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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
@gbells If in fever we have less REM sleep because of the cytokine thing...then why do I always remember weird and extra-vivid dreams whenever I had a fever? Unless they were NREM dreams of course (as I hear REM isn't always necessary for dreams)
I always had those strange dreams in childhood when I had a fever.

Early in my SEIDS I couldn't get a fever so I couldn't remember having any dreams. After I did GcMAF and Doxycycline and immunostimulator supplements I recovered enough to dream.

I'm not sure what is going on in your case.
 

anne_likes_red

Senior Member
Messages
1,103
Hi Dave,

I wonder what your clinic case manager would make of this 'activity'? http://www.aaronswansonpt.com/constructive-rest-passive-alignment-90-90-position/

I also have myofascial pain (hips and quads) and I find relaxing/aligning like this really helpful...actually energising in my case. You'll already be doing some diaphragmatic breathing I think (??) with your meditation.
I'm thinking music would count as non cognitive so long as you're not a music student!
I'm guessing you might be advised not to listen to anything *too* stimulating or provocative. Surely some TV would fit the bill there? Country Calendar? ;) :D
Some audiobooks and podcasts might also count as suitable....especially if they're about a fairly passive pastime or restoration project...or something?

I second the dog idea too.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@Dechi
Maybe it’s why I’m not getting better and slightly worse every year. But I read, watch tv and play games on my tablet
Not if that's what works for you. We're all different, and 'staring at the ceiling' can take many shapes and forms. If you enjoy it and find it relaxing or at least diverting, I say go for it until you know for sure that it isn;t doing the job.
The thing that relaxes me most is cuddling with my dog. Honestly, thank god for pets...
I think that may be the one universal for most normal humans ... there's something about pets, especially dogs, or if you're lucky, an exceptional cat, that soothes the soul and brings hope to the dreariest circumstances. Cuddle on !!!
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
Have you tried a time-release form of curcumin to lower them?
@gbells, @Rufous McKinney
Curcumin reacts differently on different people. I tried it, precisely for its anti-inflammatory and other potentials, and it bit me on the @ss hard. I'd be careful with that, Rufous, and do some research on your own before trying it out on your already battered system.

No disrespect to @gbells, for whom it obviously has worked well, and who wanted to spread the joy, but I've learned the hard way that it seems that the better something works for someone else, the less likely it is to work for me. Just the crappy nature of this miserable bottomlessly crappy illness.
 
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Moof

Senior Member
Messages
778
Location
UK
If you get on OK with speech, @daveu, Radio 4 at low volume is good. There's very rarely any music, and when my brain's really tired, I find that I can simultaneously engage with it and tune it out. This is hard to explain, but it's where my brain feels engaged enough not to experience annoying boredom, but there's no real stimulation either. I can easily fall asleep if I need to, and the absence of visual stimulation means it's much more restful than TV.

It depends a lot on personal taste, though – obviously if you find it annoying, it won't work!

EDIT: Sorry, I meant to mention the MS National Therapy Centres, which offer hyperbaric oxygen therapy. There are centres in a number of major cities, though not all necessarily offer access to people who don't have MS. You can find your nearest by entering your postcode on this page:

https://www.msntc.org.uk/ms-therapies/oxygen-treatment/
 
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jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
I find that watching things on my computer are not as taxing as watching things on my TV. I do not know why this is other than I can look straight on and lot lookup. There are so many things that I watch on youtube that relax me! Bob Ross paints and speaks so gently that I can just float for hours!

Learning Meditation is not easy for everyone, but once you can get three minutes of Zen into a day.. it is transformational! I am practicing Metta, or Loving Kindness Meditation now. it is easier for me than trying to calm the monkeys. With a Mantra Meditation you give the monkeys a job.
 

Howard

suffering ceases when craving is removed
Messages
1,333
Location
Arizona
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
 

Rufous McKinney

Senior Member
Messages
13,363
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.

I enjoyed reviewing your contemplations, Howard, and I share many of them. As a "previously" highly motivated individual who is : quick, sharp, fully engaged- I have now become- the princess of Disengagement. I have friends who follow the more eastern philosophies, for instance, that contemplating ones navel while sitting doing nothing on a rock, leads to enlightenment. The funny part is: I don't see them sitting on that rock, doing nothing, very often. Its go go go.

To some degree, we have been compelled to sit on that rock and utter mono-sylables.

So I figure enlightenment actually does exist here, in this dreaming slow motion swirl. And I am enjoying the little dream I had this morning, just remembering a little bit of it was like a gift. Baby black panthers. I was hanging out with them.
 

Rufous McKinney

Senior Member
Messages
13,363
but I know there's something not quite right with all of this, the primary way we go about our daily existence these days.

When I look at the core things that bring direct joy, it is: an amazing song, its some remarkable drumming, its hanging out with wild animals, its hugging dogs and teasing cats, smelling and tasting rain; its watching toddlers and babies. Its being "seen", acknowledged for who you are, accepted, part of, not separated from.
 

Wishful

Senior Member
Messages
5,739
Location
Alberta
When I try to imagine myself listening to an audio book, I'm always reading an actual book, since I can't imagine myself sitting down for long without reading or doing some sort of handiwork. Listening to voices just doesn't hold my attention the way written text does.
 
Messages
89
I find that watching things on my computer are not as taxing as watching things on my TV. I do not know why this is other than I can look straight on and lot lookup. There are so many things that I watch on youtube that relax me! Bob Ross paints and speaks so gently that I can just float for hours!

Learning Meditation is not easy for everyone, but once you can get three minutes of Zen into a day.. it is transformational! I am practicing Metta, or Loving Kindness Meditation now. it is easier for me than trying to calm the monkeys. With a Mantra Meditation you give the monkeys a job.

This is my old yoga teacher! I didn’t know she had videos, thanks for posting. I really enjoyed it. I watch Bob Ross too.

I also make a habit of drinking tea, coffee, etc slowly while looking out the window. I watch nature docs. Reading any book is too difficult but I browse magazines and try to treat the internet the same way, no long articles or researching, just a little browsing then take a break. I have pretend naps most afternoons where I get to an almost asleep state. My old doctor always reminded me to practice being a “human being” not a “human doing” and I thought that was cute.

After reading Howard’s post I’m inspired to practice more mindfulness. So many good points.
 

Howard

suffering ceases when craving is removed
Messages
1,333
Location
Arizona
When I look at the core things that bring direct joy, it is: an amazing song, its some remarkable drumming, its hanging out with wild animals, its hugging dogs and teasing cats, smelling and tasting rain; its watching toddlers and babies. Its being "seen", acknowledged for who you are, accepted, part of, not separated from.

Part of the problem here has to do with creating new experiences. In a tangible sense, nothing ever really happens when you're laying in bed all day, everyday.

Yes, there are always things happening around us, but in order to notice our minds must be very quiet and still. Or at least for me, that's the case.

Beyond that, the most difficult for thing for me is the lack of “surprise” in my daily regimen. I crave the unexpected. And that's a problem. The unexpected IS happening, but more often than not I'm just failing to notice.

But I've already written at length about the element of surprise and how important it is to each of us, so I'll leave that one alone for now. :)

Maybe that's why I watch all these prison shows, or jail shows. I can relate to their predicament, not in a bad way, but I feel I can understand where they're coming from and why they do the things they do while incarcerated.

But what they're not showing, is the guy stuck in solitary confinement for months on end. I want to see how that person copes. I so badly want to relate to and observe that person directly.

H
 
Messages
59
@Wolfcub Hi and thanks for your welcome. Yes I think I could manage gentle classical music. I'm going to start trying that. And you are right, "cabbaging out" is underrated, I'm just not very good at it!

@Sundancer yeah, I think reading will be less cognitively draining for me than watching a screen. I agree as well that rereading favourite books is more relaxing. I'm trying to read Moby Dick at the moment, it is going very slowly…!

@Wishful Yes, it makes me feel better to know that others find the idea of zero cognitive activity challenging! I certainly think keeping up with my mindfulness breathing is probably my best chance of reducing cognitive activity to a minimum during the day. I don't nap during the day because it means I sleep worse at night.

@gbells I wasn't aware the Stanford ME/CFS protocol includes taking naps as well as longer sleep periods at night… That's interesting. Personally napping during the day makes it harder for me to get good sleep at night. I try to average 8 to 9 hours a night, seems to be the sweet spot for me for achieving my best sleep hygiene.

@Dechi yes, I actually found it intimidating to told to have zero cognitive activity. It sounded crazy making to me! I think listening to music & podcasts, reading, audiobooks, and mindfulness breathing are going to be the way to go for me. Like you say though, there is the temptation to think that because I'm not "doing a by the book" maybe that's why I don't recover?? A difficult tension.
 
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jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
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.

So if you want the last few members to get your tag alerts, make two posts!

I hope your day is going well!

P.S. I used to have to check Facebook all the time! No shame here!
 
Messages
59
@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.
 

Moof

Senior Member
Messages
778
Location
UK
@daveu – I'm not really sure what the benefits of hyperbaric oxygen are, as I haven't researched it. I just know that these centres are where most people access it. I tried it once, but only to support my friend (she was scared she'd have claustrophobia).

It's definitely not relaxing – quite noisy in fact – but of course one isolated session didn't have any effect on my ME. My friend, who has MS, has carried on; she says it worked for her once she'd built up to doing deep dives. I think some people with ME have benefitted too, but in truth I can't remember in what way!