#yesterday was a bad day for chronic pain so this is my comfort post! | Explore Tumblr Posts and Blogs

damiansgoodgirll · 5 months

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Hi love 💕 can you please write reader x damian where she has like a chronic illness \ pain and she has some of those days where all she wants is to be taken care of? thank you 💗💗💗

wrote this with high fever so probably not the best :(

damian priest x reader

one of those days

being in that car accident when you were seven really fucked up your life. you were lucky to even be still alive, only getting out of it with bad injuries but nothing worse. expect your dream of being a wrestler fading away.

you grew up watching wrestling with your family. your dad was a fan. your mom was a fan too and you grew being a fan too. you remember asking wrestlemania tickets every year for christmas, nothing more.

but you knew that after being stuck in bed for over a year did nothing but more damage to your body.

it was a really bad accident, leaving you with the worst back pain you’ve ever felt. you thought it was going to go away but it never did. growing up the pain became stronger to the point you had to stay weeks away from school because you couldn’t even move. your dream of being a wrestler completely faded away but your lucky star made your wish come true anyway.

you were a sport journalist and even if you worked for hockey, baseball, football and basketball somehow you ended up hosting a wwe post game show. and that was everything you ever dreamed of.

you had the chance to meet amazing people, new friends and even the love of your life.

at first it was scary having to host interviews with the judgment day but in the end you found out they were the most caring and loving people you’ve ever met. you and rhea bonded immediately. she was the first to know about your pain and about the accident that happened and she made you promise to always call her in case you needed anything. same thing happened with finn and dom. with damian things were a little different. he fell in love with you the moment he saw you and he wanted everyone to know that he was in love. he started from giving you coffee in the morning to offering you lunches and dinners. he loved picking you up in the morning and taking you back home at night. he just loved being in your presence.

and you ended up falling for him too.

he always took care of you in a way no one ever did. not only about the physical pain. he knew you. he knew how to listen to you. he knew how to read you and that was all that mattered to you.

it was one of those morning where you were lucky you didn’t have to leave the house for work that day because you just spent the worst sleepless night ever.

your back was hurting once again and you couldn’t even move your legs to go to the bathroom.

“is everything okay princesa?” damian asked when he saw you trying to move your position in bed.

“just one of those days…”

“here let me help you” he smiled at you, moving his arms under your back, making sure to not hit the spot that hurts you. he helped you sitting more comfortably in bed, positioning some pillows under your back and under your head.

“thank you” you smiled at him.

“it’s my pleasure, do you need anything else? water? something to eat?” he asked softly, making sure he wasn’t overwhelming you.

“i’m okay, thanks” you whispered “can you just hug me?” you shyly asked him.

his heart melted at the sound of your soft and sweet voice “of course love” he said, helping you moving towards his body so now you were laying on his chest while his hands went to your back, gently massaging it.

“does it hurt?” he asked.

“today more than yesterday…it’s normal tho…i just have bad days too”

“i know…i just wish you didn’t have those days…whatever you need i’m here, food, water, a hot bath, just say it and i’ll make everything possible” he smiled at you.

“can we just stay like this forever?”

“as you wish my queen” he laughed making you laugh too.

“i just love you so much damian…thank you for always being here for me”

“te amo mi amor…so much” he whispered when he saw you relaxing against his chest and closing your eyes once again.

he never thought he would find love but you came and proved him wrong.

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vtforpedro · 4 months

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long life update - TWs in tags

It feels like it's been ages. I'm so exhausted and in a lot of physical pain. Going on two months of it being the worst it's been right after a couple of months of the best it's been. Chronic pain + grief + trying to get help from doctors who should have their licenses revoked + dealing with a shit relationship with my mom + a good, decades-long friendship ending + the ongoing disability process with the SSA + LAW FIRMS.

I'm so fucking tired. I don't remember if I updated that the appeals council decided not to review my case because the 'judge followed the law' except that he didn't. So, as it turns out, my original attorney (and he did not tell me this) before he left, wrote that if they denied me, it should go to federal district court.

I'm now working with a NY law firm to take my case to federal court because my current law firm believes it has merit, and I guess they do, too. That's how fucked the decision was, and I'm glad my initial reaction of bewilderment and anger was spot on lol

The good news is, it should only take another year! ._.

My neurologist is the worst doctor I have ever come across and I'm quite literally stuck with him with nowhere else to go. I wish him upon no one. I'm so tired of calling the SSA, getting documents to them, signing things for law firms, contacting law firms, getting no responses, and contacting them all over and over again. I am in incredible physical pain, like this actively makes my neuro stuff worse. Everything makes it worse. I have autonomic testing in a few days, and idk if I'll get through it b/c I have to stop the meds that keep me out of the ER two days prior, and it scares me.

My relationship with my mom is fractured and I don't feel like family therapy is actually helping. I had to end a friendship with someone I love and care very much about but who was growing too comfortable mistreating me and I was giving them too many passes 😞 I've known them for the better part of two decades.

It's been over seven months since my cat Isis died. I don't know how. It feels like she was here just yesterday. Yet, all the nights I've sat and talked to her and wept are all too real. I miss her more than I can say. She was my soul cat. I keep thinking about tomorrow and how she'd be so nosy getting into EVERYthing when gifts are opened at Christmas. Having to stop her, move her, laugh because she was just so n o s y and it was hilarious. And she's not gonna be here for that ever again.

I'm having a really fucking hard time tonight. It's just hitting me how god-awful this year has been and how I have a bad week to look forward to before even getting to the new year lmao I have to stop taking so many of my medications 48hrs before 1.5-2hrs of testing to see if we can find out Yet Another Thing Wrong With Me but knowing my luck it'll be 'no findings' and the mystery of why my core body temp plummets to 93.9 in the blink of an eye won't be solved until I have suffered juuuuust enough.

It never ends. Never. I want to give up. I'm so tired of doing this. I don't want to anymore. It never. fucking. ends.

I absolutely cannot say it's all been bad, though. I've met incredible, warm, welcoming, giving, kind people this year. Y'all have helped me more than you know and I'm so so so lucky to be able to call you my friends. This year has sucked for so many of us, but I want to say I'm proud of you, and I love you all very much.

My fic is gonna be printed in a hardcover zine early next year. I participated in a Big Bang for the first time and that'll also go out early next year. I'm hosting a tiny event in my tiny fandom server that I'm super excited about. I have a raffle prize to write (bagginshield !!!! SO EXCITED to revisit the og otp) and a Valentine's gift to write for another fandom.

I posted 401,000 words this year and wrote many more unfinished wips, plus a long one (90k) that I am very invested in finishing.

I painted and drew so much this year. I improved a lot, too! I got a couple of portraits printed from inprnt to see how they looked, and it was MY art, and they were GORGEOUS. I thought I would hate seeing my art professionally printed, but no! I almost cried. They looked so lovely.

My cat Lilly had health issues almost immediately following Isis's passing, but she is doing so well right now. She's blossomed into another cat, and while she's not my constant companion, she is with me so much more than she used to be. When she walks onto my desk I am to stop everything and hold her like baby in my arms until she decides that's enough (or I really need to move) lmaaao she's such a goober. My heart cat. <3

I'm not doing well right now--my MH is bad. Especially tonight. But it felt good to write the good things.

I'm sorry for my lack of replies and kinda disappearing. I'm running on fumes. I hope next year will bring physical relief so emotional relief can happen.

For those of you facing difficulties of any kind, I am holding your hand in spirit.

#vtforpedro personal #vtforpedro medical #tw mental illness #tw medical #tw depressing stuff #tw pet loss #I always wish I have something better to write #gonna try to do everything in my power to make that happen next year

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fluorescentbrains · 2 years

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📌 Pinned Post In Which I Ask You For Money 📌

TL;DR i need a Device Of Stop Having Headaches that costs Two Thousand God Damn Dollars and i am accepting donations via tips on tumblr and through ko-fi. mutuals can also dm for my venmo if preferred (it’s my full legal name so I’m not posting it here). this is not an emergency; please only give me money if you have enough disposable income to comfortably do so. if you find my blog entertaining and you feel like throwing me a couple dollars, this is all just to say that now would be a good time to do so. this post is ok to reblog if you feel so inclined, but don’t feel bad just scrolling past either.

more detailed explanation of my mouth problems and upcoming medical expenses under the cut:

Dear Beloved Followers And Cherished Mutuals,

as some of you may be aware i have had TMJ for a long time. what you probably don’t know is that it has been getting worse. i’m now having daily headaches, i can’t chew for long without my jaw aching, and the pressure in my ears is causing dizzy spells. also at some point i developed sleep apnea. the muscles in my face are severely inflamed from constantly working to maneuver my jaw in its weird bad position. it is basically impossible for me to completely relax my jaw muscles, as I discovered at the dentist yesterday. this is causing the joint to deteriorate over time, so the situation is only going to get worse.

i have seen several doctors about this and all of them have recommended major surgery to essentially break my jaw and put it back to together so that it actually fits on my skull. but this is just not feasible under my current circumstances so I’m turning to stopgap measures. firstly the dentist will make me a $2000 custom bite guard which absolutely no insurance in the country will cover (they’ve tried). it needs to be custom because my jaw is just that screwy. this will not fix the problem but it will help with my chronic pain by allowing the muscles in my face to relax.

the second thing that can be done is a tongue tie release surgery (frenectomy). my tongue is apparently what has been holding my jaw in a weird position my whole life and preventing traditional orthodontic treatment from completely fixing the problem. this is a very minor surgery, but i have no idea if my insurance will cover it, let alone the myofunctional therapy required before they even do the procedure. none of this will fix my jaw but it will hopefully help with the chronic pain because without my tongue pulling my jaw in the wrong direction, other muscles in my head can relax.

and of course there are going to be a bunch of appointments in between, adjustments to the bite guard which cost $320 each, travel expenses to the city where my specialist is etc etc etc. right now the office is sending a bill for over $500 to my insurance just for the consultation and exam and I don’t know how much of it will ultimately be covered. ideally i will one day have the means to get jaw surgery, which in many cases is not covered by insurance and can cost tens of thousands of dollars, plus whatever money is lost taking time off work to sit at home with my jaw wired shut.

i’m very fortunate to have been able to save up a lot of money while living at my parents’ house during the pandemic, so i can pay for the bite guard right now out of pocket. but my salary as a grad student is very low and i still have loans to pay off. i really don’t want to get into a situation where all my savings are spent and i have no money left for emergencies because i’ve seen where that road leads. ergo i have decided to Ask For Money Online.

as i said, i do have the money to pay for the bite guard right now, so please please please do not donate if you are at all financially insecure. this is not an emergency, it’s a really big expense that is probably going to be followed by more really big expenses. so, if you find my blog entertaining and you feel like throwing me a couple dollars, this is all just to say that now would be a good time to do so. i’m also happy to do stuff like help with your math/physics homework and beta your writing in return (honestly i would probably do it for free lol). just let me know.

if you read all of this thank you for your interest in my mouth problems.

-brains

#donations

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chronicillschronicpills · 3 years

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Hello! I saw an old post of yours abt sex and chronic pain and I guess I wanted to see if you or anyone else would have any advice for me!

I'm unfortunately having a bad flare day- and I think a large amount of it is because my partner and I did stuff yesterday. My partner is very sweet and kind about my condition, and always asks me during if the things we're doing are okay. The thing is, I always want to try even if it hurts because I love doing it and I miss being able to do it without such awful pain.

I can't find a position that doesn't make me hurt a lot afterward. Him on top of me makes my legs and hips hurt (legs in air), me on top of him makes my hips and knees hurt, from behind makes my hips and knees hurt, and forget any of my weight being on my hands. My disability has taken over every aspect of my life and I'm so frustrated. I just want to enjoy myself for once.

If you or anyone else has some advice on positions or pain relief I would really appreciate it!!! Thank you so much 💜💜💜

SEX AND CHRONIC ILLNESS;

Hi, there love,

I swear I have a defective Tumblr and I never get any noti's from my inbox, so I'm sorry if you sent this months ago!

I'm gonna try to give my best advice and hope that my followers will also help with advice.

First of all, pretty much any physical activity can throw me into a flare so I can understand that sex can definitely have a real impact on flares. You are most definitely not alone. I can also empathise with the frustration of your disability taking a lot from you and your life. I am so happy you're partner is supportive too and I hope that you guys are great at communicating with each other about sex which is probably the MOST important thing in this. I am going to give my advice under the assumption that you guys have great, healthy communication.

Sex positions that could be worth a try, it seems as if any stretching of the hips and pressure on the knees and hands are out of the questions so here are not only some of my all-time favourites, but also should be friendly for these issues:

Lazy doggy (lying face down on your stomach with your legs together): that way you don't need any weight bearing on knees or hands, no stretching of the hips and you basically just lay face down, I like this position as it also takes little energy and it's quite easy for you or your partner to stimulate your clitoris at the same time. you can also try this position with a pillow or wedge under your hips for a different angle and extra support on your hips

Spooning sex: I find this a great position, you just lay on your side, your good side that day, and sometimes putting a pillow between your knees can help with that.

I personally don't fuck with this position but standing up sex facing a wall is also considered to be pretty easy on these joints.

This one is slightly harder to explain (its a modified missionary variant) but if you are laying on your back and you put your legs straight or bent vertically and lay them on your partner's chest (kind of like an L position with the legs up), and then he would be either standing or on his knees (so your partner would be the P and u the L; PL). This means your hips aren't stretched outward, your knees and hands don't have pressure on them, your partner does not have their body weight on you and your partner can hold onto your legs for extra support. You can add a pillow under your hips for extra support. I really hope this makes sense, and if someone knows if this has an actual name, please help!

You could also try a seated position and you could face away from him to keep the hip angle easier

other general tips;

Take MAD advantage of pillows and wedges; this could help with him on top of you if you bulk up on either side of your hips so you don't have to strain or stretch as much.

Rethink your idea of sex: some days there may be no position that is comfortable. Sex is whatever feels good for you. You don't need penetration to have sex. Have your partner go down on you or stimulate you with their hands. If you really like the penetrative feeling, buy some toys and your partner can use them on you in any position that's comfy for you. Buy lots of sex toys, to be honest, that can be super fun and accessible. You can get full pleasure and give full pleasure without vagina/penis penetration.

Something my therapist has taught me is to pace myself and practice patience with MYSELF! I can tell you probably push yourself because you always want to still try even if it hurts. For example, I don't exercise, but one day I decided to go to the trampoline park and do gymnastics (i used to do gymnastics) and then was fucked for a week. Another example, I tried to do gymnastics at home and broke my foot. Just keep throwing myself into the deep end and end up making it worse; 1 step forward, 12 steps back. So pace yourself, and practice patience, and don't be too hard on yourself. Treat yourself with kindness.

I know sex is often spontaneous, but honestly stretching and warming up could help, and maybe even during foreplay, you could get a massage to warm up and connect with your partner. Also if you know you're going to have sex, you could take some painkillers or weed (if you're into it) beforehand.

I really really really hope that a) everything made sense and b) that it would actually help! Please send me a message if you feel comfortable if this helped at all.

Please leave your most accessible sex positions in the comments or reblog with advice!

#chronic pain #chronic illness #sex and disability #chronic fatigue #lupus #sle

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benlaksana · 3 years

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2021

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It's been roughly a year and a half since the start of the Covid-19 pandemic here in Indonesia, and I've recently been trying to understand where I'm at. Not physically, as in physical space, but mentally and probably existentially. What is the state of my mind? I am aware that I've become somewhat bitter, my late nights are sometimes riddled with anxiety for what the next day may bring and reoccurring personal-collective grief has at times, and recently more often than I would like to admit, numbed me.

This may probably be my mind's automatic coping mechanism seeing all this death mainly as a result of how my government has failed us, its citizens, especially during a time of crises. And I really need to stress this point: how my government has failed us Indonesians during the times we need it the most and I very much believe that it is because of this why many of us Indonesians are in constant misery and haunted by that feeling of despair. If chronic physical pain causes constant daily anguish, I am not surprised if chronic physical and mental pain caused by structural violence causes persistent misery as well.

I'm somewhat fortunate in this regard, I'm grateful that I've learned ways to keep my sanity in check. My contemplative practice is key for me. Honestly, I wouldn't have gotten far in life without it. I have many people to thank, but Art Buehler especially, my former professor in esoteric contemplative/meditative practices who reminded me and pointed a certain possible direction of where I should head when I sense a lost in my life's direction, is one those I should thank the most. I know this seems like an individualized response to structural oppression, and I don't intend to paint such a picture, but I do believe we need some kind of mental stability to keep on going. To survive if not thrive.

Art sadly passed away in 2019. I received an email about his passing. And come to think of it I never really did allow myself to properly grieve for his passing. I don't know why. To be told through a short concise email that someone you cared for died, without having the opportunity to properly say goodbye feels like that person never really passed away. It is horrible way to end relationships. A sudden cut, nothing finalized, and since goodbyes are relational, now nothing can really ever be concluded. I have to make amends with myself and only with myself. If I said goodbye yesterday, or if I say goodbye today or perhaps tomorrow, will it ever be enough for me?

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Life is individual yet also relational. It's good to have friends, family, people that care for you or the odd mix of all three to get you through life. So although I have these array of tools to possibly help get me through life but if the people whom you look for some kind direction is no longer present, I'm just not sure for how long I can maintain it if I'm doing all this by myself. Will a breaking point come to me?

The mind is a fickle thing, and the mind is as strong as its habits. Bad habits, bad mind. Good habits, good healthy mind (no habits, no mind?). They also say that things that might happen, will indeed happen. It is just a matter of time. If so, how will I break? To what extent? For how long? What will change? What will I lose? Will there be something renewed? Will I come out the same person? Will I come out changed but for the worst?

This is one of the things that worries me. That certainty of uncertainty. The certainty of breaking, the uncertainty of when and of its form. Will I explode in sudden exasperation, engulfed in madness? Will it be a quick balloon pop yet a slow descend into meaninglessness? An unabashed diatribe rant towards someone I care? Something that's just a twitter post away from me on actually doing it. Will this be an opening, an opportunity for 'satori', a sudden lift of the 'veil', bringing about comprehension and understanding of the true nature of things? Questions, questions, questions, not much when it comes to answers, is all I have for now. To be hopeful is hard these days and with the wavering hope, very much coming and going like waves, it has become incredibly hard to even retain any semblance of kindness. That is something I do not want to actively become a habit of. Without hope, comes the cold embrace of fatalism that many on the 'left' are guilty of. Clutched by fatalism, empathy becomes harder to come by. I've seen it, and I have felt it.

I know that my eroding sense of hope is connected to my personal dreams. Specifically how it has become very hard to actualize it. Rara and I never really planned on staying in Indonesia for long. I was confident enough, a bit too confident come to think of it, that we will be out of Indonesia by 2021 the latest. A mere 2 1/2 years after our last stay in New Zealand. The plan was for me to continue my studies, getting into a Ph.D. program and of course a scholarship. That was our ticket out. Hoping that we'll be back to our old routine in Wellington, in and out the university's library, my head in books, loving our 'flatwhites' while regretting having too much of it, the usual stint doing some university tutoring, community organizing stuff, lazy gardening, out and about on the weekends tramping around Wellington and if Covid did not happen or/and maybe if my government handled things much, much better I think that would've been the case. Or at least I constantly would like to imagine that would be the case.

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Yet here we are still in Indonesia, me struggling to do my Ph.D. through this wretched distant learning, initially in the comfort of my home yet steadily devolving into cabin fever. And Rara with her own struggles trying her best to get back on her feet as an aspiring musician. None of it is going as well as we had hoped for. All this while juggling trying our best to keep ourselves safe and our families and friends safe. Both of us have become direct witnesses how challenging this has been, physically and mentally. Both of us slowly grappling with the continual kick in the gut, the never ending structural absurdity, violently absurd.

That slow grueling realization of how fragile our lives are. Not just existentially. It is existentially precarious yet at the same time understanding that precariousness in many of its aspects is structurally and politically maintained. It is this political construction of precarity, which Isabell Lorey elaborates in her book State of Insecurity: Government of the Precarious, that angers and saddens us the most.

Lorey provides a nuanced approach in unpacking and differentiating this thing called being 'precarious'. The three dimensions of being precarious: precariousness, precarity and then precarization. On precariousness, Lorey draw's on Judith Butler's conceptualization of precariousness which she sees as existential, relational and inevitable. I'll insert my existential philosophy and Buddhist values here, to help me see and more importantly accept the transient nature of life and that impermanence or change is the only constant. Our lives, our bodies are destined to die and wither away. We humans are fragile mortal beings. The loss of life, the loss of one's identity, the loss of everything that makes us, us is unavoidable. It's also a 'relational' thing, as in it is also a shared experience. Everyone will experience it. It is the great equalizer some say.

Then we have precarity. Yes everyone dies, but the process of dying or even the process of grieving someone's death is dependent on what Lorey see as the “effects of different political, social and legal compensations of a general precariousness”. Some die at young age due to starvation, riddled with poverty and disease and have nothing or no one to ease their pain, others die surrounded by family and friends in a well-cared for hospital. Some have days or weeks to grieve, others have to go back to work the next day as she or he have no luxury to stop working even just for a moment and simply grieve. To stop working even for a day draws some closer to the possibility of death for the person or those dependent on the person working. This is the inequality of dying and grieving due to our social hierarchies. How fragile we are, is dependent on those social hierarchies.

And last we have Lorey's third dimension, governmental precarization which is the instrumentalization of insecurity by the government. In other words, the government using the idea and the reality of insecurity as a tool or device to control its citizens. The calculated, deliberate attempt by the government in destabilizing our lives in order for us to be easily governed. Insecurity, be it real or due to perceived constructed fear of insecurity is an effective governing tool. The fear of being labeled "useless and lacking in contribution to the nation-state". The genuine insecurity of not being able to get a job due to the false understanding that it is simply a result of an individual's laziness rather than due to systematic government policies. The deliberate attempt in making our lives constantly insecure, constantly on the edge, without us initially knowing it and when we do come to understand, the blame is on us. It is normalized and it is internalized.

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This is not simply a social issue, it is a deeply existential one as well. We Indonesians have very little to make us feel safe at the moment. Covid and the government's response to it has severely limited our movements and it's not simply physical immobility, but also an existential one, the inability to even have the imagination that our lives are actually "going somewhere", towards a forward direction. Perhaps some sort of minute incremental progress, but progress nonetheless. This imagined mobility is what Ghassan Hage calls as "existential mobility" and this immobility suffered by many of us is what he also calls as "stuckedness".

Turning an often momentary or the ephemeral nature of a crisis into something prolonged and perhaps even permanent is another part of the strategy of governmental precarization. Our lives or jobs are always on the line and again coupled with the sick prevailing idea that we only have ourselves to find the solution. The crisis is permanent, we don't know why but we've been told that way, if we fail to overcome it is because of our personal inabilities thus proliferating and intensifying this sense of stuckedness.

Forcing us to accept whatever solution the government-messiah presents us with in order to relieve us from this suffering. From labour laws that normalizes precariousness even more, to oppressive new laws that limits our desire and ability to dissent, to including who or how our enemies are defined, easily accepting who is to blame for all this insecurity we are all suffering.

Be it the long dead Indonesian communists, the Chinese Indonesians and the racist perception of them being "selfish and greedy", the Indonesian Islamists - the kadruns and their conservatism, the "foreign forces" whomever they may be constantly trying to take over Indonesia, anyone or anything is to blame. Anyone but the Indonesian government and its affluent patrons. Insecurity and the fear that rises from it renders many of us easily governable and compliant.

This governmental precarization and this 'stuckedness', which Hage sees no longer as a possibility that may or may not happen but an "inevitable pathological state which has to be endured" is how Rara and I feel at the moment.

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Rara and I feel our lives are going nowhere. We feel that our lives are stuck, constantly rotating in a hamster wheel trying our best to overcome our precariousness. No progress, no forward movement, no growth, just trying our best to survive from this sustained uncertainty. It's an awful feeling, paving way to existential dread. We are very much looking forward to moving back to New Zealand as soon as possible but with the conditions right now, that is something I can't even dare to imagine.

And although I am grateful that the weave of our privilege with at many times just pure sheer luck has kept us alive and physically well for the time being, we both now realize that we have hit a proverbial concrete wall here. Adding to the already precarious nature of life here in Indonesia, our line of work as a fledgling social science academic and aspiring artist and what Rara and I aspire to do socially, what we aspire to become, easily ends in stagnation if we intend to continue to live our lives in Indonesia. (I want to direct you to Social Science and Power edited by Vedi Hadiz and Daniel Dhakkidae to get the gist of what I'm trying to get at here.)

This is a hard pill to swallow, harder to write and even more so to act upon. I am existentially tied to Indonesia, my family and friends are here, my father is buried here and so will my mother. Memories of the distant past, the colloquial language when shitposting on social media, my mind and body have been shaped by Indonesia in ways I possibly do not even fully realize. This is why I oscillate between guilt towards others and guilt towards the self. I feel guilty for simply having an exit strategy when many others don't, I have the luxury of choice. Yet I also I feel guilty for feeling guilty about this, as it means I am also neglecting the well-being of myself, now and in the future. I need to work on this and find my bearings, being stuck in a guilty limbo won't get me anywhere.

And the future is far from stable, I wonder what is on the other end of surviving this pandemic? There is so much collective grief, collective anger and of course personal anger. All this will amount to something, I'm sure of that. Although I don't know what exactly, I'm not entirely confident this something will be good. John Keane's new book 'The New Despotism' comes into mind.

What do I personally do with all this anger? I’ve noticed how anger, especially when it is on the verge of hatred, morphs itself and easily descends into madness, into aggression and often showing itself, unawaringly to us, when the act of expressing anger happens. Your mind becomes instantly clouded, ending in mindless action. This inability to have control over oneself terrifies me. I already have so very little semblance of control over life in general at the moment, if I truly have no control over myself whatsoever, what then do I have?

And I wonder if it is a waste of time asking these pseudo-intellectual questions? I don't know, yet I do know I live in a society where it hones aggression and hostility, whether it be in physical and digital spaces, and I would like to draw myself away from all this at the moment before I transform myself into something I do not wish to be. Anger I can fully understand, and it is needed and useful. Yet to actively transform it into deep blinding hatred and sustain it daily, is something I feel psychologically destructive for me and I'm trying my best not to go on that path.

I rarely update this blog I know, but this blog has always been used as a personal chronicle of how much I have progressed, digressed or both. And I needed to write all this, because I've never been this least sure of what my life should be like and where it should go. I know I am not alone at this. This pandemic has destroyed the lives of many, our futures, our dreams, our sources of love and I hope that anyone of you reading this finds a way to get through it, doing anything you can do day in, day out.

I'm not sure it if amounts to anything. Maybe it won't, maybe it will, or maybe it has but maybe we just can't see it. All I can personally do for now, is to hold on to these 'maybes', and maybe, just maybe I'll get through this too.

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“Where must we go...

We who wonder this Wasteland

in search of our better selves?”

- The First History Man, George Miller

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mycelier · 3 years

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My name is Simone and I would like to tell you a tale!

I will not have access to my laptop for some days more and because writing on my phone is kind of painful (physically, because I am working on hand mobility now), this may end up in drafts and taking a while to post. I am going to share what has been happening the last 2 months because I feel like everything went from 0 to 100 in the span of a few weeks and its been really, really wild.

So!!! LETTUCE begin!

For roughly 5 years I've been struggling to get a diagnosis on an extremely painful area of my arm. There was literally nothing visible; no lump, discoloration or any other physical abnormality to indicate anything was wrong. I spent thousands on pretty much every kind of imaging you can do, and was told time and time again that there was nothing wrong and, perhaps, it was psychosomatic and I needed therapy or, more often than not, I was given a shrug and a vague "i dunno" response.

This year, something changed. I deal with chronic pain (my spine is congenitally fused in my neck and lower spine and I have baby bone spurs all over), and in the process of trying to work on that I brought up my arm again to a dr I no longer see. He'd told me my arm was SEVERAL things over the years I had been seeing him but this time said it was a fibromyalgia knot, something I had been told by a team of doctors some time before that. I said okay cool and was sent to a physical therapy rehab center where the dr worked with myofascial release and stretches to help with injuries. This amazing man fixed my plantar fasciitis and helped get my chronic headaches under control but NOTHING we did helped my arm pain. Within a month he was worried bc we had started to notice that there was a hardness to the spot that never changed with any exercise or massage.

Worried that there was a nerve being trapped or crushed (another diagnosis I'd gotten over the years), this amazing man sent me to a neurosurgeon who immediately frowned and said he didn't think my neck pain and my arm pain were connected. He ordered an MRI of my arm and despite it not being visible on an MRI 2 years before, he found something PHYSICALLY THERE where I said I had pain. He considered doing the surgery to remove it (despite being a neurosurgeon he was fascinated with this weird horribly painful spot) but eventually sent me a surgeon for an oncology center, assuring me it was because this new surgeon was one of the best in Texas for removing soft tissue tumors, not because there was any thought of cancer.

I met with the surgeon who gave me one more diagnosis of an AVM (arteriovenous malformation), snd said they were benign and not necessary to remove as well as the possibility that if removed it would likely return. Truly, at this point after 5 years of constant nauseating horric pain when someone brushed against me or if I gently brushed against ANYRHING, a pain so bad that it had basically made me stop using my right arm as much as possible (of course I'm right handed lol), I said GET THAT FUCKER OUT OF THERE MAN and my first surgery was scheduled.

Surgery one occurred Nov 5th and was an out patient event. I went home and passed out. At some point my mom said that while I'd been in recovery the dr said the thing in my arm hadn't looked like what he expected so he had sent it to pathology. I went back to work and was hanging out until the Tuesday before Thanksgiving when I went in for a super immediate meeting with a different doctor who told me that what had been in my arm was a synovial sarcoma, aka, cancer! He, this incredibly kind man I did not know, gently discussed chemo and told me I needed to have a CT scan immediately. Based on the CT, i was either in stage one or stage four if it has spread to lungs. The day before Thanksgiving I received the news that it was stage one, it had not spread, and i was so fucking happy.

Then it was time talk about next steps. My surgeon marked out a circle on my arm to indicate how much he was gonna remove in order to guarantee clear margins..but it was not enough of a meeting for me to grasp the surgery I was about to receive.

The day of my second surgery, dec 8th, came quickly and i met with the plastic surgeon, the kindest, most patient man. He moved my arm around and explained how he was going to hijack a vein from my forearm in order to keep the blood flow health to the flap he was gonna take from the donor site: My inner thigh.

It has been 11 days and I am living in an inpatient rehab facility, working on dealing with the nerve damage/pain, the EXTREME pain of my donor site, and the lost mobility that I am working on getting back, both in my leg and my hand. The majorities of my arm is numb...except where the nerve pain burns my wrist and forearm and makes it painful to wear my arm sling (I can't fully extend my arm, nor can I lift, push, pull or use my arm in any way that would stress out my new arm flap). Also may have a brand new urinary tract infection but as I write this I'm chugging water for a urine sample to hopefully get that treated. Below are some pictures I have taken/had taken of my arm! Im not ready to look at my leg outside of the bandages (which, since having the wound vac removed today, hell yeah, will need daily dressing changes).

EDIT: I tried posting pictures of my arm last night and my post disappeared immediately so I will try to make a new post with these photos in case the whole post was erased because of them. I will tag them as post surgery photos. I do not consider them gory or excessive but hey that's just me.

I intend to post more things as I keep healing and as I gain more mobility. I was given "independence" in my room yesterday which means I can officially get up without any assistance needed (using my badass new cane to help me lift my foot in and out of bed)!!!! Which also means I can get up whenever I want without the bed alarm going off. I have a badass cane that has been the best tool in helping me get around (and has inspired my mom and others to suggest and look into getting me a cane sword which makes me laugh REAL hard). See below me using the cane to move my foot in and out of bed!

Part of why I'm posting this is because I really needed to talk about it and while later posts may not be this long or expository but I wanted to have a base post to explain other ones related to this one!!!

I will update with some newer pics tomorrow night when my mom comes by to help me take newer pics. The arm flap looks super healthy (according to the drs), and when they changed my leg dressing they said its looking really good and healthy!

I......also really wanted to post my Amazon wishlist. Due to this stupid wild bad lottery ticket, I've been struggling to pay my bills and rent but!!! I have good insurance, thankfully (since I live in the US and my hospital stay and this rehab stay would have more than bankrupted me), and im hoping my disability checks will get here in time for rent!!! I'm putting up my wishlist bc I can't afford some of the "essentials" on there and, also, because I havent been able to have any kind of comfort during any of this. I never ask for anything for holidays because usually i...dont want to burden people with spending money on me since I know how hard money is, especially right now. And if I don't have enough for rent later I might have to create a go fund me...but right now everything looks good for rent and bills just...not for anything fun.

Thank you so much for your time!!! And happy holidays you wild bastards!!!

https://www.amazon.com/hz/wishlist/ls/36PG6BAYD18U7?ref_=wl_share

#tw for many things!#cancer mention #surgery mention #i tried to add photos of my arm post surgery and my post disappeared so I will try again in a separate post #everything relating to my cancer or recovery i will label as badass battlestar bc it makes me feel cool #badass battlestar

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spacebatisluvd · 4 years

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Three Bad Days

This one got long, so I’m going to post the first part here, with a link to the AO3 page for the rest. Link is available above or at the end of this segment.

Summary: Chronic pain ebbs and flows. Some days are better than others. Some are worse. These are three ‘bad’ days from three very different times in Hordak’s life.

Angst, followed by fluff and hurt/comfort. You have to follow the AO3 link for the fluff and comfort.

Content warning: chronic illness with no easy fixes, chronic pain.

Same days were good. The pain in his withered, traitorous body was manageable and he was able to do what needed to be done. He had the patience to tackle the problems his Force Captains brought to him, and he wasn’t too distracted to make progress on the portal.

Some days were not. And from the moment he woke up, he knew today would be one of the latter.

It took effort to drag himself to the applicator. Imp followed him there, gliding overhead—not touching him, not making a sound, just eyeing him with concern. He wished he could sleep with his armor on, but over-dependence on it would speed the muscle atrophy. Really, he should do his exercises before putting the armor on at all, but the pain was like a heavy drum beat—constant, insistent, and overwhelming. He couldn’t think, couldn’t focus on more than one task at a time, and right now, “put on his fucking armor so he could function” was overwhelming everything else. He gripped the edge of the console, his breathing heavy as he activated the applicator’s arms.

The machine was not gentle. He inhaled sharply and bowed forward. The dull drum beat of pain sharpened briefly as the armor plugged into his cybernetic ports. Thankfully, the ordeal was brief. He stood at the console for a little while, catching his breath. The pain was still there. A constant, insistent hum. It was no longer so overwhelming that he couldn’t focus on anything else, but he was definitely aware of it.

A bad day, indeed.

He straightened and walked into his sanctum, picking up a tablet so he could review his notes from the previous day. With the constant, low-grade hum of pain haunting him, it was harder to focus, harder to troubleshoot. He could see that it wasn’t working, but he couldn’t piece together why! He clenched his hand, trying to remember that breaking the tablet would be unproductive—

“Oh, are those your notes from yesterday?” A strand of hair plucked the tablet from his hand. He blinked, then turned to face the princess that had invaded his sanctum so recently, his eyes narrowed and mouth turned down in a snarl. “Fascinating,” she said, drawing out the word as she scanned the tablet. She didn’t seem to notice that he was glaring at her. “Here.” She held out a different tablet. Still sneering, he snatched it from the rope of hair.

“And what am I supposed to do with this?”

She glanced back at him, smiling. “Well,” again, she drew out the word, “I noticed that you prefer electronic copies of your notes, but I’ve always made verbal recordings. So I made a program for Emily! I just plug my recorder in at the end of the night and she transcribes all my notes.”

He blinked, then looked down at the tablet. “That was...considerate.”

She wasn’t listening. Already, she was poking at the machine, consulting his notes and making a few of her own. He expected the princess’s chatter to grate on him, but the cadence and pitch of her voice was soothing rather than annoying. He stood behind her for a while, simply watching her work and listening to her voice. Her rambling narrative plainly laid out the problems with the machine, somehow making it seem so much simpler than his pain-addled mind had been able to parse. He began looking over her notes, pulling up another window and using a stylus to sketch.

She was more than capable of doing the bulk of the intellectual labor, and though he was frustrated with his present limitations, they were making progress. Frankly, it was nice to shut off and just follow her directions for a bit.

Eventually, though, even that was becoming too much. “That’s enough for today.”

“But we have so much we can—“

“Not. Today,” he said through grit teeth. The robot, possessing a good deal more sense than the princess, started to drag her out of his sanctum.

“Oh. Okay, then. Bye!” She waved her hair at him as the robot took her away. “I’ll just work on the weapons upgrades, then. Should I download those notes for you as well?”

“No.” He just wanted her gone.

“See you tomorrow!”

The door slammed shut behind her, and he sagged against the consul, his muscles aching. He wouldn’t be able to get anything else done today. “Useless,” he muttered, hating this body, hating that he couldn’t make himself a new one. Nothing else to be done for it now, though. He fully intended to take a sedative and go to sleep—if he didn’t faint while taking off his armor.

He eyed the applicator with trepidation. Swallowing, he shut his eyes and steeled himself, though he would have thought he was all out of steel for the day. One task left. One. He could do this.

He dragged himself to the applicator, activating it with the press of a button.

(Long ago, he’d soundproofed the walls of his sanctum. On the bad days, he was grateful for that.)

Follow the link for fluff!

#hordak #entrapta #entrapdak #ao3 link #my work #angst #chronic pain #chronic illness

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exigencelost · 4 years

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this one’s gonna be rambly. this may or may not be a write-only post. continue reading at peril of wasting your own time.

I started to write this as an addition to that post about brain fog and capitalism:

Also, since I’ve now brought up ADHD, I’m just gonna clarify that this post isn’t in fact about ADHD. I know I opened with “unable to consciously direct your attention” and that that’s like, the signature ADHD symptom, and if ADHD people want to add thoughts on that subject go for it; but ADHD is not an illness, and this post is about illness. I’m not talking about “I can’t focus because of a basic static fact of how my central nervous system is wired” I’m talking about “I can’t focus because today, my brain decided to stop taking requests, and everything is either fluffy or way too sharp, because I am sick.”

Then I decided not to add it because the post was already long and it detracted from message focus and also required me to think too hard about like, how do I phrase this so it’s clear I don’t mean “ADHD isn’t important/ neurodivergents aren’t invited to the sick person club” but rather “These are two different conversations and conflating them isn’t helpful,” and after a certain point that becomes a rabbit hole and, crucially, my brain is fuzzy today. (philosophical ramblings on the nature of illness under the cut)

But I am now Thinking about this topic. About ADHD and chronic fatigue, and the differential nature of not being able to do things. I’m also thinking about that post that was called “how to unfuck your house in the minimum time possible” or something, that gave fantastic advice for a person with ADHD and/or various forms of executive dysfunction and/or just a person whose house is dirty to like, organize and execute the the task of aggressive superficial house cleaning on a deadline. And reading it was so stressful to me. Because the advice, which was detailed and friendly and enthusiastic, described a physically impossible set of tasks. Which. I could go down another rabbit hole here about “you can do it!” type language and its impact on sick people, but I’ll try not to. I did end up reblogging that post with a note that said “If you have chronic fatigue this absolutely will not solve the obstacles to you cleaning your house, and that’s not your fault.”

and like. Why did I need to do that? I really felt like I needed to add that. Why? The post was not claiming to be advice for chronic fatigue, the post wasn’t doing anything wrong, except not mentioning me, not mentioning sick people. Erasure matters; combating erasure matters; telling sick people that they exist matters and that’s a reason by itself; but I’m not trying to justify the impulse right now I’m trying to understand it, and like, get a handle on my Thoughts about the relationship between executive dysfunction management and chronic fatigue management. Disability liberation is a complex thing. Personal context: I’ve danced around an ADHD diagnosis with multiple psychiatrists over several years. Probably I don’t have it. Probably what I have is a mixture of avoidant anxiety and brain fog from CFS or something similar, which can create very similar symptoms, including but not limited to the most obvious of “I sometimes cannot force my way through this difficult linear cognitive task.”

Psychiatrists, in my experience, are only interested in the question “Do you have ADHD” as a precursor to the question “Should we put you on stimulants.” For a host of reasons, stimulants (at least in ADHD therapeutic doses) are probably a bad idea for me, so the ADHD discussion often ends in a stalemate: the answer doesn’t matter, the evidence is ambiguous, let’s move on.

But it matters a little bit, I think. There is a difference between disorder and illness. There is definitely a difference between neurodivergence and illness. The three terms overlap and are interrelated and in a fully liberated world maybe we wouldn’t use any of them, but here we are in this world, and I think the distinctions are important. (Another rabbit hole I’m stepping around here: the social vs the medical model of disability, and why I think they are both better understood in the context of each other than either of them are alone.)

I have a line I say sometimes, when I want to reset a conversation because I don’t like where it’s headed, or when I just need to express frustration, which is: “Time management is a pyramid scheme.” I cannot manage my time. The whole idea is preposterous to me. Time is a tenuous fluctuating infinitely powerful elemental force and I am like, not even clear on why you shouldn’t run the garbage disposal without the faucet on, you know? I’m not a match for time. I know my limits.

A lot of people have suggested I take courses in time management because I told them I was too tired to stand up long enough to cook breakfast. I did not find this response to be helpful.

For a while I had, like, an almost-trauma response to people talking about ADHD-flavored time management strategies.

I am sick in a way that means I walk through most of my life in a fog. This is not a complaint. I like fog. I mean literally, I find literal fog very beautiful and comforting, and I use it as a metaphor for my cognitive experience quite consciously. You see shapes in fog that are related to, but not identical to, the physical reality around you; your understanding of distance and presence is distorted in fog but not erased; when you walk through a fog you must be engaged in the constant project of imagining the world around you, of guessing its textures and colors based on tenuous evidence. This is what my illness does, a lot of the time: requires me to imagine my reality, rather than simply perceiving it. Another rabbit hole: explaining what I mean by that would take me hours to nail down. I’m not going to try very hard. Like I said, this might be a write-only post. Here’s me trying not very hard: My capacity changes every hour, every day, every week. It is difficult to remember where and how my body hurt yesterday, let alone this time last year. There is definitely no way to know what it will do next month. I hate keeping symptom logs; they feel like reading my own entrails. I refuse to answer mundane questions on scales of one to ten (“on a scale of one to ten how bad would you say that movie was?” “I wouldn’t”) because I refuse to do the work of computing infinitely varied reality to numbers, because when I was twelve years old I was asked over and over to rate my pain on a scale of one to ten and every answer felt like a lie and every answer was treated like a lie. Or—not so moralistic, no one got mad at me, exactly. Every answer was treated as though it were imaginary. If the answer changed, it was like I’d broken out of character. I thought there was a magic number that might make people understand that and how I was sick. There wasn’t. The whole thing began to feel like a process of imagination. The doctors and teachers and nurses were imagining a child who wasn’t me, who didn’t feel what I felt; I was imagining someone who could understand what was happening and help me. We were trying to conjure each other. To pick shapes out of the fog.

I am never going to get an accurate sense of how much I can get done in an hour. There is no answer to that question. There are answers, plural, ranges based on predictive omens that are closer to reading the future in tea leaves than they are to using mercury to measure pressure.

So, I can never plan what I will do with an hour. I can try to do things, and often I succeed. But I don’t get to sit down and say “X set of things will happen by Y time.” It doesn’t work like that. It never will. As far as I’m concerned, everyone else is just pretending that it works like that, and as long as they keep pretending everyone else feels that they have to pretend too, and so it goes on. Time management is a pyramid scheme.

I have a document where I keep a list of things I need to do for work. In my experience, trying to divide that list by what day I’ll do what thing is an exercise of imagination, and not a very interesting one. As a sick person it is more effective for me to be always ready to improvise, always set up to recover from a sudden incapacitation, always ready to pounce on a sudden moment of cognitive clarity and physical function to do whatever is most important right now, than it is for me to try to make a schedule and stick to it.

When I make plans with friends for the future I am reaching for a distant shape in the fog. I am asking someone: help me to imagine this thing. If we imagine it, together maybe we can make it come true. And when we get to the day of the plan we made, sometimes the shape emerges full-formed from the fog, and sometimes it dissipates, drifts out of reach. That’s okay. You have to always be ready to imagine something else.

What did I start this post talking about? ADHD? Okay. I remember why I started on how much I can get done in an hour. When my psychiatrist sent me to an ADHD-informed attention management class, the teacher of the class told me that people with ADHD often have drastically inaccurate ideas of what they can accomplish in an hour. The teacher suggested that we all set a timer for an hour and start doing something and when it ends, see what’s done. Do that a few times, and then you’ll have your answer, and you can use that to make plans.

I thought that was the stupidest thing I’d ever heard. What does today have to do with tomorrow? What does this hour have to do with the next?

It wasn’t stupid. It just wasn’t about me. Okay, finally, here we are: the answer to my initial question. Why is it important to differentiate chronic illness from ADHD, when we’re both slipping on the wet stone stairs of time? Because the answers aren’t the same. And if you try to pretend they’re the same, then sitting in the back of that time-management class listening to someone offer solutions that have nothing to do with you, you become a little bit more invisible to yourself. The shapes in the fog shrink a little further away from you.

I don’t have an ending point here. feel free to add one of your own.

#this post makes no attempt to do the accessible emphasis thing because i have no ability to identify what i should emphasize #disability #chronic illness #adhd #chronic fatigue #chronic fatigue syndrome #anxiety #not gonna tag long post bc there's a readmore #sick

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abtoddler · 4 years

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Good morning!

Soooooo imma air something that happened. Someone thought it was a smart idea to post meanness of one of my pics.

Yes, im defiantly not neurotypical. I am on a ton of new meds that trying to re established a healthy base.

I have had a meltdown by everyone i loved cause they really hurt me when they prolonged my fears and stuff. So fuck eveyone who wants to give their 2 cents saying that what ever i do hasnt got to with autusm. Fuck those people it the entire reason i was tortured by my mother, my dad was her muscle. Her abuse hit my school, i couldnt get away from them there. I couldnt have regular friends, they all had to be out and away from home because of how much she hates eveyone.

My disability case is being worked on by the disability advocacy center in san diego. This is a scary thing for me when its this bad. Its been this bad a few times. It always costs me my friends. Once someone triggers that kind of a response, it means they will be able to do it to me again, because of the trust they have established.

They use trust to have me vulnerable.

The talk and they tell me to “trust that they know what im talking about so i should not describe it, when they are entirely wrong

They’re gettibg mad at me when they set me off and start yelling at them when they make to much noise i panic

They get mad at me when i ask:

Can i please have the air conditioning on, ir please not talk, or they feel they are entirled to start smacking things, yelling at me for how perfect something is because its the only words i can het out.

So fuck absolutely all of you who would say no im not autistic, or my diapers, clothes, furniture, does in fact come directly from my regression features of the type of autism i have. I will be doing everything my psychiatrist told me to do.

Get safe.

Im doine being abused by people who make me love them, hurt me from their intentional harm because they are angry at me when i get scared. Of yelled at by my daddy when i don’t understand. I love those guys; but i also love my mom whose been compared to hitler, for her inflicting the aba abuses on me for 30+ years.

This is my page, my thoughts what i find nice and I am not going to let them have any say.

I no longer talk to my mother (march)

Daddy and one of my big brother are no longer living with me (april)

Big brother rocket. Is no longer in my life (yesterday) i told him goodbye.

If i will not tolerate the people i love hurting me because they are trying to when im afraid or im scared. I am an actual pirate and a sorcerer. If i have to become a villan in order to live a life free of the abuses by the ones i love.

My daddy hayden does a different everyone he knows how to calm me. Nikki and alex and hayden keep me level when i cant talk. They are in the technology where i speak and communicate (text).

This is my blog, my disability, my pain, my suffering, my abuses and my bad times. Turned into somehow so something good comes from my life.

My plushes are soft, my bed comfy for my bad back. Im medically incontinent so diapers are the entire problem ive had by my parents because for me they are a need: people abusing me because of rhe laundry list of needs that they don’t understand.

There are circles of people, big brother alex calls it like a castle. Or others for as a family. The difference betwen a parent like haydens, to a daddy like xavier: there is no amount of anything other then love to him. Same as big brother nikki and alex, im not normal.

Im a walking toddler, i eat babyfood cause my stomach doesnt digest food properly. I am incontinent front and back, my meds and the pain im in has been 8+ years. The abuses for my regression, my diapers, my personality, that those i love to allow them the kind of relationship where they are involved and a degree of trust had been established. However their actions have made it so i dont trust the network of support im supposed to have.

When im scared, or like unable to be around daddy cause im smoking my weed for pain management. If im talking to people online aboit the stuff that scares me because they are people who.choose me. Regardless of emotional problems and mental issues, to find the level or care i need. When those people in my support network fuck me up, they are no longer able to. My mother; i so dont want to see. Tim i never wish to see again. And i cannot emphasize how much i miss my brother nikki and daddy, and how completely different daddy hayden is. There is no competition for my love of these 4 men, and my loathing of those who intentionally cause me pain.

Im trying really hard. People who do not realize that yea im a disabled autistic regressor in chronic pain and have a laundry list of meds im either on or didnt. I hurt every day. I would rather my plusehs and crib than to not having what im comfortable with. If people do not allow my comfort, or safety. Then they are not ever going to be able to do it again.

My psychiatrist said to get to safety. I live alone now. Im not happy about it. I will be working with a psychiatrist and the disability staff and my doctors to chemically assist the process to balance my thoughts and try to come up with a version of me I like best.

#tykables dinorar #autism #wet #autistic #incontenence #chronic pain #little4evr

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bigskydreaming · 5 years

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So, I really hate making these posts and try not to as much as possible, but the only thing I’ve eaten in the last two days is a stale muffin from 7-11 that was all I could afford with the whole dollar and ten cents in my bank account yesterday.

I know there’s a ton of people in dire straits and there’s never a shortage of donation posts, and I also know from personal experience that there’s also a lot of amazing and generous people who give as much as they can to people whenever they can. I KNOW that some of you want to help but have just already helped as much as you possibly can, and please just know that just because I’m still struggling, that doesn’t mean that any help you gave me already didn’t make a difference. The responses I got to my first donation post early last month are the only reason I survived December, and like....they made a difference, and they definitely mattered. And I also know there’s people who see my posts and want to help but already gave whatever they could to other donation posts and please don’t ever feel bad that you don’t have anything you can send because you already sent it to someone else who needed it.

I truly do not make posts like this with any kind of expectation, its just...desperation, lol. I’ve monetized every skill I can think of that I have in every way possible I can come up with, I’m working as much as I possibly can when I do find the work, but this past month I’ve spent three to four hours every day searching out new jobs and commissions and clients with practically zero results, and I can only work with the work that’s there,

There are positives, I mean, my efforts in rebuilding my credit have really started to pay off and I finally have a decent credit score that should make getting an apartment finally possible on that front. I have insurance now, so all the stuff I’ve been waiting months to get started on is now at least feasibly affordable. Now I just need to be able to like, capitalize on these things, y’know? As great as it is to only have to pay sixty bucks for one of the medical tests I need done where without insurance it would’ve been three hundred, only making just enough to stay afloat in the motel I’m at day to day still keeps that stuff JUST out of reach and that’s...ugh.

And also, its hard to be productive on one muffin every 1-2 days lmao, esp when you’ve got the whole chronic pain medical shit blah blah wtfever ugh shut up my life.

But seriously, anything you can spare helps keep me afloat and building towards a day/point when I can actually do something to turn things around in a more permanent, sustainable way. Like, you may think that oh ppl say on donation posts all the time that even one or two bucks helps, but does it really? But let me tell you, like....yes. Yes it does. Even two bucks is basically double what I spent on food over the last two days lol, so....yeah.

And again, if you just can’t spare anything, you wanna help but you’ve already helped as much as you could or helped other people - I totally get that and am grateful that you already did everything you could, whether it was for me or for someone else who needed it. It may not make a ton of sense but it honestly helps to know that some ppl just aren’t in a position to help me personally because someone else already benefited from their help. Like, when you’re living one of those ‘ugh, wouldnt wish this on anyone’ lives at the moment, and you see so many other ppl going through so much shit of their own like, fuck yeah, I’d love a comfortable cushion in my bank account, who wouldn’t, but there’s still its own kinda value in knowing someone else who spent yesterday just as worried about where their next meal would come from as you is sleeping a little easier tonight because someone else responded to their donation post instead of yours. Like, that’s not a loss, or a waste or something anyone should feel bad about, so please don’t.

If all you can do is reblog, that honestly helps too, so please don’t think its an empty gesture that doesn’t really do much. You never know when your reblog might be the one to make a difference for someone, because someone who follows you is in a position to help and might never have seen my post otherwise. I know I got donations last month from people who don’t follow me and probably had no idea who I was before my post crossed their dash, and I know in the past I’ve donated to people I’d never heard of before a mutual reblogged their post, and again - when even a few bucks can make a difference, let alone the larger amounts some generous souls on here are capable of sending, yeah, even a simple reblog really and truly can make a difference. Not just for my post here, but for any and all donation posts.

Anyway, here’s the link to my paypal again, and thanks for reading or reblogging or donating or hell, even just for following someone who reblogs this onto your dash because that’s definitely someone I Officially Like and appreciate even if I have no idea who they are lol.

https://paypal.me/bigskydreaming

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tinlizziedlinwa · 4 years

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Post-surgery update 01

I've had my microdiskectomy/laminectomy at L4-L5 done yesterday (06-JAN-2020) so this is the "Morning after" update: omg I'm so sore. Not unexpected. My left leg pain is pretty much gone, which is a huge relief, but holy shit my back hurts now :) Don't worry, I've got pills for that, but it's a struggle to stay ahead of the pain. Anyone who's experienced acute and chronic pain knows what I'm talking about. When you're behind the pain, you're miserable. It hurts so bad that it's having real effects on your mobility and puts a pretty big crimp in the quality of life. Getting "ahead" of the pain means taking a large enough dose to knock down the pain into the "manageable" realm, then staying on-top-of your dosing schedule (I set timers on my phone). I've got a little pill-keeper on my keychain so even if I'm out I can still rigorously follow my schedule. The same-day surgery suite personnel were a delight. I had an excellent experience and would recommend them in a heartbeat. The nurses and I had a discussion about my incontinence. I had to be naked for the surgery (gown open to the back, but no undies of any type). I had brought my diaper-bag and turned it over to a nurse, and lo-and-behold! I woke up already protected by a Northshore MegaMax that had apparently saved their bed from a small sprinkling. Of course, I had to produce at least 100 ml of urine before I could be released, which took a few hours. I'd had a full bag of Ringer's Lactate and some coffee and icewater by the time I actually managed a pee-on-command (for me, that's sitting on the toilet with a "hat" collector in it, pressing on my bladder and "pushing" as best I could). The nurse had to help me get re-diapered with a fresh one, as not only had I tinkled a litte but the OR nurse must have ripped the backing while pulling up the first one- the plastic was ripped horizontally below the waistband at the back and I had SAP & stuffing falling out. Folks don't realize how much bending and twisting goes on while diapering oneself, and I wound up needing the nurse's help getting a new one on. She was very professional and caring, showing no embarrassment nor shame, and her demeanor made the experience much better. May she be blessed! My ex-wife and I are still good friends, and she's the one who chauffered me over to Mountlake Terrace and back, then stayed with me until about 9:00 PM last night to make sure I was doing ok. We watched Marvel's Black Panther - She'd not seen it before! Bless her for putting up with all my moaning and groaning and shuffling around when I couldn't get comfortable. Being back home is good. I feel safe here, I've got my "toys" (hi-speed interwebs and TV), a good selection of a couple-hundred diapers, and my privacy (since I live alone in a 760 sq.ft. house). The only heavy thing I need to worry about is my garbage, so I'm going to move it over by the back door now and plan on taking more (smaller and much lighter) bags out. Take care and have a good one, y'all :) TinLizzie, DL in WA Jan. 07, 2020

#tinlizziedl

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saferincages · 5 years

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I’m too soft for a world this dark. Sometimes I don’t think that I can handle it.

Art and writing by Emily Bourne.

Chronically comics is centering feelings I’ve been experiencing lately towards my chronic pain illness, Fibromyalgia, and the effects it’s having on my physical plus mental health. My first article, ‘But you don’t look sick?’, was the first time I spoke openly about my condition. While it was a liberating and freeing experience for me, vulnerability is scary. So, here I am doing it again - this time, not hiding or downplaying the bad.

*These drawings were created in October/November time of 2018.

[image description: a girl is mailing a letter saying ‘return to sender: my illness, hell, fck you’ into a post box]

I am in pain every moment of everyday. Some days I’m in more pain. Some days I’m in less pain. But I'm always in pain. So remember that next time you want to dismiss my disability.

[image description: a girl sleeping in bed whilst a ghost is stealing energy from her]

I wake up tired, like a ghost has crawled inside my body overnight and stolen all my energy.

[image description: a drawing of a girl sat on the moon with the text: I’m not me anymore.]

It’s not just the pain in every inch of my body. It’s the disabling fatigue. The brain fog. The hopelessness. The depression. The disappointment. The anger. It’s more than ‘just a bit of muscle pain’. My personality has changed. I don’t see friends as much. I’m me, but less.

[image description: the left side of the page is empty and on the right is the text, ‘I feel like I’m drifting.]

I was sitting in the car, about to make my way to school, when the word ‘drifting’ popped into my head. That’s how this feels: like I’m drifting. My mind is barely here - mind fog is something I experience because of my fibromyalgia. My family knows what it’s like: you can tell me something one moment and it will be forgotten in the next.

[image description: a girl sat on a planet with a black background and to other planets in the the background. ‘When you fall ill you don’t expect that it’s never going to go away’ is written around her.]

I’m learning to cope. I’m learning to grieve. Life is different now.

[image description: a girl with tears streaming from her eyes with a broken heart in front of a dark moon.]

Hope feels like it’s gone. My dreams don’t feel attainable anymore.

* * *

This article will hopefully be informative for people that don’t know much about Fibromyalgia and chronic pain conditions. Below I will leave some useful links:

NHS self help for fibromyalgia

Facebook groups such as Fibromyalgia support, UK Fibro support group and Fibro and invisible illness support group.

Instagram pages for people with chronic pain; drawnpoorlyzine, mychronicpaindiary and sufferingthesilence.

Also I want to say a massive thank you to the people that support me throughout all of the bad stuff. I love you.

Finally I’ll leave you with this quote by Lady GaGa, who also has Fibromyalgia:

“I get so irritated with people who don’t believe fibromyalgia is real. For me, and I think many others, it’s really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result.”

***

“People need to be more compassionate. Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.”

@chronicillnessmemes - I hope it’s okay to tag you in this, I thought it might speak to some of your followers as it did to me.

I saw this posted on Suffering the Silence yesterday and wanted to share it here on Tumblr. It is...very real and so indicative of what many of us with fibromyalgia and other chronic illness/pain conditions go through, often invisibly, as our lives fundamentally change and as we experience repeating cycles of grief. This especially struck me: It’s not just the pain in every inch of my body. It’s the disabling fatigue. The brain fog. The hopelessness. The depression. The disappointment. The anger. ...I’m me, but less. I’ve written many times myself about the feeling of disappearing within my own body, about exhaustion and illness and pain making me a living ghost, and this illustrated that existence and the heaviness which goes with it in a simple yet poignant way. I won’t say it’s comforting whenever I see others articulate this, because I wish no one had to suffer it, but there is a power in the empathy and recognition of not being alone in the midst and difficulty of it.

#chronic illness #chronic pain #fibromyalgia #chronic fatigue #disability #for me this also goes under #cfs m.e.#(and pots and fill-in-the-blank-for-my-other-diagnoses)#spoonie life #the little girl who was always tired #about me #living dead girls club #little girls who wish on stars don't last long on the ground #i think i am a better ghost than i am a human being #i cried when i first read that vogue interview with lady gaga tbqh #long post for ts #this is queued #bubble wrap around my heart

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huphilpuffs · 6 years

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flares

chapter: 21/? summary: Dan’s body has been broken for as long as he can remember, and he’s long since learned to deal with it. Sort of. But when his symptoms force him to leave uni and move into a new flat with a stranger named Phil, he finds that ignoring the pain isn’t the way to make himself happy. word count: 3343 rating: mature warnings: chronic illness, chronic pain, medicine a/n: a huge thanks goes to @obsessivelymoody for beta reading this for me!

Ao3 link || read from beginning

Dan wakes up alone.

His head is squashed into his pillow, mouth hanging open with drool drying at the corner of his lips, hair matted atop his head. His body feels weighed down, heavy on the mattress. The burn in his chest has faded to a simmer that sparks when his ribs expand around an inhale.

The air grates at his throat. So does the groan Dan lets out when it hurts.

He manages to roll onto his back so he can orient himself. Phil’s pillow is still sitting there, bright and blue and such a contrast to the dreary grays covering the rest of Dan’s room. On the nightstand, there’s a bright yellow post-it scribbled with black that Dan’s fairly certain is a note.

A smile tugs at the corner of his mouth.

He shifts towards the edge of the mattress, arms aching in their attempt to move his weight, until he’s sitting in front of Phil’s pillow. It hurts his shoulder, but he leans over and plucks the post-it from its spot. Phil’s messiest handwriting is scrawled across it in black sharpie.

I had to go to work :( I called Taylor to make sure you’re okay so she should be here somewhere. I hope you’re feeling better.

The last few words are tiny, wedged into the corner of the paper. Above that, there’s a smudge of ink that looks almost like it was meant to be a heart.

Dan tries to tell himself it’s nothing, that Phil just pressed the marker to the paper for a moment too long, but his smile still grows wider.

He stares at the note for a really long time.

---

It takes Dan a while to drag himself out of bed.

His legs are still shaky under his weight and there’s a dull ache in the back of his neck that makes it hard to hold his head steady. He finds a pair of pyjama bottoms and struggles to pull them on so that he’s not in just his pants, but his chest still stings when it’s touched.

Besides, Taylor’s seen him shirtless before.

Pressing one hand to the wall for support, he leaves his bedroom, taking slow, steady steps into the lounge. He sees Taylor sitting on the floor between the sofa and the coffee table. Her hair’s thrown back into a high ponytail and she’s hunched over a book he can hardly see, a pen perched in one hand.

She was supposed to be at uni today. Dan swallows against the guilt that comes with the realization.

He manages to stumble halfway to the sofa before she notices him. Her pen clatters against the table as she bounces to her feet, and before he can take another step, she’s dipping under his arm and draping it over her shoulder.

“You could have, I don’t know, called out or something.”

Dan huffs out a laugh. Something twinges in his chest. “I was fine to walk, you know.”

“Phil said you almost fainted.”

“Yesterday. Then I got IV fluids and slept,” he says. They’ve reached the sofa by then, and Dan drops onto the cushions, lets his weight sink into the soft blanket laid over them. “You know my blood pressure does that sometimes, Tay. And then it recovers.”

Taylor shrugs. She drops back onto the floor without a word, and starts fidgeting with her pen. Dan counts how many times she clicks it.

There’s thirteen clicks before she speaks.

“Phil made it sound like you were dying or something,” she says. “I figured it was pretty bad.”

“Oh,” says Dan. “It wasn’t. That bad, I mean.”

He turns his head against the sofa, presses his nose to the blanket Phil got him. When his eyes drift closed, it’s to the image of Phil’s face last night, eyes gleaming with tears, staring at Dan attached a machine by so many wires. It’s to the phantom feeling of Phil’s goodnight kiss dusting across his hair.

“He was worried?” he hears himself ask.

Taylor huffs. “That’s an understatement,” she says. “He didn’t want to leave. I’m pretty sure he was late to work, actually. He just kept going around the house making sure everything was okay. There’s a smoothie for you in the fridge, by the way.”

“He made me a smoothie?”

Taylor hums. There’s a grin drawing at the corners of her mouth, happiness reaching her eyes. She looks good. She looks healthy.

Healthier than she has since Dan’s known her, at least.

Dan smiles back at her. He lets his gaze drift to the textbook that lies open, and it drops.

“More bio?”

“Yeah,” says Taylor. She sets her pen down again, but her head stays dipped towards the book of notes Dan couldn’t even try to understand. “You know how I’m seeing a counselor?”

It’s a whisper, too shy for the girl who would barge into his dorm when he was half-naked to do her homework and keep him company.

Dan forces himself to nod. “Yeah.”

“Well she thinks I should switch courses,” says Taylor. “I don’t know if I’m gonna do it.”

“Oh.” Dan swallows. His chest feels tight again, locked with uncertainty. It shouldn’t be a surprise, he thinks. But Taylor never talked about it, not of her own volition.

Then again, there were a lot of things Taylor didn’t do for herself. Things she couldn’t do for herself.

“I think you should, if it would make you happy,” says Dan.

He might be imagining it, but he thinks he sees her shoulders sag with relief.

---

They sit in silence for most of the day. Morning was already bleeding into afternoon when Dan woke up, and even now, with the day’s brightest sun peaking out from beneath the blanket curtain, he can’t muster energy to do much more than stare vaguely at the TV.

His vision goes out of focus every time there’s a flurry of movement on screen. Dan’s not even sure which movie it is that Taylor put on.

It’s not very good. At least, the bits his brain can pick up on aren’t very good.

He looks away. His neck feels weak and his head bobs a bit when he leans forward, but his gaze settles on Taylor. She’s still sitting on the floor, still reading her biology textbook.

Dan wonders how her brain can possibly be absorbing any of that.

“Taylor?”

She looks up, twisting so she’s facing him. Her eyes look a little hazy, but not nearly as much as they used to. Like maybe the prospect of leaving the sciences behind has reinvigorated her.

Not that the prospect of dropping out had done anything of the sort for–

“Dan?”

He blinks. Taylor’s still staring at him, brows furrowed in concern.

“Geez,” she says. “I thought you were gonna faint on me.”

Dan frowns. “It really wasn’t that bad.”

It’s starting to sound petulant to his own ears, but then his mind flashes back to one of the times he laid in the hospital sobbing as his chest seemed to want to cave in. Lightheadedness, though it makes anxiety curl tight in his gut, is nothing in comparison.

Taylor’s just staring at him now, and Dan wonders when he started feeling the need to explain himself to her.

“Really,” he repeats. There’s a pause as fingers catch at the edge of the blanket and he mumbles: “Did Phil really seem that worried?”

Her eyes go a little somber at that, and her shoulders a little tense. Dan’s hand wraps tighter around the fleece, thumb drifting over tiny furs in the fabric. He reminds himself that Phil bought it for him, tried to make his new home comfortable in the tiny ways he knew how at the time, in all the ways he’s learning to help.

There’s still a smoothie in the fridge for him. One that Phil left there.

“Honestly?” says Taylor, and Dan nods. “I think he was catastrophizing.”

“Oh,” says Dan. His chest feels tight again, because Dan knows what that means. He’s been there. Sometimes, in the darkness of nights where his body aches too much for his mind to drift off to sleep, he still ends up there.

Taylor, he knows, has been there, too.

She shrugs. “I don’t know. He didn’t say it,” she says. “It just kinda seemed like he was scared that if he left you, he would, you know, lose you.”

A lump wells in Dan’s throat. He swallows against it. All he manages in response is another quiet: “Oh.”

Taylor stares at him for a long moment after that, then shrugs one shoulder and turns back to her book.

“I could be wrong,” she says. “I don’t know him all that well.”

Dan shakes his head. He draws the blanket around himself, just a corner of fleece pulled pitifully over his chest because he can’t be bothered to stand and free the fabric from under his weight. Taylor’s not watching to see his eyes slip closed.

She wasn’t there to see the look on Phil’s face when Dan was hooked up to the ECG.

“I think you’re right,” he says.

Taylor drops her pen, turning to look at him again. “You do?”

“Yeah,” says Dan. “I just– There’s one thing that bugged me.”

He doesn’t elaborate. Part of him doesn’t want to, doesn’t want to place Phil anywhere near the doubts that lurk in the back of Dan’s mind. But the memory of the ECG fades into one from before, from back at the flat, Dan’s head still spinning and chest aching and Phil trying to help.

“Well?”

Something’s stinging behind Dan’s eyes, and he hates that he knows exactly why.

“He didn’t wanna go to A&E,” he says. “Like he seemed to get that it was serious, but he wanted to wait and see and I don’t know it just reminded me of–”

He clamps his mouth shut, but Taylor knows. She knows too much, he thinks, about the little things that linger, heavy, on his shoulders, about the memories he can’t entirely erase.

“Your parents?”

It’s a whisper, one they both know is true. Dan nods anyway, guilt twisting painfully in his gut.

She reaches up, rests a hand on his knee. Her eyes have gone soft, her gaze tripping over where Dan’s clutching the blanket too tightly, like a child.

“He’s not like your parents,” says Taylor. “You know that.”

Dan nods, because he does. He knows it so much it hurts, more than the lingering pressure against his ribs and the ache blooming at the back of his head, to doubt it.

Taylor squeezes his knee. “You okay?”

He’s not sure. But then again, Dan’s never sure when people ask him that.

He shrugs, and mumbles: “Yeah.”

---

Dan falls asleep to the sound of a boring film and the turning pages of Taylor’s textbook.

He wakes up to the TV gone silent, different voices drifting past his ears. His mind’s still hazy with fatigue, every thought a little blurry around the edges, mingling with the lingering vividness of some dream about college he doesn’t particularly care about.

He cares about the voices much more.

“Dan and I were talking,” says one. Taylor, he realizes a second later than he probably should. She must not be sitting on the lounge floor anymore because she sounds farther away.

He considers cracking his eyes open to check, but that takes effort.

“He said you didn’t wanna go to A&E,” she continues.

Dan’s stomach twists. If sleep wasn’t still rooted so heavily in his bones he would let them know he’s awake now just so she’d stop talking. In the same brilliance as a dream, Dan can picture Phil fidgeting, reaching up to comb his fringe out of his eyes like he always does.

He wonders if Taylor would notice that, too.

“He said that?” says the other voice, and Dan already knew it would be Phil but something shudders down his spine at the confirmation.

Taylor’s actually telling him about this.

There’s a hum, then silence. Dan wishes he could see. The dread has settled into a morbid curiosity now that he’s a little more awake, a little more aware, so he listens.

“Yeah,” says Phil. “I guess I was a little hesitant.”

“Hesitant?” says Taylor. “Or anxious?”

Dan has to count to keep his breath from catching. Four seconds to inhale and eight to exhale, once, twice, and a third time because his chest feels tight with knowledge he’s not supposed to have.

Knowledge he doesn’t have, he reminds himself. Phil still hasn’t responded.

Dan thinks that might be answer enough.

“I don’t mean to assume,” says Taylor. “I just have a bit of experience with that stuff. You can tell me if I’m wrong.”

There’s more silence. Phil still isn’t saying anything and Dan wonders if he’s staring at Taylor all wide-eyed and nervous like Dan did when she first asked him if he was ill. Or if he’s staring at the table, twisting his hand and letting his fringe cover his eyes the way Dan knows Phil does.

“Does Dan know?”

His breath does catch this time. And then he doesn’t breathe, too scared either of them noticed.

It’s not a yes, but it’s definitely not a denial either.

They must not have. There’s the quiet scratch of the chair against the floor, and a steady tapping Dan thinks must be someone’s foot. One of them, probably Phil, takes a deep breath, and Dan’s reassured enough that he does the same, easing some of the ache burning between his ribs.

“Dan has enough to worry about,” says Phil. “Besides, it’s mostly a resolved issue.”

And that’s it, a confirmation that shudders painfully through Dan’s chest.

“You should tell him,” says Taylor. “He’d want to know.”

Dan swallows. It sounds loud to his own ears, but no one else seems to hear it. His fingers twitch by the blanket still draped over his chest. He wants to pull it even tighter around himself.

He wants to wrap it around Phil and make sure he knows he can tell Dan things, too.

They don’t say another word after that.

Dan counts the seconds ticking by in his head until he thinks it’s been long enough that he can pretend to wake up.

---

Taylor stays for dinner.

Phil orders a pizza that they share as Dan sips at another smoothie. Taylor tells him about possibly changing her course and Phil offers advice far better than Dan could ever come up with. They laugh about how terrible they are at science. Dan joins in on that.

His chest aches afterwards. He’s not entirely sure it’s from the laughter.

When the pizza box is mostly empty and leftovers are being shoved into the fridge, Taylor tells them she should be heading out. She shoves her books into a backpack Dan didn’t realize she’d brought and thanks them for the food and the smile on her face looks real, looks happy.

She hugs Dan goodbye, the distant kind that doesn’t put any pressure against his ribs.

“Feel better,” she says. “And remember that he’s good for you.”

Dan watches her hug Phil afterwards, the tighter kind that has her standing on her toes instead of bending down. She says something against Phil’s shoulder, so quietly Dan can’t make out the words.

“Good luck with school,” Phil says in response.

Taylor laughs as she pulls away. “Thank you,” she says.

She looks like she means it.

Phil might be good for her, too, Dan thinks.

He wonders if either of them are good for Phil.

---

They sit on the sofa again that night.

It’s not even a conscious thing anymore when Dan presses himself against Phil’s side, letting his head drop to rest on Phil’s shoulder. Fingers thread into his hair and rub gentle patterns against his head and Dan stares at the TV screen, at whatever show’s playing now, but his vision can’t focus.

Neither can his brain.

The blanket is draped over both of them now, tucked in against Dan’s side and Phil’s thigh. Beneath it, Dan reaches over to rest his hand on Phil’s knee.

There was a time when that was the only part of Dan that Phil would touch. It seems like so long ago now.

“Can I ask you something?”

Phil looks away from the screen. His eyes look a little hazy. A soft smile curls at the corner of his mouth and makes Dan’s chest go warm.

“Of course,” he says.

Dan squeezes his knee. “How are you?” he says. His voice feels thick in his throat and breaks into a whisper. “I feel like last night was new for you and I just– Yeah. How are you?”

He watches Phil’s brows furrow, feeling something tighten in his stomach at the sight. White tears flash into his mind, a pale face and uncertain frown and Phil’s fingers gripping the hospital bed like he was even more unsteady than Dan had felt.

Dan wonders if his chest had ached, too. If something different had rooted itself between Phil’s ribs that night, took his breath the way pain stole Dan’s.

“I should be asking you that,” says Phil.

His fingers have gone still in Dan’s hair, his smile a little faded.

“I’m used to it, though,” says Dan. “You’re not, right? It was new for you?”

His hand tightens at the back of Dan’s neck. It sends a shot of pain down Dan’s spine, blooming across the back of his head, but he forces himself not to wince. He wants to hear what Phil has to say. He wants to listen, for once.

Phil deserves a friend that will listen,

“Yeah, I guess it was new,” says Phil. “But that doesn’t matter–”

“It matters to me.”

Phil’s eyes go wide and Dan wants to says of course it matters to me, you idiot, you’ve done more for me than anyone ever has, but it feels like too much. It all feels like too much, because Phil’s fingers move in his hair again so he’s cradling the back of Dan’s head.

Dan’s pretty sure he stops breathing.

But Phil just leans in closer and dusts a gentle kiss to Dan’s head.

Again.

He pulls away like it’s nothing, and tugs Dan back against his chest like he belongs there.

It feels like he does.

God, for the first time in so long it feels like he belongs somewhere.

“It was new for me, okay?” says Phil. “And maybe a little scary. Hospitals aren’t exactly my strong suit, and I don’t– It’s scary to see someone you care about attached to machines like that, even if they’re used to it. But I’m fine. I’d go there again tonight if you needed to.”

He sucks in a deep breath when he stops talking. Dan’s pressed so close to him, he can see, can feel the small stutter of his ribs.

“You would?” he asks.

Phil huffs out a laugh that makes no noise, but rumbles through his chest, echoes in Dan’s. “Of course I would,” he says, like it’s obvious.

Maybe it’s supposed to be.

Except no one else has ever been willing to do it before.

“You needed it,” says Phil. “I wanna help you when you need things.”

Dan smiles. His hand is still on Phil’s knee and Phil’s is still in his hair. He watches Phil’s chest rise and fall with a breath and forces himself to mirror it, past the pressure in his chest that burns bright and brilliant and new.

He’s used to a lot of things.

This, Dan realizes, isn’t one of them.

Maybe because, this time, something about it feels good.

He turns his head, hides his face against Phil’s shoulder so he can’t see the TV or the curtains or the silhouette of his hand on Phil’s leg through the blanket they’re sharing.

“I wanna help you when you need things, too,” he mumbles, pressing the words against Phil’s skin.

#phan #phanfic #phanfiction #flares #callie writes words

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mental-mona · 3 years

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On Chronic Illness Part II

(Part I is here.)

I've already explained to you why you really don't want to listen to me complain about my pain as much as I'm hurting. And you know what? There's a very good chance that I don't want to listen to myself complain all the time either. Listing all my ailments can be depressing for me, and even if thinking about everything that's hopelessly wrong with me doesn't send me into a depression spiral, there comes a point where I am literally sick of listening to myself whine because it feels self-pitying. If you ask me how I'm feeling because you want to show that you care but you're not a close enough friend that I can give you the real answer, I really don't want to talk to you. You are stealing my spoons. You're stealing half a spoon or so with any unwanted conversation about my ailments, but especially if it's meant more to satisfy your curiosity or to give you a chance to act like you care even though we're not close enough for me to be comfortable sharing, you're stealing a full spoon. Please quit concern-trolling and ask me about something other than how I'm feeling.

This doesn't mean that I never want to talk about how I'm feeling. If I bring up the subject, please listen. Sometimes I actually need to vent, just to get it all out. You may feel completely disconcerted by the emotions and experiences I'm telling you about and/or be at a loss as to how to respond, and that's ok. Your basic guideline in how to respond to me, whether I'm having an incredibly emotional outburst or refusing to discuss anything related to my ailments, should be very simple: Treat me like a normal human being. I don't want to be pitied, or talked down to, or treated like I'm some kind of fragile object that might break at any moment, or otherwise made to feel any more "different" than my illness demands. Chronic pain is debilitating enough without being made to feel like I'm inferior or "other" because of it.

So how do you accept my illness while still treating me as a human being? For starters, you don't make a big deal out of it if I say that I can't do something one day. No "But you could do it yesterday, I bet you could do it now if you really wanted to!," no "Why do you always seem to be sick?! Are you avoiding me?!" Just because I was having a good day and could do x yesterday doesn't mean that I'm feeling equally well and able to do x today, and I hate having the fact that I'm sick thrown in my face, especially if you're going to make me feel like I'm malingering. I assure you that I'd hang out with you if I could. If I'm having a bad day or suddenly collapse, I'd much rather you respond with "Sorry to hear that you're not feeling well. Let's reschedule for another time. Let me know if you need anything." If I suddenly need to take medication, go lie down, hide from humanity, or otherwise deal with my illness, don't make a big deal out of that either. If I call you in a weird mood or you come over to find me curled up in bed but I still want to socialize, just roll with it.

Speaking of weird moods, if I'm mentally ill I might throw some really disconcerting things at you. This is my messed up brain chemistry and/or ingrained negative thought patterns talking, not my normal mind. Just accept that my sense of worthlessness, catastrophizing, insane urges, giggle fits, crying jags, hallucinations, and whatever other bizarreness I'm throwing at you are uncontrollable, are probably just as disconcerting to me as they are to you, and have to be accepted and sympathized with before they can be combated. For example, if I'm fixating on a bizarre worst case scenario, responses like "That's stupid" or "That could never happen" invalidate my feelings and are completely unhelpful. You want to acknowledge my feeling as valid and then try to help me out of it, e.g. "Wow, that would be really bad if it happened. No wonder you're afraid of it. But I think it's much more likely that x would happen, not [horrible thing]." You can try to talk me out of feeling like a worthless piece of dirt all you want, but you probably won't succeed. Just listen, sympathize as best you can, and leave it to my therapist to sort me out for real.

I mentioned other weird mental illness stuff above, and many of those behaviors/experiences are even more disturbing than catastrophizing. Different behaviors/experiences require different reactions. If I'm having bizarre manic urges, first make sure that I'm safe, then try to be sympathetic even though you can't relate. If I'm having crying jags or giggle fits, try to be a steady rock of calm and just talk me through them. If I'm saying all kinds of inappropriate things, calmly point out the problem and hopefully I'll try to censor myself better. If I still can't seem to censor myself, wait until my mood's a bit more stable to bring up whatever unfortunate things I'm saying. This is a good post about what to do if I'm having a delusion. If I have a suicide plan and not just some suicidal thoughts, or I don't have an exact plan but the desire to die is all-consuming, please get me professional help ASAP. With any expression of mental illness, above all don't tell me that I'm crazy or assume that I'm dangerous; instead acknowledge how scary this must be for me and be supportive.

So far I've discussed how to treat people with chronic mental problems and some dos and don'ts that apply to both mental and physical pain. Here are some more dos and don'ts that apply to both types of pain:

Don't try to tell me things like "Oh, you shouldn't be eating that, it'll make you feel worse!" or "You should get out and exercise!" Odds are that I know or am figuring out what foods trigger my condition, and if I'm not eating healthily enough in general - well, you try fixing 3 completely wholesome meals a day on no energy and in pain. It doesn't work. As for exercise, it may actually exacerbate my condition.

It annoys a lot of us when you say things like "Have you tried x medicine?" or "Maybe acupuncture would work for you? It worked for me when I had [different problem]" or "Could it be that you actually have [other ailment which I just read about]?" Trust me, my doctors and I are working on fixing the problem. We may have tried a number of treatments already, and I may already have tried several alternative treatments. If I'm still in pain, clearly they didn't work, and that in itself is discouraging. You have no medical knowledge or experience with this particular problem, and therefore have no business trying to diagnose and/or treat me. (If you do have experience with my issue, I will probably at least consider what you have to say, but bear in mind that everyone's body is different and I may not in fact have exactly what you have or respond to treatments the way you do.)

Don't say things like "Ah well, that's life" or "This too shall pass" or most of all "But you don't look sick." They're dismissive and trivialize what I'm going through. Instead say things that give me an opening to talk, things like "Wow, that sounds rough. How are you dealing with it?"

Don't pretend that you have all the answers; you'll probably just end up annoying me with platitudes. Be willing to admit your ignorance and help me find an answer.

One huge DO: Help me. If you can, be there to drive me to doctor's appointments, make me dinner, do my grocery shopping, and help me with whatever else I need that I'm currently incapable of managing on my own. I'm not saying that you should do all these things all the time - caregiver burnout, anyone? - but volunteering to take on a chore for me every now and again without acting like a martyr about it goes a long way towards making me feel connected and human again.

As I said, above all I want to be treated like a human being. And in the end, that's what everything boils down to: no judging or guilt-tripping, no trivializing or concern-trolling or treating me as "other," just helpfulness, sympathy, and taking everything in stride as part of a normal human being's responses to hard times.

#chronic illness #chronic pain #chronic condition #text post #long post #explaining chronic illness #how to help #dos and donts #mental illness

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