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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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Messages
59
After having written all of this it seems as though I may possibly have misunderstood the question, but -

This is an issue I've been working on and working out in my head for the past three years.

How do I spend the hours of my day when I am not meditating / practicing presence?

Well, Ideally I would be able to practice presence all day long. But I don't know if that's possible. Although at my best, I do practice presence during the silences, the intervals between the mindless activities taking up space in my brain.

You Asked

To me, it's of the utmost importance to recognize the cognitive activities that physically deplete us.

Having done so, we seek out alternatives, ideally something meaningful to occupy our time, right?

Well, perhaps we should ask ourselves…

What are our individual goals, short-term or long-term? And what can we do “right now” to work towards those goals?

Well, that's a start. But there's more to life than working on our daily goals. And besides, that's not my motivation for posting here.

Me

I am bedridden all the time and for the time being I am limited to stretching, changing positions, and maybe execute a short burst of typing from time to time.

Self-awareness

So for me there's a hierarchy, a personal listing of known cognitive activities that will drain me faster than others.

There are also activities that aren't very taxing, but do nothing more than waste time, providing little value, other than being a pointless distraction.

Do we need pointless distractions? Probably, yes.

My road to mindfulness requires setting timers on my phone, usually an hour or so apart. When these alarms go off they contain a message instructing me to partake in scheduled downtime.

Example:
Upon waking - No media access until 8am.

Instead, I enjoy the sunrise, the changing colors in the sky, the changing shades of light in my bedroom, the cat waiting on her morning meal, listening to the birds getting busy, and things of that nature.

After 8 o'clock I may watch a television show or some other video of interest, but nothing too intense.

Maybe I'll watch an old black and white episode of The Fugitive, or an animal rescue show.

Would I rather watch a high-minded documentary, reread an especially difficult novel, or spend hours needlessly memorizing baseball statistics?

YES!

But I can't, right now, in this moment.

My daily objective is one hour on, then taking one hour off.

So…

Research is off-limits unless absolutely necessary and specific to something I am currently experiencing, something needing a resolution immediately.

Solving problems that don't exist, hoarding information, examining and assessing the current political climate, and any kind of judging are also off limits.

As someone already mentioned, these activities are part of the Monkey Mind.

Ruminations are okay, not too draining, but not too productive either.

And I do find myself watching Slow TV, or slow videos, where not much happens. Watching does occasionally put me into autopilot mode, but if I'm doing it right, also offers opportunities for mindfulness.

Live Streaming

I go for quiet walks at night through downtown Tokyo, head to the beach for some relaxation and people observation, ride a train through Thailand, catch a bus in Hong Kong, or watch birds feeding, live from the jungles of Panama.

And if I'm hitting on all cylinders, I write things. That's how I practice letting go. On my better days I utilize voice-to-text and “let go” at a rate of several thousand words per day.

And sometimes I post these words on Phoenix Rising, but mostly, I keep them to myself.

Music to My Ears

And finally, if I'm in a really good place physically and emotionally, I create or edit my own music. There are all sorts of music apps out there that allow someone who is, for the most part, disabled, access to creating original music.

And there are some apps out there where you don't even have to be a musician to make a song. If you like music, you can create music. Just push a couple buttons and check a couple boxes. That's it.

What We Do

I don't remember who this quote is from, but I find it rings true.

“In the absence of clearly defined goals, we become strangely loyal to performing daily trivia, until ultimately we become enslaved by it.”

When I am at my best, and when I have my most energy, it's always after having been productively idol.

Philosophically Speaking

The way “we as humans” own and operate our bodies versus the way we did only one hundred years ago, or one thousand years ago, should raise red flags. Humans are adaptable, but were we meant to adapt this quickly? Is humanity currently suffering from growing pains?

Progress and Modern Society

Perhaps it's wholly unnatural to sustain ourselves in an artificial environment, with artificial light sources, and artificial activities to keep us occupied. I'm not sure what all that means, but I know there's something not quite right with all of this, the primary way we go about our daily existence these days.

And I'm not sure humans have found the best way to adapt to all this readily available technology either. We may be suffering from overexposure to artificial stimuli. There's a constant barrage from all directions. And that's probably the last thing “we” need.

Concluding

None of what I wrote may be at all sensible, but deep down I feel there's a better way, and in our cases, a very necessary way we need to exist in order to accelerate our recoveries.

Having said all that, I still have a very difficult time disengaging throughout the day. Shutting down my brain seems unnatural and counterintuitive, especially considering that my brain is what got me here… wherever here is.

Even so, it took me a lifetime to get here, to fill my brain with useless debris. And now I'm in the process of tuning out and letting go.


Howard
After having written all of this it seems as though I may possibly have misunderstood the question, but -

This is an issue I've been working on and working out in my head for the past three years.

How do I spend the hours of my day when I am not meditating / practicing presence?

Well, Ideally I would be able to practice presence all day long. But I don't know if that's possible. Although at my best, I do practice presence during the silences, the intervals between the mindless activities taking up space in my brain.

You Asked

To me, it's of the utmost importance to recognize the cognitive activities that physically deplete us.

Having done so, we seek out alternatives, ideally something meaningful to occupy our time, right?

Well, perhaps we should ask ourselves…

What are our individual goals, short-term or long-term? And what can we do “right now” to work towards those goals?

Well, that's a start. But there's more to life than working on our daily goals. And besides, that's not my motivation for posting here.

Me

I am bedridden all the time and for the time being I am limited to stretching, changing positions, and maybe execute a short burst of typing from time to time.

Self-awareness

So for me there's a hierarchy, a personal listing of known cognitive activities that will drain me faster than others.

There are also activities that aren't very taxing, but do nothing more than waste time, providing little value, other than being a pointless distraction.

Do we need pointless distractions? Probably, yes.

My road to mindfulness requires setting timers on my phone, usually an hour or so apart. When these alarms go off they contain a message instructing me to partake in scheduled downtime.

Example:
Upon waking - No media access until 8am.

Instead, I enjoy the sunrise, the changing colors in the sky, the changing shades of light in my bedroom, the cat waiting on her morning meal, listening to the birds getting busy, and things of that nature.

After 8 o'clock I may watch a television show or some other video of interest, but nothing too intense.

Maybe I'll watch an old black and white episode of The Fugitive, or an animal rescue show.

Would I rather watch a high-minded documentary, reread an especially difficult novel, or spend hours needlessly memorizing baseball statistics?

YES!

But I can't, right now, in this moment.

My daily objective is one hour on, then taking one hour off.

So…

Research is off-limits unless absolutely necessary and specific to something I am currently experiencing, something needing a resolution immediately.

Solving problems that don't exist, hoarding information, examining and assessing the current political climate, and any kind of judging are also off limits.

As someone already mentioned, these activities are part of the Monkey Mind.

Ruminations are okay, not too draining, but not too productive either.

And I do find myself watching Slow TV, or slow videos, where not much happens. Watching does occasionally put me into autopilot mode, but if I'm doing it right, also offers opportunities for mindfulness.

Live Streaming

I go for quiet walks at night through downtown Tokyo, head to the beach for some relaxation and people observation, ride a train through Thailand, catch a bus in Hong Kong, or watch birds feeding, live from the jungles of Panama.

And if I'm hitting on all cylinders, I write things. That's how I practice letting go. On my better days I utilize voice-to-text and “let go” at a rate of several thousand words per day.

And sometimes I post these words on Phoenix Rising, but mostly, I keep them to myself.

Music to My Ears

And finally, if I'm in a really good place physically and emotionally, I create or edit my own music. There are all sorts of music apps out there that allow someone who is, for the most part, disabled, access to creating original music.

And there are some apps out there where you don't even have to be a musician to make a song. If you like music, you can create music. Just push a couple buttons and check a couple boxes. That's it.

What We Do

I don't remember who this quote is from, but I find it rings true.

“In the absence of clearly defined goals, we become strangely loyal to performing daily trivia, until ultimately we become enslaved by it.”

When I am at my best, and when I have my most energy, it's always after having been productively idol.

Philosophically Speaking

The way “we as humans” own and operate our bodies versus the way we did only one hundred years ago, or one thousand years ago, should raise red flags. Humans are adaptable, but were we meant to adapt this quickly? Is humanity currently suffering from growing pains?

Progress and Modern Society

Perhaps it's wholly unnatural to sustain ourselves in an artificial environment, with artificial light sources, and artificial activities to keep us occupied. I'm not sure what all that means, but I know there's something not quite right with all of this, the primary way we go about our daily existence these days.

And I'm not sure humans have found the best way to adapt to all this readily available technology either. We may be suffering from overexposure to artificial stimuli. There's a constant barrage from all directions. And that's probably the last thing “we” need.

Concluding

None of what I wrote may be at all sensible, but deep down I feel there's a better way, and in our cases, a very necessary way we need to exist in order to accelerate our recoveries.

Having said all that, I still have a very difficult time disengaging throughout the day. Shutting down my brain seems unnatural and counterintuitive, especially considering that my brain is what got me here… wherever here is.

Even so, it took me a lifetime to get here, to fill my brain with useless debris. And now I'm in the process of tuning out and letting go.


Howard

Hi Howard,

Thank you for your lengthy reply. I thought you made a lot of good points.

Yes I am working on a "menu" of low cognition activities that I can use to rest throughout the day. I also use voice dictation software and on a really good day I can dictate some of what I am thinking and feeling.

I do think I have some goals and I'm trying to be kind & compassionate with myself about the winding road I am taking towards them. I don't know about disengaging, but I think I am getting better at knowing what to prioritise and use my limited energy on.

Wishing you beautiful mornings and calm evenings.

Dave
 

Rufous McKinney

Senior Member
Messages
13,249
QUOTE="Howard, post: 2187858, member: 36059"]nothing ever really happens when you're laying in bed all day, everyday.[/QUOTE]

I understand.....my version of the delights are: looking out my bedroom window at a toddler downstairs. I might say hi, when about twice a week, the trash has to get taken out. I'm on the second floor: have rooftops, treetops. I gaze at them at times. Squirrels walk around on the phone wire freeway, they are cute. Crows might show up and hold a Convention. Here lately: I'm exposing myself to folks here, and this community, which has been helpful in making me feel less all alone. Otherwise, my poor husband is the receiver of most of this angst.

Each day, there is this opportunity to consider: that I might go out for a little while and do a little something. Most days, it remains just an idea. And then its that meloncholy feeling, oh well, Again.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
Hi @daveu one thing to keep in mind about our software is that you can only @ or tag up to 5 people in one post. I am watching your thread in hopes that I can be helpful to you.
@jesse's mom, @daveu
I don't think that's the case any more ..... I use to be flummoxed when I wanted to tag more than 5 people, then I discovered that so long as I didn't tag more than 5 or 6 consecutively, it worked like a charm. So tag as many as you want, just break them up, like in daveu's message here, with text in between, and all the tags should be active. Unless the update's changed all that, and if it has, DAMN !!! Foiled again !!!!
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@daveu
This is a day filled with helpful hints.

When you hit the 'Reply' button on a post, the entire post will be copied in the 'Reply' window, leading to enormously long quotes

  • Instead, just highlight a portion of the post you're responding to so the person you're quoting, and subsequent readers, will know what you're responding to, then hit 'Reply', and only that portion of the post will appear in the 'Reply' window.
  • If you want to respond to several portions of the post you're quoting, or even multiple different posts in one reply, do the same thing: highlight what you want to respond to, but this time hit "Multi". It will go into a file with any other quotes you want to respond to. Then go down to the 'Reply" window, and on the left side, the second button is "Insert Quotes".
  • Hit that, and a large window will appear with all the portions you quoted, giving you a chance to rearrange the order if you want to, or remove a quote you may not need. Then hit "Insert Quotes" button, and all the quotes will appear in the "Reply" window, where you can respond to them one at a time instead of bouncing back and forth between the posts you want to quote from and the "Reply" window.
Whew. Writing all that wore me out. Well, not the writing part, the thinking it thru part.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
This is a system I discovered by accident the first month or so I was on this site, on how to get as many tags as you need to into one single post ....

Ok, testing, testing one, two, ten or so .....
@Wolfcub, @Howard, @MTpockets, @Moof, @Sundancer,


Now a little bit of text here to see if this work-around still works and we can actually dance the system ....
@jesse's mom @StarChild56


Hey, @percyval577 are you out there?

'Full fathom five/ Thy father lies/ Of his bones are coral made ... '
Which is Shakespeare, which of course brings us to @RebeccaRe, and we can't leave @CreativeB out of this ....


@Gingergrrl, are you getting this alert? Am testing this system .... @Rufous McKinney, are you receiving?

ANd just for fun, @YippeeKi YOW !!

Hey, @Shoshana, we're playing a new game here, called "Gaming The System", trying to see if we can defeat the 5 or 6 tag limit. So far, so good.

@Float wanna join our little reindeer game? And maybe @lior, if you're feeling a bit better....

Let's see how many of these registered as live tags, yes? Here we go ....

EDIT FOR ADDTIONAL INPUT ...... Sixteen tags, and every one of them registered as live. I clicked a few on just to make sure .... Lior, Moof and CreativeB are on the other side of the world, so may not check in right away ...... Shoshana and RebeccaRe are way up north/east, so may not be around right now .....

But if the tags are live, as they seem to be, they should be tagging/alerting around like crazed border collies ......
 
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YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@jesse's mom
Back in Nov or Dec 2018, I tagged 8 of us using this system, and have used it several times since. If the tags register as live, they should be 'alerting' the user names. This is why I hate change and progress. Rarely brings anything good, often wipes out what was good before.

You weren't the last tag, you were the 3rd of 4, you should definitely have received that tag/alert, since ithe tags were below the previous 5 or 6 that were allowable on the old system.

This is baffling. I hate mysteries like this.


I think the system still has a lot of bugs in it. I often hit 'like', think I've done that, move on, only to discover later that the 'like' didn't take. And I frequently have to close and then re-open a PR page from 'History' because it either starts dropping large pieces of the page or goes to white screen. On the worst day, I had to do that 6 times. And it sometimes takes forever to change pages, or go to a new thread. Very frustrating. I keep waiting for the bugs to settle out, but so far, no luck.


Here's a copy of daveu's post that included you .... it's on Pg 2 of this thread
@@anne_likes_red Hi Anne, yes I am getting diaphragm breathing from my mindfulness meditation. I actually gave an audiobook a try for the first time two days ago and it went really well so I'm excited to do more of that! It looks like I can get some audiobooks for free through the library system so that will help keep costs down.

@@Moof Thanks for the radio suggestion, I have tried that but found I prefer podcasts. Regarding your suggestion on hyperbaric oxygen therapy, what would I be trying to gain there? I'm not being critical, I just don't understand why I would do that? Is it because it's relaxing? Or is it more to do with the recent understanding that ME sufferers potentially experience different forms of hypoxia?

@@jesse's mom Hi Jesse's Mum, sorry about the tornadoes your part of the world has been experiencing recently! Yes, I am growing in my understanding and ability to do mindfulness meditation. It really does help, I'm just a sucker for reading Twitter or the news!!

@@MTpockets Hi, yes I tried my first audiobook two days ago following the recommendations to give it a try from this forum. It was a great success, so I am very encouraged.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi Dave, if aggressively resting. Laying with eyes shut (not trying to listen to anything) is the only way to really do this and it can make a big difference for some, so worth trying this for a set time in your day to see if you need this degree of rest for it to be really resting. I had a remission years ago and I was doing a lot of that kind of resting.

ME/CFS can be flared just as easily by many, by cognitive processes as doing physical activities can do. In my case even music due to its beats even if I'm not paying attention to words can be draining but that is more noticable to me when I'm going through a severe patch. I though do not listen to "a lot" of music as I know it does affect me negatively by affecting how much I'm resting.

Mindfulness meditation can actually be not resting if a person is holding focus to try to watch what their mind is doing. Letting thoughts freely flow without dwelling on them at all or "thinking" is more restful.

Anyway, figure out how much "aggressive rest" you want to do in a day and how much just "rest" you want to do in a day.. experiement and work out how much rest you do best with. Try to get some quality rest time each day (eyes shut, no noise) even if it's only a 20min session of it. Sometimes the best rest we can have is a sleep! If it does not negatively affect your ability to sleep at night, an afternoon nap can be great.

ps it does not count as rest if you are lying there frustrated either lol as any of us who have tried to enforced rest onto ourselves know . (most can manage a "short enforced complete" rest time though)
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I can't nap. I just can't fall asleep outside of my normal sleep times unless I'm severely ill (flu or whatever). I doubt that Stanford explains how people with problems falling asleep are supposed to nap. Falling asleep isn't something we can 'try harder' at (or try more aggressively). The people who came up with that protocol probably don't have any problems falling asleep.

Those of us who have reversed sleep cycles often can take a nap far more easily then it is for us to sleep at night, so for some of us it works quite well.
 

Sundancer

Senior Member
Messages
569
Location
Holland
This is a system I discovered by accident the first month or so I was on this site, on how to get as many tags as you need to into one single post ....

Ok, testing, testing one, two, ten or so .....
@Wolfcub, @Howard, @MTpockets, @Moof, @Sundancer,


Now a little bit of text here to see if this work-around still works and we can actually dance the system ....
@jesse's mom @StarChild56


Hey, @percyval577 are you out there?

'Full fathom five/ Thy father lies/ Of his bones are coral made ... '
Which is Shakespeare, which of course brings us to @RebeccaRe, and we can't leave @CreativeB out of this ....


@Gingergrrl, are you getting this alert? Am testing this system .... @Rufous McKinney, are you receiving?

ANd just for fun, @YippeeKi YOW !!

Hey, @Shoshana, we're playing a new game here, called "Gaming The System", trying to see if we can defeat the 5 or 6 tag limit. So far, so good.

@Float wanna join our little reindeer game? And maybe @lior, if you're feeling a bit better....

Let's see how many of these registered as live tags, yes? Here we go ....

EDIT FOR ADDTIONAL INPUT ...... Sixteen tags, and every one of them registered as live. I clicked a few on just to make sure .... Lior, Moof and CreativeB are on the other side of the world, so may not check in right away ...... Shoshana and RebeccaRe are way up north/east, so may not be around right now .....

But if the tags are live, as they seem to be, they should be tagging/alerting around like crazed border collies ......


You tagged me, being number 5
 

Sundancer

Senior Member
Messages
569
Location
Holland
hmm, thinking back. In the time that I was almost bedbound ( 22 hours per day, rest I needed to get food/drink and bathroom) I slept about 4 hours ( 2 times 2 hours) the period of the day that was reserved for sleeping i sang mantra's in my head, endlessly repeating, om tare tu tare etcetera ad infinitum .

it did work for me, no physical activity and no thinking, just the voiceless singing, had several ' mantra-programs' set up in my head for that. Now that i have a fallback and sleep-problems again the program starts up automatically when I wake up in the night.

this is one of them.

 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@Sundancer
i sang mantra's in my head, endlessly repeating, om tare tu tare etcetera ad infinitum .
I use a similar system, using Om mani padme hum chant and several others. Sometimes it works to get me to sleep, sometimes it only works to get me into sequential dozing, but it's better than reviewing every effing mistake I've made since birth, over and over again, doncha' know.

And thank you so much for the Om tare tuttare video, it's beautiful !!!

SO GRATEFUL THAT THE OLD EMOJIS/SMILIES HAVE BEEN RETURNED, AND PROFOUND THANKS TO @PatJ FOR HIS TIRELESS EFFORTS ON THIS !!!