Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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How to live after giving up fighting?

Discussion in 'Lifestyle Management' started by Jasper80, Sep 5, 2017.

  1. Jasper80

    Jasper80

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    Hey,

    It is really hard to talk to people about these elemental and hard topics. Friends and family are overwhelmed, practitioners try to calm you down and a Therapeut is asking questions.

    I'm 37 now and I'm fighting for 20 years now. I've never had a normal life. More stress and pain and sadness I could ever imagined. I fought so hard, spend thousands and thousands of Euros and never gave up. There was always this little portion hope, but on the other side there has always been thoughts about Suizide. Just to handle the constant pressure and fear. There is an exit, so I can keep fighting.

    98% of all practitioners made my health worse and I've seen so many. Sitting in front of me, smiling and leaving me alone with my problems. I don't blame them (maybe a bit), but it was so embarrassing so often. Nobody believed the story and symptoms I was explaining.

    And now. Now I know so much more. Thanks Internet and guys like you. But I fear it is too late now.
    Sibo which I don't get rid of, Mcas, cfs, methylation issues, unable to eat 97% of foods. Symptoms over symptoms which make life a struggle everyday. Loneliness because I have no energy for relationships, or Hobbys or Anything. Had to give up my job now and so on.

    Every battle I begin with courage shows a bad side soon. So far. I'm sure some of you know what I mean.

    And now?: I feel like I'm at the end of the road. Not quite ready for the last step out, but I feel like giving up. I'm tired of reading hours a day about stuff that even 90% of my doctors haven't ever heard of to get hope and try and try and then again fail.

    I was treating Sibo again for 4 month with full Disziplin. Then took reishi mushrooms, which helped my immunsystem tremendously and flaired up my Sibo in 4 days so I have to get back in my Mcas state.

    Sorry lot of words. How can a life look like after one has given up fighting against the own body? What is it that makes live still worthy? How can one cope with the neverending fear? Why is Suizide not an option? What is it one can hold up too?

    It really Is a nightmare, but ok that's life. I would like to give it at least one sense before it all ends.


    Sorry if I wrote confus and thank you for every reply.

    Jasper
     
  2. Wonko

    Wonko Senior Member

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    The other side.
    Don't fight, stop hoping.

    You've been fighting for 20 years, you've been hoping for 20 years.

    What's it got you, what have you achieved.

    Just

    Live.

    For Now.

    Things are what they are, for health same as for money, don't live your life as if you will become rich, live it according to the resources you have now.

    Expecting, hoping things will be better simply breeds unhappiness.

    Exiting is always an option, if you have no responsibilities, but for now just live, the rest will take care of itself, until it doesn't. Know it's an option, accept it, relax about it.

    It is rational to make provision but despair is not enough reason on it's own to exit.

    For now, just live, enjoy what you can, suffer what you must - this is life, for everyone.

    Acceptance of life as it is is difficult, but there is no choice in this. It must be done if any measure of happiness is to be gained.
     
    Last edited: Sep 5, 2017
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Jasper80

    It's heartbreaking to know this pain is played out for so many for so long all over the world.

    The best we can do sometimes is take life one moment at a time.
    Take care,
    SD :hug:
     
    ladycatlover, Jan, boombachi and 8 others like this.
  4. lansbergen

    lansbergen Senior Member

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    I agree with what Snowdrop and Wonko said

    One more thing, fear is a huge stressor and stressors can make the disease worse.
     
    ladycatlover, Nielk, Jasper80 and 6 others like this.
  5. Stretched

    Stretched Senior Member

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    I see looking for equanimity while being ill to be like looking for success in a job you hate.
    The right ingredients simply aren't there to work with.

    To be successful at anything, first, one needs to find what s/he is proficient with. Then one builds on those skills to be exemplary. Most people grapple with both dynamics before executing a workable plan to reach a state of contentment; many never get all the way there, but making the right efforts sheds helpful enlightenments along the way.

    Looking at a 'success path' parallel helps to see the conundrum of being happy while being sick. It almost would not exist, certainly not without redefining steps and plateaus along the way.

    A little book 'How to Be Sick," by Toni Bernhard can shed some light on this dilemma. It's available in multiple formats at Amazon.com; relately, is another, "The Power of Now," by Eckhardt Tolle, which highlights the how-to's of getting unstuck.

    Perhaps you would find these easy-reads helpful in getting out of the rut you seem to be in.
     
    Last edited: Sep 5, 2017
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  6. ghosalb

    ghosalb Senior Member

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    Hi Jasper....I would say exactly what Wonko has said.....accept this illness...eventually you will get used to this new "normal" life....stop thinking about this illness all the time...find something to keep your mind occupied, learn something new, do something around the home to feel you achieved something everyday or week...many of us are living like this for years and decades...it is not all bad...it makes you learn what is important in life, simplify your life etc.etc.....good luck to you.... and best wishes....give up fighting this illness but don't give up on life.
     
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  7. perrier

    perrier Senior Member

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    Dear Jaspar
    Every word you write touches me very deeply. You describe the consequences and realities of this horror so well, and in a few words too. I don't understand this illness. Is it many different illnesses people have which doctors don't know? Is a person born with problems? I don't know. Are these new diseases? I don't know. But I watch a young person at home suffer so unspeakably, I have to look away. And you are right: after so long what can one hold on to.

    We land on the moon, on Mars,we have brilliant computers, do complex brain surgery, and we can't get the world together to figure this out, as they did with AIDS. It's criminal. It's a crime,to allow the youth to lie in beds, neither alive nor dead,suffering spiritually beyond compare. It's a crime.

    I will include you in my prayers, ask for angels to bring you relief dear Jaspar.
     
  8. Mary

    Mary Senior Member

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    @Jasper80 - I'm really sorry for what you're going through and have gone through since such a young age. All I can say is, take a break. Do stop trying and let yourself be and just feel whatever it is. I've done that, when I'm sick to death of being sick and trying.

    And then usually within a few days or a week or so, some part of me perks up again and says, okay, what now? And gets back to the business of trying to get well. But I never do accept this illness. It feels unnatural, it's not how life was meant to be, and it makes it very hard to live in a meaningful way. I'm not saying it's impossible, but I think there's a reason we keep struggling - we do want a better life.

    I think there will be some answers in the not too distant future - I think there's reason for hope, but it's okay to take a break from hope and trying because it takes a lot of effort.

    and I'll keep you in my prayers (I don't really believe in prayer but I do it anyways - go figure! :confused:) -
     
  9. TenuousGrip

    TenuousGrip Senior Member

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    I'm exhausted right now. I haven't read any of the replies. Forgive me if this is redundant.

    A long time ago I learned that there is an epic difference between "giving up" and "surrendering."

    Never give up.

    But if you need to surrender ... to conserve energy ... to make a new plan ... to figure out how to better care for yourself (physically, mentally, spiritually, ... whatever) ... then surrender.

    This fairly simplistic concept was liberating for me. I was able to stop fighting without ever giving up.

    All the best to you .....
     
  10. geraldt52

    geraldt52 Senior Member

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    And there is my good laugh for today!!!! :)
     
  11. Azriel

    Azriel Senior Member

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    Hey Jasper, we have similar symptoms and for a similar stretch of time.

    One thing that's helped me is a low fodmap diet. Taking probiotics have helped as well.

    Hang in there, just take it one day at a time. :cat:
     
    merylg and Mary like this.
  12. bspg

    bspg Plant Queen

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  13. Janice Hargreaves

    Janice Hargreaves

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    Hi Jasper, so much of what you wrote is so familiar and so touching. I eventually learnt to accept this thing (sometimes...) by realising how much of my precious energy I waste by being angry with what has happened. Then that quote "Would it help?"

    Also I know that there are many very intelligent people, who are now working very hard in the Biomedical Science fields to solve this mystery illness. Over the last 10+ years I feel there has been a great deal of progress. The last 2 years particularly have brought massive discoveries.

    A great image I use is if I was stuck in quick sand it would do me no good to thrash around. I'd be better keeping still and calm.

    So I try not to be doing battle with myself and my body. I accept and observe the wonders of the world. I use my mind to imagine where I would like to go by sitting on a cloud and going where ever I fancy....a bit daft I know but can help at times?

    All the very best to you and I wish you lots of luck. Hang on in there we're all so close.
     
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  14. hellytheelephant

    hellytheelephant Senior Member

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  15. neweimear

    neweimear Senior Member

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    A lovely reply Janice, thank you!
     
  16. neweimear

    neweimear Senior Member

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    I dont think it is good advice to say stop hoping. We all need a little hope.
     
  17. Wonko

    Wonko Senior Member

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    The other side.
    I am sorry, you've been ill a little over a year and have a family, of course you'd think that.

    However it may not be what people who've been ill for decades think. I think constantly hoping things will improve, that I'll get better etc. stopped me from dealing with things as they are, as they need to be dealt with.

    Some of us are alone, and have been ill for a very long time, of course I have a different viewpoint to you - it doesn't mean that my advice to another person who has also been ill a very long time is bad, it just means we (you and I) have a different perspective.
     
    Last edited: Sep 6, 2017
  18. neweimear

    neweimear Senior Member

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    So what? We just accept we will be ill until we die and be perfectly ok with that?? I understand we must accept the here and now but surely we should all hope for better health in the future. I know that is out of our control and depends on research finding answers but we should hang onto a bit of hope. As someone said, we can surrender but not give up.
     
  19. justy

    justy Donate Advocate Demonstrate

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    Hey @Jasper80 , thanks for opening up this difficult topic, and doing it so eloquently. Your words really moved me because I am in a similar place.

    I have kept up hope for so many years now, I have spent so much money and precious energy trying to get better as I see so many others doing. My Dr and the Lyme community gave me the message to keep pushing through and you will get there.

    Well they were wrong and, like you, all I have is much worse health. I also now have MCAS and I feel this is particularly common for us. People on Lyme groups kept telling me 'never give up fighting, keep going, why are you giving up' well now I only have 7 foods I can eat, I cant take even the medicine to make the MCAS better and I cant take any drugs. I cant leave my house and spend all day in bed. Before I tried to get better I could still eat and garden and go out occasionally and go to the cinema and eat pizza and talk and stand up.

    Now I feel like I have nothing. I have stopped with my Dr. I have stopped looking for answers. More and more things in my body go wrong, I have autoimmune antibodies that no one will care about. My body is attacking itself all day long without end. I cant even eat without nearly dying. I cant do anything anymore.

    Everything is stripped away and I am just a shell. I cant have feeling - laughing makes me nearly loose control and then causes such severe PEM I dare not do it.

    Crying causes severe PEM and makes me flush and itch and react.

    I cant be a feeling person, or a doing person. I try to just be and exist, but that is all there is now.

    I worry about getting older - im 47 and have dodgy heart valve. Illl never be able to have surgery - I cant even get my teeth fixed anymore. I haven't been able to sit down for two years due to Coccydynia. The surgeon says he cant risk surgery or even steroid injections in case they accidentally kill me and I will have to just 'manage it', which basically means never sit down ever again. So icant sit on the floor cross legged, or lay on my back, or drive a car, or causally sit on sofa, or sit on a boulder at the beach. Ever again.

    I thought about suicide. How it might be a blessed relief, not just for me but for my husband as well.

    But you know what? I don't want to die. I don't want to die so badly. But my hope is gone. Wait for Rituximab they say - hope is around the corner.

    People like me would never tolerate Rituximab or any other drug. I cant even take steroids anymore. This is what it has come to. This is what the neglect fo my govt and my health service has caused and they don't even take care of my basic needs.

    I don't know what the answer is. Im just trying my best to get through it.
     
  20. justy

    justy Donate Advocate Demonstrate

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    That is the reality people like myself and Jasper are facing. Yes, we need to learn how to be ok with that.
     
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