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Suffering and spirituality 2

Discussion in 'Spirituality and ME/CFS' started by Nielk, Aug 27, 2011.

  1. Dreambirdie

    Dreambirdie work in progress

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    Hoping has not been very helpful for me at all, and I have made an effort to avoid it as much as possible. Whenever I observe myself hoping, it's usually a sign that I'm feeling completely hopeless and trying to compensate for it. In fact, I think most of my hoping is driven by the fear that I will NEVER get better. So I hope hope hope that that isn't true, and I often become more fearful and miserable in the process. This isn't to say that I have abandoned the idea that things can change and get better, because change is an inevitable fact of reality. But in my experience, change has very little to do with hope.

    Most of the self-help books I have read in the past have not served me well when it comes to dealing with this chronic disease. Lately, I have felt inclined to throw them all out. I have found that trusting my intuition and following its lead is a much better option for me than climbing into a neat and tidy pre-fabricated agenda, that someone else made up, and trying to make that work for me.

    In all honesty, sometimes when I feel really agitated by very hyper-active neuro symptoms, or really depressed from not sleeping for days because of them, all I want to do is wail and scream. And that's what I do. I get in the bathtub (with the door and windows closed, of course) and I wail at the top of my lungs. I chant, shout, sing, rap, bellow, moan --whatever it takes to release my pain and frustrations through sound. One night I sang "ow-eee, ow--eee, ow--eee" over and over and over again for half an hour. On another night I made up Native American sounding chants as I pounded my fist on the side of the tub. I never know what will come out, but I trust my soul to let it out, and I follow through by allowing it. I know it works because I always feel better when I am done.

    I do the same kind of thing with painting. I allow the feelings to roll out of me in shapes and colors, and I let whatever needs to be expressed and purged come out of me, without repressing it, or controlling it, or filtering, or judging it. It's amazing how powerful the expressive arts can be, if we let them BE EXPRESSIVE. It sure works for me.

    Being in nature is also helpful. Watching clouds and trees and birds and and especially waves on the ocean... WATCHING WITH MY WHOLE BEING, to the point that I am merging with the scenery and dissolving into it. It makes me feel better to remember I am part of a living planet and that we are all in this together, for better or worse, and that we all (every single life form from bacteria to elephants) are significant to the earth, but only as significant as any other speck of dust in the universe.

    I have no idea what will work for me on any given day, to make me "feel better," but I am finding that NOT KNOWING, and being willing to find out, can be the most helpful thing of all.
    Nielk likes this.
  2. Dreambirdie

    Dreambirdie work in progress

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    Deep Peace. I love this piece of peace. SO soothing and lovely. Enjoy.

    [video=youtube;k0J7Zx-F1uA]http://www.youtube.com/watch?v=k0J7Zx-F1uA[/video]
    CJB likes this.
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have always loved that song. It is on one of my Celtic CD's I think. I needed that....I have been cleaning out my closet with hubby's help. I wanted to clean out my greeting cards and I read a lot of them, kept the most important. The letters from my Mom and Dad who are still healthy of course. Love thouse and the ones from my Nana....I am still crying from reading her cards/letters. I miss her every day. The crying isn't great for my POTS, has made me feel awful, but I needed to get the cards cleaned out. Thank God I have such a wonderful family and support. I will see my family that is not with us anymore in heaven someday.

    [​IMG]
  4. Nielk

    Nielk

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    I know that many people find crying counterproductive and some are afraid that it will lead to depression but, from my own experience crying and sometimes wailing (in private) is a great release, like DB described. I do not feel like it's a sign of weakness, I feel that it is a genuine outcry and we were given this emotion for a reason. I usually feel better after and can even think more clearly. Sometimes, I get my best epiphanies in those times and try to go with the ideas that come up.
    CJB likes this.
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Crying what humans do sometimes. I can't imagine how it would lead to depression, just what people do when happy,sad or missing someone. It just got me POTSY. I am OK now.
  6. rydra_wong

    rydra_wong Guest

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    I LOVED that song! Like a Gregorian Chant!

    When I am depressed I read a book and all the particulars of my life slip away as I forget myself in the story. I think that everything is possible at some point and so the thing to do is try and when you are too tired to try, relax, read a book, and regroup, then later try again. It's not that I believe I will find all the solutions, but just that I believe they are findABLE and at least SOME of them will be found in my lifetime. Maybe the rest will be found for the next generation, and I wish them well. I read a lot of books.
  7. Dreambirdie

    Dreambirdie work in progress

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    I hear you, Nielk. Sometimes wailing is a good thing. Kind of like a thunderstorm, it helps to release the tension in the air, or, as this condition will have it, in the brain.

    I think people in our culture (and in many other cultures as well) are afraid of strong emotions. They would prefer them to be toned down, calmed down and made palatable, for their own comfort. This is one of the things that disturbs me about some of the stuff I have read in New Age style self help books. There's often too much emphasis on being emotionally non-attached and on having a pre-programmed practice (aka inner agenda), through which your life and problems can (supposedly) be neatly figured out with a few prescribed exercises. I can hear my psyche laughing out loud at me, at the thought of this!

    I have had some of the best purges with my tears. I am glad that I'm not afraid to cry.
    Wayne and Nielk like this.
  8. Nielk

    Nielk

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    I have not posted here, my favorite thread for a while. There is a reason for this. I have been going through what I feel is a black hole. Physically, I have been deteriorating, leaving me at my most vulnerable state. This in turn has been affecting my mood greatly. I have tried many options to improve on my condition but, I hit a stumbling block at every turn. My mind takes me to dangerous places. It says:"God help those who help themselves". I have been trying, I have been praying, I have been beseeching but, I guess God does not feel that this is the right time for me to get well.

    Self help books and people have been telling me that I have the wrong attitude. If I would only believe that I can get well, the karma will make it happen. Is that true? I don't have enough of a desire to get well? Well, they say;"you lay in bed all day, how do you expect to get better". How do I explain to them that I have seeked out and tried so many different type of treatments with either no positive results or a backsliding to a more severe level.

    I lay in bed because that's where my pain is the most bearable. But, it gives me too much time to think. I used to be angry at God for allowing this to happen. Now the anger has turned to apathy and I'm afraid that this stage is very dangerous.

    They say;"it's not the suffering that's crucial but, the way you react to it". Well, for the past few months, I have not been reacting too well. I see everyone's lives
    progressing around me. Even the birds that I see out my window, perched on my tree are much more useful beings than I am. They can fly places. They hang around groups of friends. They sing. They are able to feed their young. Even the tree itself is more useful than I am. The tree provides shade. It gives a resting ground for the birds. It provides beauty of nature for people's eyes to enjoy.

    What do I impart to this world? Nothing. I just take up space. Use oxygen. Need help from others in order to survive. What is the meaning of my current life?
    I can't find any. I have fallen too many times. There must be a limit of suffering where God intervenes by either helping one out or taking one to another peaceful place.
  9. madietodd

    madietodd Senior Member

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    Hey, sweet friend, I'm sorry.

    What I hear is "This pain has taken everything; all I can feel is apathy."

    What I wonder is "How is it possible that there is no excellent pain management doctor within driving distance of Queens, NY?"

    I am furious on your behalf that no doctor has given you any relief, in all this time. Of course you're worn down and exhausted. Is there somebody in your life who will advocate for you? Who will call all the pain clinics until s/he finds a good fit for you?

    In the meantime, I send you hugs.:balloons::hug::balloons:

    Madie
    L'engle, ahimsa, Wayne and 1 other person like this.
  10. Wayne

    Wayne Senior Member

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    Conjuring up Miracles ?

    Hi Nielk,

    Sorry to hear you're going through such a rough time. As to your question, I would ask some of these people why they don't just use some of that positive thinking to correct their less than 20/20 eyesight, or some other physical malady that is way less complex than ME or CFS.

    That might be a little cryptic for your style, but perhaps you can present it a way that gets them to pause for a moment and reflect on the absurdity of what they're saying. Not to say positive thinking doesn't have it's place, but I'd venture to say it's rarely possible to conjure up miracles just by using our thoughts alone to make them happen.

    I hope better days are ahead for you.

    :hug: :Retro smile: :hug:

    Wayne
    Nielk likes this.
  11. Dreambirdie

    Dreambirdie work in progress

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    Hi Nielk--

    Sorry to hear about your recent ordeal. These long setbacks can be exhausting on ALL levels. I've been pretty drained myself these past few weeks, by one thing after another, so I know the score on this one.

    What came to mind when I read your post was: WHO SAYS you need to have a good attitude? Sometimes that is just not possible. If people around you don't understand that, then really that is THEIR problem. This isn't to say that they can't chose to not be around you, if your attitude somehow bothers them, but I don't think it will help you at all to try to shape your attitude into something that others will approve of. And why SHOULD you?

    Speaking from personal experience, I know that fighting what I feel, and trying to feel something else instead, ALWAYS makes it worse for me. Whoever said, ''That which we resist, will persist," had it right. If I am angry or depressed or anxious or sad, and I try to make myself NOT be there, it is a guarantee that I will drive myself deeper into the muck and add to it with my resistance. The only option I have at moments like these is to be exactly where I am. If I can find the willingness to embrace it, then that can be a huge relief. IF I can't find the willingness, then I just have to be with my UNwillingness, until eventually the willingness just happens in spite of me anyway. Strange how that is!

    Also investigating the feelings more deeply, and finding out what is driving them, can be helpful too. I don't exactly what emotion is lurking behind the apathy that you feel right now, but I imagine it could be despair, hopelessness, fear... or all of the above. Sometimes there is a belief or thought attached to these feelings (like maybe the thought that "I will never get better"), which will feed the feelings and make them more overwhelming.

    Knowing what you're dealing with, identifying the feelings and watching what your mind tells you about them can be helpful. Or if that doesn't work, you can always get under the covers and wail. I've done both, and can attest to each of their levels of effectiveness.
    Nielk likes this.
  12. Nielk

    Nielk

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    Thanks Maddie, Wayne and DB for your responses and great advice. I really appreciate your empathy and understanding. I think that most of us go through dark times when we hit bottom, we just can't imagine continuing this way and it's very hard to cope with that.
    I understand DB what you are saying that sometimes you should just accept your feelings and allow yourself to experience it. I think I read somewhere that in Japan, the way they treat depressed people is to do nothing. They just allow them to go with their feelings. If they want to just stay in bed and cry day in and day out, they can do that. No one is trying to stop their feelings and they found that when they were ready, they just got out of it themselves and were fine. They found that the success rate there with this method was at least as good as here where we go for psychotherapy and take anti-depressants.

    I think that part of the reason I am so down is because of my constant pain and inability to even stand for a while but also because of the effects of some meds
    which are playing with my brain and they seem to be a magnet to my body. I'm trying to find a way to detox but, there doesn't seem to be an easy answer.

    I feel stuck in this state and can't find a way out. The way out that seems the easiest for me right now - I don't think will please God or my family.
  13. Mary Poppins

    Mary Poppins PJ Princess

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    Nielk, much love :hug:
    Nielk likes this.
  14. ahimsa

    ahimsa Senior Member

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    "the karma will make it happen" - really?

    In my humble opinion, anyone using the word "karma" in this way has no real understanding of what it means. If they claim to believe in karma then they should at least use the term correctly. It's as if they heard the Beatles' song Instant Karma and decided that made them experts. :rolleyes:

    I don't claim to be an expert, either, so don't quote me on this! But what little I do know is that karma (action) and reincarnation go together. The karmic belief system is a universal system of cause and effect. What happens to you in your current life is determined by whatever actions you performed in your previous lives. And the actions you take in this lifetime will determine what happens to you in subsequent lives. I don't think any version of karmic theory says that an action taken in this lifetime (whether good or bad) will be repaid in this very life. But maybe this is a new belief system rather than the older, more traditional views of karma that I've read about (e.g., Hinduism).

    At any rate, while karmic theory may be an interesting topic for a general discussion it is NOT meant to be used to blame someone else for their pain and suffering! Religious belief systems, whether Christianity, Judaism or Hinduism, are supposed to be a way to become better human beings, not a way to torment others ("your illness is your own fault") or feel superior to them ("my 'karma' is better than your 'karma' "). Why do people use religious beliefs in this way? So sad.

    In summary, why are these people saying that you can heal yourself simply by thinking positive thoughts? That's not what karma means at all. That's just blatant victim blaming.

    I'm terribly sorry to hear that people have been saying these kinds of horrible things to you. My advice is to avoid such people if at all possible. Or, if they can't be avoided, then change the subject as quickly as possible. Oh, and also throw out any of those darn books that make you feel guilty for being ill. Phooey on all such books! :eek:

    Nielk, I'm so sorry that you've hit a low point. I'm sending you good vibes with the hope that you find some effective pain relief to help you get through this rough patch.

    :hug: Sending you lots of hugs. :hug:
    Wayne, L'engle and Nielk like this.
  15. anniekim

    anniekim Senior Member

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    Big big hugs xxxxx
    Nielk likes this.
  16. Enid

    Enid Senior Member

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    Different levels Nielk - bod's ill and we fight for this to be recognised against all the prejudice - spiritual is higher - it changes living and each on their path as we all go through. It's a very personal journey.
  17. Nielk

    Nielk

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    It is a personal journey and everyone experiences setbacks differently. Each person will react differently as each one of us, even though we share the same illness, our experiences differ and our co-factors are unique.
    Each person has different capabilities and different ideas of how to cope with suffering or how to reach a level of spirituality in their life that they are content with.

    I read somewhere that when one passes to the other side and their entire life will be looked at, they will not be asked;"why weren't you as great as Moses?". They will be asked; "why weren't you the best "you" that you could be". In other words, everyone is judged according to their abilities and circumstances.

    To me. my faith and spirituality are my bread and butter. I feel that they are so crucial that life without it is meaningless.

    I know that spirituality is a "big" word and means different things to each one of us. It can just mean appreciating the beauty of nature from the smallest seed.
    It could mean a whole belief system.

    Throughout my life, even before ME/CFS, I have experienced a lot of anguish. I stumbled at times but was always able to eventually get back up and find my footing.

    Sometimes, when one gets "hit" repeatedly and severely, it comes a point when one is so broken that they just don't have the energy or capability to get up anymore. They loose touch with the meaning of getting up again. There is nothing to hold on to anymore. This is probably a false perception by a damaged brain but never the less there is a limit to the abuse any single person can take.

    I have hit bottom and am sliding in the slippery hole full of mud.
  18. madietodd

    madietodd Senior Member

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    When I get in that hole, I first do everything I can to feel better, in the areas I have some control over. This is why I keep going on and on about pain meds.

    I don't know how you could possibly access higher/deeper parts of yourself when you live with unrelenting pain. I've been there, and my spiritual Connection kept me sane, but it didn't do anything for the pain. I couldn't begin to feel anything useful, or helpful, or uplifting, when it took all of my energy just to breathe.

    Can your doctor refer you to a pain specialist? And give you something strong while you wait for the appointment? Because in my book, suffering is a part of life, but so are the things that relieve it.

    xox Madie
    ahimsa likes this.
  19. Nielk

    Nielk

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    Hi Madie,

    Thank you for your constant support. I do take painkillers. They don't help much for me. Part of my problem is that I'm addicted to some Benzo meds which are playing games with my brain. It keeps on urging me to take more and I want to withdraw but I can't.

    Thanks for caring.
    madietodd likes this.
  20. ahimsa

    ahimsa Senior Member

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    Nielk, my post overlapped with yours - you already answered madietodd.

    :hug: So I'll just add more hugs. :hug:

    Benzos can be nasty. My mother was on Valium for many years. Sorry you're having to go through that kind of withdrawal.
    Nielk likes this.

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