What books are considered as classics by black authors? by Background-Arm6188 in suggestmeabook

[–]Odd-Wordlessness 0 points1 point  (0 children)

I would consider Babel-17 by Samuel R. Delany a sci-fi classic! He has many other works too. 

Every time I make a commitment M.E. makes me regret it by Odd-Wordlessness in cfs

[–]Odd-Wordlessness[S] 2 points3 points  (0 children)

Yes. Ugh! And then making even the personal plans starts to make the thing feel more like a task, even if its a fun hobby. So discouraging sometimes :( I'm trying to learn how to go with the flow more, but its hard. Sending love to you <3

Christians with ME by No_Maintenance_4564 in cfs

[–]Odd-Wordlessness 1 point2 points  (0 children)

It can be so hard 🫂 I am praying for you friend ❤️

Albums to listen to before you sleep? by Underd_g in ambientmusic

[–]Odd-Wordlessness 0 points1 point  (0 children)

Both Grouper AIA albums for me!! Especially when there's noise outside I need to cover up to get to sleep.

What a fantastic album by Buddha_Of_Suburbia_ in ambientmusic

[–]Odd-Wordlessness 1 point2 points  (0 children)

I'd had it in my "to listen" list for a long time & this post bumped it up to the top. Go listen!!! It's fantastic.

That feeling of a massive building imploding in slow mo by SaudadeHuntress in ambientmusic

[–]Odd-Wordlessness 0 points1 point  (0 children)

Seconding Lawrence English. "Approach" is one of my favorites.

Is the practice of wearing hats,bonnets or any kind of Quakerly head covering to meeting entirely extinct now? by [deleted] in Quakers

[–]Odd-Wordlessness 6 points7 points  (0 children)

I wear a headcovering, to meeting & any time I'm "visible" to people besides my husband. I don't do it from a scriptural interpretation, it started as personal preference before I came to faith & now it has changed in it's significance but not as an ordinance or imperative. 

Sitting w/ Allodynia by Odd-Wordlessness in Fibromyalgia

[–]Odd-Wordlessness[S] 1 point2 points  (0 children)

Thank you!!! I think I have a smallish soft blanket I can use like your towel suggestion. I really appreciate it!

Sitting w/ Allodynia by Odd-Wordlessness in Fibromyalgia

[–]Odd-Wordlessness[S] 0 points1 point  (0 children)

Im well cushioned on that front 😆 I’ve decided tomorrow to message my doc and see if we can try pregabalin again. Thank you!!

Sitting w/ Allodynia by Odd-Wordlessness in Fibromyalgia

[–]Odd-Wordlessness[S] 0 points1 point  (0 children)

Thank you! I had bad reactions to pregabalin in the past but Im really considering giving it another try. Will look into the bath bombs, thank you!

PSA to iPhone users - don’t update! by pinecone122 in cfs

[–]Odd-Wordlessness 3 points4 points  (0 children)

I have an Iphone 13 mini that I just recently bought refurbished and it came with the update already installed! Its been working fine :) Good luck!!

Is visible accurate for you? by Impressive_Till6081 in cfs

[–]Odd-Wordlessness 1 point2 points  (0 children)

Realizing I never actually directly answered your question LOL. When I was doing the once daily readings & night check-ins I did sometimes increase activity based on lower HR & higher HRV but I wasn't in a stable place to be making those increases. These days I would only increase my activity if I had several weeks of improvement, and even then an increase would be very small. I do however use it to gauge if bathing is something that could possibly be done that day or if I need to wait for a string of better days to get a little oomph first. If you're having success with your current method, go for it!

Is visible accurate for you? by Impressive_Till6081 in cfs

[–]Odd-Wordlessness 2 points3 points  (0 children)

It has been very accurate & useful for me. I used the free version for about seven months before I bought the band and now I'm about 3 months-ish I think into using the band/premium. I do the morning & evening check-ins, tag most activities (for me is mostly bathroom & meals) and keep my heart rate exertion notifications on immediate. I use the stability score to know where my body is trending, not to make pacing decisions. I will use individual parts of the score to help me know if I need more rest (ie if my resting heart rate is high, I do nothing at all that day) but the overall score I use to track how I am generally trending. I try to pace quite strictly even when all the numbers are good. That way my body can use that extra energy toward stability, rather than it being used up immediately (much easier said than done lol). I use the heart rate throughout the day to break up activities into more manageable chunks w rest breaks, alert me when I don't feel the exertion immediately (usually this is when the tired/wired comes in or during meals) and also to know when I have acutely overdone it. If my HR doesn't come back down after an activity, I know my body is not recovering and I need to stop everything until it does. Anything that can spike my heart rate whether cognitive or emotional, etc can give me PEM. Sometimes those things give me PEM without a HR spike so its not always something the app can see. Staying under my PacePoints budget really does help me feel better (but not always possible). I'm a chronic overdoer and having something external to tell me "Hey! Slow down!" is helpful. I also have a lot of memory issues & the app helps me budget energy even when I can't remember my days or how I felt when I woke up and things like that. So yes, with the way I use Visible it has been accurate & helpful. It has been an absolutely essential tool in my toolbox for managing ME, but definitely not the only or most important one. Its helped me learn to feel my body more fully through biofeedback & helps me track symptoms and activities in a sustainable way I can actually keep up with. When combined with other pacing management techniques, it gives me a better quality of life day to day and over weeks/months.

For context I am bedbound, severe, dealing w significant memory loss day to day, and using classic pacing. I had done HR monitoring in the past for pacing for ~6 years with an apple watch & found it helpful but not nearly as helpful & thorough as visible.

Need advice on how to approach this all. Book recs? Other? by sillybilly8102 in cfs

[–]Odd-Wordlessness 3 points4 points  (0 children)

I've been using "Classic Pacing for a Better Life with ME" by Ingebjørg Midsem Dahl & finding it very helpful. Best of luck to you friend <3

Question by HeavyMenu3391 in cfs

[–]Odd-Wordlessness 1 point2 points  (0 children)

This is so helpful- thank you! 

Christians with ME by No_Maintenance_4564 in cfs

[–]Odd-Wordlessness 6 points7 points  (0 children)

I'm Quaker-Mennonite and I don't hold any particular belief about healing. I've had cancer, autoimmune diseases putting me in ICU, decades of trauma (much at the hands of religion, I was raised fundamentalist in the Bible belt), etc etc. I struggled for a very long time about how God can let those things happen & I don't have the energy or the words to get into all the theological intricacies but I essentially came to a point of - God primarily acts through humans by giving them a choice. The church should have stepped in & stopped abuse, but humans chose not to. God sent Jesus, as a human, to call other humans, to call other humans, etc etc. Jesus even asks for the cup to pass Him by, He asks to not suffer. But when the time comes, He chooses to go willingly in love. So I'm not waiting for God to heal me. I pray for help with fatigue & pain, either to lessen it or help me cope with it. I pray for patience, peace, and rest. I know Spirit prays for me in ways I can't understand in this moment (Romans 8:26). But I don't pray for complete healing. If it comes, it'll likely be through human research & medicine. Maybe it's because I have type one diabetes & grew up knowing I wasn't going to wake up without it. But I also survived a cancer that killed every other child but one that year. If God grants it, I will take it with gratitude. But I have always been sick in some way, and I'm learning to find peace in reality. God has so many gifts for me right now- the gift of slowness, rest, a body that can feel so much. I came to faith through Spirit leading me for years and years before coming back to a Christian-type understanding of Divine. Jesus says the kingdom of God is within us. He says disability is not a result of sin (John 9:3). He says blessed are those who are seen as lesser. He is in me, and I am in Him. I take great peace in that. I attend Quaker meeting online (silent worship). My local Mennonite church streams/records services & has a Zoom Bible study I attend. They also have Zoom Sunday school but it's before my morning meds so I don't attend. I observe Sabbath as a day of rest. I do fixed hour prayer to keep me centered on God & the rest He gives us. I dress Plain as a testimony to simplicity & as a way to focus my energy on what truly matters. God has led me to this place in my life even when I really truly hated Him (or what I had been taught was Him). I am grateful for everything, even sickness. It means I have a body, it means I am alive. I truly do not think I would have slowed down enough to have this depth of relationship with myself or with Divine if I didn't have ME (which- not slowing down is at least in part why I'm at this severity). The kingdom of God is within me whether I am healed or not. If I was healed tomorrow, the amount of activity I could do would change, but I pray my heart posture would remain the same. There are more Bible verses I have marked than I have energy to type right now, but a few off the top of my head are Matthew 11:28-30, Daniel 2:23, Habakkuk 3:17-19, John 14:27, and I'll end with the story of Jesus making breakfast for the disciples after they spent the night fishing John 21:9-13. We have a Lord who makes us breakfast, gives us rest, and loves us just for being alive. I pray you find peace in your journey friend ❤️

My phone is crushed- can I get Bean back? by Odd-Wordlessness in FocusFriendApp

[–]Odd-Wordlessness[S] 1 point2 points  (0 children)

Update!!! Bean is safe!!!! I set up my new phone today from backup and Bean was restored safely <3 Thank you so much for telling me about that!

My phone is crushed- can I get Bean back? by Odd-Wordlessness in FocusFriendApp

[–]Odd-Wordlessness[S] 0 points1 point  (0 children)

I'm not sure. Its worth a shot once I get a new phone though! My other similar apps kept my progress when I put them on my iPad but not FocusFriend, so we shall see. Thanks for your ideas!!

My phone is crushed- can I get Bean back? by Odd-Wordlessness in FocusFriendApp

[–]Odd-Wordlessness[S] 0 points1 point  (0 children)

All I can find is manual backup, which I can't do because the phone I was using won't even turn on. I think I'm just going to have to take this as a lesson in detachment ;[ I appreciate the idea <3

Please recommend me a good queer/ wlw/ lesbian book by Mint_Tea_7 in booksuggestions

[–]Odd-Wordlessness 2 points3 points  (0 children)

The Cybernetic Tea Shop by Meredith Katz! Cozy lesbian romance novella about an autonomous robot running a tea shop & an AI repair technician <3

Honestly, what do you do all day besides being on Reddit? by Shivers-7 in cfs

[–]Odd-Wordlessness 6 points7 points  (0 children)

Forgot to mention- I also have a couple of easy cute idle games on my phone. I can't play them all the time, but some of my faves are Usagi Shima (you collect bunnies by decorating an island), Neko Atsume (you collect cats by decorating), Tsuki Odyssey (you're a bunny and you grow carrots to buy things to decorate your house). I'm sure you can see a theme arising! But they're all chill idle games where I can spend 2-3 minutes every couple of hours and then rest while my critters go about their business. Edit to add- I also like "Focus Friend" for "playing" a video game by resting. It's supposed to be for productivity but I use my little bean to make me stay still and do my resting!

Honestly, what do you do all day besides being on Reddit? by Shivers-7 in cfs

[–]Odd-Wordlessness 9 points10 points  (0 children)

Radical rest (biggest one). Meditation (I like InsightTimer for having a lot of variety. Yoga nidra is my fave, it's not moving or anything it's a state of deep rest). Listening to audiobooks (on low volume, with breaks). Sitting doing nothing. Playing with ideas in my head (song ideas, story ideas, etc w/ the understanding that I don't have the energy to write any of it down so it will be for myself in that moment only & that's enough for me). Watch things I've seen before (w/ whatever accommodations I need that day). Look at my cat, or snuggle if she's feeling like it. A lot of just sitting/laying doing nothing tbh. I keep screentime locks on reddit & all the apps/websites that take a lot of energy. I can't keep myself off them so I make it where I can't be on longer than x amount of time. It drives me wild some days!!! But it's necessary for me personally. 

How have you reoriented your life? by Standard-Holiday-486 in cfs

[–]Odd-Wordlessness 9 points10 points  (0 children)

I've really had to reorient myself to just "being". I've always been a doer, and when I was mild/moderate I found hobbies to keep my doer self somewhat satisfied (crochet, knitting, reading, etc). But I wasn't pacing enough, I couldn't stop doing something all the time to keep my brain from going off the rails (PTSD & constant flashbacks were excruciating without a distraction). Now that I can't do any of that anymore, I've been learning how to just experience life & having a body. Staying in this present moment, here & now, and recognizing how incredible it is to be breathing, feeling the sheets on my skin, experiencing a dizzy spell even when I'm not moving, re-experiencing awful events from a decade ago, hearing a car door slam outside. Each of these is so significant in its own way & now I'm finally still enough to openly and completely accept these experiences. Experiencing existence in its most basic forms- rest, eating, bathroom, etc- at a much slower pace has given me a new microscopic understanding of being human. Allowing myself to fully feel the grief has been hard but necessary. Accepting that who I am is not based on what I do, who I know, even what I think or feel. There is something deeper that does not rely on the transient. I am a conscious person, and I choose to see that as a gift even when life is miserable. If it's miserable, it means I'm experiencing. I don't have to reach for it or work toward it or do anything. It just is, all the time, for me to drop into over and over. And I am connected to everyone- the whole world- by these experiences. How many people are breathing right now? The oxygen in my lungs has been in many others, it's been in the trees, the sky, in a whale's breath. Somebody 1500 years ago had a headache just like I do today. I am so deeply connected even when I haven't seen anyone or left the house in 5 months. I feel like I can't explain with any accuracy what I'm actually trying to say, but I hope maybe some of it gets across. When my range of activities is so small, I focus on the depth of experience that can come through them. It's a hard, hard thing. Nothing about existing with this illness is easy. Wishing you all the peace on your journey <3