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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. debz48

    debz48 Type 1 · Member

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    PLEASE I REALLY NEED SOME HELP

    Hello Snapsy. Im a first time poster, and I have just read your post. I know exactly what you mean, due to the fact I feel the same way you do.
    I am a 48 year old woman, who has had type 1 for over 47 years now. I was 11 and a half months old when I was diagnosed, so I have known no other way to live my life. Constantly test my blood levels, working out the carbs and insulin doses. In my later teens I rebelled against my diabetes majorly (when I was younger, my parents were told that "this would happen. No ifs or buts").
    I have since then become resilliant to insulin and find it particularly difficult to control.
    It was eight years ago put onto the pump, to see if this would help get my diabetes into better control. Unfortunately it has not. I dont know where to turn or what to do. I am at the moment so depressed with it I dont really want to go on. Im constanly stressed with these feelings. My diabeties team have no idea how to advise me. They do genually seem very concerned at this, as they have never seen me so down. I used to always have a smile on my face and very happy with everyþhing. Im only posting on the forum now, as I really do not know where to turn for hèlp and advice. If any one can suggest anything, please replý. I also have numerous oth health issues that are also contributing to the




    PLEASE I REALLY NEED SOME HELP

    Hello Snapsy. Im a first time poster, and I have just read your post. I know exactly what you mean, due to the fact I feel the same way you do.
    I am a 48 year old woman, who has had type 1 for over 47 years now. I was 11 and a half months old when I was diagnosed, so I have known no other way to live my life. Constantly test my blood levels, working out the carbs and insulin doses. In my later teens I rebelled against my diabetes majorly (when I was younger, my parents were told that "this would happen. No ifs or buts").
    I have since then become resilliant to insulin and find it particularly difficult to control.
    It was eight years ago put onto the pump, to see if this would help get my diabetes into better control. Unfortunately it has not. I dont know where to turn or what to do. I am at the moment so depressed with it I dont really want to go on. Im constanly stressed with these feelings. My diabeties team have no idea how to advise me. They do genually seem very concerned at this, as they have never seen me so down. I used to always have a smile on my face and very happy with everyþhing. Im only posting on the forum now, as I really do not know where to turn for hèlp and advice. If any one can suggest anything, please replý. I also have numerous oth health issues that are also contributing to the way I am feeling lately.
    Please any body I would really appriciate some help and advice.
    Thank you in advance.

    Sent from my SM-A500FU using Diabetes.co.uk Forum mobile app.
     
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    #21 debz48, Jun 30, 2016 at 7:34 PM
    Last edited by a moderator: Jun 30, 2016
  2. Snapsy

    Snapsy Type 1 · Well-Known Member

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    Hi @debznorgate and welcome to the forum. I'm so glad I found this place, as there is so much support - and heaps of real-life information and inspiration - right here.

    I'm so sorry to hear that it's getting you down to such an extent. I'm glad that your team are aware of it, because that I hope means they will be able to offer you more support, perhaps with more frequent appointments, or a recommendation to go along and meet some other type 1s at a local support group, or point you in the direction of additional support.

    I've been seeing a counsellor for the last few years, on and off, and she's been a big part of this massive pump journey of mine. She's with her weight in gold, and although it is quite expensive, those appointments are so worth it.

    Take each day at a time. Celebrate the triumphs and the smiles, and they will dilute some of the not-so-nice stuff.

    Hugs.

    :)
     
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    #22 Snapsy, Jun 30, 2016 at 8:07 PM
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  3. richyb

    richyb Type 1 · Well-Known Member

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    thanks for all the advice. I have contacted input and they made some suggestions, but have not yet had any luck. I saw my normal nurse at doctors last week for an annual review. Afraid i broke down in her presence. I showed her my injection sites and she said that i was running out of room. She was very concerned but could do nothing. Also spoke to a dietician on a DAFNE update last week and she thought i was a special case. 5 months ago my DSN thought i should have one, but was refused by consultant. I did not meet the criteria. According to INPUT he should have supplied a letter stating why. But he did not. He probably too busy to bother with me, pity though as i contribute to his wages and have worked all my life. I have complained to quality care commision but got nowhere yet. Lets face it at 63 how many pumps would i use. consultant not seen me, I would tell him what i think of him.
     
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  4. Tanny35

    Tanny35 Type 1 · Well-Known Member

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    If I said I found living with the dreaded D easy I would be lying.
    I have had it since I was 5 - and don't remember not being a diabetic. (Now 35).
    I went through my teens not really caring and thinking 'it won't happen to me' I wanted to live a normal life like my friends and family did. I missed appointments for my DN I didn't really care.
    Then I had my children. And realised I needed to try my best to control it. Being a single mum of two for many years until I met the lovely Steven was hard to balance work/family and trying to control the diabetes on top of it all. I tried so hard, I had spikes I had lows I felt like I was failing and fell in to depression over it all. But still trying so hard to control it all. And no one else could understand my frustrations. I get sick of injecting, I get sick of bg testing everyday 10/15 times a day and not getting the results I want. I get one day of amazing results and feel on top of the world and like this is easy to control, if I do what I did today the. Tomorrow will be the same - but no, I do the same routine eat the same foods and then 2 or 3 of not so good results. And I think to myself I don't get it? I ask my self all of the time what am I doing wrong, my DN nurse tells me I'm not doing anything wrong but lots of things can affect control. Stress, emotion, hormones and lots more.
    Recently, I have hit some complications. I wonder if I had tried harder in my teens would I still have these complications. I sometimes blame myself for everything going wrong right now - but then I sit back and tell myself, it's not an easy condition to live with at all. We all try our best to control it the best we can. And joining this forum has helped me so much, I have learnt I am not the only person that has trouble with erratic BGs, I have realised I'm not the only one that has struggled on a daily basis to get tight control, I have learnt a lot on better ways to get tighter control. I have learnt We all get tempted by that big fat chocolate cake sat there staring us in the face, and we all give in to temptation from time to time.
    I have sat and cried at times over the daily struggles of being a T1. But I Jane my meltdown, I then stand tall and brush myself down and tell myself - if I wasn't a D - I wouldn't have met some of the lovely people I have met because of it. I get scared about what the future holds for me and what complications I face in the future. But anyone that lives with diabetes is a true warrior, every single one of us - there is nothing thrown at us that we can't handle or don't somehow manage to get through.


    Sent from my iPhone using DCUK Forum mobile app
     
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  5. Snapsy

    Snapsy Type 1 · Well-Known Member

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    @richyb can you ask to see the consultant specifically, perhaps with the DSN at the same time? It doesn't sound as if he's being at all supportive, especially as he hasn't met you. It sounds so frustrating.
     
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  6. Tanny35

    Tanny35 Type 1 · Well-Known Member

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    And as I was writing that I was having a hypo lol apologies if it's a garbage


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  7. TJR56

    TJR56 Type 1 · Well-Known Member

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    Yes, it can be hard, but I also agree that we REALLY value the good times. Good on you.
     
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  8. TJR56

    TJR56 Type 1 · Well-Known Member

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    * Blessings. I too have trodden a hard path from the days of red and black lines, weighing food, metal and glass syringes kept in surgical spirit and boiled once week.. I went to Reading Festival when I was seventeen and people in the Red Cross tent where I went to rinse my syringe and inject were suspicious....

    The insulin pen and bolus with long-lasting insulin regime and (breakthrough!) blood testing meant freedom from eating at set times, test tubes and fizzy pills to test your urine (highly approximate as it was an average over the last however-long-since -you last-peed). Diagnosed November 1958 after going into a coma, oxygen tent, last rights at the age of two, I worked hard to manage my condition once I was old enough - 9 to 10 years old. I envy anyone on a pump and blood glucose reader, as diabetes has had to be in the background of my mind all my adult life. Bless my mum (God rest her) for looking after me so well early on. I had a teenage denial, but came round after the said pen/blood testing meant control was more flexible. My only problem has been arterial disease, particularly blood supply to my legs, but then I smoked for some years. (Risks not so well known or understood then.) Brilliant NHS treatment for this. I am also highly gluten intolerant now - brother and sister both T1 and both coeliac.

    What am I saying? Some of us, with the same self-care, may be genetically luckier than others. I am relatively lucky, though with 63% blood supply, after surgery, to my legs, I don't walk so far these days. Age 60, I still work three days a week, and I still have to keep testing my blood, calculating by eye or experience the number of units I should take at a meal. It's always there, and it's always highly experienced guess-work. (Does sex bring your blood glucose down? Exercise does!) A certain spontaneity is sometimes missing, but in my case, I deal with expected things with a suitable dose of insulin or unexpected things slightly retrospectively with minor adjustments to insulin levels or some glucose tablets. As experience of yourself and how your body and diabetes tick along in tandem grows, maybe you just grow accustomed. It can always throw up nasty surprises - an infection, cold, flu, operation - and yes, it's more difficult when you have to give over your control to someone else, and it can be scary. But mostly, for me, I am now still enjoying life, 57 years diabetic T1 and still getting better at playing this game of diabetes management. I don't think we know all the rules or have been given all the counters yet, but goodness me, we're better off than we were.

    Good luck and best wishes to you.
     
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  9. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Reading this has brought tears to my eyes, I concur with everything you have said X
    I keep looking at the thread and try to think positively, which I do most of the time, but there have been times lately, when I could of taken all of my medication, other auto immune conditions and stepped of the world and not looked back. But for the grace of god, the love I have for my teenager and not to leave her an orphan, I thank god I kept going. It's a bloody hard battle at times, the endless testing, injecting, hi's and low's and in sickness and in health, we manage to come out the other side, hopefully stronger and still with that fighting spirit. to have another 20, 30, 40 years or more to live life at it's fullest.
     
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  10. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    [​IMG] X
     
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  11. isjoberg

    isjoberg Type 1 · Well-Known Member

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    Just a quick overview of my day today:
    Woke up feeling awful and really tired, snoozed my alarm. When I got out of bed my bg was sky high (hypo last night)
    Took my long acting and some short acting then had a carb free breakfast.
    Walked into town and did some window shopping, walked back feeling a bit off - bg was dropping fast. Texted my friend to meet for lunch and did a short exercise circuit in my room. Went for lunch, only ate vegetables, gave a small dose, started work, had a cup of tea and a sandwich plus more insulin..

    Insulin food insulin food why do I feel weird answer is either insulin or food. That's basically it!

    I work in a supervisory role, which means when I'm on shift I'm in charge and cannot leave the room. What this means is everyone who works with me is well acquainted with my diabetes as sometimes I'll need to inject and then deal with a problem quickly, or get someone to run out and get me a snack. It's weird because it feels perfectly normal but also very surreal to be diabetic when you sit back and think about it. Everything is so linked to what you do and where you are and how you feel but also vice versa
     
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  12. TJR56

    TJR56 Type 1 · Well-Known Member

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    * Oh, Snapsy, soulmates! Love your post. Try a blog - loads of free bog-sites now. You express our dilemma well.
     
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  13. TJR56

    TJR56 Type 1 · Well-Known Member

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    * Tanny, been there, done that. Not much comfort, is it? But there is a way to make it easier, and it takes a bit of time. (It took me a lot of time!!) Firstly calculate the extra insulin you need for that size or sliver of cake, by experience or investigation, Try the Diabetes uk website for this, or a search engine. Look at pictures and descriptions of plates and recommended portion /proportions or sizes/weights. Sounds tough, and I didn't get round to it for years of being T1 - I guess about age 22 having been T1 since 2 years old but with brilliant control from my mum till I took over in teenage years ('nuff said!).Tell you what, it's a total learning curve all the way, and I'm still learning now, 57 years T1 and going (fairly) strong! We do not need to be warriors, as we are winners who play the game and learn the rules and take the bonus counters whenever they can be ours
     
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  14. prancer53

    prancer53 Type 1 · Well-Known Member

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    I have had diabetes since the age of 8 which totals 57 years. I did the wee testing and glass and metal syringe bit and felt eternally grateful when blood testing and multiple injections became the norm because life became so much easier. I tend to always eat the same amount of cho for meals because it works better for me. I plan my days around diabetic requirements and usually find I can manage ok. Frankly I can't imagine life any other way now--if I was cured tomorrow I would still eat the same cho at mealtimes (maybe I'm kidding myself)!! I have always done what I wanted to do and never considered that I was unable to do anything because of diabetes. In short it has never stood in my way. When I was a child my mother sent me to ballet lessons "to keep the sugar down". I loved dancing and at the age of 16 auditioned for a London ballet school, was accepted and given a full grant by my local authority. For 3 years I did classes all day, every day, each 90 minutes long. I found I needed to cut my insulin dosage down dramatically whilst eating a lot more cho. At 19 I joined for the Italian Operetta Company and stayed there, as a dancer, for 2 years. I was offered a 3rd year in the company which I accepted but on a visit home I decided not to return. I then worked as a dancer and taught dancing. I married but we had only been married for 6 1/2 years when my husband had an accident and broke his neck after which he was in Stoke Mandeville hospital for 6 months. I used to stay away from home for work but after his accident I needed to drive many miles every day instead, as he couldn't be left on his own, as well as look after him. The life and daily management of tetraplegia is exceedingly complex and time consuming and there never seemed enough hours in the day. I used to worry about what an earth would happen if I had a nocturnal hypo because my husband was no longer able to get out of bed (I had to lift him into his wheelchair from bed and back from wheelchair to bed and also into my car) to get me some sugar. I often used to eat more than I needed before bed because it was the only thing I could do to ensure I didn't go hypo overnight). He did go back to work though and we both were working full time until I had children,, 7 years after his accident which is when I gave up work. I had the usual hypo problems with pregnancy and can remember getting home one night after a long drive and falling asleep. It turned out I was hypo so my husband rang the doctor (no paramedics then) but realised that because I was unconscious I wouldn't be able to answer the door to the doctor so hubby had to ring a neighbour and ask if he could pick my mother in law and deliver her to ours because she had a key so could let herself in and then let the doctor in!! No one had explained about the types of hypos that would occur in pregnancy and the doctor had told me to put my insulin up by a large amount. After that I always put my own insulin up throughout both pregnancies and devised a method of doing so which was safe for me but also kept my HBA1C at between 4 and 4.5. My first baby was born naturally weighing in at 7lbs and the 2nd (also without any intervention) was 6lbs 7 ozs which I was very pleased about because I was told I would have big babies!! I didn't return to work because it would have meant getting someone to look after my husband and a nanny for the 2 children. However when both children were at senior school, and I was 47, I went to University to study for a degree in Dance which was both very physical as well as academic.Three years later I graduated with an upper second class Batchelor of Arts degree. During my last year at Uni I auditioned at the Royal Academy of Dance in London to do a post graduate teaching course which would give me Qualified Teacher Status to teach up to GCSE and A level dance. I was accepted which meant daily train journeys into London and 3 placements at schools and colleges. I qualified at the end of that and have worked as a teacher ever since. Since my husband now employs his own carers I am also able to work on cruise ships during the school holidays providing activities for 8-12 year olds and teenagers (profile picture was taken in the Canaries during one of the cruises). This is also very physically active role with various sports and dance most days. Work starts between 9 & 10 am and finishes between 10pm & midnight. Husband has now retired, A few years ago he had an operation which gave him use of his hands once more so he cooks for me (he absolutely loves cooking) so I have a hot meal when I get home from work which he has prepared. My days are always well planned with regard to diabetes and I always take my own food to work so I always know exactly how much cho I am consuming. Like others I do get angry when BMs are not what they should be and make me feel like s**t but I just take corrective action and carry on. I have gone back onto pork insulin which works better for me (I found human insulin manufactured in lab was not giving me definitive hypo symptoms). After the birth of my second child I also became hypo thyroxic so take levothyroxine daily-- I do find that that can muck diabetes balance up somewhat. Life is not simple, no one seems to understand the vaguaries of diabetes management. I am so old now that GP thinks I am type 2 and tells me that if I eat sweet things my body will produce more insulin and I will become hypo--never quite know what I should say to that so just inwardly smile!!!! Have a morbid fear of doctors so try to see them as little as possible and absolutely hate diabetes check ups......but am compliant!! I tell people I have diabetes, when I get to know them or if D. comes up in conversation but they always seem to forget..........!!!!!!
     
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    #34 prancer53, Jul 1, 2016 at 1:00 AM
    Last edited: Feb 16, 2018
  15. prancer53

    prancer53 Type 1 · Well-Known Member

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    .....Re lifting my husband--when he was in Stoke Mandeville we were put into a mobile home, at the hospital, for 2/3 weekends towards the end of his stay, this was to see how we managed with all the care aspects. One morning while I was getting him ready I began to feel hypo but I was in the middle of lifting him from bed to wheelchair when I realised. He had a very strong muscle spasm when I lifted him (this happens) and knocked me over onto the floor but he came crashing down on top of me. I needed help to get him into the wheelchair from the floor but couldn't move because he had fallen on top of me and he was unable to move at all because of the spinal cord injury. My blood sugar was rapidly decreasing and I could envision the 2 of us lying on the floor all weekend with me in a state of deep unconsiousness.....Then the phone went but because I was pinned to the floor, and couldn't extricate myself from under hubby, I was unable to answer it!! Phone rang off but about half an hour later and after another unanswered call 3 burly male care attendants came into the mobile home to see how the care was going and if we were ok. They lifted hubby into the wheelchair while I got straight up and ate quick acting carbs--carers thought I was very strange because I was pushing sweets into my mouth, rather than carrying on with care tasks, so I got a few strange looks from them.....!!! Can't remember whether I told them I was diabetic!!!!
     
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  16. cathat23

    cathat23 · Member

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  17. cathat23

    cathat23 · Member

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    You are both amazing people and an example to others X
     
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  18. cathat23

    cathat23 · Member

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    Fantastic to read something cheerful and positive . Thankyou. C x
     
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  19. prancer53

    prancer53 Type 1 · Well-Known Member

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    Thank you...!!
     
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  20. AmandaD

    AmandaD Type 1 · Well-Known Member

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    For me I can't remember the time before I was diabetic. Its a life of numbers and insulin and injections and remembering pump batteries and little holes and scars from infusion sets, of knowing far more about the nutritional content of my food and the effect it has on me than most of my peers. Its the joy of finding out sugar free jelly can be eaten freely (I lovvvvve jelly) and have no effect to the despair of finding out carbs are not my friend. Its there all the time and won't ever go away BUT its only diabetes, I can live my life and get on with it, many with terminal diagnoses for something would wish for diabetes. The relief in my parents faces at my diagnosis is something I will never forget as they thought I had leukaemia. Its a pain in the a**e and I hate it but hey all the cool kids are diabetic and I think I'm in a pretty good club.
     
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