1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Suffering and spirituality 2

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

  1. Mr. Cat

    Mr. Cat Senior Member

    Messages:
    122
    Likes:
    91
    Nothern California
    Whoah! Very nice. As one youtube commenter mentioned, I think we are actually more than just the witness, we are both form and formless. When the form is having a bad day, it's nice to remember the formless, though.
  2. Mandala

    Mandala

    Messages:
    12
    Likes:
    8
    Edmonton, Canada
    What falls into the vacuum of my times of rest

    One of the experiences I'm having trouble is the large amount of time involved in my frequent necessary rests, during which I'm unable to listen to or watch anything. (I should clarify here that I live alone with my cat, so my rests are not a break from external noise, but only continued silence). I find meditation very difficult, and can only spend so much time watching my breathing. So my mind wanders, and usually not to good places.

    This week, I suddenly became aware that the spaces of time in which I must rest are creating a vaccuum into which are falling negative thoughts (like envy of others), obsessive thinking (like going over the past and wondering how exactly I ended up so ill), even self-destructive opinions of myself (like being worthless now), etc.. I've also discovered that I have been trying to soothe myself by reliving pre-sickness times that were wonderful, even with a partner long gone.

    This week, it was as if I was suddenly jolted into realizing what I was doing. I've been startled to realize how much time is passing this way. I've recognized that much of the content of what is happening during my rests involves the past: what I've lost, what went wrong, trying to figure out why. But I don't think that this can be good for me, even if I think I am brushing these thoughts off after my rest. Moreover, it is as if there is no present or future, just primarily the past.

    I think I must somehow protect myself from falling into these spaces, but with such limited activity levels, I don't really know how. I have also been thinking of the earlier question: Who are we really beyond our roles and actions and self-definitions, when all else is stripped away? It appears that into that feeling of absence and emptiness, some aspect of me is pouring a great deal of problematic thinking. That's as far as I've been able to go with this.

    I feel very troubled by this now, particularly because it means that so much time of this precious life is being given up to something that I'm often unaware of and that could be damaging. :confused:

    Mary
  3. Nielk

    Nielk

    Messages:
    5,070
    Likes:
    4,579
    Queens, NY
    Hi Mary,

    Thank you for sharing your honest poignant account of the difficulties you are living through. I can totally empathize because that is just the nature of this illness.
    It kind of takes the meaningfulness of our lives especially when we are bed bound with nothing to do. That's the time that our minds are our worst enemies. This is one of the reasons I started this thread is to try to make sense of this situation and to figure out how to cope.
    Are you able to write or type a little. I was told and it works for me (sometimes) to write down all the things that are in my mind. Going through all the pains of the past. Don't be shy - it's only for your eyes and just write things that pop in your head. There is a healing element to this. Somehow, once it's written down, it's like it doesn't have to
    be in your brain any longer. Of course, you can also add some positive thoughts (if you can find any). Maybe positive thoughts that normally you would not think of.
    You can also have a section where you would write things that you possibly could look forward to, if and when you start feeling better. This will bring a shift in your brain and you might notice that there might be things in the future that will bring you happiness.
    One more advice that I can give you, is to try to do something special for yourself every day. No matter how small. It will make you feel nurtured. Whether it's taking a nice long bath if that's a possibility for you. Read a funny book. Watch a funny movie. You need to learn how to nurture yourself. You are an integral person with very valid feelings.
    Also, I would try to take baby steps and only worry about one thing at a time. It becomes totally overwhelming when we become obsessed with the past and how we have failed and are not productive. It becomes the elephant in the room. If you try to minimize it as just one thought at a time, it's easier to cope with.
    I am not sure if any of this advice will help but, I can assure you that many times, I have felt the same way and if we let it take over our life, it is very stressful and can compound the severity of the illness.
    Thanks for being so frank.
    I wish you better health and peace of mind.
    Gabby

    ps. A wise person once told me to close my eyes and imagine a very large trash can on your side and one by one throw these destructive thoughts into the can and then close the lid. It sounds very simplistic but, it works for me.
  4. Mr. Cat

    Mr. Cat Senior Member

    Messages:
    122
    Likes:
    91
    Nothern California
    Hi Mary,

    Your experience sounds very familiar to me. I had to give up meditation for several years because my mind just couldn't handle it. Luckily for me, the brain fog that rolled in and made me have to rest was mentaly and emotionally numbing, so I had less of all kinds of thoughts and emotions, including negative ones. Thought- and breath-watching was way too exhausting for me, but I did spend a lot of time just being aware of how my mind and body were feeling as I was resting. Not being vigilant about it, just gently noticing my experience. During a time when I was taking a lot of naps and feeling sort of cheated by this, I had an interesting positive reframe: "Hey! I like taking naps! It is relaxing and nourishing. There are much worse ways I could be spending my time, and I get to nap more than most people I know!" What was I missing out on? Being awake and tired? From then on, I enjoyed taking naps a great deal.

    You said that you just noticed this week how you habitually go into negative thinking. Though its bothersome, it seems just that by being aware of this, you have already begun to turn the corner. The quicker we are aware of these negative thoughts, the less time they have to dig in and convince us that they are true. When I'm tripping on negative thoughts and they just won't go away, journaling helps.
  5. Nielk

    Nielk

    Messages:
    5,070
    Likes:
    4,579
    Queens, NY
    I have been asking God why he feels the need for me to go through unbearable pain - time and time again.
    To be very honest, I can't find an answer. Moreover, I have been bought down to my knees where I feel I have lost the fight in me.
    I desperately have been searching for an answer to satisfy my soul and have failed.
    I am sick of all the slogans: What won't break you will make you stronger - God only tests the ones He knows can overcome the adversity.
    I don't think it's true. I think I have reached my point of no return. The constant pain and suffering have taken a tremendus toll on me and I am not the person I would like to be any longer. I am broken. I just don't know how to fight this any longer. I am too weak and tortured. I don't feel there is any more lessons for me to learn from being in this state.
    There is no meaning to my suffering which brings it to the level of it being unbearable.I don't know that there is anything more I can do. I have prayed and begged. I have tried to put things right with the people who are important to me. I think that some short term suffering can probably bring more appreciation of life and what is important but, constant torture is bound to break the person eventually. I have shed too many tears. I have been bought down to my knees. I have seen the pain that my illness causes to the people who love me and I don't like it. I just have no more strength to fight any longer.
  6. Mandala

    Mandala

    Messages:
    12
    Likes:
    8
    Edmonton, Canada
    Hi Nielk,
    Im writing this 1:30 a.m. MST because I just want you to know Im out here and I really hear your anguish. I also want to say that Im familiar with that terrible question of why, why with feeling only silence coming back.

    First, I do feel compelled to say that I remember a previous post of yours describing your physical pain, and I dont know if you have a physician who is well-trained and up-to-date in pain management. I know from experience that relentless and/or severe pain is simply horrendous and brutalizes ones spirit. Do you have any help for this or are you trying to suffer it out on your own?

    I also wonder if you can find a way to just hold on to one thing right now: something in your memory or around you to focus on, something of comfort or beauty, to give you some respite from your immediate crisis and to help calm your spirit. I say one thing because it sounds like you are very overwhelmed right now.

    I hope you dont mind me saying that I noticed in your post how much you are striving. I noticed all the active verbs: asking, searching, fighting, learning, praying, begging, putting things right. I am wondering (in my own life too) if these are necessarily the ways in which meaning emerges?

    You mentioned that you ask God why he feels the need for me to go through unbearable pain- time and time again. I am curious to know whether your religion images God as a figure who feels that need, or whether it is your own interpretation. For myself, suffering is necessitating a re-examination or a new awareness of my image of God. I will say more about that tomorrow when my mind is clearer and after I hear more from you about what I wondered, for I want to choose my words carefully... Meanwhile, blessings even in your suffering.
  7. Nielk

    Nielk

    Messages:
    5,070
    Likes:
    4,579
    Queens, NY
    Hi Mary,

    Thank you for your caring reply.
    I am a deeply religious orthodox Jewish woman. I was born into this legacy and my life revolves around it. I believe that everything is from God. I also believe that God is good.
    That is my impetus for my searching. I know that nothing just happens. Yes, I have at times torturous suffering. I get migraine/sinus constant severe pains for weeks. I do take pain killers but they hardly touch the surface. At those times even with strong sleeping pills, I don't sleep well and am so overtired. The pounding in my head though is what I can't bear. My instinct tells me that this is a message from God and that's why I am searching. You are correct when you say that I am in a crisis state. All I can do is cry and pray. I hate being this way. This is not the real me. I just don't know how to be me anymore.
    I have my family and that's a reasn to hold on but, I don't think I'm doing them a favor - watching me suffer like this.
    My religion teaches that everything is from God although we have free will to act as we chose. We have to have faith that everything that is handed out to us is for our benefit in our soul's journey on earth. Am I trying too hard to find meaning? maybe but, I don't know what else to do? Suffering is very painful but, meaningless suffering would be unbearable to me.
  8. madietodd

    madietodd Senior Member

    Messages:
    2,391
    Likes:
    1,548
    East Coast, USA
    Nielk, I am so terribly sorry. This is awful, and I wish I had something useful to add, beyond hugs and support.

    Like Mary, I wonder if you have a pain specialist on board. Maybe some meaning will come from the journey of seeking deeper relief, or be found in some people you meet in that quest.

    Madie xo
  9. Mandala

    Mandala

    Messages:
    12
    Likes:
    8
    Edmonton, Canada
  10. Mandala

    Mandala

    Messages:
    12
    Likes:
    8
    Edmonton, Canada
    Thank you, Mr. Cat, for your thoughtful reply. I'm SO glad you said my issue sounded familiar; that is a great comfort to me. I am just going to put meditation on the back burner for now: such a relief. I do have days of brain fog during which I cannot think but feel wretched. I'm going to try just gentle noticing of how my body's feeling then. I do journal every day but it becomes repetitive, a recounting of misery. Perhaps I can inject something different, I don't know.
    I was startled by your reframing of nap-taking, but the more I thought about it, the more sense it made. This evening, for example, resentful of the need to lie down for a while, I thought of how glad I am that I am free to rest. And then I noticed the lovely moon and the first star out the window, it was just them and me, and I felt fortunate. Even the bare trees looked beautiful. In that moment, there was nothing more I wanted, despite my illness and isolation. It was a strange new feeling. The possibility of changing perceptions fascinates me, so I am really grateful that your response to my post is helping to open that door. And your question "What am I missing out on?" is quite profound. When I really think about it, I am glad to not be doing a lot of what occupied my time pre-illness. Not that I wouldn't love to be welll, but I seem to be realizing that what is most important for me is strengthening a quiet place inside that I glimpse once in a while, that is beyond what is happening to my body and mind. It's new terrain for me.
    So a big thank you to you. And I hope what I'm posting is appropriate for this spirituality thread.... Mary
  11. Mandala

    Mandala

    Messages:
    12
    Likes:
    8
    Edmonton, Canada
    Hi Neilk,
    I really appreciate your explaining more about your spiritual life, and I can understand even more now why you yearn so intensely to know the meaning of your physical suffering. I too reflect on the spiritual meaning of suffering, yet I am not sure that this meaning likes to come in response to striving or active searching, etc. And while you experience the suffering as coming from God, is there room for seeing that what also comes from God is the availability of much better management of physical pain than you currently have, which has developed as the result of the work of dedicated chemists and pain medicine specialists. I do believe that there is a level of physical pain that can be damaging to one's spiritual efforts, and that we must seek ways to ameliorate our physical suffering.
    I speak from experience here, as I have another medical condition which involves severe neuropathic pain in my lower limbs and feet, a very difficult form of pain to treat. I ended up disabled because I resisted serious pain medication for a long time due to my lack of understanding of what is possible (worrying about addiction, feeling I was not being strong enough, not wanting to give in to it, etc.). I did not know then that insufficiently treated pain can continue to amplify itself so that you just keep getting more and more worse pain. A well-trained pain medicine specialist has much to offer that other specialists do not know about, and surely what they offer is a gift from God that relieves human misery, a gift that you can use your free will to choose. I had to search to find a good one, but they are out there, and I can say that mine probably saved my life.
    This is why I urge you to seek help from such a specialist. The clamour of pain in your head needs soothing so that spiritual meaning may have the space in which to emerge. Best wishes, Mary
  12. Nielk

    Nielk

    Messages:
    5,070
    Likes:
    4,579
    Queens, NY
    Hi Mary,

    What a great reply. Thank you.
    Yes, you are right that I need to find a better solution for dealing with my physical pain. You are also right, and I am keenly aware of it, that when is in pain it impedes their spirituality which for me just compounds my pain. I need to get this pain under control.
    I am very much a believer in the synchronicity of life.
    This past Sunday, I heard about a Kabballah Rabbi who was in town from Australia. He was going to give a talk in my community that evening. I called him (on an instinct) and
    he agreed to meet me privately that afternoon. It was an eye opener for me. He was very down to earth and practical. I can sense his deep spirituality through his eyes.
    I have since bought his book "Practical Kabbalah" and am reading it now. It resonates so well with my soul.
    One thing that really touched me (to tears) that he writes about is that every being has a specific purpose in this life form and most of us don't know what it is. It might be very small, like doing one good deed to help someone else. One can live a whole life and just have that one moment of fullfilment of the soul which was their purpose.
    The reason I was so touched by it is because I have been searching for a higher purpose of my life and the difficulty achieving it while being so incapacitated by this illness.
    I was seeking too much (as you mentioned, Mary). I realize now that each one of us here on this forum might have had their purpose fullfilled by way of helping each other and suporting each other. It might just have been one kind word that eased someone else's suffering. This one word might have the same weight as someone else performing good deeds their whole life. Especially, in our limitations and suffering, if we are able to do one small act of kindness we might be changingthe whole cosmos of the world.
    Words are very powerful. Written or expressed orally. They become part of the energy that surrounds us and we don't realize that by every act or word, we are changing the cosmos. In Hebrew it's called "tikkun haolam" - tikkun: changing for the better, haolam: this world. Tikun haolam is our purpose in life.
    Thanks Mary and all the others for helping me on my journey!
  13. Wayne

    Wayne Senior Member

    Messages:
    2,167
    Likes:
    1,230
    Ashland, Oregon
    Pain Management

    Just a short note this morning, as I'm getting ready to leave Arkansas Friday morning and make my way back to Oregon. Checking in this morning Nielk, I was happy to see you back here posting. And I've enjoyed the many very caring and thoughtful replies that seem to consistently show up on this thread. I've only read the past 4-5 posts, and very much appreciated the posts by yourself, Mandala and Mr. Cat.

    Nielk, regarding pain management: A friend of mine went to a pain specialist at one point and finally got on an effective pain management program using opioid medications. For the first several weeks, she slept almost around the clock. Though this was concerning, her doctor assured her that once she caught up on her years of chronic sleep deprivation, normal sleeping patterns would resume. I believe it took about four weeks.

    I've also heard that chronic pain can very hard on the brain and neurological system. I won't go into detail, but just wanted to mention that Mandala's suggestion, and your intent to seek out a competent pain specialist seems like a very good path for you to follow at this time. I wish you the very best as you move forward on this.

    Warm Regards, Wayne
  14. u&iraok

    u&iraok Senior Member

    Messages:
    151
    Likes:
    27
    U.S.
    I hope you don't mind if I quote you on this, in line with Hebrews 3:4, "Of course, every house is constructed by someone, but he that constructs all things is God." It's nice to have this point of view from someone with an engineering background who understands complexity in design.

    I'm sure you must be interested in Biomimetrics, the study of the structure and function of biological systems as models for the design and engineering of materials and machines.
  15. Nielk

    Nielk

    Messages:
    5,070
    Likes:
    4,579
    Queens, NY
    suffering is hard to take
    when all you're feeling is ache
    will there be an end to this?

    head aching and sore
    feeling like just laying on the floor
    will thre be an end to this?

    dizzy while standing
    no more steadt walking
    will there be an end to this?

    do you know how I feel
    it is all so real
    will there be an end to this

    sleep does not come easy
    I feel so too tight and uneasy
    will there be an end to this?

    I feel like a zombie
    from the drugs combie
    will there be an end to this?

    I wish i could think clearly
    I'm yearning dearly
    will there be an end to this

    I feel so lonely in the world
    when I'm in bed all curled
    will there be an end to this?

    Am I still the same me?
    I don't know, I agree
    will there be an end to this?

    I wish for the days long ago
    when I was free to come and go
    will there be an end to this?

    If there will be an end
    what will it be my friend
    can you tell me in earnest?
    madietodd likes this.
  16. Mandala

    Mandala

    Messages:
    12
    Likes:
    8
    Edmonton, Canada
    I just wanted to say that I am making progress at ensuring that my rest times are not vacuums into which problematic thinking can fall willy-nilly (at least, I catch myself sooner)! Instead, I am using the time to give thanks for what I do have. It is amazing what I come up with, even if I just consider the time since rising. There are no end of unknown people to thank, from those who grew or made the food I eat, to those who built the roof the roof over my head. I also give thanks for the wonders of past experiences in nature, and ask for blessings on those researching this illness. I find this to be a restful activity that doesn't require hard thinking, more like musing, and I seem to rise from these rests more restored, or calmer, than before.

    I am also experiencing that a central spiritual task required by this illness is that of letting go. I don't mean grieving for losses (which I do think is essential), but a surrendering to what is in the present moment. In truth, I am finding that the only way I can cope with this illness is to stay focused as much as possible on the present moment; even if it is awful, it will pass.

    I hesitated to include these comments in a spirituality thread, but to me they are much more than ways of coping; they feel like spiritual tasks that have meaning in that they further my spiritual development.
    illsince1977, madietodd and Wayne like this.
  17. Mandala

    Mandala

    Messages:
    12
    Likes:
    8
    Edmonton, Canada
    Hi Neilk, I do think this is a crucial spiritual question we need to pursue (as in previous posts in this thread about who are we beyond actions, roles, identities in the world, etc.). It's an ongoing process of contemplation. This is where I'm being taken spiritually, I think, into the realm of contemplation. And finding meaning in being. It sure isn't easy, though!

    I hope you are able to pursue better options for pain control these days, and not suffering physically as much.
    Ember likes this.
  18. Nielk

    Nielk

    Messages:
    5,070
    Likes:
    4,579
    Queens, NY
    I just received this e-mail and wanted to share it here. Tonight is the first night of chanukkah for those that celebrate it - HAPPY CHANUKAH!
    I think this is really a universal insight for everone.
    I have been in a dark place now for a while, this message of en- lightenment, bringing light into our lives is spiritually enhancing.
  19. Nielk

    Nielk

    Messages:
    5,070
    Likes:
    4,579
    Queens, NY
    Again, a great post Mandala.

    You talk about surrendering, living in the moment and whatever it is, it will pass. It's great advice. I have read a lot about this. Most recently in the book "How to be Sick" by Toni Bernhard,
    she has a lot of advice of how to cope, accept and even thrive while being sick.

    I am a big believer in destiny. I believe that if we listen to our intuition, we will be led on the right path. There is synchronicity and meaning to everything that happens.
    It very well could be that my destiny is to suffer for the past 10 years and maybe who knows how much longer. I also know that we are exoected to do whatever we can on this earth to make it a better place and to take care of ourselves. "God only helps those who help themselves".

    It seems to me and this is especially true lately, that whatever steps I take to try to get better, it falls back on my face. (Hence my signature saying - which I made up) Whatever I have been trying wether new practitioners, change in medications, addition to my supplements have made me worse. I am in a much worse place than I was a year ago. I have been burned by so many practitioners and everything that I try is making my condition worse. It's not that I' am not accepting the fact that I am ill but, I think that I owe it to my body to try everything I can to improve my situation. Obviously, it is not working for me! (Dr. Phil:). So, I'm left thinking what am I doing wrong? Should I just lie down and do nothing to improve my health? Should I just give up? I guess I wouldn't be in a worse situation than I am now. At least, I will save money and aggravations. Yet, in my mind, the second I stop looking for answers is the time that I lose hope. If I lose hope, I don't think I can handle that. I have been trying to spiritually elevate myself and hope that my body will react positively but, it's not working for me.
    Maybe I'll have a better day when I feel spiritually connected but, it doesn't last because I'll start developing more pain or a new symptom and everything else goes out the window.
  20. ahimsa

    ahimsa Senior Member

    Messages:
    1,004
    Likes:
    808
    Oregon, USA
    Although I do have my own spiritual beliefs I don't claim to have any spiritual insight. Nor do I feel qualified to comment on how suffering might make someone into more spiritual person. So, I'm a bit nervous about making a comment on a thread with this title.

    However, I do feel that it is sometimes helpful to share experience on practical matters. I hope my comment is not too much of a tangent. If so, then please ignore this and continue on--thanks!

    It may be just an unintended choice of words on your part but "lie down and do nothing" is one of the specific items on my "to do" list to improve my health. (see my signature! :angel: ) Also, in addition to the well known tip of taking extra rest as needed, sometimes I simply take a break from seeing doctors for a while. So, that type of mental/emotional rest from the stress of seeing doctors might be seen as "doing nothing" but, in my opinion, it can be a positive and helpful thing to do.

    I think that taking a break to rest and re-group is not the same thing as giving up all hope of getting better.

    Here's an analogy that makes sense to me. Most people have to wait a long time to save up money before they can afford to purchase a home. It may look like they are doing nothing but they are putting the money into an account until they can afford to buy the home. In a similar way, maybe we can look at a rest period as saving up the needed energy before we take another stab at trying to research a new treatment or trying to find a helpful doctor.

    One last philosophical comment which may turn the thread slightly back toward a spiritual focus.

    Acceptance is not the same as giving up.

    Giving up is about the future. Acceptance is about the present. I don't know the future so how could I ever accept the future? I can only accept my present situation. In fact, since nothing stays the same forever (eventually we all die), my situation is guaranteed to change at some point. The future has all kinds of possibilities, both good and bad. I might find new treatment that helps me a lot. Or I might contract a completely separate illness. Or I could be in an auto accident. And on and on....

    My goal is to try to improve my situation, in other words, take actions that will bring me positive results in the future. At the same time, I try to have some level of acceptance (vs. denial) of my present situation. Acceptance does not mean that I have stopped trying. I still try to do my best to change things. But at the same time I realize that it helps me to look at things realistically and accept my current level of functioning.

    Okay, enough rambling...

    :hug: SENDING LOTS OF HUGS! :hug:
    Lou and Nielk like this.

See more popular forum discussions.

Share This Page