Suffering and spirituality 2

[Nielk]

Who are your guides, Allyann?
I find when I'm feeling better, I can basically trust my intuitions. When I'm crashing, I can't go there, There is nothing but pain.

 

[Mary Poppins]

Allyann, I think some special Auntie and neice time sounds lovely, much better for the two of you than a brief catch up at a party with all her friends and lots of other distractions there.

Was your specialist a ME specific health professional? It seems a pretty irresponsible thing to say to a patient. I'm sorry that it was said, it's very rude. *hugs*

 

[allyann]

Thanks Nielk,

I have several guides. Lord Mount Battin sticks his head in when I need some strength or battle plans, another I know as Master is an mystic from early Elizabethan times who helps me understand my mystic abilities, my great Grandmother who apparently had some psychic abilities and some of the Archangels also pop in on occasion. I have also had a couple of wonderful conversations with a guide known to me as Teacher. He came to me first when I was a teenager and I was looking for my way in the Church I used to belong to. He last came to me the day before I had my accident in Turkey telling me that I would be safe.

I too find it hard to hear them when I've crashed. I just take reassurance that they are there and that they will guide me without having to talk to me. Sorry to hear that you have not been having a good trot with the crashes. Thinking of you

 

[allyann]

Thanks Mary Poppins,

Yeah my specialist is good, but older and was still relying on CBT/GET. His reasoning being I have had ME/CFS for a reality short time so they can help reset the body. My theory is that he trys to eliminate those who don't suffer the ME component first. Unfortunately I have gotten a lot worse trying to do GET. He has since sent me to a sleep specialist who diagnosed cyclic alternating pattern and I will see a POTS specialist after the baby is born. I guess we all suffer the same when it comes to doctors. Not sure I entirely blame them it is a confusing illness with no real tried and proved methods of treatment. It must be hard for them to keep up with all the new theories.

 

[allyann]

Does anyone have some good guided meditation CDs they recommend? I'm bored with mine at the moment

 

[Dreambirdie]

Hi Allie--

I have a DVD of Rodney Yee's called Relaxation and Breathing for Meditation. I really like the series of breathing exercises, which is about 25 minutes long. Rodney Yee is one of my favorite yoga teachers, and I find this DVD to be very soothing and relaxing. http://www.amazon.com/Relaxation-Breathing-Meditation-Rodney-Yee/dp/B000094J6K Here's a sample of it from youtube. http://www.youtube.com/watch?v=wFnocl-Obg0

I also have a CD of Candace Pert's called Psychosomatic Wellness. It has a guided meditation and a series of affirmations. I don't use it much anymore, but I remember that I liked it when I did. http://www.soundstrue.com/shop/Psyc...oductdetails?gclid=CNa2habalawCFQ40hwodvWXevg

 

[allyann]

Thanks Dreambirdie, I will check them out

 

[Mandala]

About Enduring

They say: "Do net let this illness define you"

It always made sense to me. We are so much more than this cruel disease. We are caring, feeling, loving human beings. Yet, I am having a very hard time with it lately. The reason being that I feel I can't be myself when this illness puts so much limitations on me. I want to paint because I define myself as a painter but, I can't lately - I'm in too much pain. I define myself as a caring, giving person. My grandchildren are off from private school this week and I know my daughters needed me to help watch them I couldn't. I was in too much pain. I define myself as hospitable. Another two day Jewish holiday is starting tonight. I want to invite my family over - I can't. I'm in too much pain. I define myself as a compassionate person. A neighbor is in the hospital, in bad shape. I want to go visit her. I can't. I'm in too much pain. I want to write uplifting comments on this thread which i started for that purpose. I can't. I'm feeling too down. I feel like this illness is robbing me of "my self" I don't need sympathy. I know all of you are going through similar or worse things. I'm just saying, I have a hard time lately "not" having this illness define me, because I feel that there is nothing left.

Neilk, I'm sorry I didn't see your post sooner. Your sorrow at what you yearn to but cannot do has really touched me. Through sharing your suffering, you offer me a mirror to see that someone knows my own suffering, which is a great gift. There is no avoiding that sometimes we just suffer and nothing helps. These are ancient issues regarding suffering. I read something that contained a quote from Lamentations (Old Testament) that there are times of suffering when all we can do is "put our mouths to the dust and wait." It sounds awful, but it is true. All we can do or be is to wait, to endure.

In a bad crash, lying on my couch alone, eyes closed and unable to listen to anything, I feel reduced to nothing but animal body and breath. Then all I can do is put my hand on my belly and watch myself breathe. All I can think are the words "please help me." I try to comfort my frightened, suffering soul. That is how I endure. And sometimes I have a strange thought, that God does not inflict our suffering on us, but in that sunken wordless state, s/he is present, silent, bearing witness.


Regardless of what you cannot do with or for others in your life, you remain "hospitable" "caring" "giving" and "compassionate" here, where we too need you. And you were the one who reached out to me after my first post, who welcomed me and encouraged me and gave of yourself to me in your reply, when I was afraid and felt like a stranger entering a group of close friends. I wouldn't be writing this post without that. As for your not being able to paint at present, you still shared with us the image of your suffering self in that self-portrait, another mirror that comforted me through its recognition of suffering. The painter shares as well as creates.

I do hope you are feeling better soon.

I wish I could figure out how to send those cute hugs! Oh, maybe I did!

Mary (Mandala)

 

[Nielk]

Neilk, I'm sorry I didn't see your post sooner. Your sorrow at what you yearn to but cannot do has really touched me. Through sharing your suffering, you offer me a mirror to see that someone knows my own suffering, which is a great gift. There is no avoiding that sometimes we just suffer and nothing helps. These are ancient issues regarding suffering. I read something that contained a quote from Lamentations (Old Testament) that there are times of suffering when all we can do is "put our mouths to the dust and wait." It sounds awful, but it is true. All we can do or be is to wait, to endure.

In a bad crash, lying on my couch alone, eyes closed and unable to listen to anything, I feel reduced to nothing but animal body and breath. Then all I can do is put my hand on my belly and watch myself breathe. All I can think are the words "please help me." I try to comfort my frightened, suffering soul. That is how I endure. And sometimes I have a strange thought, that God does not inflict our suffering on us, but in that sunken wordless state, s/he is present, silent, bearing witness.


Regardless of what you cannot do with or for others in your life, you remain "hospitable" "caring" "giving" and "compassionate" here, where we too need you. And you were the one who reached out to me after my first post, who welcomed me and encouraged me and gave of yourself to me in your reply, when I was afraid and felt like a stranger entering a group of close friends. I wouldn't be writing this post without that. As for your not being able to paint at present, you still shared with us the image of your suffering self in that self-portrait, another mirror that comforted me through its recognition of suffering. The painter shares as well as creates.

I do hope you are feeling better soon.

I wish I could figure out how to send those cute hugs! Oh, maybe I did!

Mary (Mandala)

Hi Mary,

I am so touched by your empathy and soothing words! It has come at a very important time for me. Like an angel. I agree with everything you say. Sometimes that's all we can do to weather the storm, is to just wait it out. Just like you, I keep whispering "please help me". I don't believe that "our prayers" are not heard. I agree with you that God is right there with us. I don't know why we have to go through this pain, but I accept it. Like Job, I feel I have to bear it and wait it out. It's so much easier though on better days. I also am grateful for your acknowledgement of my drawing of pain and the fact that it helped you.
You have given me a gift of validation for my feelings which is so crucial!

I wish you better health and please don't hesitate to post on this forum. we are kind of a family that helps each other. You are a very sensitive soul and have a lot to offer.

 

[Mary Poppins]

Mary/Mandala, what a beautiful post. Thank you.

 

[Dreambirdie]

They say: "Do net let this illness define you"

It always made sense to me. We are so much more than this cruel disease. We are caring, feeling, loving human beings. Yet, I am having a very hard time with it lately. The reason being that I feel I can't be myself when this illness puts so much limitations on me. I want to paint because I define myself as a painter but, I can't lately - I'm in too much pain. I define myself as a caring, giving person. My grandchildren are off from private school this week and I know my daughters needed me to help watch them I couldn't. I was in too much pain. I define myself as hospitable. Another two day Jewish holiday is starting tonight. I want to invite my family over - I can't. I'm in too much pain. I define myself as a compassionate person. A neighbor is in the hospital, in bad shape. I want to go visit her. I can't. I'm in too much pain. I want to write uplifting comments on this thread which i started for that purpose. I can't. I'm feeling too down. I feel like this illness is robbing me of "my self" I don't need sympathy. I know all of you are going through similar or worse things. I'm just saying, I have a hard time lately "not" having this illness define me, because I feel that there is nothing left.

Nielk--Thank you for articulating so clearly what's it's like for you to be in the throes of this "cruel disease." Really beautifully expressed. I understand, and can relate to that feeling of being taken hostage by my symptoms. It's a dreadful feeling and I can empathize with the despair it brings up for you.

When I feel like this, I often get in a tub of warm bath water and wail. I release all the discomfort and pain that I feel in my body through sound... chanting, moaning, wailing, singing pieces of blues songs, and what sounds like Native American chants. I see the pain and dis-ease as a murky grey black cloud inside me that I try to blow out of myself through sound. Sometimes it takes me an hour to get it all out, and when I am done I feel some measure of relief. It doesn't make me all better of course, but there is some kind of power expressed by my voice that seems to defy the depths of the despair and disease, and that reminds me that I am more than this pain, this grief, this endless suffering.

 

[Nielk]

Nielk--Thank you for articulating so clearly what's it's like for you to be in the throes of this "cruel disease." Really beautifully expressed. I understand, and can relate to that feeling of being taken hostage by my symptoms. It's a dreadful feeling and I can empathize with the despair it brings up for you.

When I feel like this, I often get in a tub of warm bath water and wail. I release all the discomfort and pain that I feel in my body through sound... chanting, moaning, wailing, singing pieces of blues songs, and what sounds like Native American chants. I see the pain and dis-ease as a murky grey black cloud inside me that I try to blow out of myself through sound. Sometimes it takes me an hour to get it all out, and when I am done I feel some measure of relief. It doesn't make me all better of course, but there is some kind of power expressed by my voice that seems to defy the depths of the despair and disease, and that reminds me that I am more than this pain, this grief, this endless suffering.

Hi DB,

Thanks for your understanding and empathy! I really like what you describe as a coping mechanism and release. What I end up doing is sobbing a lot to myself. It brings some release bu, not enough. What you describe, seems so much more powerful and probably acts as a much stronger release. My weakness, I feel has always been not using my voice enough. It probably stems partly from my upbringing and partly from my shy personality. I rarely raise my voice. Even when I'm angry or enraged, I just can't get to scream. I don't think that it is a good think. I think were I able to scream, it wold be a much healthier release. I do sing soe of my favorite Hebrew prayers which are comforting but I like the description of your African chants. With their beat, they can probably be very healing.
Thanks for your advice,
Nielk

 

[meandthecat]

Wow Mr Cat you take the words from my mouth, even down to Maslow whom I used to think of in developmental terms till I realised that he was describing the here and now. I don't know how far along this path you are, I have come to a point where I feel that I am emerging from ME-think and re-engaging with 'Life' but there is a huge gap where my sense of the spiritual once was. It's not just out of reach like my higher cognitive functions, which I can glimpse in the distance on a good day; what I once found compelling I can no longer give credence to.
It's a battle to retain a sense of otherness in this remorselessly materialist culture but it seems more than that. I lost much of my memory and as I recover it's as if the bits that come back assemble themselves differently and I am given an opportunity to transform myself into more of the person that I would like to be. It's not as if the memories are shorn of emotion, just that I don't feel compelled to respond as I once did.
I have read some pretty amazing stuff on this site over the years and had always felt that this illness held the potential for transformation or even transcendence; and on a good day, I still do.

 

[Mary Poppins]

Nielk--Thank you for articulating so clearly what's it's like for you to be in the throes of this "cruel disease." Really beautifully expressed. I understand, and can relate to that feeling of being taken hostage by my symptoms. It's a dreadful feeling and I can empathize with the despair it brings up for you.

When I feel like this, I often get in a tub of warm bath water and wail. I release all the discomfort and pain that I feel in my body through sound... chanting, moaning, wailing, singing pieces of blues songs, and what sounds like Native American chants. I see the pain and dis-ease as a murky grey black cloud inside me that I try to blow out of myself through sound. Sometimes it takes me an hour to get it all out, and when I am done I feel some measure of relief. It doesn't make me all better of course, but there is some kind of power expressed by my voice that seems to defy the depths of the despair and disease, and that reminds me that I am more than this pain, this grief, this endless suffering.

You're fabulous, DB.

 

[maddietod]

I have read some pretty amazing stuff on this site over the years and had always felt that this illness held the potential for transformation or even transcendence; and on a good day, I still do.

Yes, well said. When I rise up out of a period of hauling my body through the days, having protected my oversensitive brain and emotions from every possible stimulation, yes. I get out with a friend and notice that I ask better questions and listen more deeply. Compassion is easier to access, and that generalized anger that attaches to individuals (eg. people who don't think I'm sick) is gone.

In those times when I come up out of the suffering, I can't be bothered any more with things that make me feel bad, that I can't control. It's a 'Life's too sort' feeling, and it seems to be a permanent part of the landscape, when I feel relatively well.

I think this is a direct result of the suffering.

 

[Nielk]

I agree with both with meandthecat and Madie but, it's not unique to chronic fatigue syndrome. I think any illness, loss or trauma leaves the person more aware of the fragility of life and therefore a deeper sense of appreciation for everything.

I am a child of holocaust survivors. From the time that I have memories (which is only from age 10 - don't know why), I was keenly aware of the fragility of life and the importance of awareness and appreciation of what we do have. I lost many ancestors in that horror and it has become part of my DNA.

In addition, when I was 15, I contracted Crohn's disease which was pretty severe. i was hospitalized many times for a week or two at a time. I was a teenager but placed on the regular adult floor. I remember seeing so much suffering! Each time I came out of the hospital, I felt like I got a new lease on life. I couldn't understand how all these healthy people walking around, don't realize the gift that they have. I guess I had to grow up very quickly.

I guess any type of suffering makes one more aware not to take things for granted. Like the old saying "you don't appreciate something until it's taken away from you."

 

[Nielk]

Love this song of hope
http://youtu.be/ZINnbP08Kzs




English translation:

Give me the fire penetrating me, breathing,
Burns to the depths of my heart
Give me the spirit, that never stops,
Sand is write my name

Give me the window to see all the glory,
Came to light my way,
That has been dark, I shut the door,
Slipping back into my bed

Let me again tomorrow where I was able to return on time,
I was close
Give me tomorrow it could change everything,
Let me re-write the end of the story

That if you give, then I could imagine,
Then I can break the walls of my loneliness,
That if you give, so I compromise,
Burn and burn the brown silence

 

[Nielk]

Just wanted to share this Native American story I just read in a book:

A chief is talking to his tribe about two dogs inside his mind: one a white dog that is good and courageous, the other a black dog that is vengeful and angry. Both dogs are fighting to the death. A young brave, unable to wait for the end of the story, asks, "Which one will win?" The chief responds, "The one I feed."

I felt that it was such a powerful statement that I wanted to share it here

 

[Mr. Cat]

They say: "Do net let this illness define you"

It always made sense to me. We are so much more than this cruel disease. We are caring, feeling, loving human beings. Yet, I am having a very hard time with it lately. The reason being that I feel I can't be myself when this illness puts so much limitations on me. I want to paint because I define myself as a painter but, I can't lately - I'm in too much pain. I define myself as a caring, giving person. My grandchildren are off from private school this week and I know my daughters needed me to help watch them I couldn't. I was in too much pain. I define myself as hospitable. Another two day Jewish holiday is starting tonight. I want to invite my family over - I can't. I'm in too much pain. I define myself as a compassionate person. A neighbor is in the hospital, in bad shape. I want to go visit her. I can't. I'm in too much pain. I want to write uplifting comments on this thread which i started for that purpose. I can't. I'm feeling too down. I feel like this illness is robbing me of "my self" I don't need sympathy. I know all of you are going through similar or worse things. I'm just saying, I have a hard time lately "not" having this illness define me, because I feel that there is nothing left.

Nielk,

I think so many people are quoting you on this because this experience is so common, and painful. None of the personality attributes I like to use to define myself apply to me when I am in a brain fog crash. My partner just left me last week because I was no longer the vibrant and alive person I was when she met me (in a period of remission). CFS crashes changed my personality by making me less energetic, more inward- and healing-focused, and less able to connect with others. That sucks, because that is not the personality I would choose for myself. I would love to define myself as someone who is vibrant and alive, even on some hidden level, but without the right neurochemicals, I'm just not. In my worst crash state, I don't do any of the interesting things that I would like to define me, nor do I have very interesting thoughts, dreams, ambitions, desires. I have been many things in my life, and the foggy state is just another one, in which nothing much happens.

Not too long ago, I was in an incredibly uncomfortable state, in which neither my brain, nor my mind, were working very well at all. And yet some part of me was witnessing, with clarity, my brain and mind not working. It was an ah-hah moment, and I began to have "Who am I, really?" thoughts about this witnessing consciousness. I still see CFS as an "anti-spiritual" disease in many ways, but it is also a humbler and an ego/personality-killer. Who/what are we really when so much is stripped away?

 

[Ember]

I still see CFS as an "anti-spiritual" disease in many ways, but it is also a humbler and an ego/personality-killer. Who/what are we really when so much is stripped away?

Perhaps we're all en route to becoming Zen masters!

I'm sure you don't need the biology lesson shown here, all about how well our bodies, brains and minds (not to mention cells) work automatically. But I hope your computer will at least do a better job than mine of playing the Vivaldi: (http://www.youtube.com/watch?v=E9BBy3aidRE&feature=youtu.be).

Thanks for your post.