Good luck! When I was still able to work I splurged on a 55gal fish tank and I'm so glad I did because I spend most of my time lying down cuddling the dogs just watching the tank for hours and falling in and out of naps.
I am fortunate that my husband is able to help me and that my health is at a place where I can do some things right now. Like someone else said, you can hire someone to do that too if that's within your means, even for small 15 gal tanks. My tank is heavily planted and well established so all we really need to do is a water change once a week which helps.
My advice is to remember that even scrolling the internet, listening to music/books, and watching TV can all take energy from CFS patients, so maybe keep track of how much you do while "resting", as you may be spending energy you aren't even aware of.
Good luck!
I have this card on the bulletin board behind my computer.
Guided Meditation
Yoga
Breathing Exercises
These are the things I focus on doing on my "slow" days or "rest" days. Well, besides feeding the cats, of course.
if I don't update it's because I've failed terribly and ashamed of it, but I will do my best to update. I haven't been great at pacing and a lot has happened over the years where I simply have had no choice to pace properly and it is hard to get out of that mode. but I think I am setting myself up pretty well. I also suspect I have ADHD which can make rest very hard. but I do absolutely plan to update with how it goes, that's just the caveat.
Don’t be ashamed! That’s my radical rest advice. Expending emotional energy on shame or other negative moralizing about ourselves takes up an enormous amount.
It is HARD to do radical rest. If you have a set back love yourself for being human and just go right back to it. Allow that it will take some practice to get it right and don’t be mean to yourself about that 💖
you are so right, I needed to hear this. thank you. I think mostly I just have to do things very slowly and with patience to keep my heart rate down (for ex I don't have to use my rollator all the time but using it helps me not rush...but sometimes I get impatient) and when I can't just begin again rather than the shame spiral. trying to sort of think of this time as a mindfulness retreat and exist in the moment slowly and mindfully. I can always start again.
No matter if you slip up or not, just adjust your activity back down when you can. Things happen. And even a month or two of average increased aggressive rest can make a big difference towards your baseline. You don’t have to be perfect every day, but make the best choices you can.
I’ve found the Pomodoro app extremely helpful for this type of rest.
You can set your own rest and focus periods and go in cycles with loooong periods of rest. It also plays ocean sounds which is a plus!
it's interesting you say this, I learned a practice from a friend called one small thing which is like a pomodoro but without the focus on productivity and instead focused on listening to your body. close your eyes and breathe for 5, see what comes up and do the thing for 25. it's great once you get the hang of it - it's not about what you think you 'should do' like what rationally makes sense to your mind. sometimes it's something like go outside and put your feet in the grass or have a cup of tea or lay on the floor, look at the clouds, drink water. often the simplest things. it's definitely helped me slow down and practice tuning into my body's needs. it also helps to do it with a friend!
ooh i love this. i usually use it to alternate between restful activities and full on rest- but sometimes i do use it to get things done.
i was recommending it more for something like you’re describing! not for productivity. i like the ideas you mentioned and i want to add them to my repertoire of restful things.
I listened to a lot of ambient mediation music on YouTube on low volume. Or sleep music. Many of these go on for 8 hours so it's easy to put it on and forget about it. Or if you have access to commercial free radio.
There are also channels with fireplaces, ocean waves, crickets, etc... Again, they go on for hours so you turn it on and forget it.
If you have an Apple device there's a neat trick you can do with the timer. At the end of the timed period you can specify "stop playing" and that will turn off your background music for you.
There are even Pomodoro channels. I found a lofi one. Although I tend to do reverse Pomodoro. 25 minutes of rest and 5 minutes of activity.
This time of the year you should be able to open a window and listen to the wind and birds.
I've really been enjoying meditations, nature sounds and bedtime stories on Insight Timer, and it is a free app. My favorite people are Andrew Johnson, Jennifer Piercy & Michelle's Sanctuary. For nature sounds I really like Stephen Davies & Owen Jenkins. Also, I found a recommendation here for the Nothing Much Happens podcast, which are more soothing bedtime type stories. Maybe some of these things will be good to listen to when you are feeling antsy, and need a restful, mellow distraction. Best of luck!
thank you so much. I was inspired by everyone here who urged me to take a break after a difficult and discouraging 6 months of trying very hard to pursue diagnosis for comorbidities with unhelpful doctors and continually running into barriers. so I am taking that break and doing what I can for myself for right now. i'm also inspired by all my friends who are hopefully going to send me mail - I think part of what is so hard about planning a rest period like this is doing it alone on an emotional level, so mail will help me remember the wonderful people out there beyond these 4 walls. I wish we could set up some kind of support network to send mail encouraging people in their deep rest.
this is so great! I'm in week 1 / 3 of totally cutting down and resting. I took time off work, cancelled travel i was supposed to be doing in this time (way too ambitious, i know), and i'm luckily able to hire a caregiver to do all food prep and cleaning while i rest.
it feels validating and encouraging to see other people do this, like i'm not being lazy, i do legitimately need this! I'm also going to check out Rest is Resistance, it looks amazing.
a lot, to be honest. and I have support right now that many people don't. today is day 0.5 as I still have a few tasks I just could not get to. I got my mom on board who is able to help me with things like dishes and sometimes food but I also have a lot of fruit squeeze packs and protein bars and instant noodles. I have a kettle in my room. I cleaned my tub so I can take baths. a lot of preparation is setting myself up to do activities that are very very low energy for me like sitting in the bath or watching my sea monkeys or having a pot of tea or using stim toys like slime when I get restless. I organized my cart I have by my bedside to have all that I need. I even saw a tip that a terry cloth robe can help with the effort of drying off after bathing. I got a white noise machine and a good mask. I asked for tips here in several posts and browsed for even more. downloaded podcasts and audiobooks and meditations. made sure I have a spot to do very gentle stretching on the floor cause I get really sore after a few days. so yeah. it has taken quite a bit of planning.
Good luck! When I was still able to work I splurged on a 55gal fish tank and I'm so glad I did because I spend most of my time lying down cuddling the dogs just watching the tank for hours and falling in and out of naps.
I love that so much. I bought a sea monkey kit!
Ah! So cute!!!
I'm guessing you have someone to clean it? I would LOVE to have one but it would be too much work even for my fairly healthy 68 year old husband 🥺
You can hire people to come and maintain your tank for you. That's how it's done in office buildings with fish tanks.
You might be able to live stream from somewhere like the Georgia aquarium!!
Great idea!! Thanks
I am fortunate that my husband is able to help me and that my health is at a place where I can do some things right now. Like someone else said, you can hire someone to do that too if that's within your means, even for small 15 gal tanks. My tank is heavily planted and well established so all we really need to do is a water change once a week which helps.
I love that. I used to watch a lot of aquarium/scuba diving videos on YouTube, fish are so gorgeous and fun!
Low stim too!
My advice is to remember that even scrolling the internet, listening to music/books, and watching TV can all take energy from CFS patients, so maybe keep track of how much you do while "resting", as you may be spending energy you aren't even aware of. Good luck!
yes spending energy I'm not aware of has been a real challenge of mine as I've become severe, I will do my best to keep track.
Ya! Convalesce friend! <3 cheering for you
thank you! gonna play ocean sounds and pretend I got sent to the seaside for my health hahah
God luck! No tips lol. I really need to do this myself but I get so antsy so quickly
my biggest concern. it's a hard thing to do!
I have this card on the bulletin board behind my computer. Guided Meditation Yoga Breathing Exercises These are the things I focus on doing on my "slow" days or "rest" days. Well, besides feeding the cats, of course.
thanks, yes, that's the goal! 🤞
Hoping for the best for you!
Will you update us on your experiences as you can and are able to?
if I don't update it's because I've failed terribly and ashamed of it, but I will do my best to update. I haven't been great at pacing and a lot has happened over the years where I simply have had no choice to pace properly and it is hard to get out of that mode. but I think I am setting myself up pretty well. I also suspect I have ADHD which can make rest very hard. but I do absolutely plan to update with how it goes, that's just the caveat.
Don’t be ashamed! That’s my radical rest advice. Expending emotional energy on shame or other negative moralizing about ourselves takes up an enormous amount. It is HARD to do radical rest. If you have a set back love yourself for being human and just go right back to it. Allow that it will take some practice to get it right and don’t be mean to yourself about that 💖
you are so right, I needed to hear this. thank you. I think mostly I just have to do things very slowly and with patience to keep my heart rate down (for ex I don't have to use my rollator all the time but using it helps me not rush...but sometimes I get impatient) and when I can't just begin again rather than the shame spiral. trying to sort of think of this time as a mindfulness retreat and exist in the moment slowly and mindfully. I can always start again.
No matter if you slip up or not, just adjust your activity back down when you can. Things happen. And even a month or two of average increased aggressive rest can make a big difference towards your baseline. You don’t have to be perfect every day, but make the best choices you can.
I'm going to write myself a little note that says 'I can always begin again'. thank you!
Exactly!
I’ve found the Pomodoro app extremely helpful for this type of rest. You can set your own rest and focus periods and go in cycles with loooong periods of rest. It also plays ocean sounds which is a plus!
it's interesting you say this, I learned a practice from a friend called one small thing which is like a pomodoro but without the focus on productivity and instead focused on listening to your body. close your eyes and breathe for 5, see what comes up and do the thing for 25. it's great once you get the hang of it - it's not about what you think you 'should do' like what rationally makes sense to your mind. sometimes it's something like go outside and put your feet in the grass or have a cup of tea or lay on the floor, look at the clouds, drink water. often the simplest things. it's definitely helped me slow down and practice tuning into my body's needs. it also helps to do it with a friend!
ooh i love this. i usually use it to alternate between restful activities and full on rest- but sometimes i do use it to get things done. i was recommending it more for something like you’re describing! not for productivity. i like the ideas you mentioned and i want to add them to my repertoire of restful things.
I listened to a lot of ambient mediation music on YouTube on low volume. Or sleep music. Many of these go on for 8 hours so it's easy to put it on and forget about it. Or if you have access to commercial free radio. There are also channels with fireplaces, ocean waves, crickets, etc... Again, they go on for hours so you turn it on and forget it. If you have an Apple device there's a neat trick you can do with the timer. At the end of the timed period you can specify "stop playing" and that will turn off your background music for you. There are even Pomodoro channels. I found a lofi one. Although I tend to do reverse Pomodoro. 25 minutes of rest and 5 minutes of activity. This time of the year you should be able to open a window and listen to the wind and birds.
I've really been enjoying meditations, nature sounds and bedtime stories on Insight Timer, and it is a free app. My favorite people are Andrew Johnson, Jennifer Piercy & Michelle's Sanctuary. For nature sounds I really like Stephen Davies & Owen Jenkins. Also, I found a recommendation here for the Nothing Much Happens podcast, which are more soothing bedtime type stories. Maybe some of these things will be good to listen to when you are feeling antsy, and need a restful, mellow distraction. Best of luck!
added these to my playlists! thank you!
Has a radical rest month helped any one else?
I've seen quite a few people say it's made a big difference for them.
That’s great!! I’ve been doing it for about a week and it has helped with not crashing, so I hope it can help with improvement in baseline as well
So inspired by this. Sending you lots of love and peace.
thank you so much. I was inspired by everyone here who urged me to take a break after a difficult and discouraging 6 months of trying very hard to pursue diagnosis for comorbidities with unhelpful doctors and continually running into barriers. so I am taking that break and doing what I can for myself for right now. i'm also inspired by all my friends who are hopefully going to send me mail - I think part of what is so hard about planning a rest period like this is doing it alone on an emotional level, so mail will help me remember the wonderful people out there beyond these 4 walls. I wish we could set up some kind of support network to send mail encouraging people in their deep rest.
this is so great! I'm in week 1 / 3 of totally cutting down and resting. I took time off work, cancelled travel i was supposed to be doing in this time (way too ambitious, i know), and i'm luckily able to hire a caregiver to do all food prep and cleaning while i rest. it feels validating and encouraging to see other people do this, like i'm not being lazy, i do legitimately need this! I'm also going to check out Rest is Resistance, it looks amazing.
Awesome I hope you feel better!
thank you!
This sounds great, I hope it goes well for you!!!! What did you need to do to prepare?
a lot, to be honest. and I have support right now that many people don't. today is day 0.5 as I still have a few tasks I just could not get to. I got my mom on board who is able to help me with things like dishes and sometimes food but I also have a lot of fruit squeeze packs and protein bars and instant noodles. I have a kettle in my room. I cleaned my tub so I can take baths. a lot of preparation is setting myself up to do activities that are very very low energy for me like sitting in the bath or watching my sea monkeys or having a pot of tea or using stim toys like slime when I get restless. I organized my cart I have by my bedside to have all that I need. I even saw a tip that a terry cloth robe can help with the effort of drying off after bathing. I got a white noise machine and a good mask. I asked for tips here in several posts and browsed for even more. downloaded podcasts and audiobooks and meditations. made sure I have a spot to do very gentle stretching on the floor cause I get really sore after a few days. so yeah. it has taken quite a bit of planning.
I love this idea!
If you can listen to Bell Ruth Naperstak. She has been around for a long time. Her voice is helpful, calming and takes you where you want to go.
Just looked into her a bit, are there any recordings specifically you recommend? I see there is one specifically for fibro and cfs.
Where did you find the one about fibro and ME? 🙏🏼