Buddhism & CFS

[MEKoan]

DrYes,

The worst was feeling that when I looked inside myself, instead of finding what I thought of as the inner self or the (usually taken-for-granted) solidity of one's own existence, I felt as if I was (inwardly) looking down into a black void; I could feel the "Nothingness" of it... it was just down to my anchorless thoughts, and that void; nothing else existed and there was no substance to anything.

That is the single best description of this I have ever read! That is it precisely! What a way you have with words, my friend.

Several years ago one of my stepsons called me in a dread filled panic. I was at his place in no time flat and he described what was happening to him. It was depersonalization and derealization. I told him I understood and that I had suffered from the same thing. He didn't, couldn't, believe me. I totally understood. It's so hard to believe that anyone else has ever felt that way but it is actually fairly common, as hellish experiences go.

And, like you, it stayed around at a simmer for a long time until it finally went away except for the odd outbreak. Xanax did help him (.5 to 1 mg. when it hit hard - followed by a nice nap ) and time helped him even more.

I think that anxiety increases this symptom somehow but I do believe it is seizure activity - probably temporal lobe. When they started treating people with Xanax for Panic Disorder - after the ME/CFS flu experience, and my decision to cut out dairy (calcium) combined with my stupid exercise bike rehab efforts pushed my symptoms of deper. and dereal. into overdrive - I was prescribed 2 mg. 3x per day. That pretty much ensured 3 major naps so I cut back right away to 1 mg. 3x per day which did the trick but still brought on some napping! But, the horror was gone almost completely almost right away. Soon enough I was cutting back even further but I always, always, had Xanax in my pocket, just in case I tell you this so that you have an idea of how we were treated and what worked for us in case it's helpful in any way.

I did anything I could to combat this 'feeling', but in the end I think it just went away on it's own after about an hour. Nothing like that happened again from that point until about three years later, though I remained haunted by the experience.

This is classic. I'm so sorry!

In '95 it started after I was hospitalized for 10 days while my crazy Infectious Disease doc had everybody on staff run tests on me (I had developed a weird respiratory problem); I got virtually no sleep for those ten days and caught a terrible flu and was being treated with IV antibiotics for Lyme (though my tests were negative). It also turned out at the same time that I had an acute HHV6 infection, as tested by Ablashi at the NIH. Somehow the combination set off the first anxiety attacks I had ever experienced.

Did you know that a test for panic disorder is to inject the patient with lactic acid? If they have classic panic disorder, they will panic. If they don't, nothing will happen. Lactic acid metabolism is also part of the ME/CFS picture.

Also, for me, the benzo doesn't stop the symptom so much as it "anaesthetizes" me to its effects, allowing me not to care about it

I found the same thing with most benzo.s. It's such a shame that Xanax doesn't work for you but I wonder what drugs are used to treat temporal lobe epilepsy. Anti-epileptics tend to be pretty potent drugs - I've taken them for neuropathic pain and had lots of side effects. But, a look into the treatment of TLE may be useful.

Eventually over the years (not through any medicines) the anxiety got much, much less and the 'derealization' or whatever became more manageable for whatever reasons, as I mentioned in a previous post.

I do think that anxiety plays into this. I was not a bit anxious when I had my first attack. It came out of the clear blue. The first several did as did the terrible ones that followed the "flu". But, once I was vulnerable, anxiety could trip me over into it.

An intense "episode" hasn't happened in a long time.. though it never feels too far away. But I still feel "disconnected from myself" at a deep level (over the years i've also described different flavors of it as feeling "dislocated", "superficial", or "paper-thin").

I remember that, too. It's as though one gets a look at something that is so traumatic, so existentially shocking, that it leaves one's psyche bruised. This goes away, eventually, and being as unafraid as one can helps it on it's way.

I guess my greatest fear now is that my normal functioning, my feeling of having "depth", will never return due to some sort of neurological damage by a virus or whatever. The idea is chilling, even difficult to write down (and I hope in so doing I don't scare anyone else!), but I do know how amazingly plastic the brain is and how capable it is of re-routing its pathways, and all evidence and my intuition suggest that it's not physical damage but rather a system malfunction.

My gut says this is true. That's what it feels like to me.

Thank you for being so concerned about triggering. You are a lovely fella! I hope it reassures you when I tell you that I can contemplate all of this now without fear. None.

In fact, the only time I get an actual hit of the dreaded D&D now is when I have used medical marijuana for ME/CFS symptoms. (It stopped working, unfortunately, so I don't use it any more.) But, when I did, I would experience D&D, intensely, first and could wait it out with much more equanimity (and a little Xanax ) than in the past and no lasting sense of dread. I would be surprised, each and every time, at how horrible a feeling it was, though.

You have no idea what that means to me, Koan!

Oh yeah, I do! I remember vividly discovering that it was not my personal hell. It feels like one's personal hell.

Thank you, DrYes, for sharing this because it has brought all kinds of interesting thoughts and ideas into play for all of us! I am astonished at how much we learn from each other when we share what we feel is a private torment and find it is shared!

You're a brave guy, DrYes. You are managing this with guts and grace.

And, no, you are not alone!

Neither are the rest of us!

Thanks for that!

 

[fresh_eyes]

Hey y'all, on the theme of existential dread & neuro probs - on the "new Virology podcast" thread someone was just saying that he was amazed when his Social Phobia (diagnosed & medicated) went away after taking antibiotics for Lyme. Amazing, no?

 

[fresh_eyes]

Thanks for all your comments, Koan. This is a great discussion.

I can see now how, if one were not prone to anxiety, one could embrace this glitch as a mystical experience.

This bit reminded me of the questions early on about "no-self". Perhaps if one views that inner void described by Dr. Y from a different angle, it's Zen "emptiness," the formless, liberation.

So when the hell do WE get to have visions??

Or, why the hell do we have to have void visions, instead of the fun kind??

 

[Marylib]

This thread

Would you all mind terribly much suspending yourselves in time until I can catch up with this terrific thread?

It should only take a few weeks.

 

[MEKoan]

This bit reminded me of the questions early on about "no-self". Perhaps if one views that inner void described by Dr. Y from a different angle, it's Zen "emptiness," the formless, liberation.

yes! I can do that now!

In fact, with lug-bhug a decade's distance from the relief of the anguish, I felt the experience gave me a leg up, on the whole emptiness thing, just not the kind of leg up any rational person would want

WARNING! what follows may be triggering ~ is almost sure to be triggering!

The last time I tested medical marijuana, I had such an extreme experience, that I was hyper-aware of the insubstaiality of my body. I was completely in tune with the reality that I am more space than atoms. It was pretty cool but a bit hard to surf with equanimity. Mind was the only "solid", so to speak. Can't explain it. Ultimately, it was very reassuring and comforting. I think the alarm we feel when these systems fail makes sense becasue this undertaking is all about dealing with this on face value - suspending disbelief, if you will. I'm trying not to be too terribly triggering in case DrYes could not help himself and is reading.

Ok, triggering done!

~peace~

 

[Dreambirdie]

symptom freedom meditation

I think one of the MOST helpful things about meditation (which I am REALLY appreciating excessively right now due to a dive into crashland) is how it helps me cope with, and even alleviate, some of my worst symptoms.

It seems almost a predictable EGO/MIND HABIT to zero in and hyper-focus on BODY DISCOMFORT when it comes up, especially when one is not distracted by engaging in "normal" daily activities. With that, the mind inevitably jumps into all its usual JUDGMENTS about how "bad" "horrible" "icky" "yukky" "restrictive" "unfair" etc.... it is to be sick. This adds more fuel to the fire of the already blazing discomfort. (It's all very subtle and sneaky, but when I listen I hear it!)

To "remedy" the drama, to SHUT DOWN all that noise, a counter effort steps in--with breathing becoming more shallow, in the attempt to NUMB the uncomfortable feelings.

So now it's like a war dance, with one side of the crazy ego/mind AMPLIFYING the symptoms and the other equally crazy side attempting to CRUSH them by holding the breathing down.

When I enter this with my awareness and investigate it without jumping in to FIX it, I actually find it so comical, that relief now is possible. When I observe and embrace the stupidity, it really does wonders for me. I no longer FEEL my symptoms as intensely, I no longer idenitify with them as much, and I no longer feel I have to change/fight/fix them, but can just LET THEM BE. And as soon as I do, they are no longer "in my face" but now more in the background of WHO I AM.

This is the freedom that meditation brings me.

 

[MEKoan]

YES! Beautifully stated, Dreambirdie!

 

[gracenote]

community of audacious souls

Ahhhhhh . . . . .

Thank you all for inviting me to share in this wonderful dialog. I have no words right now, just a lot of head nodding, smiling, and warm feelings as part of this community of audacious souls on an exquisite journey.

 

[Lucie]

This thread on Buddhism and CFS is wonderful. I'm not thinking well, but a few responses and questions come to mind.

One: My linear Western mind wonders if there is a specific starting place. Yes, the meditation, and your descriptions, are quite good. And some of you mentioned teachers. But is there a book, a site that gives what you do first, then second, etc. to learn mindfulness, compassion, non-judgmentalism.

I would add that I have studied and practiced "passage meditation" with Eknath Easwaran in the past - a syncretistic approach, but the most spiritually beneficial of anything else I've encountered - at least until now. Since I've been hit with the neuro-immune punch, Easwaran's writings don't work for me. A bit to simplistic and theistic, however I am indebted to him for being the teacher I needed at the time.

Two) I, too, have experienced de-realization, dissociation and existential angst. These states of mind would be my definition of hell, worse than any physical or emotional pain I've had. I appreciate the comments and suggestions on different ways of dealing with them.

Three) The d, d and e a mentioned above caused me great difficulty with the concept of groundlessness as explained by Pema Chodron (whom someone mentioned in the thread). Anybody have any thoughts about groundlessness? I tried reading Pema's work, but when I got to groundlessness I had to leave it, could feel the d, d and ea coming on.

I've loved the thread, but my brain is fried so not sure how much has soaked in. I'm going to try to print out the entire thread so I can read it at leisure and without the glare of computer which is overwhelmingly bright even with my wearing sunglasses.

Thanks to you all,
Lucie

 

[Dr. Yes]

Asleep at the karmic wheel

Hi Lucie!

I prob'ly shouldn't be answering you when half my brain is asleep and the other half wants more of the blanket, but.. I thought I'd just respond briefly for tonight..

Hey, I'm pretty linear too, you know...sometimes...

As I found out on this thread, none of us are alone in experiencing "d&d", as Koan calls it...and/or "e a" , as you abbreviated it.. (and I'm glad you did; earlier they were saying "existential dread" which, being a guy, I'd rather not use in its abbreviated form..).

I know exactly what you mean when you say:

These states of mind would be my definition of hell, worse than any physical or emotional pain I've had.

I'm so sorry you had to deal with that, too.. it's an evil brew..
(I always start rhyming when I'm super-sleepy!) But you referred to it in the past tense, so I'm hoping it is behind you?
If it's not uncomfortable for you, I'd be interested in your own description of the existential angst, or the other terms, or at least if it was much like fresh eyes, Koan or I described. But I have a feeling we're talking about the same things... how did yours fit in with your ME/CFS, if you don't mind my asking?

(By the way, Koan, if you're reading this, your description did NOT trigger anything, so worry not! )

I'm sure Koan or teejkay or others will be able to advise you in your exploration of Buddhism. If I can make one (probably mistaken) point..it would be that I'm not sure the study and practice of Buddhism will be quite as linear or sequential as you or I might like it to be! Though there certainly are schools (literally) that teach Buddhism in a straightforward approach...

It would also depend on the 'sect' or branch of Buddhism that you are interested in...Even within the larger classifications, there is so much variety!

The approach I was planning on using (when my brain can actually handle deep stuff again) is to read from the oldest possible sources of East Asian Buddhism, with which I am not very familiar... I'd like to get a taste of the 'original items' before I read interpretations... especially since I suspect that many western-oriented Buddhist books and teachings have a tendency to either streamline or to synthesize different doctrines. (I'm basing that on what I've read in western-oriented Hindu or yogic teaching... some is good, of course, but few make it clear that theirs is NOT the only interpretation or practice). I like knowing where things come from and understanding the "why" behind their structure; that must be why I like evolutionary biology, too...

Sorry for the incoherent rambling, I'll go to sleep now...

P.S. - I wish I had a printer. Will one of you self-less Buddhists please send me one?

 

[fresh_eyes]

Three) The d, d and e a mentioned above caused me great difficulty with the concept of groundlessness as explained by Pema Chodron (whom someone mentioned in the thread). Anybody have any thoughts about groundlessness? I tried reading Pema's work, but when I got to groundlessness I had to leave it, could feel the d, d and ea coming on.

Hi, Lucie! Welcome to the discussion. In answer to what you say above, I remember early on in my spiritual explorations, I had a very similar reaction to reading a book called A Course In Miracles. I recall one sentence distinctly: Nothing means what you think it means. Whew! Bring on the d & d! I practically threw it in the corner as if it was on fire.

It was only much later, when I became ill, that all these teachings started really working for me. I think it was because the rug was completely pulled out from under me. I was living in a cold sweat of groundlessness, not being able to do what I do, be who I am, feel like myself, think like myself. Without all the things I thought of as "me" I was absolutely discombobulated. That's when Pema's teachings really came alive. She seemed to just be saying, You know, it's perfectly all right to feel discombobulated - not only that, but it's the truth of our situation. We don't know anything, we can't control hardly anything, and life is just basically mostly not how we want it to be. And if we can get the hang of that, then it's all OK.

Did I get a little carried away there, rambling? Anyway, that's my take!

 

[CJB]

Go to audiodharma.net. I listen every day. Gil Fronsdale is my favorite. He is a good teacher when you can not get to a teacher.

Thank you for this, George. I've listened to two talks by Gil and his voice and the pace of the message are very soothing to my brain. I'm not a Buddhist, but I find a lot of joy in learning about the teachings and traditions.

 

[MEKoan]

What DrYes and FreshEyes said!!!

Lucie, I have been thinking about this a lot because I got out of d&d hell with Xanax before beginning to study Buddhism and embracing concepts like groundlessness which now bring me enormous comfort. I found the appropriate medication to prevent the system malfunction that causes the sudden alarming sense of d&d and the creepy background lurking d&d, years before I found the dharma.

I have been wondering how much of the distress is caused by the lack of control over it. Perhaps if one knew one could slowly dial it up or down, and turn it off when it got too freaky, it would be more tolerable. I have also been wondering if alarm and dread are intrinsic to the experience or reactions to it.

(I think we should grill Fresh Eyes - what an unfortunate turn of phrase that was - because she seems to have managed to turn it around!)

Xanax gives me control over the sensation and removes so much of the horror that I could accept it as part of the experience of using medical marijuana. I would never, ever have done that in the past because the thought that I might trigger it, and be unable to stop it, would have been a risk I would have been unable to take.

I do have a take on it which is informed by my experience of it and by my Buddhist beliefs but I don't think I would have found this take very useful had it been offered to the old me. I think it might have freaked me right out so I will keep it to myself.

I just can't know how much of my comfort is having patched the brain and dampened the seizure activity, or whatever it is, and how much would have been doable for me without tweaking that troublesome organ.

So, I am going to leave this topic in the very capable hands of those who have managed, and are managing, without benefit of tweaking.

I do think there is much in Buddhist thought and practice that can be very helpful without contending with this, and similar concepts. Of course, anything that makes the wonderful Pema Chodron less available should be examined. I LOVE Pema Chodron!

Jon Kabat-Zinn has written extensively on the practice of mindfulness and, I don't think, he goes very deeply into these issues. There is much in western mindfulness which is enormously helpful in regards to the nature of suffering and how to suffer less. If you haven't read any Kabat-Zinn, maybe google reviews of some of his books.

Forgive my rambling, please. I truly have very little idea what I just said. Why is it that when the mind is not working one needs to write so many more words to make so much less sense?!

I proabably should have stopped at:

What DrYes & FreshEyes said!

 

[MEKoan]

Hey again, Lucie,

The beginning is really "The Four Noble Truths" and "The Eightfold Path". It is the Buddha's analysis of suffering and his directions out of suffering.

There is a nice clean explanation of The Four Noble Truths here: http://www.thebigview.com/buddhism/fourtruths.html

and you can easily go from there to the Eightfold Path.

This is a very good and user friendly site with a lovely clean layout. I hope you find it helpful.

I'll shut up now! Promise!

 

[Dreambirdie]

Yes, the meditation, and your descriptions, are quite good. And some of you mentioned teachers. But is there a book, a site that gives what you do first, then second, etc. to learn mindfulness, compassion, non-judgmentalism.

Hi Lucie--

I found it difficult to grasp "mindfulness" (being TRULY present) without a teacher. I am very very fortunate that my meditation teacher was/is also a psychotherapist, who works with those affected by illness. In addition, he has had to deal with his own serious health issues--in the form of a very deadly cancer, that he has, so far,
beat the odds on. He is absolutely brilliant, the most powerful listener I have ever met, sharp as a laser in his perceptions, and deeply compassionate.

The teachers I've heard who come closest to him are Eckhart Tolle and Adyashanti. I like them both, but especially Tolle, because he is a pure mystic-- not aligned
with any particular school or religion.

Check out Eckhart Tolle here http://www.youtube.com/watch?v=UPg9DnMP2D4&feature=related
He also has a great book called the Power of Now (my favorite of all of his).

and Adyashanti here http://www.youtube.com/watch?v=ELTiD7L_nU8&feature=related

 

[starryeyes]

Dreambirdie – I know just what you're talking about with noticing how you are feeling and reacting to things. That's a very helpful post you wrote that describes what we deal with all the time and how mindfulness can allow us to step outside of ourselves and change our perspectives on how we're feeling about things. I'm so glad this works for you as well.

Lucie – I like to approach things in a linear fashion too. I think a good starting place for Meditation is the breath. You have to take a breath right now.....I know you do . So start with the breath. Tune into your breath and you can look up Breathing Meditation too and find lots of cool exercises. Thich Nhat Hanh says always go back to tuning into your breath.

Another nice thing about tuning into your breath is that you can do it anywhere any time and it can help you calm yourself.

One meditation I like to do with the breath is think 're' when breathing in and 'lax' when breathing out. I use this a lot and and it really helps. Try it for a bit especially next time you're tense.

Dr. Yes – when you start reading the most ancient texts on Buddhism that you can find I hope you'll share with us what they are and what insights you get from them.

P.S. I put in a prayer for you to get a printer.

Fresh eyes – Pema's Chodron's book, When Everything Falls Apart has really helped me. And did you all know, she has CFS? So she knows what we are going through and how to apply Buddhism to it.

George and cj – I'm really enjoying Gil's talks too. They're working very well for me.

Koan – don't be thinking you shouldn't post your wonderful thoughts here. What you write is right on topic and very insightful and helpful. I really enjoyed that post.

I just Wikied Jon Kabat-Zinn and it says: “[He] is Professor of Medicine Emeritus and founding director of the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School. He teaches mindfulness meditation as a technique to help people cope with stress, anxiety, pain and illness.”

That sounds like just what we need. I'd never heard of him before. I'll be looking him up now.

Here is a YouTube video of Jon addressing a group of students:

http://www.youtube.com/watch?v=3nwwKbM_vJc

I'm getting a lot out of it.

 

[starryeyes]

I'm studying Fractals and the Mandelbrot Set these days and I think this fits in with Buddhism really well. In fact the Mandelbrot looks like the Buddha to me, complete with ornate Thai hat.

I was just reading this about the Mandelbrot set:

I propose to you that the Mandelbrot set is none other than a fractal Buddha, seated in the lotus position in the midst of a lotus flower reminding us that dharma is the link between Buddha and sangha, The Middle Way whereby each human being can experience order amid chaos.

Dharma is the universal law, Buddha is the enlightened one and the Sangha is the community.

http://books.google.com/books?id=M2...=onepage&q=the mandelbrot and buddhism&f=true

 

[meandthecat]

Such a lovely thread, I resonate with much of it esp Dr Yes.

Much of my life seems to have been focused on touching into that transpersonal place where we are a part of something bigger. I have tended toward Gnosis and have absorbed influences from many traditions.

It led me to managing large gardens as a sort of right livelihood where I could experience a sense of oneness with Man and nature (opportunities are more limited in the UK). I loved it.

To be denied intellectual competence is disabling; being excluded from that depth, insight and nourishment kills me everyday. With help I can catch a glimpse of that place but I don't have the strength to sustain it.

It's uplifting to be able to come here and share that sense with others.

 

[starryeyes]

Hi meandthecat....cute name. You know, I've been like this mentally since I was a child. I really think I've had CFS most or all of my life. Some of my worst physical symptoms go back to the age of 4 at least. People have always called me spacy and stupid. I think I've been mentally like this as long as I can remember. I've thought this before but the discussion here is really bringing it home to me.

My cognitive dysfunction does seem much worse now but maybe I'm just paying better attention to it since I found out it's part of this illness. It seems worse on one hand but the older I get the better I am at compensating for it. I just don't think I ever did have the thinking and memory abilities that come naturally for healthy people. And those feelings of being disconnected from yourself and reality have always been a part of my consciousness. At times it's much worse than others. I've just been hanging on for the ride.

 

[fresh_eyes]

...I am very very fortunate that my meditation teacher was/is also a psychotherapist, who works with those affected by illness. In addition, he has had to deal with his own serious health issues--in the form of a very deadly cancer, that he has, so far,
beat the odds on. He is absolutely brilliant, the most powerful listener I have ever met, sharp as a laser in his perceptions, and deeply compassionate.

DB, would you mind telling us who this guy is? He sounds great! (Or is he one of those who doesn't want a lot of publicity?)