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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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What keeps you holding on.........

Discussion in 'Lifestyle Management' started by PNR2008, Oct 24, 2013.

  1. PNR2008

    PNR2008 Senior Member

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    I would like to know what keeps a person with CFS/ME and all that changes in life because of it, going or holding on?
     
    EMilo, SickOfSickness, ahimsa and 4 others like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wife children mortgage and alot of unknowns why.
     
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  3. PNR2008

    PNR2008 Senior Member

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    I'm at my wits end and hope to find a new pathway in life to deal with this illness. So many here are experienced soldiers and I just need something, anything to get a new perspective.
     
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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think we are like the 3 legged dog and we just keep hopping along cause we have too.

    I know what u mean, sometimes there doesnt seem to be alot to look forward too.
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think it is a long conversation for each of us. Maybe we find something new in ourselves or a way to morph our interests and talents into things that we can do now. A friend lost her career and discovered that she was an artist. Another friend realized (through this illness) that the career he had trained for wasn't what would ever fulfill him and now he is concentrating all his efforts on healing in hopes of training for his new career.

    Hope of something--whether it is healing or of finding meaning--seems key.

    Some us just don't want to give up and keep looking for ways to help ourselves and others. Sure we have to acknowledge the reality of things lost, but I think there is the aspect (at least for me) that as long as I'm breathing, there is something here that I am meant to be doing, even if it is nothing like I hoped and expected.

    And then there is music, and books, and art...all of it right here on our computers. To say nothing of new friends made here--those who understand what our lives are like.

    Sushi
     
    EMilo, Daffodil, SOC and 12 others like this.
  6. Sea

    Sea Senior Member

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    I keep reminding myself that the value of my life is not in what I can do
     
    ahimsa, leela, peggy-sue and 5 others like this.
  7. PNR2008

    PNR2008 Senior Member

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    After 25 years of this "pain in the butt illness" I still get caught feeling hopeless but I'm not usually that way. Still it's a black dog kind of feeling where I'm out of ideas and the next day seems like an eternity to get through whether it's pain, money problems, no faith in the medical profession or government, or just lack of courage and just maybe exhaustion but it still grabs me and swings me around a few times.
     
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  8. WillowJ

    WillowJ Senior Member

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    the other patients.

    If I can hang out with them, listen to them, speak for them, help figure out the science with them, or just not give up for them (whatever I can manage that moment), it's a win.

    plus for me there is my family, my faith: the traditional stuff one would think about. Not everyone has these things, and it's probably already been considered because it's obvious (and heaps mentioned one of these).

    but yeah, it's hard. Some times it seems the world has shattered and it's really hard.

    It helps to have others to talk to who are here in similar situations.
     
    SpecialK82, SOC, leela and 4 others like this.
  9. Tammy

    Tammy Senior Member

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    I don't feel like I can express in words right now my thoughts as to your question......but I do want to send you a warm heartfelt hug.
     
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  10. aimossy

    aimossy Senior Member

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    hope hope hope hope.of some sort where ever you can....like squeezing a damp dish cloth hang on to every drop that comes out!
    find a reason outside your own pain whether to hang on for friends or family.
    I hang on in there to keep being there for my mother(she had a severe brain injury and my family and I look after her at home)
    I try not to take myself too seriously and laugh as much as I can cos when you are low it can bring you out of yourself and ease the tension.
    Try not to compare yourself with others
    Don't be hard on yourself when you get down with it and talk to someone when it gets bad. Cry.
    these are the things I work on all the time, I have bouts of I cant take it anymore....
    I distract my brain or thinking as much as I can
    love......im sending you some of mine

    meaning is very important I have found a bit more from being another one of the ME soldiers recently
    we are together and hanging on together.what might be around in the next month could change something for the better

    amy
     
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  11. Waverunner

    Waverunner Senior Member

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    Hope.
     
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  12. maryb

    maryb iherb code TAK122

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    I agree - Hope is first - each day is new.......who knows what'll bring.

    My family - god I love them all so much.

    Losing my beloved sister 2yrs ago - she so wanted to see me get better - I'll do it for her if no-one else.

    We're ill but still lucky to be alive - thats very important, having suffered the loss of someone so near and dear, it makes me want to stay on earth as long as I can for my family.
    and much much more but thats enough brain cells for one day
     
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  13. xchocoholic

    xchocoholic Senior Member

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    Experimenting with new supplements, diet and meds.
    I'm a geek so all this free info keeps fueling my
    need for a mental challenge. Plus I get to experiment
    on myself. I'm easily entertained. ; )

    I've learned over the last 8 years that some ideas work
    and some don't but a new
    experiment is just around the corner.
     
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  14. Hugocfs

    Hugocfs Senior Member

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    You may want to check out (literally from your library if it is available) a book called "a Guide to the Good Life" by William B. Irvine.
     
  15. alex3619

    alex3619 Senior Member

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    In no particular order, I am rambling late at night:

    Distractions. When things get hard, I find something else to do, something fun, however limited that might be.

    Hope for myself. That is a common theme amongst patients I think.

    Hope for others. I want to see all of us improve. Like WillowJ, I find it important for me to bring hope to others, no matter how small that might be. I temper that with as much realism as I can though. Realistic hope is better, it doesn't shatter when tested.

    Concern. Hope for others is tied to concern. I have heard so many stories of pain, suffering, disillusionment etc. Sorting them out for people even a little bit is a worthwhile thing to do. I cannot solve the riddles of the universe, but if I can help someone once in a while, its enough. I think others feel this way too, at least some of us.

    I have a burning need to understand too, which currently is challenged by worsening memory. However I want to understand it all, from the biochemistry to the politics. Too ambitious, yes, more than I could do in a lifetime if I were well, but hey, the journey is almost as important as the finish-line tape for something like this.
     
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  16. peggy-sue

    peggy-sue

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    I was once very moved by a scene in Coronation Street.

    A much-loved character (Vera) was in a hospital bed, close to death, with her husband (Jack) by her side.

    She was bemoaning the fact that she had done nothing important in her life, not made her mark on the world, not done anything useful.

    He husband said to her; "Vera love, you have made my life worth living.*

    It changed how I think about what is truly important in life. It's not personal achievement, that doesn't matter.

    But if you can make somebody else's life worthwhile, you have done something truly wonderful..

    We can still do this sort of truly meaningful thing.

    I hang on, for those who love me.:love:
     
    EMilo, leela, aimossy and 6 others like this.
  17. InChristAlone

    InChristAlone

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    Jesus Christ. <3

    Honestly, it took a lot of searching during the first months of my illness. Honestly, I had no idea why this was happening to me, and it wasn't cool. I went from being like "Okay, I can deal with this" to "*sobbing* I don't understand!" And while I still don't understand, I've found my strength in God and His love for me. I mean, Jesus Christ died for me, to save me from my sin! That's amazing that someone loves me that much. And He loves you that much too! It was just me He died for, it was the whole world.

    "For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life." John 3:16.

    I'd say that's a great reason to keep going.
     
  18. peggy-sue

    peggy-sue

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    There's a lot of wisdom in Coronation Street - (or at least there used to be in the olden days:p )

    I liked another of Jack's comments:

    "Men tell lies more often, but women do it better."

    and;

    "Trying to stop two fighting women is like trying to stop a dog fight.
    Sooner or later, they will gang up on you; and you will end up needing a new pair of trousers."

    came from Fred Elliot, I say Fred Elliot.

    (he had echolalia)

    sorry for the hi-jack, I thought a bit of humour might be uplifting. :redface:
     
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  19. alex3619

    alex3619 Senior Member

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    Humour is another thing that keeps us going, even grim humour is better than despair. There is never a need to apologize for humour. ;)
     
    aimossy likes this.
  20. maryb

    maryb iherb code TAK122

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    hear hear......I say hear hear :)
     
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