I almost didn’t send out this newsletter as I’m truly feeling the October slide — this weather change is not something my body or brain likes.
I’m doing everything I can to stay comfortable and give my body everything it needs. Most of all it needs heat. I’ve turned on my infra-red radiator next to my bed and my parents give me my much-needed heated cherry pit bags (I get these all year round). I’ve also jumped into warmer clothing.
To get through the day I lie down (I’m always lying down) with my eyes closed and my noise-cancelling ear buds. I then put on a not-too-noisy series I have seen a gazillion times, turn down the volume and let my brain stay occupied, but not over-stimulated — keeping my eyes closed or wearing a mask. For some reason I can’t listen to audio books or podcasts and my brain goes haywire without something easy to occupy it with. This allows my body and brain to relax. It’s boring as, but my body loves it.
What comforts you and your body during flare-ups or bad days/periods?
They are my lil buddies. my parents take care of them I couldn't manage it on my own rn, so I am very lucky. we have similar schedules. every so often they curl up in my lap or near my chest and fall asleep. it's very comforting
(i can't figure out how to add pictures in comments otherwise I would. they are brown and black and very cute)
I have a galgo (a Spanish greyhound), they are described the cats of the dog world 😆 I say I’m converting into one as I need so much sleep and rest. It’s great to have a pal who does so with no guilt at all!
Hi! What perfect timing to post this discussion, as I'm currently in a really bad fibromyalgia flare that's left me feeling dizzy anytime I stand or sit up. In any case, Cuddling with my stuffed animals help; they're so comfy! I also listen to ASMR YouTube videos or podcasts to help me fall asleep even when I'm not flaring, but especially when I'm in a flare I listen to YouTube videos about how to get through flare ups. One that I like in particular talks a lot about being kind to yourself and giving yourself grace, which I always forget to do because I'm quick to blame myself for pushing myself too hard. Hopes this helps, and for those of you also going through massive flaws presently, we will get through this!
Old Hollywood films (especially film noirs and silent movies). I had the idea from a book whose main character always watched old Hollywood films, but somehow it comforts me and until now I have seen more than 50 movies!
Just lying in bed with my husband, watching a comfort show! I’m so grateful that I have someone that is such a comfort that will wake up with me during bad pain flare ups and stay awake with me holding my hand while it passes.
I am very grateful! My bad pain flare-ups are just so awful. I just can’t imagine how lonely and isolating it would feel to have to go through them alone. My heart really goes out to people who are alone in those moments
I love the sound of the infrared radiator you have and that you have parents to help support and look after you.
I’ve just recorded a video of the “love shower breath” I spontaneously created it during my toughest most bedridden times. It’s a practice I’ve gone to over and over again when I haven’t been able to move, speak, eat or drink. Where you breathe into your heart space/chest region on each inhale. On each exhale imagine a shower of love from head to toe, all over your body.
It kept me company during the most harrowing of times, I still do it now and think of this type of practice as creating little pockets of space to breathe, connect, heal, recover🤎💜
Been practicing it again a lot more recently. Realising I need to share these type of practices with others and not keep them to myself. The little and few all add up in the long term.
I'm the same about the change in season, the summer is so much better. I'm into my fluffy socks, fluffy top and soft trousers, I have a really soft duvet cover and soon when it gets colder I'll be getting my hot water bottle out. I listen to binaural/EMDR music when I can't process audiobooks.
I do a lot of embroidery on my symptomatic days. It’s slow and calming for me. If my more intricate sewing feels like too much I switch to some mending which doesn’t require the same sort of focus. On my worst days where sewing isn’t possible (thankfully those are few and far between lately), I watch TV shows. For some reason creepy horror shows and movies calm me down. Never slashers, which are excessively violent, but something with ghosts or vampires usually. Definitely not everyone’s comfort viewing but it works for me!
Interesting! I read something long ago about how horror and awe are very related so I wonder if that connection is why we like creepy things for comfort.
I watch Star Wars or ASMR videos on YouTube or snuggle up with my husband (he gives the BEST hugs!) who will do and say silly little things that always make me laugh 🤓💖
My teddy bear and showtunes. Played very very quietly while lying in a dark room. It can be so hard to find comfort on the bad days - but I take it wherever I can get it! My poor teddy has seen better days…
I have no many pillows and teddy bears to support my joints and try and keep me as comfortable as possible … I swear you can barely find me in my bed lol
I second the comment about cats. They naturally sleep up to 18 hours per day, so rather than judge my horizontal time, they think I’m more sensibly cat-like than other humans.
Old favourite audiobooks work for me until things are really bad. I turn the volume down as low as possible and also reduce the speed to 90 or 95%.
I listen to instrumental music, baroque seems to work for my brain as does Arvo Pärt (a lot of people would struggle with it but it usually soothes me).
Headspace app has some wind downs with rain sounds that help when I’m struggling to sleep.
Plain knitting or sewing can be very soothing, as long as I can manage to sit up.
I can’t watch much TV anymore. I miss a good binge watch.
I have commented above about my galgo (Spanish greyhound) who also sleeps 18-20 hours a day, she’s got not an ounce of guilt surrounding her resting needs. We sofa rest and nap together (but can’t have her in my room at night as she makes cute comfy noises with her mouth that wake me up). I say I’m converting into a galgo!!
Piling up duvet and fleece and woollen blanket. Listening to rain is very soothing - there's been a lot recently. Read good books that I've read several times.
Spending time alone with my cats and reading lots are my main go to when needing comfort, often wearing earplugs as all noise too much. A hot shower revives me, and my meditation practice soothes when able to do them.
I've been in my winter clothes all year this year, felt cold constantly, so my way of coping this winter is to escape to a warmer climate next month for a few months.
In the meantime, my electric fleece blanket has been a game changer for me. It means I can rest on the sofa instead of in bed with my electric blanket. So my bedroom is now for night-time sleep again, which feels like a really positive improvement.
I have a sensory rest break every hour for 10-15 minutes - lying down with eyes closed & sounds blocked - that is helping my fatigue and dizziness.
Daily guided meditations or yoga nidra are also helping me, although it can be hard to find them with voice only (any background noise, music, waves, etc on them make me crash with sensory overload).
Heat over here too. A long, long bath or if I don’t have the energy a heated blanket. I have a stuffed toy that I tend to clutch. I feel better huddled around my bear.
seeing my cats. My dearest Amy sometimes stays nearby when I am doing rlly bad, like she knows.
and makes me feel less wierd laying doing little bc they do that too :')
Ooh how lovely! I often wish I had a pet too.
They are my lil buddies. my parents take care of them I couldn't manage it on my own rn, so I am very lucky. we have similar schedules. every so often they curl up in my lap or near my chest and fall asleep. it's very comforting
(i can't figure out how to add pictures in comments otherwise I would. they are brown and black and very cute)
I have a galgo (a Spanish greyhound), they are described the cats of the dog world 😆 I say I’m converting into one as I need so much sleep and rest. It’s great to have a pal who does so with no guilt at all!
Hi! What perfect timing to post this discussion, as I'm currently in a really bad fibromyalgia flare that's left me feeling dizzy anytime I stand or sit up. In any case, Cuddling with my stuffed animals help; they're so comfy! I also listen to ASMR YouTube videos or podcasts to help me fall asleep even when I'm not flaring, but especially when I'm in a flare I listen to YouTube videos about how to get through flare ups. One that I like in particular talks a lot about being kind to yourself and giving yourself grace, which I always forget to do because I'm quick to blame myself for pushing myself too hard. Hopes this helps, and for those of you also going through massive flaws presently, we will get through this!
I watch ASMR during flares too!
Oh no so sorry to hear you’re in a flare. These are great suggestions!
Old Hollywood films (especially film noirs and silent movies). I had the idea from a book whose main character always watched old Hollywood films, but somehow it comforts me and until now I have seen more than 50 movies!
This sounds awesome! (Not the bad days, but that you found something that comforts)
Just lying in bed with my husband, watching a comfort show! I’m so grateful that I have someone that is such a comfort that will wake up with me during bad pain flare ups and stay awake with me holding my hand while it passes.
Aawe this is so precious!
He’s such wonderful support!!!
This makes me so incredibly happy to hear 🌸
I am very grateful! My bad pain flare-ups are just so awful. I just can’t imagine how lonely and isolating it would feel to have to go through them alone. My heart really goes out to people who are alone in those moments
I love the sound of the infrared radiator you have and that you have parents to help support and look after you.
I’ve just recorded a video of the “love shower breath” I spontaneously created it during my toughest most bedridden times. It’s a practice I’ve gone to over and over again when I haven’t been able to move, speak, eat or drink. Where you breathe into your heart space/chest region on each inhale. On each exhale imagine a shower of love from head to toe, all over your body.
It kept me company during the most harrowing of times, I still do it now and think of this type of practice as creating little pockets of space to breathe, connect, heal, recover🤎💜
That’s a wonderful meditation!!
Been practicing it again a lot more recently. Realising I need to share these type of practices with others and not keep them to myself. The little and few all add up in the long term.
Yes, share them!
That's a truly beautiful meditation Amber. Thank you for sharing it 😍
Oh I’m so glad someone got something from it🙏😍🩵
Relaxing music and smells. Favorite comfort foods. Holding hands or hugs from my favorite people. ❤️
Good ones!
I'm the same about the change in season, the summer is so much better. I'm into my fluffy socks, fluffy top and soft trousers, I have a really soft duvet cover and soon when it gets colder I'll be getting my hot water bottle out. I listen to binaural/EMDR music when I can't process audiobooks.
Yes, everything soft and fluffy and hot helps 🌸
I do a lot of embroidery on my symptomatic days. It’s slow and calming for me. If my more intricate sewing feels like too much I switch to some mending which doesn’t require the same sort of focus. On my worst days where sewing isn’t possible (thankfully those are few and far between lately), I watch TV shows. For some reason creepy horror shows and movies calm me down. Never slashers, which are excessively violent, but something with ghosts or vampires usually. Definitely not everyone’s comfort viewing but it works for me!
Yes! Creepy shows work for me too! It’s so far from my own world it’s a great escape.
It’s so fascinating to me that creepiness = comfort for some of us!
I love reading about historical disasters so ur not alone in it being comforting but still creepy lol!
Interesting! I read something long ago about how horror and awe are very related so I wonder if that connection is why we like creepy things for comfort.
Yes, I like horror at bad times too. Cartharsis maybe?
Maybe!
I watch Star Wars or ASMR videos on YouTube or snuggle up with my husband (he gives the BEST hugs!) who will do and say silly little things that always make me laugh 🤓💖
Oh yay! Husband bear hugs sound awesome!
My teddy bear and showtunes. Played very very quietly while lying in a dark room. It can be so hard to find comfort on the bad days - but I take it wherever I can get it! My poor teddy has seen better days…
Yes it’s so difficult to get comfortable in an uncomfortable body.
I have no many pillows and teddy bears to support my joints and try and keep me as comfortable as possible … I swear you can barely find me in my bed lol
I second the comment about cats. They naturally sleep up to 18 hours per day, so rather than judge my horizontal time, they think I’m more sensibly cat-like than other humans.
Old favourite audiobooks work for me until things are really bad. I turn the volume down as low as possible and also reduce the speed to 90 or 95%.
I listen to instrumental music, baroque seems to work for my brain as does Arvo Pärt (a lot of people would struggle with it but it usually soothes me).
Headspace app has some wind downs with rain sounds that help when I’m struggling to sleep.
Plain knitting or sewing can be very soothing, as long as I can manage to sit up.
I can’t watch much TV anymore. I miss a good binge watch.
Oh I love Arvo Pärt 💕🌸
According to spotify I’m one of the biggest listeners of Arvo Pärt in the southern hemisphere.
😀
I have commented above about my galgo (Spanish greyhound) who also sleeps 18-20 hours a day, she’s got not an ounce of guilt surrounding her resting needs. We sofa rest and nap together (but can’t have her in my room at night as she makes cute comfy noises with her mouth that wake me up). I say I’m converting into a galgo!!
😂❤️
Piling up duvet and fleece and woollen blanket. Listening to rain is very soothing - there's been a lot recently. Read good books that I've read several times.
Sounds soothing!
Spending time alone with my cats and reading lots are my main go to when needing comfort, often wearing earplugs as all noise too much. A hot shower revives me, and my meditation practice soothes when able to do them.
Sounds soothing!
I've been in my winter clothes all year this year, felt cold constantly, so my way of coping this winter is to escape to a warmer climate next month for a few months.
In the meantime, my electric fleece blanket has been a game changer for me. It means I can rest on the sofa instead of in bed with my electric blanket. So my bedroom is now for night-time sleep again, which feels like a really positive improvement.
I have a sensory rest break every hour for 10-15 minutes - lying down with eyes closed & sounds blocked - that is helping my fatigue and dizziness.
Daily guided meditations or yoga nidra are also helping me, although it can be hard to find them with voice only (any background noise, music, waves, etc on them make me crash with sensory overload).
Thank you for sharing! And what a positive improvement to have your bed be for mostly sleep-only. I wish you a lovely escape to a warmer climate 🌸
Heat over here too. A long, long bath or if I don’t have the energy a heated blanket. I have a stuffed toy that I tend to clutch. I feel better huddled around my bear.
Sounds comforting 🌸