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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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frozenborderline

Senior Member
Messages
4,405
Since having severe ME I have done a lot of emotional compartmentalization bc emotions take too much energy to process usually. I dont know if this is emotionally healthy but it seems to be what my body needs

This has come into conflict with the buddhist practice I'm trying to do.

The Buddhist practices I do are mantras and other types of meditation but the basis of all Buddhist practice is something called bodhicitta which is hard to translate but is a type of compassion and love for all. I realized if I am emotionally closed off I cannot feel bodhicitta. So I tried a practice called tonglen to open myself up emotionally. You can read about it or google it. It worked, but then I just felt like I had used up a lot of my energy and was going to crash.

So, cultivating bodhicitta is difficult when you have actual metabolic energy crashes from too much emotion. But doing mantra meditation or other types of meditation without bodhicitta is sort of like trying to build a house without a foundation or something. Or drive a car without fuel. It just is sort of pointless , even if it drains less energy. Maybe not totally pointless as mantras and prayers comfort me, but not as powerful as it would be with bodhicitta.

Anyway so this dilemma is hard. I guess I dont want to not practice and I dont think I'll get good answers from Buddhists who dont understand ME/CFS and PEM. But maybe there are some practicing Buddhists on here who also have had this issue.

Anyway , I want to continue with my vajrayana Buddhist practice for many reasons. I also don't want to crash myself. And at some point it's just impossible to do more, regardless of worrying about crashing. Just immediate fatigue and weakness preventing it.

But I'm wondering if I could budget my energy in a different way , so that I could manage to open my emotions and compassion and do these practices, even for a bit each day? Then I can turn off my emotions to protect my energy, for the rest of the day. Like I do go on my phone and waste time emailing doctors when I could let my caregiver do that and reading tabloid news and so on and so on. I'm not sure it adds up to the same amount of energy as I need to practice, but maybe it will.
Emotions and manually turning them on really does take a lot of energy. And the cognition for more advanced vajrayana practices like tonglen or chod/"feeding your demons" .

Anyway I desire to practice now so much. It's ironic bc at some points in my life I had the energy and didnt meditate and now I dont have the energy and want to , anyway, trying to see about all of this
 
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frozenborderline

Senior Member
Messages
4,405
Another idea is to use meds in @Hip 's list of PEM busters , or supplements. Treat it like PT. If I'm going to do activity 2whether cognitive or not... plan for it. And attenuate the consequences. Anyway between the couple treatments I'm having soon (one structural and one immunological) plus good old fresh wilderness air , I'm convinced I can reduce my PEM a lot in medium term, and maybe even full remission. However I want to practice buddhism now. Not wait until I'm better or something.
 

Howard

suffering ceases when craving is removed
Messages
1,332
Location
Arizona
I am a novice when it comes to all things Buddhism.. focusing solely upon the Four Noble Truths and the Eightfold Path. NOT craving is my primary moment to moment focus. Everything and anything beyond the basics is too complex for me (exhausting, too).

Emotions and emotional recognition (in moderation) gives me energy, overall. When I am not aware of my emotional state, or do not regularly acknowledge it, the suppression itself becomes exhausting. Or my reactions to different life happenings are out of sync with the gravity of the situation (overreactions/non-reactions).

To get there, I sometimes watch emotionally charged dramas on television, or invest myself in others' pain and/or personal issues without allowing myself to be enveloped completely.

So, to stay emotionally balanced, I must regularly ask myself how individual passing thoughts make me feel.. in real time as my day progresses.

Wanting

I am also wanting to meditate more frequently and with more dedication when I am worse off physically. It's my medicine, but also, something I feel I do not need when I am not as "sick" (physically suffering).

Mantras were too noisy for me, requiring too much effort to focus.

Tasks

I often ask myself the following, to determine my current mental state:

Is what I am doing right now important?

Is what I am doing right now causing me stress?

Is what I am doing right now bringing me joy?

Am I present/mindful doing what I am doing right now?

It's some combination of these. Recognition. Being aware of the thoughts I am thinking. And ideally, stopping them at regular intervals. Letting my intuition flow.


Hopefully something here helps,
H
 

Rufous McKinney

Senior Member
Messages
13,249
but focusing on giving, what is the true path, would surely give you more energy and peace.

well, thats what we often hear, yet this is the illness which results in You Can't Volunteer at the Soup Kitchen.

helping others, giving to others, service to others...is a path but one thats very hard for us because of whats happened.

I was outside being civic, over some broken glass by the dumpster, when I realized I can't be sweeping up this broken glass. My physical limitations. I abruptly- surrounded the broken glass with some cardboard boxes, and left it there, hoping somebody else would finish the civic task I started.
 

Rufous McKinney

Senior Member
Messages
13,249
My practice is: the collapse on the bed.

the entire purpose is to cease thinking, or having thoughts or pondering or doing or even pretending to think about doing. I then seem to reach an outer Galaxy, and I find it incredibly wonderful there, floating out there.

and I have to lie on my stomach in a particular position to achieve this state of great peace. And its very reinvigorating.

So maybe thats not meditating, or being Zen or whatever. But its what I can do. Its feasible, and comes with a great reward (less ammonia?)
 

frozenborderline

Senior Member
Messages
4,405
My practice is: the collapse on the bed.

the entire purpose is to cease thinking, or having thoughts or pondering or doing or even pretending to think about doing. I then seem to reach an outer Galaxy, and I find it incredibly wonderful there, floating out there.

and I have to lie on my stomach in a particular position to achieve this state of great peace. And its very reinvigorating.

So maybe thats not meditating, or being Zen or whatever. But its what I can do. Its feasible, and comes with a great reward (less ammonia?)
Actually it's a lot like the hindu practice of pratyahara, or even corpse pose or a combination
 

Rufous McKinney

Senior Member
Messages
13,249
even corpse pose or a combination

my "neck issues" involve some problems wiht lying down with my head back. And then my spine isn't going to tolerate the other approved positions!

my PT suggested the deep breathing in these types of poses would be helpful for my Not Able to Exercise condition. I should try again.....
 
Messages
52
Location
UK
Posting just to subscribe really, and wish you luck. My meditation practice of 15ish years has never got beyond simple breath-counting (and I'm still 'bad' at it in the sense of thoughts creeping in all the time). But without it I'd be lost/likely manifesting all my old ADHD symptoms. The more advanced stuff does sound a bit like 'work' and it isn't obvious to me what the workaround could be (a bit like doing full-on yoga as opposed to a simple stretching routine). Could you devise a way to divide the work up into chunks to then be put together at a later date/a remission day (if you have those)?
 

frozenborderline

Senior Member
Messages
4,405
"bodhichitta, traditionally defined as a longing to awaken so that we can help others do the same, a longing to go beyond the limits of conventional happiness, beyond enslavement to success and failure, praise and blame."
 
Messages
19
I find it difficult to regularly do any practices, though I wonder sometimes if just being in this state for years on end is a kind of practice in itself. Maybe that part of me behind everything that is always watching is learning in ways that I am not aware of currently.
 
Messages
19
Near constant anhedonia and dissociation make anything like Bodhicitta or anything involving emotion out of reach for me. Are any of you familiar with St. John of the Cross and the dark night of the soul? He had those experiences while he was imprisoned, and later when he wrote about it, it came on again. Makes me wonder if there is some overlap in experiences like that and with what we deal with. Stephen Buhner mentions somewhere I think in Healing Lyme about shamanic initiation involving becoming deathly ill with something that eats you down to the bone and then reforming oneself if you survive, I would love to read more about that specific idea but haven't found a good source yet. Haven't had a whole lot of energy to look.
 

Rufous McKinney

Senior Member
Messages
13,249
Are any of you familiar with St. John of the Cross and the dark night of the soul?

Yes, I am familiar with this powerful Process. I consider all this to be a component of that entire thing.

Its alchemical.

We are experiencing our version of the Dark Nite. And we may emerge, transformed. And that might take place on a spiritual level. or some other level we do not understand.

A book I have worked with focuses on this Dark Nite, this suffering we experience. We feel anxiety. We feel fear. We seek the cause of our misfortune. We blame.

We have to keep letting things go. The things we don't need. False roots, you might say. Keep pruning. They bear no fruit.

Talk about having to let things go, get ME CFS.......

And I find it ironic that in the chapter of this book addressing this issue, the last sentence says this-

"You rise from the ashes like a phoenix"