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I feel like I'm already dead

Discussion in 'Emotional and Mental Health' started by lipilintu, Apr 5, 2019.

  1. lipilintu

    lipilintu · Member

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    I have had type one diabetes for 1,5 years now (I'm 16 years old). I guess my glucose levels are quite alright, not the best possible though. I just feel like life is not worth it because I'm constantly having a cold, feeling cold (I wear my winter coat at 10°C), I can't participate in PE class properly and I'm constantly thirsty because stress makes my glucose levels high.
    My father died at 45 years old (in 2009) due to complications of diabetes which is not making me feel any better. I see news about all the risks diabetics have daily in my social medias and I just feel like I can't handle all of this.
     
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  2. HSSS

    HSSS Type 2 · Expert

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    I’m not a type one and can’t feel what you feel but you are still so early in your diagnosis there is plenty of time for it to improve. I’m so sorry you lost your dad but your story can be very different. There are some truly inspirational types ones on here that I hope will come along soon hopefully with examples and advice that will help you find your way out of this feeling of hopelessness
     
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  3. Pipp

    Pipp Type 2 · Expert
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    Hello, @lipilintu . I am an aged member with T2, but would like to welcome you. I agree with what @HSSS has said, there are lots of helpful members with T1, who I am sure will be along soon with help and advice based on their own experiences.
     
  4. Antje77

    Antje77 LADA · Moderator
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  5. EllieM

    EllieM Type 1 · Moderator
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    I've been T1 since I was 8, and I'm 58 now. I had terrible control in my teens (it was pre glucometers so I don't know exactly how bad it was but I used to get incredibly thirsty) but got my act together (mostly) in my early twenties and am still living life to the full now (travel. walking etc etc). No diabetic complications other than on again off again diabetic retinopathy. I'm hoping for another 20 years of good health, bar random non-diabetic stuff like cancer which no one can predict.

    Get on to your diabetic team. There's no reason why you shouldn't do PE (unless you want to get out of it, I hated PE so would have loved that). Maybe push for a pump and/or a libre.

    Good luck. Your chances of being an astronaut are zero, and I believe the military is out, but there's little else you can't do as a diabetic. Go for it!
     
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  6. lovinglife

    lovinglife Type 2 · Well-Known Member

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  7. Juicyj

    Juicyj Type 1 · Expert
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    Hello and welcome @lipilintu :)

    There's no reason why your life should be anything like your dads, we all write our own story, it already sounds like you are doing incredibly well so please don't focus on the negatives, take it one day at a time, if you can do your best each day then there's no reason why the future should be bleak. The sad thing about living with diabetes is that we have to face so much negativity each day because that's what newsfeeds give us, what you don't hear so much is the positives of people running marathons, flying panes, running countries, acting leading roles, playing top level sports, so try and tune into this and challenge your self to live out your dreams.

    If you need support then talk to us or your diabetes team but unless you ask for help you won't get it, but please don't believe your life is over before its begun.
     
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  8. Samanthajayne98

    Samanthajayne98 · Member

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    Hiya!! Im 20, T1 and have been for 10 years, there’s no easy way to say it but it’s hard to get your head around, don’t beat yourself up about it because it’s something I’ve done and still sometimes do! Definitely get on to your diabetic nurse because they are there to help even though sometimes it doesn’t feel like they are (definitely how I felt anyway) you’re not going to be perfect but it’s still early days you’re still learning about it and adapting.
    I’m so sorry to hear about your dad passing and no doubt that is in the back of your mind and like you say stress is spiking your readings, and i think that this worry will be at the back of your mind, but the knowledge has improved massively in the last 10 years, just try to stay positive I know it’s easier said then done but just remember you’re not alone. Just talk to people and I’m sure you’ll get that hang of it. You can handle this don’t worry everyone has there down days!!!
     
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  9. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Hi and welcome @lipilintu, it can be hard at times, it can be such a daily slog and even with all the hard work of trying to get it right, it sometimes just doesn't work out that way. Things in our lives knock us back, then trying to get back up again, to move forward is a struggle.

    Below is a forum link, it may help you get your mindset on a more positive note. Remember this is just a little blip in your life, don't beat yourself up, just take one day at a time, reward yourself when you you have good thoughts and your diabetes management is getting better, it's baby steps, you will get there, so be kind to yourself.
    One last thing, have you spoken to your GP or your diabetes team about how you are feeling, apologises if you already have ? Take care x


    For anyone going through tough times regarding their diabetes management and from reading on the forum how some younger type 1 members really, really struggle, this is a must read for all.Remember you are not alone.

    Connecting people with diabetes

    Putting the Brakes on Diabetes Burnout


    Helen Edwards; Founder and Director Diabetes Counselling Onlinewww.diabetescounselling.com.au
    Diabetes burn out is a common problem for many people, but what is it? Basically this occurs when you grow very tired of managing your diabetes. You might experience feelings of exhaustion and instead of sticking to your regular blood glucose checks, medications, exercise, insulin and other self care tasks, you only do them partially or possibly neglect them altogether for a period of time. It is more than just having a bad day. You just can’t seem to muster the motivation to keep on managing and the guilt and stress about what this is doing to your body just builds up…..adding to your distress.

    The challenge for people living with diabetes and this includes family members and caregivers, is to walk the fine line between stress and worry about diabetes, with feeling comfortable about where diabetes sits in your life. You need to try and have perspective about what your goals are and what you can realistically manage at this moment. When you balance this you are able to better manage under times of stress and prevent burn out. One of the biggest things that can help is to have good support. This includes from family, friends, other people with diabetes and your health care team. Exercise and relaxation strategies really help. Learning mindfulness, which teaches you to worry less and be present in your daily life helps to reduce anxiety and distress. Being able to feel in control and have a tool kit for what to do when things feel like they may be getting out of control in any aspect of your life really makes a difference. Diabetes is not just about your blood glucose and stress and problems in other areas of life will have an impact on you control. So it is important to make sure you stay healthy in all areas of your life and keep on top of stress.

    Diabetes is different to other chronic disease as it requires self management by you on a daily even hourly basis, with guidance from your health care team. It can be easy to become overwhelmed by all the tasks you need to do and the day to day effort needed to manage. Burn out is particularly likely if you work really hard at managing your diabetes but the results are not what you would like. It is also more likely when you have pressure or stress in other areas of your life that you feel you can not control. Diabetes burn out can last a short time, be ongoing, or can come and go. Studies have shown that a majority of people living with diabetes do experience worries, fears and negative feelings at some stage. Some high risk times where you may experience burn out due to added stress or changes in your life include:

    1. If you are not meeting diabetes targets, frustration with lack of movement towards your health goals
    2. Experiencing family/relationship problems, breakdown or violence
    3. Transition or times of change in your life
    4. Loss of someone you care about or other grief/loss
    5. Experiencing poverty or homelessness
    6. Drug and alcohol problems
    7. Problems with work and financial stress
    8. Other physical or mental health problems – such as another chronic disease, depression, mental illness, eating disorders
    9. Pregnancy – planning pregnancy and trying to conceive, during pregnancy and parenting when you have diabetes yourself
    10. Growing older and dealing with changes to your body, your health and your diabetes
    11. Diagnosis of diabetes complications
    The recent 2011 study Diabetes MILES which surveyed over 3000 adults with diabetes in Australia found that overall, people were least satisfied with their health, as compared to other aspects of their life. Adults with type 2 diabetes who were using insulin had lower levels of satisfaction across all life areas (e.g. health, relationships, safety, standard of living) as compared to adults with type 1 diabetes or with those who had type 2 diabetes but were not using insulin. Adults with type 2 diabetes who were using insulin were also more likely to experience moderate to severe symptoms of depression and anxiety than other respondents. Moderate to severe depressive symptoms affected 35% of adults with type 2 on insulin, as compared to 22% of those with type 1 and 23% of those with type 2 who were not using insulin. Moderate to severe anxiety symptoms also affected 19% of adults with type 2 who were using insulin, as compared to 15% of those with type 1 and 14% of those with type 2 non-insulin-managed diabetes. Adults with type 1 diabetes were more likely to experience severe diabetes-related distress than other respondents. 28% of adults with type 1 diabetes experienced severe distress, as compared to 22% of people with type 2 insulin-managed and 17% of type 2 non insulin-managed diabetes. The most commonly reported problem area for respondents (consistent across diabetes types and treatment regimens) was worrying about the future and the development of diabetes related complications.

    Rates of diabetes related distress are high yet people are often scared to ask for help, particularly if they have not been managing well. It is important that you DO ask for help and remember there is no such thing as a silly question! Most of us get tired of doing everyday tasks and diabetes sure adds to those! Few people can maintain all the tasks of diabetes care week-in, week-out AND keep blood glucose and HbA1c’s in the narrow target range all the time. Without realistic expectations and practical strategies for managing the thoughts, feelings and emotional side of diabetes, the risk of burnout is higher. The way we think and talk about diabetes has a major impact on how we feel and manage diabetes. Using words like “ high and low” blood glucose instead of “good and bad” can help and so does using CHECK instead of the word TEST when talking about blood glucose monitoring. The reality is most people have an immediate reaction to a high or low BGL. That is normal and fine, but once you have this reaction move on to looking at the number and working out how to manage this and prevent it in the future if possible.

    Seven Steps to dealing with Burn out

    1. Consider what particular areas of diabetes are causing you problems – usually it is not all of it! Then develop steps for sorting these areas. Get help if needed.
    2. What else is happening in your life that might be conflicting with diabetes care, or making it harder?
    3. How might you address these things?
    4. What are your expectations for your diabetes management? Do you need to lower or increase your expectations?
    5. What sorts of thoughts and feelings are you having about diabetes/
    6. How are you managing these and are these strategies working? What have you tried?
    7. Do you have any support? Is it the right support? Is it enough support? If not, how can you get this?
    Support is vital. Make sure you get this from a variety of sources:

    • Health Care Team
    • Family and friends
    • People with diabetes
    • Online and in person
    • Books, magazines and other sources of information
    • Counselling and other specialists
    • Take time out from diabetes and other stress – try to be a “human being” not always a “human doing”!
    Diabetes might thrive on maths – to be corrected and added up BUT You are not a maths problem! See yourself as a sunset – not something to be solved, but appreciated –your achievements, attempts at change, dreams and goals – sit back and appreciate them from time to time and remember there is more to life than diabetes.
     
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  10. Diakat

    Diakat Type 1 · Expert
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    @lipilintu
    Life can be extra tough sometimes, we just have to be tougher. Being a teenager is hard anyway, but diabetes can magnify our emotions.
    My mum died at 27 years old - so I have beaten her in life expectancy. My dad at 66 so I am working on beating that! Neither had T1. People can die at any time of all sorts of illnesses and accidents- we just have to do the most we can with the time we have.
    No one has a perfect life, diabetes is our challenge- other peole face worse. We can rise above our sugar levels.
    Talk to someone close about how you feel, talk to your PE teacher about your response to exercise, ask for help from your medics. You have years ahead of you and they can be good ones.
     
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  11. Jaylee

    Jaylee Type 1 · Moderator
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    Hi @lipilintu ,

    Welcome to the forum.
    I had a diabetic dad, (up until 5/6 years back.) what type did your dad have...
    Your profile suggests you're 16 years old? The best thing I ever did avoiding cold or flu was leaving school or avoid working in one... Years later in that environment "history repeated." :banghead: As well as the public. Correlated which catching whatever was going about at the time.. So did my non D collegues.. ;) Submersed in this situation.? It's more likely to happen...

    There was no social media 42 years ago. But resstement assured it is possible to have a great life. :)

    I don't roll your "dice." Just my own.....
     
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  12. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @lipilintu,
    From my experience - not as health prof. advice:
    I can recall being diagnosed at age 13, 'just' 52 years ago.
    Back then there were no glucose meters, fancy insulins, DSNs or insulin pens or insulin pumps.
    And I recall the ups and downs in BSLs and insulin doses (up 2 x normal for weeks at a time, then hypos
    and scrambling to get does back down). The 'choppy ocean swell' of growing in spurts.

    And along the way I lost friends, TIDs who developed complications.
    I spent time bricking it that that would happen to me too. And I have had moments of despair, too.
    I shall talk about that further down!!

    Nor was the information available until 1994 or so about how vital the bestest BSL control is during
    the first 6 1/2 to 10 years on insulin
    - if you type 'DCCT' into the question box of the Forum page
    (upper top right) and look for the trial (not the BSL reading conversion dcct) you will see what
    I am talking about.

    Perhaps talk this DCCT thing over with your health team - see what their take or understanding of it is.
    And enquire what they see as your best options to get best BSLs.

    You say that you are 1 1/2 years on insulin - there are great insulins, pens, pumps, BSL monitoring
    that can make a difference to BSLs like never before - opportunities and knowledge which may not
    have been available to your Dad.
    With this info available now what do you think your Dad would have said to do now ?

    Knowledge is power - as long as you can find ways to use it. So please also look at the Home page,
    under Type 1 diabetes (and also Type 2 diabetes) about the various diets people use to try to control BSLs.
    And please post about anything you read and wish to ask questions about or wish to find out more about.

    Now what saw me through the 13 to 23 years of age - that first 10 years on insulin?
    (of course these may work better or not as good or at all for you and bouncing ideas off your health
    team is best before trying them).

    Exercise - walking, swimming - anything to keep BSLs down, but adjusting insulin or using food to
    counteract low BSLs. Exercise --> insulin working better and feeling better in myself.

    Eating lots of protein: I found when I was hungry in those growing years I ate lots of cheese and
    it did not spike my BSLs the way other foods did

    Having interests: I joined the Scouts and learned sailing, canoeing. Canoeing on the river near where
    I lived gave me exercise, fresh air and time to think. And I learnt a lot about tying various knots and
    doing macrame. Canoeing was great when the weather allowed it but having something to do when it
    was raining, too cold or too hot was important too.
    The library was where I discovered the books on knots and also books on science fiction.

    Self-humour: it was easy to feel down about myself, blame myself for my not good BSLs, take things
    really seriously - and that only caused stress and higher BSLs.
    So with help from a counsellor I learnedto joke about myself: injection time was called 'javelin practice',
    the weather was to blame for this or that hypo (and sometimes I think it was in part)!
    I read funny books and watch comedy on TV.
    Nowadays my wife buys me black jelly beans - if I have a hypo and have to have those jelly beans
    she knows that I have had a hypo - elementary - black tongue !!

    Family, pets etc: For me having supportive parents and family helped. No pressure , no criticism but I know that
    that is not always the case in families. Having pets helped with providing a sense of responsibility, having the
    benefit of someone who could sense how I was feeling and respond helpfully.
    I can only imagine how your Mum and any brothers/sisters could be feeling about your Dad and you with t
    he same condition.
    Can you show her that life can be better? Give her hope and be a team, as best you can? ( and you do not have
    to tell her about the 'black tongue' trick - but it could be a way of joking about things)!!

    Friends: I did not have many friends who understood diabetes back then. And support groups etc were
    unheard of - back then.
    But I have seen these days how they can really help, sharing feelings, ideas - and so much easier with the communication technology these days !!

    Please 'hang in there' (a quaint expression we use here in Oz).
    Please think about what you learn from and find on this forum and what others have to say.
    Be kind to yourself !!

    Bestest Wishes.:):):)

    .....Hang on !!!..........Needles and.....not everyday...Be not afraid to....... nothing, nothing
    ..................................finger pricks....is perfect.........ask for help...............is impossible
    IMG_3102 (2).jpg ....... IMG_3824.jpg ..... P3310263.jpg ...... IMG_4174.jpg ........ 17903592_10206204455349159_992899227923968847_n.jpg
     
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  13. Japes

    Japes LADA · Well-Known Member

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    Hi @lipilintu and welcome to the forum.

    I've got to admit, I now turn off any news stories which mention diabetes now for the sake of my mental health! I pick up any proper diabetes-related news here rather than the mainstream media. Anyway, a lot of the media has jumped on the "obesity has caused all this Type 2 diabetes" idea which is really unhelpful for those who don't understand the complexities of the different diabetes types (which, to be fair, loads of us with diabetes of one kind or another don't either, but hopefully we're kind and supportive of each other, regardless of our type.) and who don't understand T1 is not caused by what we eat.

    I'm also trying not to dwell on the fact I'm rapidly approaching the age both my mum and my grandad died of heart-related problems (aged 57). I'm doing my best to avoid those and my GP is vigilant on my behalf about this stuff. I also sternly remind myself I am not my mother - alike as we were in many ways.

    It's worth getting some support about how to be more active with T1 (that's if you do want to join in PE! I'd've loved the excuse not to.) It's perfectly possible and for me plenty of physical activity also helps my mood. But, it took me until I was 50 to realise that....

    Are you in the UK and in year 11 with the added stresses of GCSEs this year? (And, on a different note, if you are, have you got a plan for exam support in place!)
     
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  14. lipilintu

    lipilintu · Member

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    My dad had type one since he was 12 years old
     
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  15. lipilintu

    lipilintu · Member

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    Thank you everyone for your kind and helpful answers! <3
     
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  16. lipilintu

    lipilintu · Member

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    Luckily I live in Finland so I won't have any standardized testing until I'm 18! Thanks for the tips
     
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  17. Japes

    Japes LADA · Well-Known Member

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    That is definitely a bonus! I so wish we didn't have so much testing in England. I know very little about the Finnish education system and how they would support for medical reasons for exams, but certainly, in England, students with T1 are supported in whatever way they need. (Usually in my establishment in a separate room, or the far end of the main room if it's not a busy exam day, with me watching them with all they need on hand, stopping the clock for them if they need to deal with a hypo/hyper and restarting when they're good to go again.)
     
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  18. kitedoc

    kitedoc Type 1 · Well-Known Member

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    A colleague I knew, a dietitian, was from Finland and developed T1D at age 10.
    She was working as a dietitian at the same hospital I was working at.
    She said that her diabetes was easier to control in the summer months than in winter
    and thought it might be due to vitamin D levels - which she said are lower in winter.
    She swore by taking Vitamin D in winter to help her diabetes.
    Just something to consider maybe and talk with your doctor about!!
     
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  19. Anons

    Anons · Newbie

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    At 16 I had had type one for 13 years. I have outlived your father and have now had type one for 43 years, also I never really checked my sugars often at school and you wouldnt have known I had type 1 looking at me then. Hope that helps. Play hard.
     
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