#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…

[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????

[violentdelightshavevioletends]

“Dain is just an imperfect 21-year-old kid who trusted his dad, and is a little over-protective telling his chronically ill friend to sit the fuck down.”

[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

[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.

[tridentkickflipper123]

something something whatever

[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?

[jackabbot]

BRILLIANT MINDS • S1E10 || The First Responder ||

[moemoemoss]

sometimes chronic fatigue and pain and illness and whatever (bear with me its been a long day) is lying in bed at the end of the day and feeling like absolute crud and Knowing tomorrow you will probably wake up Worse and thinking Today Was Still Worth It.

I rarely ever not at least a little bit regret overdoing it, but sometimes you just have so much fun that even if your spoons are in the negative, ya just kinda go "eh worth it #yolo"

[ninja-knox-ur-sox-off]

Happy out of touch Thursday, i finally got the batteries for my keyboard and y’all get to face the consequences

Consider: Sonic is notoriously bad at comforting people. (<- says the person who’s barely interacted with sonic media HEAR ME OUT.) If you need a distraction, if you need someone to get your mind off things or get you moving again, he’s your hedgehog. If you need someone to smile down at you and tell you to get up when you feel like you can’t with such confidence that you remember who you are and can rise to the occasion, he’s got you. But if you need a shoulder to cry on, if you need advice , if you’re looking for a kind comforting word you’re playing Russian roulette with this dude as to whether you’ll get any comfort at all. An awkward pat, standing there staring at you, same smile as ever or maybe looking like he has no idea what to do with you and that same distraction techniques he normally employs land about as well as ill-timed right hook to the jaw. Imagine you feel inadequate and just want a good cry and maybe a hug and this dude grins at you like you’re funny and suggests a run. He’d die for his friends but he has no idea how to do that hug comfort thing because he’s Sonic the Hedgehog. When has he ever paused to process a hurt? When has he ever paused to process pain in his body or in his heart? He is the epitome of “If i stop running then my thoughts would catch up with me.” The only way he’s survived everything he has without crumbling to pieces mentally and physically is because he doesn’t dwell on it, he doesn’t process it, he keeps moving and he’ll never stop. “Wdym you don’t wanna bottle up your feelings? Lol that’s what I do and it’s works for me—“ His friends might want to address things his friend might see something truly horrifying happen and beg him to talk about it and he’ll laugh and wave away their concern because he’s Sonic the Hedgehog nothing can stop him. An object in motion stays in motion. There’s nothing wrong, nothings ever hurt him, he’s still in one piece, the sky is still beautiful, the world is still fresh and his friends are still alive and happy so what’s there to address? Sonic doesn’t talk about things, he drops by to spar. Sonic doesn’t ask about your feelings or his he just drops a blanket over your shoulders when you fall asleep at your work table and maybe brings you to bed if he has the mind to. Sonic the Hedgehog doesn’t slow down, even when he’s brought to one knee, he won’t slow down until he stops breathing. And it works. It’s what’s kept him alive this long. And inevitably it will be the thing that destroys him.

[lilhawkens]

my body really went like,,

ONE (1) health issue??

nooooo, why not add another, it might get lonely!!

[yuukirita]

You have turned me into a Chronic Pain Bumblebee advocate

…. You got any advice on writing chronic pain?

EHHEHEHEHEHEH- I spread the headcannon to the four winds... and many shall be infected.

MMMMM... Pull from personal experience if you can. Doesn't have to be from chronic pain- just like... something that hurt that you had to deal with for a few days. And you turn that into something someone has to deal with all the time. And the amount they have to deal with it varies by the day according to what they do-

I'm not an expert on chronic pain just because I have some. But I know how it is for me, so I wrote that into Bee a little. Know what you write, if you don't know, you can ask around about different kinds of chronic pain and find one that fits your story/character.

For Bee it was easy: he's metal, he worked near a furnace, so his joints melted and that sucks. And then it was just about putting that little blorbo in situations.

When I write anything anytime, I just... respect the characters and what they go trough. Which is why I think a lot of people like the fluff I write.

One hurdle that maybe you might encounter is like... turning it into a superpower? It's something I did in the fic, on purpose, cuz Bee is a badass sneaky scout in canon and him having messed up joints isn't going to change that- So I turned it into a reason *why* he was so competent at moving around. Cuz he's basicaly been playing on hard mode most of his life until Ratchet helped him out- the difficulty lowered. But he's using his hardcore skills. Cuz why wouldn't he?

But yeah- most people with chronic pain don't do that... And that's fine. Whichever route you take, that's valid. Just be aware of that so you don't do it by accident.

I don't have any like... big no-no s about writing chronic pain. Just be respectful and try to pull from personal experience! Pretty much it! :D HOPE THIS IS SATISFACTORY

[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.