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Struggling with type 1 Diabetes

Discussion in 'Emotional and Mental Health' started by isu, Apr 13, 2018.

  1. isu

    isu Type 1 · Newbie

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    Hello, I'm a 1st year university student, diagnosed with type 1 about 3 years ago. At that time I accepted the diagnosis and went on with modified diet - I literally weighed everything I ate, counted carbs and every single calorie in food I ate, I kept track on my blood sugar levels, as well as the insulin and boluses. And, well, everything was fine, my HbA1c was low, sugars too, however I got many hypos.
    And then it got so draining, so exhausting, so painful even. Since I was 16 at the time I got diagnosed with diabetes, my parents didn't partake in any activities concerning it - I had to learn it all alone, since I was "adult enough". Except questions about how was my sugar level, they literally didn't care. They never tried to understand and qestioned everything I did, never supporting me. But I took care of myself, I did it despite my parents approach or the fact that none of my friends (or so I thought) really cared. I got hypos and I felt so awful, even more after seeing that some teachers at school cared more than them to do something when I nearly lost consciousness. I know that it might be difficult to understand how hard it is to have type 1, but they didn't even want to know, didn't really want to listen since it didn't concern them.
    And then it got bad. I don't know whether to call it a crisis or maybe a depression, but I lost all motivation. I felt so alone in all this and the stress and other things were just too much at the time. I stopped checking my sugar levels regularly, didn't give myself insulin bonuses, my bad dietary habits came back. Some days I didn't eat much, and some others I catched up with big amount of unhealthy food. Some days I didn't use any insulin except the base, fortunately I still had my pump attached, otherwise I might have been in a worse conditon. I felt awfull, mentally, psychically... there were times I even thought why should I bother with anything and bad thoughts nearly won me over. I'm not sure if I'm okay now, but I know I want to get better.
    I don't really consider getting psychologist help, I tried but it's hard for me to open up like this. However, I would be grateful for anyone who'd like to talk to me, anyone with diabetes or someone who also had similar experience since there's literally no one in my surrounding who's also dealing with diabetes. Please contact me here, or in private message, we might provide each other help and support or simply talk about other things. I'm in process of getting better, but I don't want to feel alone in it anymore. I know there are many people who are struggling with diabetes and I really hope it gets better for all of you, as well as for me.
     
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  2. Lordy100

    Lordy100 Type 1 · Well-Known Member

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    Hi ISU,

    You have made the first step by simply writing your post on here.

    I am sure there are lots of people who will offer advice, it is worth reading and seeing if you can make it work for you. I've been diabetic for over 30 years and the people around me still don't know much about diabetes. It is important for your future life that you learn to manage your diabetes in order for you not to suffer from complications down the line. There are lots of pages you can look at and posts relating to "diabetes burnout".

    As for being the only one in your surroundings dealing with diabetes, how do you know? There may be many people around you if you taken into account all the statistics that are available.

    Don't be too hard on yourself, we all need help.

    Good luck
     
  3. Juicyj

    Juicyj Type 1 · Moderator
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    Hello @isu Welcome to the forum :)

    You are not alone in your struggles, take some time to have a look through the forum, it's pretty common to struggle with this and support is incredibly vital which is why it's sad that your parents don't support you. What's your diabetic support like with your healthcare team, do you have regular appointments or someone you can speak to ?

    Sometimes it's hard to differentiate between life with and life without diabetes, at your age with so much going on then would you be feeling overwhelmed if you didn't have it do you think ? Yes we do carry an extra burden with management of insulin and controlling blood glucose levels, however don't look to the past and try to replicate the good old days, instead try and work on the day to day stuff, so start by taking insulin when you eat and doing your blood glucose testing ? If you can get better control then mentally you will feel tons better, running high and carrying extra glucose in your blood will slow your mental capacity to think clearly, hence why just take some small steps to bring your levels down. It sounds like when you were diagnosed that you went through a honeymoon phase and so suffered alot with hypos which are in themselves draining and so this coupled with coming to terms with your diagnosis and dealing with the mental issues associated with daily management were the breaking point for you. The difference now is that it's highly unlikely your pancreas is producing any insulin, so getting back better control would be easier as you are able to control your blood glucose levels with your insulin and no additional pancreas input.

    I know it's hard to admit you need help judging from what you've written but even chatting on here where no one knows you and getting some support from other type 1's will help to get you back on track, I tried to get counselling early on in my diagnosis as I hit my rock bottom but I ended up banging my head against the proverbial wall with my GP so found this forum as well as meditation. It will get easier once your levels stabilise and come back into range, but take it one day at a time and keep talking too :)
     
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  4. phdiabetic

    phdiabetic Type 1 · Well-Known Member

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    Hi from another uni student! (Postgrad here!) As well as posting on the forum (a great place to hang out with other diabetics), consider looking for local support groups. You may benefit from spending some time with other T1s in real life, especially if they are close to your age. I was diagnosed at similar age, I do most of my care on my own but my mum has a very good understanding of diabetes (due to her I was diagnosed quickly and didn't even go to hospital). My parents mainly do things like bring juice/sit with me if I am low. Could you ask your parents or friends to sit down with you for a couple of minutes to support you during hypos? They don't have to do anything, just sit nearby so you know you're not alone.

    Do you have a fulfilling life outside of diabetes? How are you doing in uni? Do you have hobbies and interests?
     
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  5. HumerusGal

    HumerusGal Type 1 · Newbie

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    Hi @isu,

    Your situation is actually not that uncommon, as weird as it may sound. I'm also a (2nd year) uni student, and struggled a little in my 1st year, and through my A-levels. The stress, exhaustion, constant monitoring, etc. really get to you, and you lose motivation, leading to a vicious cycle of poorer control, feeling worse, psychologically and physically...

    This also sounds like classic 'diabetes burn-out', though you yourself there might be a mental health element to it?

    I'm glad to hear you say you're getting better, but I still think it would be useful for you to talk to someone. I'm the same as you - not wanting to share with others about the struggles I'm having, especially as it's not as obvious to other people if we're going through a bad period. But trust me, it helps, even just ranting to a friend or family member. Are there any support services at your uni maybe, ones you can just pop into, chat with someone, and not commit to anything further? Or maybe just go to your GP and have a chat with them if you want a second opinion on what this might be (re the mental health element).

    Sorry for the long text, please message me/reply to this if you want to talk more on this, I think we're both going through/gone through similar things :) [I have so much more to say haha]
     
  6. jlarsson

    jlarsson Type 1 · Well-Known Member

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    A lot of this applied to me as well, except I was diagnosed a bit earlier and neglected everything before I even got to uni. I've gone through long periods of feeling useless and what's the point and all that, and as a result marks suffered, and in the end(i.e now) I never got into places I know I could've if it wasn't for this effing condition of ours. I hated testing from day one, still do, and until I got my Libre last year I neglected testing far too often, when nobody around me actually nagged me to do it I could go months without checking, just guessing how much I should inject.
     
  7. Dannymum

    Dannymum · Member

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    Hi HG,
    Did you manage to find anybody interested in doing the young peoples summer camps or activity camps to get to know others
    in the same situation and get mutual support, even on an informal basis for a small group ? You sent a message a few weeks ago.

    I am interested in doing something like this for my son who is T1 and has been since 4 years old !!
    He is now just turned 13 and is struggling with it all, I am concerned that he does not take it seriously and forgets to test enough each day, also that he is less active lately !! I understand and empathise how difficult it must be day after day, year after year, there is no break time is there ???

    Can you let me know where you are based in the UK, I am in the North West.

    Please contact me if you are still considering this over the summer at all ??

    Best, DM
     
  8. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @isu,
    I have a tale to tell and ask your indulgence.
    I did uni from 1972 to 1978. Diagnosed TID at age 13, no pumps, meters etc. Meters came in about 1980 to Australia.
    I did have supportive parents but I developed the desire early on to be as independent as possible. And with that came a distinct feeling of being different to others. That was a big thing - feeling isolated, nobody knew what it was like and hypos, how embarrassing, "is he drunk?, the numbness and dumbness feeling. Life was more about avoiding hypos than normal blood sugars. And back then doctors' aims were to have their diabetic patients all with good blood sugars (when all there was was short and sort of longer acting insulin and urine testing) and it was a personal affront to them if I did not conform to their expectations !!
    But I exercised, watched what I ate, because I feel sick if I did not. Got teased at school back when teachers sprang you for eating in class and didn't understand your excuse)
    Exercise made life easier and dispelled some of the gloom.
    There were no diabetes camps I was aware of then but there are now. I have participated as a volunteer over the years and I highly recommend them. For the friends, contacts made, the team work and the between camp times.
    I did Cubs, Scouts and Seniors which gave me interests and experience in how to plan ahead - and did 7 day long canoe trips through wilderness ( the sort of thing you say and then advise, do not do this at home).
    Why am I telling you this? You are not alone. Yes it is still painful, mentally and physically but there is a light along the tunnel.
    And after uni, beginning work as a doctor, family, children etc I experienced depression. Not something I looked for or welcomed, but it ran in the family. What I realised was that I had been battling depression in some form since teenage years.
    That ingrained independence theme kept me in denial and made it very difficult to accept help. I had survived diabetes for years, was a doctor - how could I admit to being depressed.? Swallowing pride is a huge lump to get down.
    Just as it was later to accept that an insulin pump was the best way to manage my diabetes. Sounds daft ? Any threats to my independence and my pulling myself up by my own bootlaces were unconscionable. ( great word from a law student!!)
    Finding and keeping friends; cherishing relationships or family life as more precious than work life; developing interests outside of work ( but pass on Everest, it is over-rated); admitting limits; being prepared to lean on human supports; finding a good counselling help (a psychiatrist in my case), all helped, (and not giving up on exercise, but nothing too vigorous as it stuffs up the bsls).
    Practicing self humour ( easy as an Aussie because we usually do not take ourselves too seriously) and reading the two Book of Hugs (author surname, Keating) have helped enormously.
    At the 51 years on insulin mark things are better than they were. Still no picnic but the trying to do better pays off.
    So i implore you to seek help, find others with diabetes, supports, and come to realise that human pancreas glands have been in development for thousands and thousands of years and trying to pilot just one incredibly complex part of what the gland does is a big ask! Give everything your best shot!
    Best wishes and keep posting !! Now retired and the letters after my name are now KD (Kite Doctor) MM (Mere Mortal).
     
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  9. HannahL

    HannahL Type 1 · Newbie

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    Hiya, looks as though we are both similar ages I’m a newly diagnosed T1 but struggling to get to grips with it all at the minute, I would be happy to chat to you we could support eachother!
     
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