Recommendations on ways to rest with little to no cognitive activity?

[daveu]

Hi there,

My name is Dave, I live in Britain and I have had ME going on nearly a decade now (here is my Introduce Yourself). My ME symptoms present as moderate.

I am trying to re-focus on my recovery this year. Currently resting for me is watching TV and film, which my ME Clinic case manager thinks is not really resting. She would like me to rest in the same way the current Stanford ME/CFS Treatment Protocol advises = "Rest aggressively, never crash, expend 50% of available energy, resting means no cognitive or physical activity".

I would like to rest aggressively but I find the only form of noncognitive resting I can do is mindfulness meditation which is fine but I can't really spend all day every day doing that. I experience severe myofascial pain in both forearms (think severe RSI) so I can't do any low-impact physical activity e.g. knitting.

I'm looking for recommendations from other members for ways of resting aggressively with no cognitive activity. Does listening to music work? I would like to listen to podcasts but I'm guessing that will count as cognitive activity…

Thanks

Edit: Apologies, I initially forgot to mention I experience severe myofascial pain in both forearms which is why mindfulness meditation ends up being my only form of noncognitive resting available.

 

[eva luna]

Hi Dave,

I suppose it depends on what are your areas of interest. For me, for instance, I find knitting very relaxing, as is diamond painting or painting by number (free app). I can read (or listen to) easy books. Music on the other hand is too much a stimulus for me. You have to try and find out for yourself, every one is different

 

[Learner1]

I've heard you have hyperbaric oxygen therapy available at low/no cost there in the UK.

I use a friend's chamber and have amazing naps - I font feel sleepy when i go in, but frequently fall asleep anyway. Recent ME/CFS research suggests we may be hypoxic, so you can kill two birds with one stone by HBOTing.

 

[daveu]

Hi Dave,

I suppose it depends on what are your areas of interest. For me, for instance, I find knitting very relaxing, as is diamond painting or painting by number (free app). I can read (or listen to) easy books. Music on the other hand is too much a stimulus for me. You have to try and find out for yourself, every one is different

Hi Eva,

Apologies, when I initially posted I totally forgot to mention I experience severe myofascial pain in both my forearms so low impact physical activities like you describe e.g. knitting are not available to me at this time unfortunately

Cheers

 

[daveu]

I've heard you have hyperbaric oxygen therapy available at low/no cost there in the UK.

I use a friend's chamber and have amazing naps - I font feel sleepy when i go in, but frequently fall asleep anyway. Recent ME/CFS research suggests we may be hypoxic, so you can kill two birds with one stone by HBOTing.

Hi there,

No I haven't heard of hyperbaric oxygen therapy! I have added to my list to investigate.

Thanks for the reply

 

[Wolfcub]

Hello @daveu and a warm welcome to Phoenix Rising !

I think that resting is not the same for everyone. What relaxes and helps some people may be too much for others...or maybe even not enough?

I find lying in a comfortable place where my body and neck is supported, and arms relaxed helps.
I have all sorts of things to amuse me! I listen to gentle classical music. That depends what mood I'm in...sometimes I like something stirring like Rachmaninov, and sometimes just a tinkly piano sound like Einaudi, or something really really gentle.
Also I don't like high volume. There is nothing wrong with my ears! LOL!

I also have a tiny mirror ball...try not to groan
I put it on the window sill, and when the sun shines, all sorts of beautiful starry lights shine on the ceiling, wink out and fade as the sun goes behind a cloud, then return again.
That has amused me many a time.

I also do a "raise my vibration" kind of thing. Not formal meditation, just my own invention. This is not strenuous. It consists of feeling loving energy more towards beings whom I know or who have passed over, and gratitudes. Maybe even prayer. Thankful prayer as much as asking for anything. Just attunement.

There are times when I just literally stare at the wall and think...well, if not "nothing" then very little. To "cabbage out" my brain is really pleasant! Much underestimated.

 

[Sundancer]

I remember rereading books when I was more ill. At first childrens-books, later normal books. As I already knew the plot the reading did not take much energy and I remember enjoying it. Enjoying the descriptions of scenery, the dialogues, zooming in more on the details then I did before.

but then, I've always been a reader.

screens tire me much more then books, listening to text is almost impossible as my auditive attention is damaged badly.

 

[Wishful]

As with Sundancer, re-reading favourite books is more relaxing than reading new books. I usually don't have a problem reading new books, but if I'm suffering from PEM, I might choose to re-read an easy, favourite instead.

"No cognitive activity"??? I'm not sure how to do that without dying or using drugs. I think we all vary on which cognitive activities are restful, and which are stressful. Meditation might be restful once you've mastered it, but trying to master it might be too stressful for some. Some computer games might require attention and quick reactions, but the escape from regular thinking might be restful for some people. I think this is one of those case where we individually have to experiment and judge the 'restfulness' of different activities.

I tried acupuncture once, and found the 'laying in dim light with relaxing music' to be restful. I just haven't felt the need to do that sort of thing 'aggressively'. Aggressive relaxation seems contradictory.

 

[YippeeKi YOW !!]

I also have a tiny mirror ball

I think that's brilliant, @Wolfcub ..... something soothing and mesmerizing about watching the patterns form and dissolve and re-form again. I'll start looking for one. But I don't tolerate bright sunleight too well right now, sooooo .....

I remember rereading books when I was more ill. At first childrens-books, later normal books.

I agree ..... my focus is poor right now, and absorbing information-dense material is something I save pretty much for medical/treatment research. For relaxation, I've started reading Harry Potter, decently written, mildly engaging, not particularly challenging or revving. When I'm doing really well, I go back to my assault on Kyle Harper's excellent, beautifully written and researched The Fate of Rome, proposing the theory that climate chnage, as much as all the other reasons given down the years for the fall of Rome, was the real cincher. The inevitable parallels to current issues makes this an anxiety-producing read, so it's only for really really good days, when I can fight off the predictable emotional downturn.

"No cognitive activity"??? I'm not sure how to do that without dying or using drugs.

Totally agree. Ridiculous proposition.

I think this is one of those case where we individually have to experiment and judge the 'restfulness' of different activities.

Yes. We all have different levels of triggers, and different intersts and aversions. I love knitting and used to find it restful, but for some reason, can no longer turn off my brain when I do it, so ..... out it goes. But for some reason, crochet doesn't have the same effect, even with complex, lace-like patterns. Go figure. Inline street skating was an almost perfect meditational state for me, in spite of the heightened awareness and lightening quick responses required to not kill yourself inadvertently. Unfortunately, not an option currently.

Aggressive relaxation seems contradictory.

Abso-effing-lutely. It's a tag that only the psychiatric-medical community could have come up with and stuck to, thinking it was ohhhh, so clever. It's like witless thinking ..... a perfect oxymoron.

 

[Wolfcub]

Oh...skating @YippeeKi YOW !! One of my favourite things to do....back in the day...
I loved roller skating, blade skating and the best of all....on the ice! Nope right now to that though!

 

[gbells]

The Stanford ME/CFS protocol means taking naps as well as longer sleep periods at night.

 

[Rufous McKinney]

I love knitting

I knitted anew after the 40 year career, the Baby Sweater, and had to count for the first 39 rows, ripped out the sleeve six times, and decided to live with Imperfection. Perhaps I was a Perfect Kid, and now, it gave me ME!

I got out the art supplies: and found the 45 minutes of "wet on wet' controlling the accident was about the same as running a marathon.

I like the deep hypnosis type tapes on You tube, selecting for voice preference. I find that I generate lots of Monkey Brain activity from the overheated inflamed ME brain, and so I find I can relax ALOT MORE with that gentle suggestive type voice in the background, and it will keep me floating and reminded to stay in Galaxy 16. Oh yes, don't grab the branch next to the river you were flowing down, etc etc. Oh, yes there is the staircase. Oh yes and there is giant meadow with all the Dogs, waiting to greet me. The Dog Meadow: brings great joy. I get the greatest rest during those types of sessions, on the bed, totally relaxed and just. Maximum do nothing.

 

[Wishful]

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.

 

[Rufous McKinney]

I can't nap.

Me either. The meditators are warned: don't lie down, you might fall asleep. My version is: don't sit up, the pain will be too great, you'll never really relax.

If I lie across the bed (sideways) on my stomach, NOT how I sleep at night, I can sometime achieve this Alpha Wave State which is great. For about: three minutes . Never lasts long.

And: can you imagine going to a SLEEP LAB and EVER GOING TO SLEEP under such a condition? Nuts.

 

[gbells]

Cytokines are very high with SEIDS and that interferes with REM sleep. Have you tried a time-release form of curcumin to lower them?

https://www.amazon.com/Absorption-CURCUMIN-InnovixLabs-BioPerine-extracts/dp/B00L775W3U

https://www.ncbi.nlm.nih.gov/pubmed/17883952

Because cytokines interleukin-1 beta (IL1) and tumor necrosis factor alpha (TNF) promote NREM sleep, they can shift sleep patterns in humans and animals, increasing NREM sleep. This, too, relates to the body’s immune response. In normal healthy sleep, brain temperature declines upon onset of NREM sleep and rises when the brain goes into REM. When the patient has a fever, sleep architecture changes: NREM sleep is fragmented, and REM sleep is suppressed. Less REM sleep could be evolution’s way of accommodating fever as an immune system response to infection by conserving energy.

https://www.tuck.com/cytokines/

 

[YippeeKi YOW !!]

Monkey Brain

I call it Drunken Monkey brain, when it riots out of control and there's not much you can do but try to round 'em up, herd 'em back into a safe place., close the door quickly, hope they don't start throwing stuff.

can you imagine going to a SLEEP LAB and EVER GOING TO SLEEP under such a condition? Nuts.

Totally insane. A concept brought to you by the same fine folks who coined the term "Aggressive Resting", and another way to wring more out of the wallets of the drained and desperate.

 

[YippeeKi YOW !!]

I loved roller skating, blade skating and the best of all

@Wlfcub
It was my favorite thing on earth in the way of aggressive cardio. It was a real challenge, because the streets aren't that friendly to in-liners, and dogs, especially the very large ones (whose owners helpfully let them off their leashes) think you're a giant rolling chew toy and can't resist the challenge.

Large black SUV's seem to have a real hate thing going on for us, and the only two times I came really close to serious harm was at the hands of SUV drivers, who clearly saw me, and turned into my path aggressively when I was rolling at speed down an incline, then stopped. Luckily I was pretty good and pretty fast, and I was able to execute tricky escape manuevers, which included grinding curbs and then jumpiing them, and in one case, just took the dive, slid under the SUV and out the other side before the @sshat driving it could register than and run me over. The miserable d!ck. My extremely colorful curses follow him to this day.

But God, I really miss it. So does my body. I think that was part of how I managed to survive the repeatedly undiagnosed and ignored cancer ..... I skated every evening, until the sad night when I realized I didn't have the strength to get back up the little hill to get to my front door. I took off my blades, trudged wearily up, and 2 1/2 months later, was in the ER being diagnosed.

I think if I can find the courage, that's the first thing I'm going to do when I'm better. But I was fearless then. Now, not so much. Lotta water, lotta bridges.

 

[Rufous McKinney]

Have you tried a time-release form of curcumin to lower them?

Answer: No, but thanks I will check out those links.

 

[Wolfcub]

@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.

 

[Dechi]

I can’t imagine who would just lay on a bed all day just staring at the celiling...

I can’t do much physically and get brain fog from many little things but I couldn’t stand doing nothing. 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. That’s all I have. I do sleep when I need to, 2-3 hours in the afternoon. Sometimes in the morning too.

The thing that relaxes me most is cuddling with my dog. Honestly, thank god for pets...

I’m not saying that’s what you should do though.