which could hold hundreds of people and yet the idiot was not engaged in conversation. I made an alarmingly bold decision. I picked up my tray and moved to the centre table, which proved to be full of medics and chemists. One of them was a rugby- playing monument who was clearly puzzled by my arrival. I didn’t feel up to breaking the ice. While sitting there in a zombified condition, I noticed that the man sitting opposite me was wearing a Medic Alert bracelet.
    “Are you diabetic by any chance?”
    “Yeah, what of it?”
    God, I wish I hadn’t just said that.
    “So am I, that’s all.”
    “Oh.”
    Thinking that my communication skills were wanting, I quickly finished eating and took the tray to the disposal. As I left the Refectory a voice sounded behind me:
    “Do you play snooker?”
    “Yes.”
    “Shall we have a game?”
    “Why not?”
    I could not believe my change of fortune. As we went upstairs, Peter was whistling part of a Bach Flute Sonata with extraordinary dexterity, if that is the correct term.
    “Do you play the flute?”
    “Yes, do you?”
    “No, but I recognised the piece you were whistling. I have a recording of Jean-Pierre Rampal playing it.”
    “So do you play anything?”
    “Yes, the piano and the organ”.
    He then told me that he was still learning from Sebastian Bell, of the London Sinfonietta and he also apologised for being abrupt at breakfast. While at school, he was studying Sciences with a view to taking a Medicine Degree at Cambridge. Unfortunately he was taken very ill with newly diagnosed diabetes at the time of his exams and Cambridge kindly said they would look at him the following year. Thus he came to King’s and ever since has referred to The Enemy as “The Old B.....d”.

    I'm a great believer in fate, and I owe my existence today to that event over 40 years ago. I hope you might be inspired to go for it, especially since I think you are far more likely to bump into somebody blessed with a brain and open mind. Good luck!
     
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  11. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    That sounds really positive and good luck in September. I'd imagine you will get access to a more specialist psychologist if you are studying in a big city so don't assume you won't cope too well but perhaps make sue you are set up with a diabetes clinic.
    Btw why would anyone not accept you?! If you think about it most if not all people in that new situation will be worrying about their own acceptability. Just keep reminding yourself you are about 90% tougher just because of what you've survived recently!
     
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  12. urbanracer

    urbanracer Type 1 · Moderator
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    I do understand the social pressures experienced at your age and sadly one often has to be an old git like me before you learn to be comfortable in your own skin.

    I think the only wisdom I can try to impart on you is to try and remember that when you start Uni' the majority of the new undergraduates will all be experiencing their own anxieties and fears, some simply for being away from for the first time.

    You will hopefully find it to be a more inclusive community and I seriously doubt you'll be the only T1 on campus. Start your own club!

    And don't forget us, evidence shows that participation in an online community can be beneficial to diabetes management. Come and join us in the 'Type1 stars are us' thread, have a good old whinge whenever you feel like it.

    Be lucky!
     
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  13. Fruitella

    Fruitella Type 2 · Well-Known Member

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    The uni should be sending you details of likely study and accommodation buddies over the summer. Join these social media groups and you will get a pretty good idea of those you will get on with. The health setup is so much better than college and a million times better than school. You can register with the uni medical team or a local one. As an example a relative started uni last year, had struggled all through school with reading etc. School did not recognise/accept the possibility he was dyslexic. 8 weeks into uni, assesment done and full support set in place. Have a fantastic time.
     
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  14. Brillpaul

    Brillpaul Type 2 · Well-Known Member

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    I was diagnosed with Lada 3 years ago aged 67. I knew precious little about the condition as there was no family history. My reaction was thank goodness it has only occurred now. I take my hat off to you. You must congratulate yourself on your progress so far and follow the advice of others on this forum. Your mental health and attitude are important in dealing with daily obstacles. I admire you and wish you well.
     
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  15. Juicyj

    Juicyj Type 1 · Moderator
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    Great post @banana2000 As others have said Uni is a completely different ball game and there is student support and without a doubt there will be other t1's there too, so hooking up with others will help you connect and feel more supported.

    I tend to take the view that despite whatever life throws at me, it shapes me and my character, life does has it's ups and down, but it's how we face them that counts, so stay positive, talk about your feelings or write them down. My best advice is just to keep your t1 in check as much as you can, when you run high it affects us mentally so the better your control then the easier we can cope with life's ups and downs, and don't be afraid to ask for help when you need it.
     
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  16. banana2000

    banana2000 Type 1 · Active Member

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    Thanks for the information. That's great to hear, I hope he is getting on well at university. I attended an appointment last week with the university where I met a member of the student support team. She was lovely and provided me with helpful information about how to access the service and what adjustments were available to me living with the condition.
     
  17. banana2000

    banana2000 Type 1 · Active Member

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    Thank you, I certainly will keep posting on the forum. I think it is a brilliant tool where I can express how I am feeling without being misunderstood. Thanks again for your words of support.
     
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  18. banana2000

    banana2000 Type 1 · Active Member

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    Thank you for words of support, I wish you well with your LADA management.
     
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  19. Juicyj

    Juicyj Type 1 · Moderator
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    Stick around it's good to speak to others who understand what your feeling and can help support you :)
     
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