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Im sad

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Shrewsbury,

Sorry to hear that you're feeling sad, but it's good that you can reach out to communicate those feelings.

And there must be so many members who feel just the same, but are unable to express themselves

But that's what this forum is all about - reaching out & touching other people.

Initially on this forum, I PM'd & emailed regularly, but eventually I ran out of steam (& words) to say how much I cared.

I guess my days have now shrunk too. My whole world is smaller now, but that's ok with me.

So, take today & maybe a few more days to be sad & know that there'll always be other days of hope & comfort.

Life is one big roller coaster.

You're just on the downward slope at the moment, but I know the ride will turn & I hope you'll feel better soon.
 

helsbells

Senior Member
Messages
302
Location
UK
How timely,
I am going through one of my worst times for a good long while and actually wrote a poem last night about loss and being in mourning for myself (I mean the poem sucks! Brain fog doesn't make for good poems) but it was exactly the theme, being a ghost in my own life - most days I keep my focus small deliberately but last night I just had this moment of understanding and grief.

Love and kindness to all here.
 

leelaplay

member
Messages
1,576
What inspiring insightful posts. I guess this is why I shared my sadness. I knew you'd "get it" in both senses of the meaning.

Tears are infrequent for me, but as I wrote my initial post, my face was covered with a sheath of tears. And again, when I read your posts. Definitely healing.

Laura, Otis, Shane and gracenote – I so agree that it’s really a cycle of loss, mourn, adjust/adapt and then reaching a new level of acceptance.

Shane – what a tough one re your wife right now. You know, I think we’re a bit like war-hardened veterans. We get used to our lives, & living with this disease becomes our new “normal”. Then every once in a while, some thing, awareness, event.... reminds us that this is NOT normal for the average healthy person, or for us pre-disease , and gets under our toughened skin, reminding us afresh of what a stinker this disease is, and of our losses & hardships while the wound is exposed for a bit.

And thank you gracenote – I do find comfort around and within myself – even within my tears. I hope the same is true for all here.

Esther12, Greggory and starryeyes – I know what you mean about how people tend to avoid, turn away from, dis-connect from and perhaps devalue those who are “not normal”. Pre-disease I had noticed this reaction when people would see someone with some type of physical problem - a large scar on their face, a burn, a missing or deformed limb.... Never thinking that I would one day be the catalyst for such behaviour. And then, when I was really grey, moving at a snail’s pace etc and obviously ill, many strangers would do the same.

I yet again thank my lucky stars that this has not been much of an issue for me – I only lost one “friend” from this. It was easy to be in that lofty place that recognizes that this is human nature – her weakness and loss, and to not take it too personally for too long (although I still detect an edge of bitterness in myself at her). From that experience though, I can see that it would be much tougher if this was happening with more people in my life.

And so agree that it is our self-definition that matters. Pre-disease I had worked hard at not thinking that “I” am my job, body, brains, wealth, beauty, wit, intelligence................... or what others thought of me, and thought (ha ha) I was not seeing myself as those things. Well – once getting sick – BAM – found I still had all of those things as part of my self-definition. Made me dig deeper.

Flybro, The Spitfire, Kati, dancer, shiso, Victoria, and helsbelss – thank you all for letting me know I’m not alone. This community is wonderful at being a mirror for one another. Dancer, think you expressed more clearly what I was trying to say at the beginning, “...acknowledge that it IS so difficult and WHY it is so difficult. And sometimes just recognizing it all (and knowing others are fighting this same battle) helps me go on a bit more.”

Orla, Adam, Rebecca 1995, DB, Dr Yes (avatarless???), and Margaret – thanks for the hugs, good thoughts, and love. Back at you all.

And Mr Kite – glad you stuck your neck out (snicker) to express your empathy and humour!

A thought came to me as I was writing this novelette. In cross-cultural awareness, an iceberg is often used to describe how culture is perceived



iceberg-OP.jpg


I feel that there are parallels with living with a chronic disease. People can see the top tip of the iceberg of what it means to be living with this disease, but few who haven’t experienced something similar can understand all the deeper levels that are affected as well.

To carry the analogy a bit further, we were kidnapped from the culture we lived in pre-disease, and thrown into the new living-with-ME/CFS culture, having to figure out what the cross-cultural differences while impaired by the disease itself.

This disease sucks, but your lovely company makes it more bearable. Thanks.

:hug::hug::hug::hug:
 

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Dreambirdie

work in progress
Messages
5,569
Location
N. California
What inspiring insightful posts. I guess this is why I shared my sadness. I knew you'd "get it" in both senses of the meaning.

Tears are infrequent for me, but as I wrote my initial post, my face was covered with a sheath of tears. And again, when I read your posts. Definitely healing.

This disease sucks, but your lovely company makes it more bearable. Thanks.

:hug::hug::hug::hug:

Hey SB~~

I have been weepy and melancholy lately too. And I'm relieved to read this thread and see I'm in GOOD company.
I don't know if this would help you, but when I feel sad, I retreat into making art, and reading inspiring books and poems. Joseph Campbell is lately on top of my list. That PBS series of Joseph Campbell with Bill Moyers--The Power of Myth--has been a great thing to revisit.

Here's a great little interview with him: http://www.context.org/ICLIB/IC12/Campbell.htm

"What does myth do for us? Why is it so important?

Joseph: It puts you in touch with a plane of reference that goes past your mind and into your very being, into your very gut. The ultimate mystery of being and nonbeing transcends all categories of knowledge and thought. Yet that which transcends all talk is the very essence of your own being, so you're resting on it and you know it. The function of mythological symbols is to give you a sense of "Aha! Yes. I know what it is, it's myself." This is what it's all about, and then you feel a kind of centering, centering, centering all the time. And whatever you do can be discussed in relationship to this ground of truth. Though to talk about it as truth is a little bit deceptive because when we think of truth we think of something that can be conceptualized. It goes past that."
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
You have expressed beautifully what is for me one of the hardest parts of living with this disease. I have grieved for many of the things I used to do or be, and then adjusted to the new reality. But this one seems to be an ongoing source of grief and sadness. And it's not just the inability to communicate with, or participate in activities with, my friends and loved ones. It's the loss of commonality, the understanding that comes with shared experiences. For instance, I used to talk with women friends about what it's like being a woman, having women's experiences. But none of my loved ones, even those who are compassionate, know what this is like from the inside out. I think that's what brought me to this forum. Posts like yours, where when I read them I think "Yeah, that's what it's like."

But I will say, I have found opportunity and/or blessing in this, albeit a blessing I would never have sought out. I don't know quite how to describe it, except that this disease keeps stripping away the ways I have defined myself to myself. First it was things that I (used to) do, like travel, work, hobbies, etc. Then I could no longer say, for instance, "I'm a person who likes to read," or to garden, or whatever. Then it was the way my mind works (or used to work), like "I'm good with words," because I no longer am. So it forces to me look at what's left when that's gone. It brings me closer to the core of myself, somehow. It seems like there is some kind of essential "Me" even when those "I am a person who..." things are gone. I don't know, maybe I'm becoming more spiritual, though I'm not sure that's the right word for it. I do know that I have learned a pleasure in just being. Being alive, breathing, being aware of my surroundings. I feel fortunate to have been forced to slow down and experience that. And to have an enforced opportunity to sit and notice things like the quality of light, or textures, or smells.

Still, I miss that human connection, and it makes me sad.

Thank you for sharing this. It helps me. I hope it helps you, too. :hug:
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Thanks Dreambirdie. It is good to be reminded of this.

That PBS series of Joseph Campbell with Bill Moyers--The Power of Myth--has been a great thing to revisit.

Here's a great little interview with him: http://www.context.org/ICLIB/IC12/Campbell.htm

"What does myth do for us? Why is it so important?

Joseph: It puts you in touch with a plane of reference that goes past your mind and into your very being, into your very gut. The ultimate mystery of being and nonbeing transcends all categories of knowledge and thought. Yet that which transcends all talk is the very essence of your own being, so you're resting on it and you know it. The function of mythological symbols is to give you a sense of "Aha! Yes. I know what it is, it's myself." This is what it's all about, and then you feel a kind of centering, centering, centering all the time. And whatever you do can be discussed in relationship to this ground of truth. Though to talk about it as truth is a little bit deceptive because when we think of truth we think of something that can be conceptualized. It goes past that."
 

leelaplay

member
Messages
1,576
Hey DB,

It is reassuring to know I’m in such good company.

Thanks for sharing what helps you. I always have loved Joseph Campbell. & the Bill Moyers interviews are classics.

These days I find I can’t read much, meditate, go to satsang, or do my physical meditations (tai chi , chi gung, yoga, feldenkrais, walking, being in nature.............), or watch TV or videos, and can not listen without visual clues at all.

Instead I seem to try to rest in the essence of what I’ve learned over the years. A few breaths, a wash of cleansing throughout the body, letting go of stress, stepping outside of any monkey-mind stories, looking out the window, smile at my dog, maybe being able to go touch a flower or herb...........

The quote you included does a great job of describing the indescribable.

a plane of reference that goes past your mind and into your very being, into your very gut. The ultimate mystery of being and nonbeing transcends all categories of knowledge and thought. Yet that which transcends all talk is the very essence of your own being, so you're resting on it and you know it. <snip> to give you a sense of "Aha! Yes. I know what it is, it's myself." This is what it's all about, and then you feel a kind of centering, centering, centering all the time.

Ixchelkali – I’ve really enjoyed the posts of yours I’ve read & now’s my chance to welcome you to the forum.

What an amazing writer you are! Your second paragraph is a beautiful description of what I have experienced as well. A friend of a friend calls it viral Buddhism. I’m not a Buddhist or even I would say really a spiritual person either, but to me, the psychological framework of explaining the world in Buddhism, advaita Vedanta, Campbell’s work on myth, chi, Hafiz, Rumi, the people doing work with quantum physics & ”spirituality”/reality, etc corresponds most closely to my experience, and I have explored that all my life.

For the first 3 or 4 years when things often were extremely bad, I was almost continually deeply in the process you describe. I was shining, glowing in “i”. But over the years, that’s become not as intense, and I get stuck a bit more in “I”. Am very thankful that I developed the skills to be able to let go, uncling, “be” a bit at times.

A maybe clicheish way to end this post is with a truism that sometimes works as a reminder for me when I am incapable of doing much:

We are human beings, not human doings
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
A friend of a friend calls it viral Buddhism. Im not a Buddhist or even I would say really a spiritual person either, but to me, the psychological framework of explaining the world in Buddhism, advaita Vedanta, Campbells work on myth, chi, Hafiz, Rumi, the people doing work with quantum physics & spirituality/reality, etc corresponds most closely to my experience, and I have explored that all my life.

"Viral Buddhism" describes it very well. Even though I'm not Buddist, I too have found that a sort of Buddist psychology has been very helpful in adjusting to this illness. Resisting, fighting to overcome, soldiering on, etc (all those qualities that Western culture teaches us to admire) just don't work with ME/CFS. I've had to learn acceptance in order to survive. That's acceptance with the head held up, not resignation or defeat. Accepting that what is, is. This is the only time I have; I don't want to poison the present moment by spending it regreting that I can no longer do the things I used to, or feeling guilty that I can't do things that I can't do. Besides, I don't have the energy to waste on those kinds of "negative" emotions. The more I can accept that what is, is, the less effort I spend wishing it were something else.

Here's a little Buddist koan that I like: I have lost my favorite teacup. I have two choices. I can have lost my teacup and be miserable, or I can have lost my teacup and be all right. Either way, the teacup is gone.

But I don't just mean "thinking positive" all the time, either. I find that when I try to think positive all the time, I just stuff down feelings of sadness, pain, grief; they don't go away. I try to be open and accepting of those feelings, too. Sometimes "what is" is that I'm feeling sad. Sometimes I'm filled with longing to be able to stride down the street, to do hard work until my muscles ache, to dance, or whatever. Then I try to simply let those feelings come and move through them. It seemed like that's what you were doing when you said "I'm sad." That takes courage, to face the pain instead of avoiding it. But I think it makes you more fully alive.

Instead I seem to try to rest in the essence of what Ive learned over the years. A few breaths, a wash of cleansing throughout the body, letting go of stress, stepping outside of any monkey-mind stories, looking out the window, smile at my dog, maybe being able to go touch a flower or herb...........

Yes! I know what you mean. Although thinking about all this makes me feel like maybe it's time to dip into it more actively again, to brush up my skills. Like starting doing daily meditation and reading again. I like Cheri Huber's books because I can read them when I'm brain fogged. The type is large and she says things simply, and it's easy to read a couple of paragraphs a day.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Eckhart Tolle works well for me. He's the most inclusive of all the spiritual teachers I've read, and he even has a great sense of humor.

[video=youtube;kLeBwnbt0eg]http://www.youtube.com/watch?v=kLeBwnbt0eg&feature=related[/video]
 
Messages
31
Location
Central California
Shrewsbury, THANKYOU for having started this thread, and to the other posters; this is exactly what I NEEDED to read/hear, too. The communication difficulties are for me the most heartbreaking part of this disease(s) and I am in complete empathy with you. I now am taking a deep breath and not feeling like such a 'weirdo', thanks to you all.
From the Island of Misfit Toys and "Social Retards" <how I used to refer to myself) -t.
 

leelaplay

member
Messages
1,576
Plus which, he's been referenced several times in the haiku chain! :D

nice plug Rebecca

DB - that's the best I've ever seen Eckhart. Very nice work that you got a being / doing / I am segment. Gangaji is one of the teachers I've learned from. Heres a link to the Diamond in your Pocket, which has an intro by Eckhart Tolle, for those of you who can read.

Thanks for the Cheri Huber referral ixchelkali I dont know (or is that remember) her. Couldnt remember the attributions of ixchel so looked them up. You have many possibilities with these 2 goddesses. One could be medicine and eternal energy.

Victoria - have a sinking feeling I missed you. If so - so sorry.:Retro redface:

Shrewsbury, THANKYOU for having started this thread, and to the other posters; this is exactly what I NEEDED to read/hear, too. The communication difficulties are for me the most heartbreaking part of this disease(s) and I am in complete empathy with you. I now am taking a deep breath and not feeling like such a 'weirdo', thanks to you all.
From the Island of Misfit Toys and "Social Retards" <how I used to refer to myself) -t.

tymewarp - don't think we've"met" yet. Welcome to the forum. I love it when life is synchronistic in a good way - I guess that would be serendipitous. So glad to see the "used to" in that last sentence. I've enjoyed walking to a different drummer for most of my life.:D Right now is not the way that I would have chosen to be doing so though.
 

MEKoan

Senior Member
Messages
2,630
My dear Shrewsbury,

I have been, and remain largely, unable to read the forum at all so I missed this thread along with all else.

I, too, want to thank you for this amazing lesson! What you said... about everything! And, what others said, too! And, a big welcome to Ixchelkali.

There is nothing I can add to this perfect lesson except my heartfelt gratitude to you for creating it!

You are the best, my friend, the very best!

Your student,
Koan
 
Messages
5,238
Location
Sofa, UK
Thank you for creating such a wonderful thread Shrewsbury. When I saw you saying "I'm sad" it just jumped off the page, and I wanted to say something but even while I'm writing now I don't know what that is...except perhaps that I want to say something...even though everything I have to say has been said already.

You've reminded me of a mourning period that I've locked away in my past, and which I don't think about much any more. But even as I write that, I realise it isn't true: only a few hours ago I was looking at the TV with jealousy at people who've had the chance to live 'normal' lives. Even last night I watched a great sitcom and wondered whether I will be able to bear watching it much longer - because it's about a family and I can't watch images of families for very long without breaking apart, knowing I will never have one of my own. So I do still have all that sense of loss locked away inside, even though I have it well covered up these days and live a life that looks 'normal'. And I'm so lucky compared to most of you, I can still do so much; the spirit of how you have all coped with far worse than I have is quite magnificent.

I remember how, early on when I started posting here, it was the most amazing and wonderful and healing experience to find people who understood, who shared these experiences - amazing how we all dare to open up and write about how we're really feeling and find that so transforming. I remember how when I started to meet you all, I began to use the word 'friend' again, for the first time in years. And I'm reminded of how much more frequently I actually look at my Buddhas these days, and how much more often I think about the Buddha's teachings, and how they seem truer and wiser every day - and so much of that is thanks to all of you here.

I have been very sad this last few days as well. I was excited and euphoric about my football team...until it all went wrong. I was excited about the UK election and dreaming of a 'rainbow coalition'...that never came. Everything came crashing back down to earth, and I felt sad, confused, and angry...and I started thinking about 'attachment' pretty quickly, and realising what a mistake I had made by investing my emotional energy in something that would only let me down.

On the subject of friends, and communication, well, I am lucky. I can still communicate OK - but only with certain kinds of people. Good, sensitive people, who understand suffering and don't react angrily to it and make it worse for everyone. The people I spend time with now are not the people I would be with if I wasn't ill - and actually, I'm grateful for that, not sad. Perhaps I just find it too easy to find the positives in the way my friendships have changed, because I am so lucky to have the company of a different, more caring group of people than those I used to know.

What was it I really wanted to say again? Why did I have to post on this thread? I think it was because over the past few months I have read so much of what you have written, what all of you have written, and because it's meant so much to me, and because I wanted to acknowledge all of that, and to let you know that this communication we have now means at least as much to me as everything I have lost. Thank you everyone. :Retro smile:

:hug:
 

MEKoan

Senior Member
Messages
2,630
Hello Gracenote!

I was referring to a favourite "koan" of Ixchelkali's

Here's a little Buddist koan that I like: I have lost my favorite teacup. I have two choices. I can have lost my teacup and be miserable, or I can have lost my teacup and be all right. Either way, the teacup is gone.

How did you make that charming heart?! You little technocrat, you!

brainless,
Koan

ETA :hug:
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Here's a poem that belongs on this thread:
:hug::hug::hug:

Sweet Darkness

When your eyes are tired
the world is tired also.

When your vision has gone
no part of the world can find you.

Time to go into the dark
where the night has eyes
to recognize its own.

There you can be sure
you are not beyond love.

The dark will be your womb
tonight.

The night will give you a horizon
further than you can see.

You must learn one thing:
the world was made to be free in.

Give up all the other worlds
except the one to which you belong.

Sometimes it takes darkness and the sweet
confinement of your aloneness
to learn

anything or anyone
that does not bring you alive

is too small for you.

~ David Whyte ~


(House of Belonging)
 

leelaplay

member
Messages
1,576
Hi Koan, welcome back. This house just ain't no home anytime you go away.
(hee hee)

I decided to throw a few teacups, what the hey

images


and look what happened

images


Mark - so lovely to hear from you. :hug: I love the way you write - somehow you manage to say more than is written (if that makes sense). And what a positive report - very cool :victory:

thanks DB, gracenote :hug::hug::hug: and everyone here. Somehow expressing my sadness, and seeing it mirrored, has lightened the load tremendously. My sadness stays - think it will for a while - it's warranted, but it is a minor theme now. Threads of community, compassion, relativity, peace, joy, acceptance, pragmatism and nowness are swelling again.

:sofa: