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Need a little (or a lot) support.. Type 1 (it's a bit of an essay sorry!)

Discussion in 'Type 1 Diabetes' started by AmyLH, Mar 2, 2016.

  1. AmyLH

    AmyLH Type 1 · Member

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    I've been Type 1 for 4 years last month. Diagnosed @ 15, I'm now 19.
    My blood sugars were OK for the first year or so as I did as I was told, but when I was about 17 I hadn't quite accepted the fact I had diabetes.. All I wanted to do was live a life WITHOUT this burden. I hardly tested and didn't take enough insulin as I couldn't be bothered to deal with the hypo that would come on 5 hours later and have to panic around my friends. This is what I believe threw me off track.
    My blood sugars are way too high, pretty sure my last HBA1C was 11%. Obviously I have some hypos but very rarely, a few a month or something, I'm so frightened of them.
    I'll have these bursts of motivation, I'll go on a diet, less carb more veg, start getting hypos even after changing doses and think **** this. I've called 111 numerous times with hypos as I think I'm going to die.
    I just feel so alone. I only knew 1 person at school who had diabetes and he was so well controlled.
    If you've been through this do you have any tips on how to stay motivated? It's like, I know it will soon become second nature, but I've been going so long as if I don't have diabetes I find it so hard. The worst part about it all is knowing that I could be blind or without my kidneys in 20 years. I'm just so frightened, I'm 20 this year and really need to sort myself out. I've already lost a really good job and friends because I was always sick, depressed and so tired.
    Sigh. :(
     
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  2. MH2010

    MH2010 Type 1 · Well-Known Member

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    @AmyLH I spent years of my life not giving a damn about my diabetes, decided one day enough was enough and it was time to take control of my life instead of letting diabetes control me, just kept saying to myself that I didnt want to die before I was 30 which is the way I was heading.

    There are 6 or 7 type 1 diabetics in my family but I was always the one in denial about it.

    Look up diabetes burnout on here, I will try to find the link for you.

    Dont ever feel alone though. The people on this site have helped me so much and they (& me!!) Will help you.
     
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  3. Loopy88

    Loopy88 Type 1 · Member

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    Your story sounds so familiar to mine. I was diagnosed age 16 (I am now 28) and up until very recently, denied myself of accepting diabetes. I hated knowing that a majority of my day would involve blood testing, injections, carb counting, more testing and corrections. However, unlike you, I knew no one else at all with diabetes. Luckily I have made some internet friends who offer support but I still know no one in my life away from the internet who has Type 1. Yes it is horrible but we all know that things can and WILL improve with some control. You sound like you need some additional support. Do you have a DSN you can talk to? Mine is a diamond. She and I get on so well and she knows me really well. I am very sensitive to insulin so she is always around to talk doses.

    I don't know how to put it not so bluntly but you have to try and accept this. It is a shock when you're told your life will quickly become very different and more difficult but I promise you will feel SO much better when you take control and basically tell your diabetes that YOU are in control. My reality sunk in very recently. January in fact. My Dad found my unconscious. If he hadn't, I'd be dead and I would have left my nearly 5 year old daughter with no Mummy purely because I was being stupid. Since then, my control is a lot better though I still get a lot of hypos, I sleep better, I have more energy, I am drinking less and my appetite is better.

    This forum is also extremely helpful. The members come from all different lives and can offer you a lot of help and support. I do hope you start to feel better soon. *hugs&
     
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  4. Juicyj

    Juicyj Type 1 · Moderator
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    Firstly big hug, it's a huge positive that you want to do something about this.

    Well here you are not alone, there are many who have been and are in your position. Getting this as a teen certainly would of been hard, I was diagnosed at the age of 39 so I was old enough to just get on with it, but I certainly admire all those who encounter diagnosis at an early age.

    Hypo's generally don't have to be debilitating, I am sure you know that if your control is good then it will limit the number of hypos you have and even then you shouldn't be getting bad ones, we all hate them but respect the fact that control is more important than the effect of a bad hypo. Hand in hand with good control is an improvement on your mental health, when you are managing better so will you cope better too, it all really points at getting better. Diabetes shouldn't affect you life so give it a big push and contact your DSN today, tell them how you are feeling, they are there to support you ;)
     
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  5. Daibell

    Daibell LADA · Master

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    Hi and welcome. Can I ask what insulin regime you are on and whether you are carb-counting? I'm sure you will be on Basal/Bolus and carb-counting but occasionally I see T1 posters who aren't and the result can be poor sugar control. I also assume you've done the Basal balance first and then trying to get the Bolus ratio right? I'm lucky and have very stable sugars but I know many struggle.
     
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  6. Rachel_Shay

    Rachel_Shay Type 1 · Member

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    I know EXACTLY how you feel, I cannot tell you how similar our stories are. I didn't start taking care of myself until a couple of days ago after I was told that my eye sight was getting really bad, and I knew it was time to change. You taken the first step and believe me when I say this forum helps a lot, I've meet some amazing people that have helped me realise that you have to look after yourself. No one else can do it for you and you're the only one that will suffer in the end (not to sound horrible). Its not easy but once you start seeing the results and having normal sugar levels you start to feel better within yourself. I don't feel as tired any more, I can concentrate for longer periods of time and my depression isn't effecting my everyday activities, and that's all happened within a week. You cant let anything hold you back, diabetes is a part of you yes, but it doesn't have to be a burden. You'll have good days and bad days but you are the only one that can change things.
     
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  7. AmyLH

    AmyLH Type 1 · Member

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    Thank you all for your replies! I've woken up happy and I'm super motivated right now just need to stick with it and keep thinking about how much better life will be for me. And my future.. Thank you all again, will try come on here as much as I can and talk to you guys :):):)
     
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  8. Top_Barman

    Top_Barman Type 1 · Member

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    Hi AmyLH.

    I was diagnosed Type 1 when I was almost 7, 36 years ago.

    First few years I was well controlled, but when I went to Uni at 18, all control went out the window.

    My HbA1c was regularly in the 90's, and I didn't give a damn about my control, avoided doctors, and basically gave up on myself.

    This all changed 2 years ago when I was diagnosed with a Charcot Arthropathy. While recovering from this (It's fine at the moment) I did a DAFNE course. This gave me a recap on what I should be doing to control my Diabetes, and not let it control me.

    My HbA1c is now around 65, still too high, but coming down nicely. I feel healthier, and feel like I am in control of my life again.

    Joining the forum is a great step, lots of advice on here, but try and get on a DAFNE course, They are great.

    Good Luck,

    Richard
     
  9. mentat

    mentat Type 1 · Well-Known Member

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    My tip on staying motivated--and sane--is: AVOID HYPOS. They certainly screw with my mood and drain my energy levels. All the motivation in the world is no match for 3 hypos. If you feel the same is true for you, read on.

    Make preventing hypos your priority while you change your diet. Test every hour or two, and try to eat something well before a hypo so that it never happens! Keep your blood sugar on the higher side during this time. Once everything has stabilised and you work out appropriate dosages, you can then reduce your sugars--and you won't need to test so often. (Ideally, ask your clinic if they can lend you a CGM for a week or two, so you can closely monitor your sugars while you adjust to a different diet.)

    A diet change can totally change your body's insulin needs at various times of the day. When I started eating low-carb, I had to cut my basal (long-acting) by 60%. From your history it sounds like pre-emptively cutting back on your insulin is sensible. Better run a bit high and bring it down gradually, than hypo all the time (in my experience).

    Good luck!
     
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  10. RAPS_od

    RAPS_od Type 1 · Well-Known Member

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    I get how you're feeling. It's scary! I've had T1 for 48 years; I have some kidney damage but I still have working kidneys.
    It is impossible not to worry about the future, no matter what anyone says. That in itself is one of the worst things about this condition. The second worst thing is how people try to sympathize with statements like, "I had a [brother, sister, mother, father, friend, etc.] who had diabetes and they didn't take care of themselves and they lost their [life, sight, leg, etc.]. Ugh! It gets so old!
    To motivate myself, I had to decide a couple of things. A big decision was that my diabetes was not the sum total of what I am. There's a lot more to me than the fact that I take a bunch of shots everyday.
    The next decision was about the kind of control I wanted to have. I don't want to die, go blind, lose kidney function, or lose limbs - doctors always try to scare you into control with this stuff - but surely there was a way to live as normally as possible without being "perfect." I'm never going to be perfect, and accepting that made things easier.
    Getting in control (well, the control I wanted) was made up of little battles. I counted myself a success if I tested my blood before every shot. Testing doesn't change your sugar level, it just tells you where you are. If I wanted to know where I was, I tested. If I knew I was high - I decided I wanted to know how high. It takes your condition management away from health practitioners who frankly are just doing their job and puts it in YOUR hands. It's your life; you decide how you want to live it.
    I also gave myself permission to cheat once in a while. At first when I was way out of control, I'd let myself have one cheat a day. As time went on, I felt better on the days I didn't cheat. Now, I cheat if I feel like it; cheating really isn't in my best interest, so I keep it to a minimum. I didn't share how I cheated with anyone and I didn't ask for permission or forgiveness.
    And that brings me to the end of my over long advice: Learn to forgive and love yourself . Diabetes is just a condition and there's going to be days you're great at being a diabetic and other days when you really suck at it. Everyone's been there, and if they say they haven't, I'd bet they're fibbing.
    You're doing great by reaching out. Keep coming back - we all support you here.
     
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    #10 RAPS_od, Mar 25, 2016 at 8:01 AM
    Last edited by a moderator: Mar 25, 2016
  11. RAPS_od

    RAPS_od Type 1 · Well-Known Member

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    I'm so sorry to hear you have Charcot, but I'm so pleased to meet someone else who knows the challenges.
    Keep up the great work on your control!
     
  12. wiserkurtious

    wiserkurtious Type 1 · Well-Known Member

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    Great read,ty for sharing your story its quiet inspirational :)
     
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  13. charlieb

    charlieb Type 1 · Member

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    My advice as has been said before is "love yourself" accept some failures but just keep on trying and celebrate all minor triumphs. It is a difficult condition to live with and sometimes other people make things worse but just keep on thinking this is my life, I am me, I am important and I am going to do the best I can for myself every day and enjoy my life. Ok we all make bad decisions sometimes but we are allowed to be human you know. I have been diabetic for 64 years and only yesterday had an argument with a friend who thought I concentrated too much attention on my diabetes, I believe it is only by putting my diabetes first and then going forward to join enjoy a full, happy and sociable life that has made my time so satisfying and made me so strong mentally. I have had some complications but still work part time, still drive, have had two children. Despite ignoring diabetes during my teenage years, just injecting regularly and trying to avoid hypos. When I became pregnant in my late twentys I knew I had to pull myself together and got my first blood testing kit and things have got better and better. I admire everyone who posts on this forum, we all know how hard it is to keep going but most of us have good lives with lots of fun and happiness. As has been said before, ignore expert friends who know someone else with diabetes, they have not got a clue!
     
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  14. charlieb

    charlieb Type 1 · Member

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    Further to my post, I have been diabetic for 57 years and am 64. Blame mistake on my age, not my diabetes
     
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