#chronic pain and mindfulness

[compassionmattersmost]

From Suffering to Compassion: Transforming Life with ME/CFS

Living with chronic fatigue syndrome (ME/CFS) often feels like carrying an invisible weight that never goes away. The exhaustion is far beyond ordinary tiredness, permeating not just the body but the mind and heart as well. For many of us, this illness can feel like a curse, a complete derailment of life’s trajectory. Yet, over the years, I’ve come to see it also as a strange and unexpected…

[druid-for-hire]

[images ID: three images of a comic titled "one must imagine sisyphus happy" by druid-for-hire. it is a visual narrative beginning with someone with wrist pain (depicted by bright orange nerves) working at a drafting table. the reader is shown the same wrist as the person uses it for many everyday tasks such as carrying a grocery basket, pushing elevator buttons, typing, and doing dishes, until the pain dissolves all the panels into chaos. the person then performs several physical therapy exercises until the pain subsides. they sit back down at a desk with their laptop, sigh, and begin typing. a small spark of pain reappears. end id]

a fun little piece i made during the semester and submitted into our school comic anthology! (which you can buy at the Static Fish table at MoCCAFest in NYC ;] ). it's about artists and injury

[chronicpaingirlie]

every day living with my disabilities is just an endless refrain of “the world does not treat me gently so i must treat myself gently, even when it’s hard” and i must never ever forget that

[oddaudreyleereally]

Every now and again I get reminded that the normal amount of daily pain is zero, and that still blows my mind every time... You have days without pain????

[thebibliosphere]

The sheer number of neurological disorders I’ve acquired over the years is truly just like, the spiders George of neurological fuckery.

1. Chronic “normal” migraines (15-20 days a month)

2. Hemiplegic migraines (rarely. But terrifying when they happen.)

3. Cluster headaches (come and go in flares)

4. Trigmeral nueralgia

And the latest son of a bitch to the line up:

5. Occipital neuralgia

And that’s just the shit that affects my head. It doesn’t even account for everything the fuck else that is wrong with me and the stuff we just found out about my spine. Like Jesus Wept.

Like I dunno how we’re going to mindfulness our way out of this one girlypop but I’ll try.

[chronicallycouchbound]

PSA: Please don’t ask participants to do grounding/mindful/somatic/etc practices at your events

Grounding exercises should not be an activity in large group settings, especially unsolicited and without warning, especially if you’re not aware of every single person in the space’s mental health conditions, physical health conditions, and personal relationship to their body.

Practices such as mindfulness, grounding, somatic exercises, breathing techniques, body scans, etc. are very helpful therapeutic tools to help manage stress. They can (and do!) help plenty of people– when taught safely and used effectively!

HOWEVER for people with conditions that cause psychosis and/or dissociative conditions such as depersonalization/derealization, these techniques are contraindicated and can make their symptoms significantly worse. They should only be used with guidance from their mental health team and adapted to their needs. For people with conditions like anxiety and PTSD, being aware of breathing can trigger a trauma response or anxiety attacks.

And for people with conditions that cause chronic pain or other uncomfortable bodily sensations, becoming re-centered with their bodies can cause more awareness of the pain they are in, which a level of (ideally functional) dissociation is actually helpful. For people in wheelchairs and powerchairs, touching the ground beneath their feet isn’t always an option. For people with cardiac and pulmonary conditions, deep breathing can be impossible or can trigger asthma attacks. For disabled people in general, doing body scans can be impossible due to paralysis or limb differences. They can bring awareness to things the person wasn’t aware were wrong to begin with (which is helpful in certain spaces, but not a great ice breaker at a retreat!)

And for trans people, binders and other garments can restrict breathing, and taking repeated deep breaths while binding can cause rib damage (which is why you shouldn't bind at night, while coughing from sickness, while exercising, etc). Becoming centered in a body that makes you dysphoric can be deeply distressing, again, a level of functional dissociation helps.

This also goes for plenty of other people in marginalized bodies, such as people of color, people who use substances, queer people, and more. Becoming grounded in your own marginalized body can be a heavy weight to carry, and needs appropriate and individualized care to be a beneficial experience.

As an alternative, I suggest doing a round of gratitudes instead, it allows for people to choose their level of vulnerability in spaces, while not being generally contraindicated for many people. Doing fun (and appropriate to the setting) icebreakers are great. Ask what brings someone to the space. Check-ins about basic needs such as if people need to use the restroom, eat, drink water, are rested, etc. can be more appropriate body check-ins for folks to do.

I don’t recommend doing these exercises even with a warning beforehand. If I'm in the room while someone is leading a breathing exercise, even if I try to ignore it, I (and most people) would automatically become aware of my breathing. The same goes for any other techniques. These techniques can cause real, life-threatening levels of harm for some people, and can even just be deeply uncomfortable or distressing for others. Dissociation is not inherently evil or bad or harmful. It is the way the body and mind naturally respond to adverse experiences (note: it can also cause distress and at higher levels, can be disordered) it is best to allow people to exist as they are in communal spaces. Let people show up as they are.

Most spaces are not equipped or appropriate to respond to emergencies, difficult feelings, and all the varied responses that can come from folks doing mindfulness in group settings.

I personally do some things before large gatherings and events to feel centered on the activity I’ll be doing, and afterward, I decompress. Encourage participants to lean on their natural supports and offer suggestions for it! Be creative in your caring!

This also doesn’t mean to discourage these practices! If you see someone doing deep breathing, check in with them, offer a space for them to decompress, care for them! Worksheets or posters on techniques like square breathing and 5 senses check-ins are great for a quiet room or spaces where participants can decide if they want/are able to engage with those tools. It should be a fully consensual opt-in, rather than being forced to opt-out. Having to leave a room when a group leader says “We’re going to start a mindful breathing meditation, please feel free to leave if you have psychosis, chronic pain, or are trans” is obviously othering and outs people.

Sincerely, someone who has psychotic symptoms, dissociation, chronic pain, is trans and whose body is marginalized in many ways and is really tired from trying to explain this at every event I go to

[valeria-sage]

How can chronic pain patients be “addicted to pain meds?” That’s like telling someone with a prosthetic that they’re addicted to their prosthetic. Or a cardio patient that they’re addicted to their pacemaker. Or a diabetic that they’re addicted to insulin. What is the thought process here?

[uhbasicallyjustmilex]

so i was rewatching the coachella standing next to me performance this afternoon and it made me wonder when/if alex knew what he was going to do. like was it something he 'd planned or thought about in some way before the show? did he already know what he was going to do when he was introducing miles and hyping him up right at the start of the song? was his heart thumping in anticipation as they got closer and closer to the final verse? or was it totally heat of the moment, everything spilling over and taking both of them by surprise?

some gifs of the performance for contemplation:

1) alex’s expression just before they start playing the song. is this just i’m-standing-on-a-very-big-stage-and-i’m-actually-just-a-tiny-introvert nerves or i’m-planning-to-snog-my-very-sexy-co-frontman-in-a-few-moments nerves???

2) the moment just before he goes in for the kill

3) The Kiss™️

3) alex covering his mouth with his hand afterwards (shock? the giggles? both?)

and then these two which are probably less about whether or not alex planned it, but they're very cute and telling so i had to include them:

4) miles taking alex's hand as they go offstage afterwards

5) their FACES when they go offstage (miles is literally doing that classic body language thing from romantic movies where someone touches their mouth to show they're thinking about a kiss 😭)

[purpleleafsyt]

Chronic chest and head aches sure do suck, don't they?

[yarns-and-d20s]

I really struggle to understand why people are SO salty over Gale requiring three (3) items. It's slightly more "oh no" in a Gale origin playthrough given that the item that Tara gives you is an entire ring of evasion and if you've long rested before doing much, you may not have any alternatives.

But if and when those conditions are not the case... what the hell kind of dancing lights emergencies are you having in this game that you feel the need to hoard KOMIRA'S LOCKET? Are you that hard-pressed and desperate for gold every second of act 1 that you must sell every magic item that you don't have use for with your party make up? Because lots of those items really are of no use if you don't have certain classes in your party.

As for money--how am I the only player in all the land who waltzes into Rivington for the first time with more gold than I can ever possibly spend in the game even if I buy a goddamn statue?

But as for Hotfix 17 and changing Gale's reaction to not being given items... well, it's not like the man won't BLOW UP A HUGE CHUNK OF THE SWORD COAST or anything. It's not like he's ACTIVELY DYING. It's not like HE'S IN PAIN WHEN THE ORB DOES ITS ORB SHIT.

Like, y'all are salty that you have to give this dude stuff to keep him alive and salty that he doesn't like being in pain.

People aren't necessarily sunshine, lollipops, and rainbows when they're in severe pain.

Ask me how I know.

Gale getting cranky and potentially fucking off make loads of sense. Like, we don't want "plot holes" in our fiction, we want things to be "realistic"... getting angry about being in pain and being refused help is extremely realistic. Not wanting to die and take countless people with you is realistic.

[echo-stimmingrose]

Love the idea of Nico having chronic back pain and him blaming it on the fact that he's technically 80 years old. When in reality he just has horrible fucking posture.

[weirdocat83]

Love the idea of the junior quartet eventually finding out what Wei wuxian actually looked like. Like, there aren’t enough fics of this. Have one of them find a portrait of him in lotus pier or the burial mounds! Have him make offhanded comments about what he used to look like that don’t sate their curiosity but only serves to make them more curious. Have the juniors listen in on personal talks between LWJ and Wwx because there’s no way that they’d never talk about it. It wouldn’t be often but just every now and then wwx comments on something he finds different or LWJ will help wwx adjust.

Somewhat related thought: do you think wwx had chronic pain or some really weird things going on in his original body that he just got used to? Because it is mentioned that he was whipped every so often for punishment and I’m curious whether that ever affected him. Same with LWJ for the discipline whip. Whenever anyone writes Yllz!WWX I always end up thinking about that because realistically, his body must be covered in scars. So he’s probably have chronic pain? But nobody really brings it up??? Same with LWJ??? Idk I was in the mha fandom for a long time before falling down the rabbit holes of manhwa and danmei and with the bone breaking in that show chronic pain is a common addition to fanfics so I just wonder why it isn’t added in many fanfics when the brutalization of characters in MDZS would logistically be worse likely leading to chronic pain.

[unmaskingdisability]

So you want to die (but shouldn't do that)

A list of ways I force myself to keep going even when my entire body is on fire & my brain feels like it's going through a cheese grater

MAKE A PLAN WITH SOMEONE YOU ACTUALLY LIKE - Not a friend you have to gear yourself up to hang out with. A good friend, that will cost low spoons, and plan to do something you enjoy. Nothing extravagant that requires a lot of energy, and it doesn't even have to be in the imminent future. Make a dinner plan for next week and think about that lilac lemonade you've been wanting to make for them. Make a plan to hang out later this month and watch anime with your friend that's good at bullshitting and making you laugh. You won't want to do this when you can't imagine leaving your bed. Do it anyways.

DRAG YOUR EXHAUSTED ASS OUTSIDE - Dress in as many layers as you need or just wrapped in a blanket. Wear sunglasses and headphones if you need. Don't force yourself to do anything, except being outside for at least a few minutes. Sometimes it's cold and wet and all I can handle is walking out for a minute. Sometimes it's warmer and pleasant and now I'm exhausted slumped in the sun or under a pine tree instead of in a dark dirty (mine is anyways bc of the wanting to die and pain) room

VENT - Look I'm the master hypocrite. I run a disability group and I still haven't told pretty much anyone in my life I had to quit my job after my body broke down too far too fast. I advocate emotional vulnerability all day and will legitimately enact it constantly, about everything except how fucking miserable and hopeless and depressed and in pain and scared I am. You don't want to tell anyone because you're convinced they already hate you or are about to leave. I'm not gonna say you need to get over that tonight. But you gotta get it out of your head and your muscles and your body. You've gotta write or draw or splash paint (I will literally fingerpaint just colors sometimes) or hack up invasive plants or make poetry or cry to the person you do feel comfortable talking to. You've gotta get it out You've gotta get it out and also! If being honest about your life and difficulties does push people away fuck them!! Community is everything and that's something they never were, so it's space for something real

GO SOMEWHERE NEW AND BEAUTIFUL - This is one of the hardest things to do when depressed, but if helps so much when you can get yourself somewhere new & exciting and show your brain good things are still happening. For me, this looks like going to a new park, or science/art museum, or to see some pretty lights strung up for the holidays. Nowhere so crowded or busy it'll be too overwhelming, you just need to show your brain everything isn't awful static and get some dopamine pumping.

I'll keep adding to this because I'm full of too much spite and exhaustion and reluctant extreme caring so much to leave you all alone in this shithole

[rosquinn]

my experience living with undiagnosed chronic pain since i was a kid was just assuming everyone goes through disabling pain every day and they lived their lives comfortably because they were more capable than me, and it's still crazy to me that not everyone goes through All That, that it's just extremely easy for some people. once i was doing a running test and briefly complained about my headaches, then my friend went Oh thats not good you should probably get meds for it and i was like ???? you dont??? get terrible headaches when you exercise???? you can do that????

tldr undiagnosed chronic migraines fucked up my primary school PE grades and my 10 year old self thought it was just me being lazy as fuck

[retrogradedreaming]

okay, inspired by @dragon-spaghetti's chronic pain Husk headcanons, I present Angel with atypical migraines

Angel getting knocked off balance after a few grueling weeks at the studio (because stress makes them worse), but like with the kind of vertigo that makes you feel like you're floating and untethered, but not spinning

Husk notices when something's off because Angel will stand up from the bar and pause with a hand outstretched before he starts walking, like he needs to recalibrate real quick

he lays on top of Husk with his face in Husk's chest because it's dark and then he'll forbid Husk from moving because that makes it worse, so Husk just kinda rests a hand on his back while they cuddle

[trick-of-the-troubles]

this world that has promised so much has delivered so little

because the people who made this world did not make it with us in mind

and the people who had the power to change the flawed system have instead chosen again and again to do what's easy rather than what's right

and it's hard living in a world that didn't think of you in the first place

and you deserve better than to be an afterthought

and i love you

and i'm sorry