#my chronic pain and fatigue already makes it hard enough to find energy to do stuff throughout the day

[scootersscooter]

I fucking hate being sickkkkkkkk

[writingquestionsanswered]

Writing with Chronic Illness

strigiformthunderstorm asked: Could you advise on forming a writing routine with a chronic illness? I have several conditions that cause a lot of pain and fatigue, and working part-time takes up nearly all of my energy. I used to write daily but stopped while I was in "survival mode", and now getting in my head about the quality prevents me from writing. I've had success with creating multiple routines to accommodate my fluctuating symptoms, so instead of writing out a schedule, I'm kind of choreographing a dance. For example, right now I'm coming out of a flare up so I'm trying to think of adaptations like writing in bed, taking naps between writing sessions, and being less hard on myself about smoking for my pain while writing + just doing brain dumps if that's what I need to get into the flow of things. I'm also neurodivergent. I'm trying to get to the point I'm actually writing the book (instead of world building/planning) and am making consistent progress.

[Ask edited for length]

A few things that might help:

1 - Don't worry about writing daily or hitting specific word counts. Doing things to "move the needle" are just as important, even if that is doing brain dumps, researching, or looking for inspiration photos.

2 - Try to avoid making writing feel like a stressful activity that your brain will automatically want to avoid. The things you're doing are already on the right track, so continue to give yourself grace, give yourself positive reinforcement for anything that moves the needle, and doing what you can to make writing relaxing and rewarding.

3 - Many writers find that writing sprints are a productive way for them to get words on the page. So, for example, try setting a timer for 10 or 20 minutes (or whatever increment works for you) and write as much as you can during that time. Don't worry about quality (we'll get to that in a minute), just get the words down. Do this a few times a day, and it starts to add up quickly. You may also find that you gather momentum and are able to write more per sprint, sprint for longer periods, and/or include more sprints into your day.

4 - Focusing overly much on quality is probably a bigger obstacle for you right now than anything else. This is by far and away the biggest pitfall writers fall into. Remember: writing is a process that requires editing and revision. No one writes a perfect first draft. There's a reason we call them "rough drafts" and "zero drafts." There's a reason we self-edit and revise. There's a reason we use beta readers, critique partners, and editors. It isn't supposed to be perfect at the beginning. Imagine being a sculptor, taking out a lump of clay, squeezing it to shape it a few times, and then being livid because it isn't a beautiful sculpture. That's what you're doing when you allow your brain to be frustrated about the quality of your writing when you're writing a first draft. You're getting mad because your lump of clay didn't instantly become a beautiful sculpture. If you never let your lump of clay be a lump of clay, and something that looks more like a misshapen whatever rather than the thing you're trying to make, then you'll never get it to the point of actually becoming the beautiful sculpture. You have to let the words on the page be ugly before you can shape them into something beautiful when it's time to edit and revise. Have a look at the following posts for more:

Concentrate on Quantity at First, Not Quality Overcoming Embarrassment Over Own Writing Delaying Writing Out of Fear Worried About Writing Style

5 - As far as routine goes, you're actually already doing what I would have suggested, which is to utilize a variety of different routines that are catered to meet your needs in the moment. Doing the things you're already doing, plus what is mentioned above, will hopefully be enough to get you over this hurdle.

Sending you lots of happy thoughts and hope for progress! ♥

•••••••••••••••••••••••••••••••••

I’ve been writing seriously for over 30 years and love to share what I’ve learned. Have a writing question? My inbox is always open!

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[badaxefamily]

I have a very rare disease, hooray! Under a cut in case I ramble, not for content warning. I won't be talking about anything explicit.

It's official: I have hypophosphatasia, which is a genetic mutation that causes a deficiency of alkaline phosphatase (ALP) which is used for building bones and metabolizing vitamin B6 into energy, among other things.

Ever since I started getting my lab results mailed to me as an adult, I've had low ALP. But most doctors either only know about the more severe infantile form of HPP, or they don't know about it at all. So it's understandable that they always wrote something like "Low ALP isn't a concern", because most doctors only look for high ALP (which indicates liver problems). I'm accustomed to doing research into medical things, but even I didn't have reason to suspect HPP because most of the information (at least in the past) focused on the severe form.

I didn't look hard enough. Childhood-onset HPP is a thing and it isn't fatal, just painful and annoying. And that's what I have. The signs were there as a kid: disliking standing, finding it easier to walk than stand, difficulty with stairs, "growing pains", less energy and muscle strength than my peers. But none severe enough to catch the attention of teachers or pediatricians. In the US you can only get treatment if symptoms presented before 18 (adult-onset is also a thing but the FDA doesn't care about those people*), so when I was gathering data for the endocrinologist I thought back to my childhood for anything out of the ordinary. One memory that stood out to the doctor and my case managers was the time my classmate broke his leg in fourth grade. He had crutches, and - as our rural school somehow managed to be fairly progressive and inclusive in 1993 - he chose to allow the rest of us to try them, so we could have empathy for him. When I tried them, I remember feeling relief. I though this was cool, there was less weight on my legs but I could still move! It did not occur to me that that isn't a normal thing for a ten-year-old to think. I think it was the pharmacy case manager that went "OH" at this memory.

So HPP is at least a major contributor to my ongoing struggles with chronic fatigue and weakness. It may not be the only one, but it needs to be treated even if only to protect my bones as I get older. ALP is needed to metabolize vitamin B6 as well as make bones though, and Strensiq (a lab-created form of ALP) is known to break down B6. It's so good at it in fact that you can't really get a B6 blood test to be accurate if you're on Strensiq, because the drug will keep eating the B6 in the vial! So we're hopeful that Strensiq will make me feel better, even though it's really made with people with soft bones in mind. The fact that I haven't broken a bone going up the stairs like many people do may make it difficult to get Medicare to approve the prescription. Thankfully, not only am I perfectly willing to fight about it, I have a team to fight alongside me. HPP is so rare that the manufacturer and pharmacy for Strensiq have enough resources to assign each patient case managers to assist with everything from insurance to learning about the drug and how to take it (it's a subcutaneous injection), and also there's Soft Bones, the largest patient advocacy group for HPP in the US. I've already touched base with them and they're standing ready to assist if needed.

Also Alexion sent me this frickin adorable kids' book with the information packet:

*Forgot the note I was going to add about this. The reason the FDA doesn't authorize Strensiq for adult-onset is probably because studies didn't show as dramatic an improvement for adults compared to kids. But I think that's stupid. For one thing the disease is rare so studies are always small and there aren't very many of them. For another, of course the improvement in kids is more dramatic, their disease is more severe. Japan is the only country that allows Strensiq for adult-onset, as far as I'm aware.

[sysmedsaresexist]

Why should I bother healing? I mean what awaits past the pain and sorrow? Feeling lightly better? I can just chase dopamine till I'll die and still have a good enough life

I feel like I know who this is, we have an unfinished conversation, don't we?? I still have your last reply and the start of my post in my drafts, waiting for me to find words that would help. If it's not you, I hope that user sees this, as well.

Friendo, don't let your current dumb feelings and silly brain get in your way of your future

Extreme positivity ahead

Fuck around on this post and find out

-the kids these days, probably

On a very serious note, I think we've all been there, where it just feels so goddamn pointless and you're so tired. Trauma survives long after the events that caused it, digging its claws into every aspect of your life-- even the parts that seemed unrelated and safe.

I can't give you the best advice because I don't know your full situation-- age, living arrangements, financial situations, education, all of that changes the conversation, but I'm going to try to give you a general bit of hope

Age and time helps

Even mental illness tends to improve with age.

As you get older, the brain naturally settles into a (generally) calmer, happier state. I promise you, with all the sincerity and genuineness in the world, even if you did nothing, in five years you'll still feel better than you do right now.

Yes, even dissociative disorders. (PDF)

Don't be so hard on yourself.

This won't apply to everyone, obviously there is a problem with mental health in aging populations, but... don't think that's the norm, or something to be expected, and you've already taken the biggest step by noting your mental health struggles early on. One of the biggest reasons that there is a problem in seniors is because there was very little early detection, and talking about mental health was seen as taboo. You're halfway there.

And as you experience more happiness and things just feel calmer, making positive changes becomes easier, especially as more opportunities open to you every year. So.

Looking back, I think my biggest mistake was looking at myself as I was, and looking at where I wanted to be-- or, more often, what I thought everyone else was. Happy, composed, financially successful, intelligent, popular.

And good god, I felt lazy. I wasn't chronically fatigued, I was lazy, I convinced myself.

Eventually, I started looking at smaller parts of my life and tried to make tiny, easy improvements, rather than anything big.

And with each tiny improvement, and with each year, I started to feel like it was worth it. And like I deserved to have a life I was happy with, whether that met anyone else's expectations or not.

Look, I don't know what kind of crack my grandmother was on, but I couldn't keep a house like that. She had six kids and a job back in the 60s, and even at nearing 85 she would still get on her hands and knees and wash the floor. That place was always immaculate.

And that's just unrealistic. And unnecessary.

My mother was the polar opposite, and I grew up in a hoarding situation.

When I finally got out on my own, it took a while to figure it out, but I settled somewhere in the middle. The idea of keeping the house as clean as my grandmother made me want to actually off myself. I am not exaggerating. The idea was daunting and terrified me. I would rather lay down and give up than find the energy.

But the closer I got to my mother's situation, the more I hated myself, because look at how gross I was.

Here's the truth:

Fuck. Everyone.

Seriously. I swear to god, one day, a lightbulb is just going to go off, and you'll realize that you never should have cared in the first place what other people thought or expected.

My home is crowded but cozy. I no longer look around feeling overwhelmed and disgusted with myself. I do what I can and I celebrate every little step.

It's my home and I'm happy with it, and that is the only thing that matters.

Life is like my house. Live it only for yourself, and do what you can. Celebrate all of the things you do, regardless how small.

Even if you did nothing, it's still going to get better.

Imagine how much EXTRA better you can make it if you just take it in tiny, tiny steps.

Like exponential growth of better.

Feeling just slightly better today makes tomorrow feel better, and the day after that, and the day after that.

Plus, think of all the (insert animal you love) that'll you'll see.

[lastoneout]

Seconding the don't do yoga thing, almost every doctor who has seen how hypermobile I am has outright told me to never do yoga. You do not want to increase your flexibility, and yoga is designed for bodies that are healthy and thus it doesn't account for people who are already dangerously flexible, so it's very possible that you will hurt yourself hyperextending your joints which will do far more harm than good in the long run. You really do not want to be hyper extending your joints. (Yes, even as a party trick.)

Something they don't always tell you about EDS/hypermobility spectrum disorder is if you've had it your whole life you probably don't actually know when you're hyperextending because your body is very bad at letting you know what too far is. You don't have pain when you bend like other people would, and your joints will happily go until they can't even if they really shouldn't. I have to adjust almost every stretch I've learned to do because I have to push myself so much farther than the diagrams just to feel the stretch at all, and by then I'm in hyperextension territory. I have knee braces specifically because despite years of trying in PT I was never able to successfully remember where to hold my knees when standing so I wasn't hurting them. The correct position felt really unnatural after decades of hyperextension so to prevent further damage I wear knee braces when I'm going to be standing for a while that make it so I can't hyperextend even if I wanted to. Plus they protect my joints in other ways, they're pretty great. Don't be scared of braces they make some really cool ones and they help a ton.

PT can also absolutely help, but you'll want to try to figure out early on the difference between "I am in pain because I'm exercising my muscles correctly" and "I am in pain because I am hurting my joints and need to stop". The pain should be in your muscles, and it should probably feel like a intense burn. Any pain that feels sharp or stabby or like it's coming from your joints/bones is a sign you're doing something wrong or the exercise isn't good for you, and you should stop so you don't do real damage to your body. And if the burn from the doing it right gets too bad you can also stop, you really don't want to hurt a body that is already very prone to dislocations and injury. Start slow and stop if it's too intense. It's way better to under-exercise and maybe not make as much progress as you could than it is to over-exercise and hurt yourself so bad you have to take days or weeks to recover.

(And, if you do get into physical therapy and your physical therapist doesn't listen when you say something hurts, FIND A NEW ONE. Not every PT is equipped to deal with EDS patients, you really wanna find someone who knows what they're doing and won't disregard your body's pain signals and push you far enough you get hurt. A good PT will immediately adjust the exercise or have you try a new one if the current one is genuinely too hard or hurts, a bad one won't. Don't be afraid to bail on the bad ones.)

Also! Low impact stuff is your friend!! I got told pretty early on in my PT journey to never run, the repeated hard impact with the ground is too much strain on my already flimsy knees and will just do damage. Stuff like exercise bikes(for your legs or your arms), ellipticals, and swimming is way better for you because you are still working out the muscles without your joints taking any stress or impacts. Above all else you need to protect your joints, you do not want osteoarthrits, TRUST ME.

Exercise can be helpful(unless you have long covid/chronic fatigue syndrome for the love of god even if you have EDS do NOT work out with those conditions. If you just have fibromyalgia tho you can exercise but def be mindful of your energy envelope, you can also have crashes with fibro if you push yourself too far, and both fibro and chronic fatigue syndrome are common in people with EDS) but yeah def do your research and make sure to listen to your body. You do not wanna damage your joints any more than they already are, and building up some muscular strength really can help take the strain off your joints and help with pain while preventing too much damage.

(Also don't feel too bad if it doesn't help or only helps a little, PT helps me a lot...but not enough to make me pain free, so if you still end up needing braces or a mobility aid that's okay too. EDS can present in a lot of ways with different intensities, not everything will work for everyone. There's a lot of types of treatment that can be tailored for every individual patient based on their needs, you have options for sure.)

because i’m curious

^ for reference

[bonkie-barnes]

Spoons

natasha romanoff x gn!reader

word count: 2.1k

warnings: chronic illness, mention of medicine, self deprecating thoughts

A/N: this is me 1000% projecting about my guilt that comes with my chronic illnesses. they're kicking my ass rn. this is a vent fic, but if you resonate with this at all, i hope you enjoy :)

- - -

Beep. Beep. Beep.

The alarm clock on Natasha’s bedside table has been going off for a full minute already. You merely roll over and cover your head with Natasha’s pillow. It smells like her.

You have absolutely no energy to get up, let alone reach across the bed to turn the alarm off. Your head feels heavy and your body aches something terrible.

The list of chores you have to do around the house today sits uncomfortably in the back of your mind. The list of friends who have texted you about making plans to hang out sits there too. The idea of staying in bed all day sounds more and more appealing by the second. You know this because the alarm is still blaring into the otherwise peaceful morning air.

Just as you’re gathering the strength to sit up and turn the alarm off, Natasha walks in. She looks at her watch and her brow furrows in confusion.

“What are you doing, sleepyhead?” she asks you with a little smirk. There is concern in her eyes, though she masks it well.

You’re both fully aware the alarm has been going off for seven minutes straight now.

“Just tired, love. You know how much work it takes to reach over,” you say in a joking manner, hopeful that you can get past this without worrying her too much.

Natasha eyes you suspiciously for a second before giving in.

“How was your workout?” you ask her sincerely.

As she starts rambling about her morning activities, you feel a sense of shame. You’ve barely managed to wake up in the time it’s taken her to complete a full workout routine. Hell, you couldn’t even find it in you to turn the alarm off.

You finally focus on her rant as it comes to an end. Natasha is looking at you expectantly. Shit. She’s asked you a question.

“Huh?” you grunt.

She chuckles before answering, “I asked if you were ever going to get up and get in the shower, stinky.”

You put on a fake smile but fail to meet her eyes, the shame eating you up. It has been a few days since your last shower, but it’s just so hard to find the strength and energy to get up and stand in one place for more than a minute or two.

If Natasha notices the far away look in your eyes and the grimace on your mouth, she doesn’t say anything.

After one of the quickest and most unproductive showers you’ve ever taken, you find Natasha waiting for you in the kitchen. She’s taken it upon herself to make breakfast for you both.

You kiss her cheek and thank her as you sit down at the table. The warm cup of coffee she sets down in front of you is a godsend. The warmth emitting from the cup helps to diminish the pain in your knuckles, if only slightly. You send up a silent prayer to whomever might be listening that the caffeine will help with the fatigue today instead of making you sick.

Natasha sits down in the chair next to you with her own plate. She runs her eyes over you in a scrutinizing manner. She wants to think you don’t notice, but you do.

Clearing your throat in hopes to take her focus off you, you ask about her plans for the day.

“Oh, you know, mostly just busy work. I have a ton of paperwork to get through,” she tells you through an exaggerated sigh. “What about you?”

The list of chores screams at you again. “Mostly just some things around the house. Grocery shopping, laundry, boring shit like that.”

Natasha hums around a sip of her coffee. It surprised you just how much cream and sugar she takes in hers. It’s just one of the many unpredictable things about her that made you fall in love.

“Super exciting. I hate to miss out,” she teases you.

You crack a smile to appease her. Inside, though, you realize just how little she understands. These errands seem so simple to her, when to you, they are the most daunting of tasks.

You’re brought out of your thoughts by Natasha standing up to take her plate to the sink. She comes back to kiss your cheek and let you know she’s going to go get ready, before walking out of the room.

You suspect the amount of housework you’ll get done today will be minimal, so you decide to at least make Natasha some lunch. Maybe it will lessen the disappointment she feels when she comes home to see everything exactly as it was when she left, you think.

Your plan is halted as you’re making her sandwich. The stupid cover on the peanut butter jar is stuck. You can’t open it for the life of you. The guilt comes in like a tidal wave. You can’t even do something as simple as make lunch for her, your brain supplies for you.

Natasha returns from getting ready to see you standing in the kitchen with a glare on your tired face.

“What’d the peanut butter do to you this time,” she jokes.

“I can’t.” Tears well up in your eyes.

She comes up to wrap you in a hug from behind. She softly asks, “What can’t you do?”

“I can’t open the jar,” you mutter softly, feeling overwhelmingly embarrassed.

“It’s okay, love. Let me help,” she tells you delicately before kissing the spot under your ear. She can tell this is affecting you more than usual and wishes for nothing more than to be able to take away your distress.

You mutter a thank you before continuing to make her sandwich. You pack everything into a bag and write a small note to finish it off. You know Natasha loves the little messages you leave her periodically, and nothing will stop you from trying to make her as happy as you can.

Goodbyes are said as you both wander closer to the door. Natasha makes sure to hold you longer and tighter than usual. You don’t comment on that.

The silence that encompasses the room as soon as the love of your life leaves is suffocating. You can feel the exhaustion from purely getting up and getting ready creeping up on you. Logically, you know that you shouldn’t overexert yourself, but the shame is eating you up. Already on a roll, might as well keep on going, you think to yourself.

You go back to your mental to-do list and debate what to start with. The grocery store doesn’t sound terrible. Some sun would do you some good. It’s been a few days since you’ve seen the world that exists outside of your house.

Wandering back to the bedroom to get your phone and shoes, you try to push the fatigue from your mind. In your attempt to block out the tiredness, you fail to recognize the ever-present pain in your joints increasing. It’s only when you sit down and bend over to put your shoes on that you register the feeling. Your hips ache severely; so much so, that you can’t hold your position long enough to get your shoe on your foot.

This seems to be the straw that breaks the camel’s back, seeing as you immediately burst into tears. The pain mixed with your inability to do basic, everyday activities completely overwhelms you as you break down.

There’s absolutely no chance that you’re going to complete this task, let alone all the other ones on your list. You let out a sigh as you stand up and shuffle to your room, phone and shoes forgotten in the living room.

You let the weight of your emotions crush you as you climb into bed and under the covers, your wife’s pillow clutched closely to your chest.

Your tears cease to stop, even as you succumb to the sleep you so desperately wished to hold onto this morning.

- - -

Natasha comes home to an eerily silent house. On any typical day, she would come home to the noise of your favorite show or music softly playing, whether it be from a speaker or from your guitar. Your shared house consistently was filled with life and sound. It was one of her favorite parts of her day; coming home to you in your own element, laughing or singing. You are her home.

This newfound silence has her exceptionally worried. Even on your bad days, there was at least a laugh track coming from the TV or the smell of hot chocolate coming from the kitchen. Now, there’s absolutely nothing. For a split second, Natasha thinks that you may never have come back from the grocery. Her heart rate spikes. The sight of your phone on the coffee table and your shoes strewn haphazardly on the floor puts those worries to rest.

“Darling?” she calls from the entryway. There is no response. She carefully removes her boots and coat before moving through every room in the house, calling out for you softly in each.

She makes her way to the bedroom, lightly knocking on the door as she lets herself in. She sees the rise and fall of your chest and is filled with a sense of relief she didn't know she needed.

"Love? Are you awake?"

You grumble out an answer that could be understood as a 'yes'.

Natasha carefully sits down on the side of the bed that you are facing.

"Can you tell me what's going on?" she requests softly, in fear of upsetting the quiet environment of the bedroom and making things worse.

The tears that started up again when you wife called out the first time get even heavier somehow.

"Oh love, come here."

She carefully gathers you in her arms and rests your head on her chest.

"Does this have anything to do with the peanut butter jar this morning?"

You nod. One of your favorite things about your wife is her ability to observe and understand what you're going through.

"I just can't do anything today. Everything hurts and I'm so, so tired," you whisper, followed by a heartbreaking sob.

"It's okay love. Please don't cry," Natasha whispers back.

"But it's not! It's not okay!" You sit up from her chest to let out your rant. "You've done so much today and I could barely wake up. You work so hard and I should be able to do stuff around the house so you can come home and not have to worry about anything," you finish with a sigh.

Your wife puts her hand under your chin, forcing you to look in her direction. "Love, look at me. Believe me when I say that I don't care about the state of the laundry or if the pantry has been stocked. All I care about is you. All I want is for you to be okay. It's killing me that you feel like this and I can't do anything to take it away from you. What I can do, though, is tell you just how proud I am of you. You are the strongest person I know, and I work with the Avengers."

You giggled at that. Natasha smiles at your small second of happiness.

"Are you sure? Because I was going to get so much done today and I was trying to-"

Natasha cuts you off with a soft kiss.

"My love. Listen to me. All I care about is your health and happiness. If staying in bed and catching up on sleep is what you needed today, then that's all I expect from you. I never want you to hurt yourself trying to do more than you can. We all have limits. It’s okay to need a break some days. I love you and I am so very, very proud of you."

With a long look into her eyes, all you find is love and adoration directed towards you. There's no disgust or disappointment as you had anticipated.

"I love you too," you utter quietly.

Natasha smiles and leaves a long kiss on your forehead. "What if we got some pain killers and some food in you? We can even put on your favorite movie. Does that sound good?"

You nod. Natasha gets up to get you some medicine and to order some food, while you get your favorite movie loaded on the TV.

Later that night, when both your stomachs are full and your wife is obnoxiously singing along to the songs in the movie just to make you laugh, you realize just how loved you are.

You don't know how tomorrow will treat you, or the day after that. What you do know, however, is that Natasha will always be there to support and love you. Your pain level and ability to function is always an uncertainty, but your wife's love will never be.

- - -

A/N: as always, i try to keep it gender neutral. if you find a mistake, please let me know! feedback is appreciated! to all my chronic illness buddies out there: i love you, you've got this :)

taglist: @007giu

[thebibliosphere]

ADHD reward system? Please tell me your secret!

My therapist has been helping me find a reward system that works for me, and as it turns out, gold star stickers are really helpful for making me feel like a tangible goal was met, and helps give me that sweet, sweet dopamine release that comes with completing a task, something which us ADHD’ers really struggle to achieve and are already coming at from a disadvantage with our brains regularly not producing enough “happy” hormones as it is.

It was supposed to be “a sticker for every time you finish a chapter”, but after some revision, my therapist said that was too tall of a goal, and that I should pick something smaller. So instead I now get a star every time I finish a 500-word milestone, placing the sticker in my writing calendar/journal thing that I use to keep track of my writing, and ironically, I have started to produce more work than when I was stiving for one chapter a day.

To give you an idea of how staggeringly effective this has been for me, I’ve written over 30k of original fiction in the last week. (75k total if you include my social media and blog stuff, which I currently do not but likely should.)

So this is what it looked like when I was attempting to do a chapter of edits and revisions a day during the month of December 2019 (note: I was supposed to start this in Nov, so you can see how well that worked out for me lol):

ID: A calendar showing days of the month with a shiny star sticker showing a completed task.

And this is what my writing journal looks like now that I’m doing a star for every 500 words:

ID: an image of a handwritten journal with the dates mapped out, followed by a shiny star sticker for every completed 500-word milestone. There are 65 stars in total for the month of January 2020. It’s also tinged by a green light cause I’m doing a chronic pain experiment, so far with positive results!

So as of today, January 8th, with ever star = 500 words, then 65*500 = 32500 words totalled in 7 days. This does not include, like I said, my social media output where I am far more productive, this is just my fiction and some editing work for friends.

(Which side note: this is not to flex, or to say that others should be able to achieve this level of output. I am a professional writer, this is my main job and only source of income. And also, I was forged in the fires of understaffed editing hell where we would be expected to churn out 100k+ a week in edits and revisions to keep on track. I have the time and a learned skillset I have spent years amassing to be able to do this and am working towards a rigid deadline. I simply have not been healthy enough in a long time to manage it, and am finally working my way back up to speed after years of illness. Don’t look at this and think, “I’m not achieving enough”, every victory no matter how small is worth celebrating. And I say that with the utmost sincerity, as someone who spent most of the last 2-3 years unable to get out of bed.)

I’ve also started using it to help keep track of bills and chores around the home. So every time something gets done/done on time, whoever completed the task gets a star on the calendar. This includes Oppy the Not-A-Roomba, who does a very good job of taking care of the house on a daily basis:

ID: an image of a chore calendar denoting various tasks that have been marked off with a holographic silver star sticker, including our robot vacuum who does an excellent job and deserves all the stars. (Our names got blurred out cause ETD doesn’t want his real name out there in the world, so that’s what is blurry.)

This system is useful for several reasons, the primary one being a sense of achievement and continued motivation, and the second, to allow you to review each month to see where you are doing well, and where you might otherwise be struggling.

For example, if I have a bad day for writing or decide to take a day off, I write that down in the calendar rather than leaving it blank, so that I have a record of what went wrong (or right, if I am electing to self care that day and take a day off) and how my overall progress is doing.

In terms of house stuff, this has been especially useful for ETD and myself, as it shows us where we are managing to do a good job with the house, and where our executive dysnfunction issues really trip us up and where we need to make improvements. And I don’t just mean in an “I should try harder way”, I mean you have to actively sit down and be like “hey! What is preventing me from completing this thing” and trying to figure out effective ways to either get around it or resolve a larger issue at hand.

So for us, the biggest thing we tend to miss is doing dishes after dinner, meaning we get left with a pile-up of dishes to deal with first thing in the morning, and my ADHD can’t handle that. It won’t let me eat until I’ve cleared all the mess, but I usually don’t have the energy to clean up if I haven’t eaten, so it’s this awful cycle of ineptitude. We’re doing better with the star reward system, cause it’s showing us our progress loud and clear on the fridge door, but we are both usually so fatigued and exhausted by the end of dinner that doing dishes is just one thing too many for our mutual disorders. So, the solution for this would, of course, be a dishwasher, cause if we had one of those, we could load stuff in, turn it on, and let those dishes get done while we go to bed then put them away in the morning. We can’t afford to do that right now, and we have other appliances we need to buy/replace before we can do that (still don’t have a tumble dryer, or a washer I can access, rip) but it does give us a tangible goal to work toward, and also, the motivation to keep on top of things because it goes from “an endless task with no end in sight” to “there’s a solution for this, we can manage a while longer.”

Now you could be saying, but Joy, I’m an adult! Surely I shouldn’t expect rewards for completing every day tasks that I should be able to do?!

To which I say, neurotypical people get rewards all the time and get an unconscious dose of dopamine/serotonin from their brains every time they complete a task. They’re playing the game of life on easy mode, the gold star is your achievement for completing it daily on Nintendo 99 hard mode. IF THE STICKER WORKS, TAKE THE STICKER

YOU’VE EARNED IT.

[melisssg99]

TW. Personal Rant

About chronic pain/illness/fatigue and financial fears.

I've had Covid-19 at around the end of last year.

I already had trouble with fatigue because of my fibromyalgia.

Now my body is just like "F U, you want to function like a normal woman in her 20's?? Haha thats a good joke! Now go to bed and stay their for the next week!"

I would love to have energy after I come home from work again. My body wasn't messed up enough. Covid really had to upgrade my chronic illness.

I can't help but fear the future. What will I do!

I can't work a full week, I wouldn't be able to function properly.

Even though I have medicine that helps with the pain I do still get fatigue and after covid it's ten times worse.

I won't be able to work. Therefore I won't make a lot of money. How will I ever be able to live on my own or take care of myself?

I'll have to hope that I find a partner who understands my struggle and will accept me for who I am and not see me as a burden? Like that's possible...?!?!

I'm usually a lot more cheerful but these days it's been quite hard.

And yet at the same time I feel like shouldn't complain. I should just do the work and give everyone my all until there's nothing left of me.

I don't deserve help until its too late.

I don't want to see my doctor or ask for financial help because that's me giving up.

I'll officially be a burden and admit that I'm not helping society or the economy.

Yes, I'm aware I shouldn't think like this and money isn't everything. But I do sure feel hopeless and worthless right now.

[thatdiabolicalfeminist]

I suspect I have ME/CFS but I'm not clinically diagnosed, and idk how I would even get diagnosed, but do you have any tips for beds or comfort? Do you have any comfort tips for someone who doesn't want to be in bed but fatigues early/easily?

So it's actually pretty important to figure out whether what you're ill with is actually ME/CFS or an illness with similar symptoms. Things that are good for ME patients can make people with similar chronic illnesses worse, and vice versa, and if you have something different to ME (or in addition to it) it may require medical treatment, either to make you feel better or to stop or slow serious damage.

If you have access to a rheumatologist, they should be able to run tests that can rule out lupus and rheumatoid arthritis, and they may be able to evaluate you for fibromyalgia as well. They'd likely run panels to check your blood counts and rule out vitamin deficiencies that can cause things from fatigue to neurological damage.

These are good things to do even if you're 100% sure you have M.E., because some of this stuff is commonly comorbid. (Oh, and if you have M.E. you might wanna get checked out for the most common comorbidities, like POTS or fibro or hEDS or IBS, to see if you can limit the strain your body's experiencing. Treat any comorbid migraines, etc.)

Check out the international consensus criteria to verify for yourself if you have M.E. Your GP may be willing to diagnose you if that's something you need or want to pursue - my original diagnosis was from a family doctor. A rheumatologist is better though, because they'll understand autoimmune stuff and know what to rule out. My rheumatologist caught ME symptoms I hadn't even noticed before.

In general though, being an ME patient means doing a lot of your own research. Doctors frequently know very little and only some are willing to read up on it. Don't let anyone try to sell you on graded exercise therapy - research shows it makes ME patients sicker, but some doctors recommend it anyway since it's good for many illnesses with similar symptoms.

As for what you actually asked about -

I think what you need/want as far as comfortable beds etc is going to be very specific to your particular body.

My main advice is to pay attention and not let yourself dissociate from your body.

People with chronic pain and fatigue often ignore our own bodies most of the time to avoid feeling that pain and fatigue so much, and it means we can have a hard time knowing what helps or hurts.

Experiment and be deliberate about noticing what feels restful and what doesn't.

In bed, you might find that you want extra pillows to support different parts of your body - a knee pillow makes a huge difference for me, and a body pillow under the edge of my back when I lie on my side.

Outside of bed, sit often and sit comfortably. As much as possible. I have found that it's WAY more draining to let my legs dangle down than to pull them up and cross them, so I sit cross legged a lot. I also have a day bed in the dining area so I can lie down when I get tired without missing out on socializing, or without leaving the room when I'm cooking. I've found that a chair with a back is less tiring than a chair without one. I also have a wheeled stool in the kitchen so I can cook sitting down and move around the kitchen without walking. It’s a lifesaver.

If you're not already using a mobility aid, consider getting one. I tire way, way less quickly with my rollator than I do with my cane, and I tire way less quickly with the cane than I do walking unsupported. (Also, some rollators and even some canes have convenient sitting when you're out and about!)

A cheap hand-propelled wheelchair doesn't save me energy unless someone else can push, but fancier ones are much easier to move, and motorized ones are least draining of all.

But honestly a $10 cane can be a lifesaver all on its own, even if you only use it on big fatigue days or when no one else is around.

Pay attention to whether light or sound tires you out, and if it does, try to reduce light and sound in the area where you rest. Same with other sensory input that can be quietly fatiguing. You may want to limit this input even outside of rest, so you don't wear out as fast. Lastly, if you're pretty sure you do have M.E., read up on pacing. My rheumatologist gave me this very easy to understand, nicely packaged guide to pacing, complete with charts to help you keep track of your activity patterns and explanations for friends and family so they can understand enough to be supportive.

Pacing is the number one best thing you can do to protect your health if you have M.E. The less often you go into post exertional malaise, the more ability you will retain.

Sorry this is so long but I hope it helps!

[literaila]

this little secret of mine

spencer reid x reader

request: Can I request a fic Reid x Reader where the reader has a chronic illness (Im having a flare up an I'm emotional, and having surgery Friday lol) and just kinda anything you feel around that, that the first conversation about it, insecurity whatever you feel, I love angst as well so feel free to load it with that x 

a/n: i’m so sorry if there is any incorrect information. i tried to do my very best with research, but i will admit it might not be as accurate as it seems. if theres anything that needs to be changed just let me know.

warning: mentions of blood, needles, fainting, chronic pain, drugs, shit writing, a little angsty, and fighting

It was supposed to be a secret. 

She hadn't mentioned anything during her interview. 

And she still hadn't. 

Because it was meant to be a secret, one that none of them had to find out about. It was just supposed to be a secret. 

But when everything in your body was aching with every breath, with every blink you made, when you felt like you were on fire at just the thought of standing up, of just getting up, when that was happening, secrets were hard to keep. 

That didn't mean Y/N said anything. 

She felt extremely exhausted. Like fatigue was a stalker following her, refusing to leave her side at any given moment. 

There was no prison you could lock fatigue in. 

Sometimes, she could barely keep her eyes open, could barely think enough to remember to breathe. Sometimes, it was too much. 

She never said anything. 

But there were signs, little things she always did when it was worse when the pain was so unbelievably intense, there were little things she just couldn't keep hidden. 

Like the headaches, the constant medication she was taking for them, the moments where she felt like her head was going to break open because of the stabbing pain hidden behind her eyes. There was the slow way she always got up, the wince on her face when she moved, the slow and deliberate movements she couldn't go without. There was the pain that seemed to last for hours after she simply knocked her knee against her desk. 

And those were just the things she couldn't keep a secret. The signs that didn't go unnoticed. 

Everyone else always seemed to notice. 

There were constant questions of “are you okay?” that came her way and made her wonder if one of them knew if one of them had finally found out, the constant questions that always turned out to be false alarms. 

Sometimes one of them looked at her weird, sometimes she noticed the extra confusion in their gazes when they watched her stand up, or noticed her taking pain medication for the third time that day. 

She was very fortunate all of them seemed to understand that she didn't want to talk about it. She was very lucky that she had such great friends. 

She was very lucky no one knew. 

No one knew. 

It was only getting harder. 

As Y/N felt her joints getting stiffer, felt her headaches become longer, felt the fatigue weighing her down, as she felt her body start to collapse under itself, she knew that the secret would have to end. 

But she didn't want it to. It wasn't fair that she couldn't have this one thing, that she had to deal with this every day. 

It wasn't fair. 

It wasn't fair that she had to hide behind a brave face. 

It wasn't fair that she had to cancel. 

She had to cancel. 

It had been two years. Two insane years of no one knowing, of no one saying anything about the pain that rattled her body, it had been two years with the team, two years getting to know them, two years and she had gotten so close to all of them. 

It had been two years with Spencer. 

They were having their first date. 

They were having their first date.

He had asked her out on a date. 

After two years. Two years of looking across the room for him, of wrapping her arms around his neck when he was sitting at his desk, two years of being surprised by every magic trick he’d pulled out to impress her, two years of getting him coffee and a sweet, two years of sitting next to him on the plane so she could stare at him longer, two years of staring at him hopelessly. 

She’d been in love with him, and his caring way of looking at things, and the knowledge he kept stored up in his brain. She’d been in love with him so for long it felt like a lifetime. But never had she expected him to ask her out on a date, she figured if ever, she would break and ask him. 

But she hadn't. 

And he had.

It had been two years. 

And he’d asked her out on a date. 

“According to relationship experts, you should wait two months before asking someone out,” Spencer said. 

They were sitting in a tiny cafe, both enjoying a cup of coffee. It was their day off, and like most days off, they were spending it together. They’d developed a habit of driving around and going to new places together. 

Y/N was sipping on her coffee thinking about where to go next when Spencer suddenly spoke up. She looked up at him confused. “What?” she asked, her eyes wide, her cup of coffee stilled her in her hand as she waited for him to continue, as he usually did. 

“No- I mean- It's socially acceptable to broach the subject of dating after two months, but actually in most cases, it happens sooner… it really depends on how much time you spend with that person and-” he stopped, pausing his hands that had been gesturing in front of him as he stared at Y/N. 

“What?” she repeated. Spencer stayed silent, his eyes were darting around the room, and he seemed to be lost in thought. After a few moments, Y/N tried again. “Spencer? Why’d you bring this up?” 

Spencer shook his head and looked back into her eyes, seeming to be pulled out of his gaze at her words. 

“I think I waited too long,” he said. 

“Too long for what?” Y/N asked, still not getting the point. 

“To ask you out.” Y/N’s heart jumped at the words, her body exploding at the surprise she felt surge through her. “We spend almost every day together. And it's been two years.” Spencer continued a small smile on his face at the memory. 

Y/N sat there, her coffee still in her hand, staring at him. 

“I’m hoping it's not too late?” Spencer asked, still looking at her with now bright eyes. 

Y/N just stared at him. 

He frowned. 

And she laughed. 

She laughed at him and nodded her head, bringing her coffee up to her lips. 

And he smiled. 

“You’ll go out with me?” he asked, his eyes bright again, dimples popping up on his cheeks. 

And she nodded again. 

And now she was stuck in a daze. Her pain was chipping at her, keeping her from getting off the couch, she barely had the energy to breathe, barely had the energy to do anything except stare at her ceiling. 

She wished it would go away. 

She didn't want to tell him. She didn't want him to know, she didn't want his pity, didn't want to have the conversation, she didn't want any of it. 

She was going to have to cancel. 

She couldn't force herself to get up, which meant it would be impossible for her to get ready, impossible to sit in a restaurant and pretend to smile and pretend that just picking up her fork didn't make her want to scream out in agony. 

She hated this. She hated all of it. 

She felt like crying, like curling up and sobbing until she couldn't hear anything else except for the silence in her mind. She felt like spilling some tears for the miserable state she was in, but she didn't think she could move, she didn't think she had the energy to even close her eyes. 

She had to call him. 

She had to call and tell him, tell him that she couldn't go, that she was sick, that she thought it was the flu, that she had to cancel on their first date, that she couldn't go. 

She wanted to scream. 

It took multiple moments of deep breaths, of reminding herself she could do this, it took extra motivation to grab her phone on the coffee table next to her. She felt useless, felt like she was some fragile thing that wasn't to be bothered with. 

She wanted to text him. Wanted to avoid the sound of his voice, the disappointment she could already hear, she wanted to just get the words out and not have to talk to him. 

She didn't think she could move her fingers enough to text him. 

Her phone rang, and she waited for him to answer. 

The phone clicked and she heard a quiet “Helloo?”

If she didn't feel like she was going to pass out she would’ve laughed. 

“Spencer?” she said, quiet and slow. She felt already out of breath at just the one word. 

“Y/N? Is there something wrong?” 

And at that moment she wanted to tell him, she wanted him to come over and hold her close and cuddle her until she could finally fall asleep. She wanted him to be with her, and she wanted to listen to his voice, and she just wanted to feel better. 

She swallowed and then began to explain. “I don't think I can come… tonight.” Her jaw felt tight at the words, and no matter how hard she was trying she couldn't relax her face. 

“Oh.” 

Just one word. Just enough to make her feel horrible. 

She took a deep breath and urged herself to continue. “I.. don't feel... So good.” 

Just speaking was exhausting her, just breathing was causing her chest to tighten up, she hoped she would fall asleep soon. 

“Are you alright? What's going on?” he asked urgently, and Y/N could hear him stop whatever he was doing in the background. 

What was going on? What could she say to him? 

“I…” she gasped in the air that was pushing on her chest “caught something.” 

Spencer didn't say anything so she continued, “I’m sorry… Spencer.” 

And that was all she could say. Exhaustion took over, and she didn't hear anything else before she closed her eyes. 

At least asleep she wouldn't feel guilty. 

She was still sleeping when Spencer walked into her apartment. 

She hadn't heard him knocking on the door, too deep in her exhaustion to notice anything. 

And Spencer was worried. He was always worried about her, worried she would get hurt, get herself hurt, was always worried that something would happen to her, to the girl he loved. But it was different this time, she hadn't even stayed on the phone long enough to tell him what had happened. 

He couldn't just leave it at that. 

He had to make sure that she was alright, that nothing bad had happened in the time between the silence over the phone and Spencer showing up at her apartment. 

He had knocked, knocked, and called her name, but when she hadn't answered he felt himself become more worried, even sick Y/N could’ve called out to him. So he used the key she’d given him, telling him that someday he might need it, and he walked into her apartment. 

What he hadn't expected was to see her sleeping on the couch, find, but pale with dark circles under her eyes. 

She looked especially drained. 

A tiny part of him was glad that she wasn't just trying to get out of their date, that she didn't just not want to go, but the other part of him was still immensely worried, and his brain immediately started racking up the things that she could be sick with. 

He let her sleep some more. Listening to her labored breathing, watching her chest rise and fall as he thought of which viruses were going around. 

She had sounded terrible on the phone. 

He walked around her small apartment for a little while, thinking about her, worrying about her, just waiting for her to wake up. 

Eventually, he got impatient. She seemed to be getting more restless with every minute that went by, and Spencer couldn't stand the frown on her face, so he gently shook her awake. 

She opened her eyes and immediately closed in on herself. 

Her body was fighting, attacking itself, the different nerves were running all around reminding her of all the pain she was feeling, she was in so much pain. She curled into herself, the pain enclosing on her chest and her back. She was frozen trying to hold herself together. 

Spencer moved away, worried that he had hurt her. 

She was gasping, out of breath now, and Spencer was standing there watching her. She hadn't even noticed him. 

Sleep hadn't helped her, the fatigue still hadn't left her alone, and now her body was on fire as if it was fighting a war against itself. She didn't have anything she could do, there was no medication she had that was strong enough to fight against pain like this. Emotions were clouding her head, and she begged them to go away, she didn't have the energy to fight them off. She could barely move. 

And Spencer was standing next to her shocked, worried, and very confused at the girl in front of him. This seemed way more intense than a virus. 

“Y/N?” he asked softly, bending down on his knees so he was closer to her face. 

And she noticed him. And the pain was collapsing her. 

What would she say what would she say- 

She just wanted to keep her secret. 

She wanted the one secret she had. 

She gasped out. 

Why couldn't she just control this?

“Y/N? What's wrong? What hurts?” Spencer asked, quietly as not to disturb her, but she could hear the concern in his voice, could feel the questions he wanted to ask, could feel buckets of worry pouring out of him. 

The pain was insistent. 

She tried to breathe again, reminded herself of her grounding techniques, of the coping skills she had learned after years of pain. She took deep breaths and tried to remind herself that she was in control of how she reacted. 

It was working. 

Just a little bit. 

She finally had the energy to move from her position, tilting her head so she could look at Spencer, so she could beg for another minute, just one more minute to get herself together. 

She hoped he understood. 

She kept breathing. 

And finally, she could listen. 

“Are you okay?” Spencer asked, his eyes were less worried now, but Y/N knew he wouldn't leave without an answer, a complete answer. 

The secret was out. 

Y/N shook her head. She just shook her head, and she felt so tired, and she could still feel her body stinging as if it was being pricked at, and her head was aching, and her eyes were drooping, and she was so tired. 

All she wanted was to feel good. 

Why couldn't she feel good? 

“What's going on Y/N? This isn't a virus.” He said patiently as he could see the pain on her face. He didn't want to rush her, he didn't want her to be anymore strained than she already looked. But she seemed so sick. He had to do something. 

She just shook her head, squeezing her eyes tight at the pain that came with it. Spencer looked at her and frowned, she clenched her fists together in an effort to try to keep the pain at bay. 

“Okay...okay…” Spencer said, and he went to lift her so that she wouldn't have to move, he picked her up and sat down on the couch with her, he sat down with Y/N who looked so much like glass at that moment Spencer was afraid to hurt her. 

Luckily enough, him moving her hadn't sent another rage-induced war over her body, and she felt herself relax into his shoulder, felt comforted by the warm feel of his body, by the hand rubbing her back, by the smell that was so familiar. 

“Are you ready to talk yet?” Spencer asked. 

Y/N kept her eyes shut, trying to avoid making her headache any worse, but she could still tell that Spencer was frowning again, and while all she wanted to do was relax, she knew that she owed him some sort of explanation. 

“I-” she gasped at the pain that was stuck in her chest, she hadn't expected talking to make her heart start burning. Spencer quickly brought his hand to her cheek, moving her head so she would look at him, so he could make sure she was still okay. She opened her eyes to look at him and the words got caught in her throat. How much more pain could she endure before it was too much? 

“I’m just-” this time it wasn't the pain that stopped her, it was the confession she was about to make. The secret she was going to tell him. “I can't-” 

Spencer rubbed his thumb over her cheek, waiting for her to continue, but when he saw her eyes again he could tell that she couldn't go on, he could see the wall stopping her from saying what she had to say. 

“Y/N. It's okay. It’ll be alright.” he reassured, hoping they were the right words to say. 

“I can't,” she said again, desperate this time. 

“I can tell you in pain…I can see it in your eyes. Nothing bad is going to happen. I only want to help. It's okay Y/N.” 

And then she took a deep breath. 

And she told him. 

***

It was worse this time. 

And better. 

And worse. 

This time, at least Spencer knew what was going on, at least he understood to the extent he could, at least he knew her breaking points. 

But it was worse. It was so much worse. 

She’d been working, working a lot, working a lot more than she ever had before, she’d been working and working hard. It was too much. 

The pain was too much. 

She’d been overdoing it. It was something she’d always tried to avoid, always tried to keep away from her. She’d been warned about it when the pain had started, warned that while some working was okay, even good for her, that too much working could cause more pain, even more, intense pain. 

She’d been warned. 

She hadn't listened though. 

She seemed to be wrapped up in her job, in the hours that she spent saving other people's lives, she seemed to be wrapped up in it all. 

And she was always with Spencer when she wasn't working. She was always enjoying her time with her boyfriend, she was never sleeping when she was with him. 

She’d been over-doing it. 

But she couldn't stop, she couldn't just give it up now, she couldn't just avoid the work because she didn't feel good. She was going to have to deal with the repercussions that came with the decisions she had made. 

She didn't have a choice. 

She never had a choice. 

This was so much worse. 

And it was technically still a secret. 

Even though Spencer had found out two months ago when she’d had a bad flare up and had no other way to explain to him but the truth, the rest of the team hadn't. Y/N had made Spencer promise that he wouldn't say anything to anyone. She didn't want Hotch to find out, she didn't want him to make changes to her job, to keep her behind because of the illness holding her back. She didn't want that. And she didn't want the pity, and the babying that would happen if the others knew. 

It was bad enough that her boyfriend knew. 

He was especially protective of her now. 

No one else knew. 

And that was good, it kept her from worrying too much about it, helped her keep up the distraction of work without one of her teammates asking if she was okay, it helped her stay on topic rather than focusing on the pain. It was a good secret. It was one she wanted to keep as long as she possibly could. 

But it was getting worse. 

It was almost too much. 

Needles were pricking at her joints, pulling at her joints, keeping her tied down wherever she was sitting, they were keeping her still at any given moment. Her back was burning and sore, and she could do anything about it because if she moved every bone in her body would sting with the burn of needles. Her headache had become a constant in her day, and the pain medication she always kept with her had been getting emptier with every day that passed. 

She’d noticed the looks Spencer had been giving her, noticed the furrow in his brows every time she offered to do anything that didn't involve sitting. She ignored them, focused on the job she had committed to.

Every once and a while, Spencer tried to pull her away, tried to get her to settle down, and just talk to him, and every time he tried to do it, every time he looked like he was about to say something to her, she was busy. 

She managed to be busy. 

And now she had to go save a life. 

James Thomas was murdering couples, he was murdering people and the team had to stop him. There was no time for pain. 

Emily had to go in as bait, it was clear from the moment they got there and James was sitting silently at the bar. Emily needed to be a distraction, to lure him away from all those innocent people around him. 

Y/N was covering her. 

She watched with her gun in her pocket on the other side of the bar as Emily approached him, she noticed the slight change in her body language, the flirty smile she had put on, she wasn't worried about Emily. Her friend was smart enough to know what she was doing. 

And Y/N was smart enough to ignore the pain in her hands and her back, she was smart enough to pretend it wasn't there. 

She watched as James looked over at Emily curiously, as he looked her up and down, she watched as Emily moved closer to him, leaning in so close Y/N wondered if she was going to kiss him. She watched as James got more interested in the conversation. 

She looked over to Hotch and saw him nod at her. It was fine, everything was fine, they just had to wait a little bit longer. 

Just a little bit longer. 

Y/N kept her eyes on Emily as James turned completely toward her, she kept her hand on her gun and her other on the drink she didn't care about. She watched as Emily suddenly lost her smile, as she shrunk back only a little, she looked over to Hotch and he gave her the okay. 

It was time to get him out of there. 

She saw him reach into his jacket for something. 

She saw Emily tense her hand. 

And there was a gunshot. 

It surprised Y/N at first, but when she opened her eyes she saw Emily standing up straight staring at James, and she saw James down on the floor, covered in blood. 

She rushed over to them, she quickly patted down James, grabbing the gun from his coat pocket and giving it to the police officer behind her. She patted down the rest of his body, making her he didn't have any more weapons, and she helped him stand up, taking most of his weight in her arms as he couldn't stand with the bullet wound in his chest. 

She looked up at Emily to make sure she was okay. Emily nodded at her, and she walked out with James. 

And then it was silent. And then she could feel the seconds passing by, could feel the messages her nerves were sending to her brain, could feel everything happening inside her body, she could feel everything. 

There was so much pain, there was so much pain, there was so so so so much pain. 

She was being stabbed, over and over, relentlessly, everywhere on her body, she was being stabbed over and over and over, and she couldn't breathe, couldn't understand what was happening because it wasn't supposed to hurt this much, it was never supposed to hurt this much. 

It had never hurt this much. 

She could feel her body freeze and could feel herself take one more step, one more step out the door, just barely out of the building, before she collapsed, dropping James with her and swaying toward the ground. 

She was supposed to have control, it was never supposed to hurt this much, it was never ever supposed to be like this- 

And she could feel herself moan as she hit the ground, could feel her joints scream at the pain of being moved so much, she could feel the blood rushing to her head, and could feel her back still on fire like it had been for the past week. 

She still didn't know why it hurt so much. 

She’d never had a flare-up this bad. 

She wasn't supposed to fall because of the pain. 

It was supposed to be manageable. 

She didn't realize she had screamed until she felt hands on her until someone was shaking her and trying to get her to stand up, she didn't understand. 

She felt someone pick her up. 

And then it was too much, it was finally too much, too much for her mind, for her body, too much everything. 

It was too much. 

And she fainted. 

She woke up in an office. 

It was void of people and smelled distinctly like men's cologne. 

She tried to move her head but the pain was blinding. 

She heard a voice next to her. 

“You’re up,” Spencer said as he closed the door to the office, holding a bottle of water and a bottle of pain meds. 

She looked at him thankfully. 

And then she stretched her jaw so it wasn't as stiff, and asked him why she was there. 

He explained how she had passed out at the scene. He told her how he’d made sure to take her back somewhere she could rest, instead of taking her to the hospital as the rest of the team was insisting. He told her that he hadn't told them anything, just that he needed to make sure she was okay.

He handed her the bottle of water with a frown on his face, while she sipped the water, he opened the bottle of meds and pulled out two pills and handed them to her. 

She smiled at him with her mouth closed, as he watched her take them. 

It was silent for a moment after that before either of them spoke. 

“Spencer-” 

“I don't want you doing that again,” he said firmly. His voice was like stone and his face was unwavering. 

Y/N looked at him shocked. He’d never looked so harsh before, at least not with her, she was surprised by his reaction, but she was even more surprised that when she looked over to the clock it said she had slept for six hours. 

Six hours. 

That explained the bad taste in her mouth. 

“Spencer I don't think that's fair-” she started to say before Spencer interrupted. 

“No Y/N. I won't let you do that to yourself, I don't want you in pain every day.” 

Something about his tone was making her angry. 

“Spencer it was just a flare-up, they happen sometimes. I can't control them,” she said, and now her eyes were hard and staring at him. 

He didn't understand. He could research it for hours, could learn every piece of information there was out there. But he would never know. He would never understand the pain, the strength it took to deal with pain like that every day. He wouldn't understand the sacrifices she had to make sometimes. He just didn't understand. 

“Y/N, this wasn't random. You’ve been working yourself down to the bone. You haven't stopped working in weeks. And it's wearing you down, I can practically see you deteriorating.” His voice got louder with every word that he spoke. 

“Spencer this is my job. I’m not going to stop just because of a little pain.” She said shaking her head, staring at her, her face not breaking. 

Spencer sighed and moved away from the couch she had slept on. He just wanted her to understand, wanted her to see that if the positions were switched she would be insisting he took it easy too. It hurt him to see her in pain, to see her falling apart every time she moved. Why couldn't she understand that? 

“Y/N, it's not a little pain,” he said pacing around the room, no longer looking at her. “I can tell how much it hurts you. I can't imagine how hard it was for you to be out on the scene today.” 

Y/N could feel the concern, the worry, radiating from his body. She could see that he was fighting with himself, trying to figure out something to say. But she wasn't going to budge on this. 

“Spencer, this is my job. This is who I am.” She said every word clearly, but her body was shaking, and her head was aching. 

“Even right now! You’re still in pain. You were asleep for six hours and you’re still in pain! Can't you see that this isn't okay?” he was whispering, yelling, but he was upset with her now. He was upset with her not caring about her own well-being, upset that she thought her job was worth more than her health. 

She closed her eyes tightly, willing the pain to go away before she spoke again. “Spencer, I can't just sit and live around and have nothing and be in pain all day. This job is good for me. I can't just be a brick that never moves because I don't want to feel bad. I refuse to live like that.” she was getting more and more worked up with every word, and she could feel the tears stinging at her eyes, reminding her that she could still cry. She moved her hand in front of her face, not wanting Spencer to look at her. 

Spencer went over to her and sat down next to her. He just stared at her for a moment. Watched as she tried to blink the tears away, as she tried to will them away with just her thoughts. He could tell how much she was fighting, trying not to be vulnerable around him. He could see how much it hurt, how much energy it took just to do that. 

“Y/N,” he said, moving her hand away from her face so that he could see her again. He gently intertwined their fingers, reminding her that he was still there. “You can cry. It's okay to cry,” he said softly, more caring than he had been since she’d woken up. 

And the glass in her eyes broke. It broke open, shattering the windows in her eyes, letting the tears pour from the broken pieces. She couldn't remember the last time she had cried, couldn't remember the last time she’d had enough energy to cry. 

She didn't want Spencer to see. 

But he was sliding on the couch next to her, laying down and pulling her into his chest, he was rocking her back and forth slowly, remembering that she was still in pain, that too much movement would make her joints attack again. He was holding her, letting her cry. 

She felt like a child, but Spencer holding her was helping, it was keeping the pain a distance away from her, too far away from her to hurt her as much as it had been. 

She hadn't cried in so long. 

Spencer rocked with her, as she mumbled words against his chest, as his hands ran through her hair. 

The pain medication seemed to be helping. 

“Y/N… I just want you to give yourself some room to breathe,” he whispered after a couple of minutes after the cracks in her eyes had started to mend themselves. 

She looked up at him and frowned. She didn't want to take a break, she didn't want anyone to know that she needed a break. She didn't need a break. She didn't. 

“I don't want to,” she mumbled childishly, as she looked away from him. She was pouting now, and she knew that she wasn't going to win this battle. 

“It's okay to need a break Y/N. Everyone does. You have an unfair disadvantage. You deserve a break sometimes.” 

She shook her head. 

“It's not fair, “ she said quieter than before. The cracks were breaking again, and she was crying against his chest. He held her tighter. “It's just not fair,” she said again desperately. 

“I know,” he said as he kissed her head, as he made her aware that he was there, that he understood. “I know.” 

And they were curled up together. If anyone had looked in the window they would’ve seen a boy and a girl, both sad, both angry, but together and so desperately connected. They would have seen a boy and a girl, together, and in love. 

Spencer was quiet again, and he listened to Y/N’s stuttered breathing, listened as she took deep breaths, and felt as her chest stopped going up and down frantically. She was finally starting to calm down, to breathe with Spencer, to calm down against his chest. 

She sniffled and looked up at him, her neck hurting, not because of the pain this time. 

“I’ll try to take it easy,” she said, memorizing the way his eyes lit up. 

“You will?” he said excitedly, as she imagined a little kid would. She laughed at him, as he pecked her lips and held her tighter once again. 

“Yes.” she murmured, breathing in his scent, finally relaxed in his arms. 

It was strange that he could make her feel so peaceful in just a couple of minutes. Strange that although she had been crying only a short time ago, that she felt safe with him. 

“I love you.” she finally said. 

And he pulled away from her just a little bit, just so he could look at her face, into her eyes. 

Neither of them had said it before. Both of them had thought it, thought it over and over in the two years they had known each other. Both of them had felt it, pounding in their chest, breaking them down. They’d both thought it, both felt it, but neither of them had said it. 

Spencer was saving it for something special. 

But she’d just said it. 

She loved him. 

She looked up at him, hoping that the look on his face would be good. 

And it was. 

He was smiling, his eyes were lit up in hope and wonder, and the smile lines on his face were breathtaking. He was smiling so wide. 

She blushed and moved her head back down to his chest. He laughed at her, and Spencer wondered if he would ever be able to stop smiling after hearing that. 

“Are you sure that isn't just the drugs?” he asked, hoping he could look back in her eyes. 

And she giggled against him, and then looked up shaking her head. 

He smiled even more, and she copied him. 

“In that case,” he said, kissing her forehead “I love you.” 

“You do?” she asked, still smiling at him, forgetting about the pain, about everything, when she looked in his eyes.  

“I do,” he confirmed, moving his hand to her cheek, stroking her face with his thumb. “I really do.” 

She smiled and forgot everything. She smiled at him, and she sat in the warmth of his words, in the happiness of his smile. 

Maybe Spencer was her pain medication. 

my masterlist here

[justaratswriting]

Batfam and Mental Health

orOkay so I love Batman and all the things surrounding it. Like the idea of a random rich man who happens to be an orphan just suddenly adopting a ton of children is ridiculous, and thoroughly entertaining.

But I am also a big fan of psychology, and learning about the mind. So mental illness and related things are fascinating to me. 

I notice that like strangely there is very little stuff about the batfam having mental illnesses or dealing with psychology or therapy. Don’t get me wrong there is still a lot addressing these things, but still with the things the family experiences you would think it would be a lot more prevalent in the writing about them, and especially fan fiction about them.

Like I think showing mental health through  beloved characters would be really cool and could be a tool to destigmatize them. Like showing hero's with them would make really great representation, people could see them and think Oh I can still be a good person and helpful even if my mental disorder makes it hard and for things like depression or ADHD showing which misconceptions are harmful and don’t work. 

I can also see this in the physical aspect, like I wish a hero would have something like chronic pain or one of the many invisible illnesses. To give representation and show how pushing through the pain can shut a person down for days. 

The specific disorders I think would be really interesting of the top of my head is, depression, Anxiety, POTS, Fibromyalgia, Chronic pain, eating disorders, nerve damage, ADHD, Bipolar, OCD, Chronic fatigue, PTSD, c-PTSD, Autism, Elhers Danlos syndrome, And the one I really think would be interesting DID. 

Like fore depression, showing how hard it is to get out of bed. Not showing constantly being sad but showing how it can be numbing. Acknowledging that in a disorder like this logic doesn’t always win even if you are the most logical person to live. 

For anxiety showing how debilitating it can be. Looking into their minds to show the thought process, the mind fight itself and logic. Knowing their fears are unreasonable but not being able to shake the feeling. Show how for different people different things cause anxiety. 

POTS or Postural Orthostatic Tachycardia Syndrome, (super simply put it is a circulation disorder where upon standing up blood rushes to extremities and can cause all sorts of problems like fainting, pain in your feet, Dizziness, poor temperature regulation, etc. Also I am assuming people know what depression and anxiety is.) would be fascinating to me. Like having a hero that is constantly sitting down or biting down and pushing through the pain even a hero that has to slowly stand up. So in the middle of a battle being shoved down having to slowly stand up or risk fainting or vision completely blacking out for a while. Showing a hero who has learned to fight with no sight because of that very thing. 

Or Fibromyalgia (This one I am a little less educated about but from what I understand, it is a disorder characterized by muscle pain and tenderness usually with no known cause, so from what I understand it usually is diagnosed after a ton of other disorders are eliminated and the pain is still occurring, often also has affect on sleep and memory/mood.) Like showing a hero having a particularly hard patrol and having to take a couple days off and constantly going places or trying things to help with the pain. 

Or Chronic pain ( from what I understand the main difference between Fibromyalgia and Chronic pain is chronic pain has to do with the nerves and Fibromyalgia has to do with muscles, also Fibromyalgia has other thins to go with it like energy levels and mental functions so memory/mood.) Like a hero having constant pain even if they didn’t have a big fight, maybe showing them icing, heating, or taking pain meds and the rest of the family or team being super confused as to why. Before they know showing them freak out and worry that they went on a mission without telling anyone. Showing how it is a constant battle, that sometimes treatments will work and other times, for seemingly no reason they won’t. 

I would also like to see eating disorders portrayed by the bat family. Showing how it’s not always a conscious choice, sometimes it is more along the lines of choosing something else over eating. Showing how people can use it for control or to punish themselves. Letting there be a male example, reminding people that they can happen to anyone. Allowing people to have representation. Show a recovery, how it is not impossible for anyone but not down playing how hard it is. It is a true and hard fight, and show how it can sneak up on you and drag you back. Not just one easy recovery, that recovery is a choice. You have to want it but you also need help, it is a long hard process and accessibility is everything. Show a family member making them food, show them sometimes eating it and others not. Also don’t only show under eating show how people can’t stop themselves from eating. Having cabinets locked to keep people out, for their own safety. 

Or nerve damage, showing how years of their work and fighting can really mess someone up. Show someone suddenly losing all feeling or sensation in certain parts of their body or constant pain or even pinched nerves. Show how confusing it can be to not know what you are feeling. Show how weird it can be when you realize you are fine or that nothing is touching you or taking it in the opposite direction and not realizing you are hurt or someone is trying to be your attention. I would also love to see the batfam explain any of these injuries to the hero community or to the public. Maybe show the hero community really starting to look into mental and general health services. 

ADHD or also ADD, showing how people can use it but also showing how hard it can be to control and fight. How much it can impede focusing and show situations it can put people in. Show a hero forgetting a huge part of their plan and falling but because of some random information from a hyper focus they still save the day. 

Bipolar, showing the wild swings and how confusing it can be. Feeling like a different person, struggling with identity and their own decisions. Show them accidently pushing people away but also how hard they work to maintain family and friends that despite how unpredictable they can be their friends still stick around. Or if their friends can’t handle it show them peacefully and respectfully stepping out of their life. Show how hard that can be to except but that the future can end up better than you could ever hope. 

OCD is really one I wish we saw in the hero's. Show their routines and things they do. Show the thought process, like if I don’t properly put the dishes away in fourteen seconds the joker will escape arkham. Show how terrifying the thoughts can be, but show how detail oriented it can make people and the beautiful art and amazing work that they can do. Show a person putting them selves at risk to comply with their routine. Like ignoring injuries to write a report. Show them and family or friends working to change the routine. Show how hard it is the moments they want to turn back and continue and how much they want to stop but show them not giving up and making the differences they want. Show them accomplishing things, show their compulsions actually keeping them safe.

Or even chronic fatigue, Show the fight each morning. Them saving energy, the disconnect between how exhausted you are mentally vs. physically. Show a hero that 50% of the time physically is too exhausted to be in the field so they offer technical support. Show a hero crashing, suddenly just not having enough energy to finish patrol or even get home. So someone has to come pick them up. Show them getting stuck in a fight and how hard it can be to do anything much less a fight. 

Let the characters have PTSD or c-PTSD, show flashbacks and being stuck in your head. All of the bat family has lived through horrors please show it affecting them. Show how they get help how they work through it show what can happen and how bad it can get if it is unaddressed.  

Show them having autism and how it is just a different way of life that there is nothing inherently wrong with it and how the ignorance that surrounds it and similar disorders can hurt and affect people. Show how it can be simple things that can show it or affect it. Try and look at it from their perspective and what things happen that should not just because they way someone is. 

Elhers Danlos syndrome, show the pain, the misdiagnosis, the process, the fight. Show how disabilities like this and several others including ones I have mentioned can cause a person to need medical equipment such as wheelchairs and braces. Show how not everyone using a wheelchair can’t walk. Show how limiting it can be and the precautions you have to take but don’t make everything about how hard it can be. Show how using a Wheelchair while not ideal can open up so many opportunities. Show them actually being able to go on family vacations and amusement parks because they have a wheelchair. Show how important it is to have ramps and accommodations for similar things so people can participate and so people can actually go places they want. Always show how hard people with disabilities and such work. Show them trying to get treatment and trying new treatments show how it isn’t as simple as getting a knee brace or two. 

And finally coming to one that absolutely fascinates me, DID or Dissociative Identity Disorder formerly known as multiple personality disorder. But don’t do this one completely uneducated, it is already a very stigmatized disorder. Show how Alters communicate. Show how they all work together and that they were made so the body and mind could survive. Make full characters just put them in one body. Show the confusion once they find out, show them slowly realizing and learning signs and what happened to them. Show each of the Alters having different friends and maybe understanding and knowing the family different. Show the different reasons and setups systems can have. Show system responsibility and each Alter working on themselves and to make a life for the system. Show the roles Alters will take. Show the horrible process of fragmenting and what things can cause it but also show healing and people supporting and accepting systems. 

Overall showing good parts of all the struggles people can have but not ignoring how hard they can be or glorifying them to people who don’t understand. Showing misconceptions and how support can affect these disorders. And most important in my mind, giving hope and a future to look forward to for the people with these disorders.

[cuttlefishkitch]

hello! i haven't talked to you before, but ron said that i could ask you for some advice on writing eds? (i'd like to know things to avoid/common things that could come up in everyday life that would be good to mention/the sort of aids and stuff they'd have maybe?/anything else you think is relevant)

Hi! Sorry this took so long, a combination of ADHD and chronic pain slowed me way the fuck down. Thank you for being patient! 

EDIT: WEIRD HEEL THINGS I FORGOT!!

So, before I get into this I should probably say I technically haven’t been diagnosed with Ehlers Danlos Syndrome (EDS for anyone reading) because it’s one of those syndromes that takes forever to get diagnosed with (it took a friend of mine’s mother over 30 years to get dxed). Many doctors, and everyone I know who does have EDS agree with me that it’s probably what causes my chronic joint pain and some of my other chronic issues. But just because three separate doctors have said “Yeah Probably” doesn’t mean I’m diagnosed!! Only a geneticist can do that!! And they had two-three year waitlists BEFORE the apocalypse happened.

I am diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Small Fiber Neuropathy, and potentially misdiagnosed with Fibromyalgia (once I get properly tested for EDS I might get undiagnosed with this because I don’t have most of the main symptoms of Fibro, but I got diagnosed with it anyway because it’s what doctors misDX you with when they don’t know what’s wrong with you and don’t want to do more tests).

All that said, I’ve done a lot of research about EDS (mainly because it’s the only thing that explains all my symptoms since doctors seem incapable of doing so), and know a few people who have either confirmed or suspected EDS, so I’ll link to some stuff, talk about the symptoms that often come with EDS, explain how the symptoms I have affect me, because just because someone’s not diagnosed doesn’t mean they aren’t having symptoms, and probs elaborate a bit about writing physical disabilities and chronic pain in general because it’s super important to me! 

So RESOURCES aka how to make sure your post never sees the light of day because you’re linking things and tumblr hates it when people give other people information!!

Youtubers! If you want to know about the day to day of living with EDS or any disability or chronic illness I super suggest finding a youtuber that makes videos about their life. My EDS favorites are

Jessica Kellgren-Fozard

Annie Elainey

Amy Lee Fisher

Websites! If you’re asking random folks on tumblr I’m assuming (and hoping) you’ve already done the basic WebMD google searches and looked over the seemingly ridiculous lists of symptoms and related conditions, so here are a few websites that are made more for people than for doctors.

The Ehlers Danlos Society

OhTWIST (That’s Why I’m So Tired)

ChronicPainPartners (the fact that they have an entire section of articles called “Dealing with Doctors” should really tell you something)

Books! If you feel like doing actual reading! I suggest reading books written by people with Ehlers Danlos, to get a feel for how they portray themselves. I’m not saying steal, but it’s probably a good point of comparison to see how your portrayal feels. (haven’t actually read these b/c my ADHD doesn’t let me read)

Ria Ruse by Morgan S. Ray (a superhero book with a disabled super MC!!)

Mysteries of Maybelle by Imani Benfell (Imani is still in high school and has already written and self-published a book cause she didn’t have enough representation for herself how cool is she!!)

Bodies in Motion by Liana Brooks (tw for pregnancy problems and miscarriages in the link, because it’s a blog post talking about integrating EDS symptoms into the story without explicitly naming them as such)

OKAY, now for some rambling about EDS SYMPTOMS!!!

Ehlers Danlos is one monster of a genetic condition in complexity and variety. There are THIRTEEN different identified types of EDS, it often comes with Mast Cell Activation Syndrome (MCAS) and/or POTS, and can lead to various other conditions like gastroparesis, chiari malformation, craniocervical instability, and/or bad teeth. So if you’re going to be writing a character with EDS consider what other comorbid conditions they might also have. I’m mainly going to be talking about Hypermobile EDS (hEDS) because it’s what I probably have and what I’m most familiar with. That said there is a lot of overlap in symptoms with the other varieties.

I started typing this section and realized I was going to have to break it down even more so we’re going to talk about Chronic Pain, Unstable Joints (Dislocations and Subluxations), Skin Things, Mobility Issues, and Other Weird Shit and how those things get addressed separately.

Gonna get the Other Weird Shit out of the way first. Because EDS is a malfunction of connective tissue it can fuck up all sorts of random things. For instance, I and many other people w/ hEDS have trouble swallowing. Shit gets stuck in my throat, I sometimes choke on and have to cough up food, and pills can be hard to swallow, which sucks cause I take A Lot Of Pills. If it doesn’t cause full-on gastroparesis it can cause IBS or other digestive problems b/c the digestive tract is mostly made of connective tissue. It can potentially cause heart problems even if they aren’t as big of a risk as in some other forms of EDS. Premature osteoarthritis is common because what you need is more joint pain. And Fatigue OH BOY THE FATIGUE. And of course the headaches, can’t forget those pesky migraines can we!

AND piezogenic papules!! I completely forgot!! Piezogenic papules are little white bumps that appear when you put weight on your heel. In some people they hurt, but in others they don’t. They’re technically tiny little herniations of fat peaking through the fascia in the heel. They were added as part of the diagnostic criteria for hEDS in 2017!

Now for Skin Things cause it’s not as big a thing in hEDS as it is in other forms. Basically, in a lot of forms of EDS, the skin is extra stretchy and extra delicate. It bruises and tears easily, people with the extreme versions of this can accidentally scratch something into an open wound if they aren’t careful. My skin is pretty soft and sensitive, I def have the typical velvety skin, and as is pretty par for the course of someone with hEDS my skin is a little stretchy, and sorta delicate. I’m not as tissue-papery as some people get, but I almost always have at least one mystery bruise or scrape b/c existing is hazardous. Most of scars are also pretty normal, unlike the extremely papery and atrophic scars (though I have a few tiny acne scars that are atrophic) that are common with other kinds of hEDS. Something that I DO have is Lots of Stretch Marks, all over my thighs, and even down to my calves. Which wouldn���t be abnormal, except for the fact that I’ve never been over 145 lbs and I’ve never been pregnant. Having a lot of stretch marks or striations in the skin without due cause happens because the structure of the skin isn’t as strong as it is in people with a normal amount of connective tissue.

I don’t have to worry as much about my skin but people that do are usually very careful with adhesives because they can irritate or tear the skin, which sucks when you need a lot of bandaids cause your darn skin won’t do its job.

Now on to the meatier stuff and since I’m mostly working backward let’s do Mobility Issues!! These can happen in loads of ways, but a lot of what causes these in people with EDS are the other two things I wanna talk about. Unstable joints lead to increased risk of injury when doing stuff people with fully functioning joints can do.

For context, I’m an ambulatory wheelchair user, meaning I can walk, but a lot of the time it’s better if use a chair. Mine is mostly for my POTS symptoms, but the fact that my legs aren’t also in absolute agony is a big plus. I use a custom manual wheelchair with a SmartDrive (b/c I’m very fucking fortunate and have good insurance) whenever I leave the house and have to be “walking” for more than a few minutes at a time. I can’t fully self-propel in a manual chair because it would be damaging to the joints in my arms and hands, but the smaller chair is easier to maneuver in less than accessible spaces (like almost everywhere). There was about a month-long span where I used a very cheap and very bulky electric chair while I was waiting on the ideal set up I have now. Before that, I also briefly used, and sometimes still use, an up-right posture cane.

People with EDS have widely varying mobility issues because of how uniquely it can manifest. My cane only gave me a little help with balance because if I used it in any prolonged capacity any pain it took away from my legs was relocated to my arms, and as an artist, my arms are more important to me!

If you’re going to write a character with EDS having mobility issues as a result of their EDS the best thing to do is to narrow down their specific needs. Are their knees complete and utter garbage but their shoulders and wrists strong? Maybe they can get away with using a cane. Can they not stand for longer than 5 minutes because of the vertigo from their POTS? Maybe they need a manual wheelchair. Would propelling themself damage their back and arm joints? An electric chair might be necessary! Plenty of people with EDS use all sorts of combinations of these aides to get around their life, consider how your character’s good and bad days would be. Do they have back up plans if they overestimate themselves? There can be a lot to manage, but don’t let it scare you off! Sometimes I try and make it into a resource management game (because I’m a game designer and that’s what I do), to make evaluating my energy and mobility needs more fun!

But now let's tackle some of the reasons those mobility aides might be needed. Unstable Joints.

Ever stepped wrong and rolled your ankle? It hurts for a few steps and then kinda fixes itself, or maybe it bothers you for the rest of the day and you put it up and ice it when you get home? When I was walking around outside my house that would happen AT LEAST once a month, usually more. Some times I’m sitting wrong and when I get up my knee isn’t a knee anymore and decides to just give out from under me. My knuckles are made of unruly popcorn and they Don’t Want To Stay Home!! Oh! And my shoulder is more often out a little out of its socket than it is fully in.

Unstable joints lead to Dislocations and Subluxations of varying intensity, and some people get them more frequently than others. Some can be severe enough to necessitate hospital visits and even surgery, some subluxations are so banal (like my fUCKING SHOULDER) that you just learn to live with the pain.

If a character is going to be in high action, combat-heavy scenarios, chances are they’re going to be popping out joints left and right. Hell, depending on the severity of their joint laxity they could be doing the same sitting at a desk. Again, it’s incredibly varied. I’d suggest setting some sort of baseline for yourself, of what a character’s joints can and can’t stand up to, and maybe do some research on which joints are most likely to pop out in general (hips and shoulders are big culprits being the wacky ball and socket motherfuckers they are). Then maybe have something pop out or hold up every so often when it shouldn’t cause hey! EDS is kinda just like that! Unpredictable!

Some ways people manage joint laxity is with braces, KT tape, and physical therapy. Braces come in many different forms, since I’m currently getting pretty much no treatment for my shitty joints I use mostly compression braces made for sporty people. It really is amazing how much a bit of tight fabric can do to keep my wrist in place.

More specialized braces often have solid parts to prevent the joints from hyper-extending (bending the wrong way) and causing further damage. If you ever see someone with what looks like diamond shaped rings around a bunch of their finger joints, chances are those are Ring Splints, and are there to keep the finger shaped like a finger. I want to get my hands on some and get some on my hands Very Badly, because my fingers hyper-extend SO MUCH when I type, and it makes my hand pain way way worse.

KT tape is another thing people often use. It’s stretchy tape you put on your skin and it basically functions kinda like a second ligament as well as reinforcing the joint and keeping the bones mostly where they’re supposed to be. The problem with this is a lot of people with EDS have very sensitive and fragile skin like I mentioned before, so KT tape can cause allergic reactions, chronic skin irritation, or just straight up take the skin with it when someone goes to remove it. Hence a lot of folks are really careful with it.

Physical Therapy is kinda the best (and only) treatment for joint laxity aside from Very Invasive and sometimes Highly Experimental surgery. It focuses on strengthening the muscles around the joints so they can do the work all those bone ropes made of body glue can’t. The problem is finding a physical therapist that 1) knows what EDS even is, 2) knows you have it, and 3) knows how to treat it without doing stuff that’ll Phucking Hurt You Worse!! Because exercising wrong with EDS can do Permanent Damage!!!

Again most folks use a combination of all of these things, or have next to no access to them b/c healthcare sucks.

Anyway, on to one of my favorite topics, Chronic Pain!! One of the reasons this post took me so long!!!

Chances are if your character has chronic pain as a result of their EDS there are gonna be some things they hate, including stairs, rain, thunderstorms, stairs, hills, uneven terrain, oh and did I mention stairs??? It’s going to vary person to person, but almost everyone I’ve met with pain from EDS has complained about their knees. For me the most debilitating pain is in my fingers and wrists. They’re by far my least stable joints but I use them constantly for stuff like drawing, typing, and sewing.

Because my joint pain is so wide spread, like most people’s with hEDS, it effects every single part of my day to day life. I can’t carry a heavy ceramic plate, open a bottle, or even use my computer without pain. It’s practically impossible for me to get comfortable in any position be it sitting or laying down, and as you can imagine that makes it hard to sleep a lot of the time. Moving too much hurts, but so does sitting still. I’m constantly taking braces on and off or cracking/stretching my joints so they pop back into place and hurt less.

Also being in pain makes everything else That Much Worse. I get tired way faster than I did before my pain was this bad (I had chronic pain for a while before actually realizing it wasn’t normal to not be able to walk down the block without feeling like your foot bones are trying to escape). My sensory issues and anxiety disorder are more easily aggravated because my base level of comfort is way worse. It fucks with my depression. And OH BOY does it make my ADHD worse because being in pain is fucking distracting as hell and makes it harder to make decisions and switch tasks. Also my ADHD often makes my other symptoms worse cause I forget to take my meds, don’t drink enough water, or can’t find my fucking braces because the item eating black-hole that comes with ADHD stole them. The intersection of mental and physical disabilities is probably a rant for another time though, so back to chronic pain.

Does it suck? Yes, undoubtedly. Is this incredibly debilitating? Of course it is, I spent the last several months unable to feed myself without assistance because there was a staircase between my room and the kitchen and I could only manage to climb it once a day. Is it overwhelming? Definitely, I’ve frequently broken down crying from a combination of pain and frustration because I’m having a bad day and there’s no relief to be found. Am I able to predict when it’s going to rain with uncanny accuracy because any change in barometric pressure makes me feel like every bone in my body is trying to kill it’s neighbors? You bet your fucking ass I am!! Does it sometimes make me irritable, angry, and occasionally dismissive of when abled people get cold or a temporary injury because the stuff they’re complaining about is my life every single day and all avenues of treatment and recovery I have could take years and still not entirely solve my issues? Yeah, and while I deserve a little extra patience I also have to be sure to check myself because I don’t want to turn into someone who’s nasty to be around. Do I sometimes need to sleep for 17 hours straight because it’s raining, I have migraine, and I’m in too much pain to be conscious? Yup, sometimes a few days in a row. Does living in constant pain mean I’m unable to do all the things I want to and does that sometimes make me wanna curl up in bed and never leave? Yeah, it happens.

But! And here’s the big important but, that’s not everything! I still write, draw, and talk to my friends!! It might take me a little longer but I get there. I’m still happy and excitable and make the time to write out five page long posts about EDS because it’s something I’m passionate about! My chronic pain doesn’t stop me. I refuse to let it. I never really wanted to go mountain climbing anyway, so I’m perfectly happy being able to make it up and down the six steps in my house, even if sometimes I have to sit and bump down them on my ass, or crawl up them like a cat. Chronic pain isn’t all I am. It isn’t a fate worse than death. It isn’t the only thing your character should talk about (though I do talk about my pain a lot cause I’m a complainer about almost everything). You can have your character be hindered by their pain, realistically they would be. You can have them seek comfort, support, and relief. Other characters can commiserate and be sympathetic, but it doesn’t mean their whole life is going to be one big pity party, that would be incredibly fucking boring. I know I’d be bored out of my mind.

All that said dealing with chronic pain, especially from EDS, is Complicated. Physical Therapy is the gold standard, but like I said before it can be a long and difficult process, and isn’t always accessible. Stabilization methods like I talked about before can help prevent pain, or reduce it by keeping bones mostly where they belong. Heat and cold help joints, relax muscles, and reduce inflammation but keeping them applied is rough and the relief doesn’t always last. Doctors prescribe anti-depressants, anti-anxiety, and sometimes even anti-epileptic medication to help manage pain, but everyone’s mileage with those varies. And I’m not at all qualified to talk in-depth about narcotics or other heavy duty pain-meds, but suffice to say the war on drugs fucked shit up for people that legit need that kind of help BIG TIME.

Now for my closer/bonus rant about EDS and Disability Writing in General!

Everyone always says write what you know, so if you really want to do disabled people justice, get to know disabled people! Make friends with disabled people, get involved with advocacy groups, consume content made by disabled creators both about disability and not! Disabilities are so fucking diverse, even EDS is such a complex disorder, and comes with so many potential co-morbidities, that practically everyone with it has a unique experience. There’s no way I can fully explain everything in a tumblr post. Hell, even if I could talk to you for hours probably couldn’t give you enough info to answer all your questions (especially since I’m still in diagnosis hell :,) ), so talk to a wide range of people with EDS and other disabilities!! I know it sounds like a lot of work but trust me, disabled people are some of the strongest, raddest, coolest, people you will ever meet that it won’t feel like it.

And don’t be afraid either, the fact that EDS and other disabilities are so wildly varied means that you have a little bit of wiggle room with your character’s experience. There’s so little disability rep out their I think people are WAY to scared to try their hand at writing it. So long as your character is a fully developed person in addition to being disabled, you give some logical thought as to how it would affect their life, and you don’t make their disability the butt of any joke it isn’t difficult to avoid ableist writing. PLEASE WRITE MORE DISABLED PEOPLE AND PEOPLE WITH CHRONIC PAIN/CHRONIC ILLNESS!!

Okay that’s it, again sorry it took so long for me to get back to you! My fingers were being little pests about it, and my ADHD (which is honestly more disabling than everything else a lot of the time lmao) was being an asshole! Hope this helps, and feel free to ask me more questions if you need clarification! It might take me a bit but I do love talking about this stuff.

[jenroses]

Putting some thoughts about unpacking toxic cultural ideas about food behind a cut.

So, I'm fat.

I also have a hell of a lot of metabolic and immune issues going on that mean I don't eat a lot, and what I do eat is high in fat and very low in carbs because it's the only reliable way to keep my blood sugar stable enough to prevent making neuropathies worse or permanent.

I'm allergic to a lot of things, as well.

I've been watching a mukbang YouTuber lately, tzuyang, and not getting into overall issues of mukbang in general, or the obvious concerns around binge eating...

I feel a strange sense of peace, watching this tiny woman eating 15 pounds of food in one go. She's 24. She visited a doctor on screen to get her test results for bloodwork, and her glucose and cholesterol levels, etc. are fine.

There are days when I struggle to find the energy to feed myself. Food is hard for me, it's been hard for a long time, it's probably always going to be hard because of the mast cell issues and the steroid induced diabetes (steroids for severe, difficult to control rheumatoid arthritis... My dose is low but even tiny increases jack up my blood sugar, I've been on 14+ drugs trying to control the ra, so far the best I've got is sometimes I don't hurt quite well much, and going off steroids for even a day will leave me with a brutal headache, even though my dose is so low... 2mg medrol.)

But I watch this woman eat and it becomes an inescapable truth that my weight has little to do with my food intake, and everything to do with metabolism, genetics, past pregnancies and illness.

It's not my fault.

If I could exercise safely, I would. I used to be a dancer, I rode horses, I was on swim team for years, distance and im, I used to sew and build and cook and dye fabric and as late as the summer of 2007, I was able to work 14 hour days doing hard manual labor remodeling our house, clearly if I could exercise, my natural tendency is to be active.

But chronic fatigue, post viral (h1n1, 2009) is no fucking joke and when you're as sick as I've been, they throw a lot of meds at you, and a lot of them cause weight gain, and at this point that means I'm not on psych drugs and I'm not on pain drugs and I'm not in nerve drugs which really leaves fuckall to help with the pain side of things. Because while I flat out refuse to try to lose weight, I cannot afford to gain it either and anything that causes weight gain tends to also cause other side effects I also cannot tolerate. I already have sjogrens, I don't also need drug induced dry eyes.

This is a roundabout way off getting to the key takeaway.

Different coping methods and triggers function very differently for different people. I watch tzuyang and feel much more peace about my body. It gives me enough energy to make myself a reasonable portion of food and eat it, when eating is hard. Other people might be triggered to pathological binge eating/purging by the exact same thing. I'm far more traumatized by people talking about dieting than I am by watching people eat enormous quantities of foods I cannot eat and would not want in that quantity even if I could.

[mithrilwren]

Closed Hold

The long awaited next installment of the Shadowgast Figure Skating AU (inspired, as always, by the amazing art of @fiovske) is finally here! I don’t know if it’s cheating, since I was already planning to write this, but I’m also counting this as my submission for Day 7 of @essek-week because hey, it’s definitely an AU! :D You technically don’t have to read the first two works in the series - Inside Edge and 3 Turn - to enjoy this one, but some details may make more sense in context. Also, warning that things get a little NSFW by the end, in case that’s not everyone’s cup of tea! [Also on Ao3] [Find the whole series of one-shots in this AU here!]

(cw. implied past dub/con, chronic pain)

Essek never thought he’d find himself in a place where he could call sharing a hotel room with someone else ‘comfortable’. Yet here he is, sitting at a little table with his laptop open while Caleb slouches against the headboard, too engrossed in his novel to care for posture or dignity, Essek finds himself at ease in a way he didn’t know he was capable of - at least, not in another’s presence.

A bottle of wine sits open and half-finished by the tray on the nightstand, and every so often Caleb reaches over and takes a bit of carrot from the remains of Essek’s salad. He eats absentmindedly, the motion so regularly spaced that Essek can’t believe he’s aware of what he’s doing. He should find it disgusting, but not a single drop of dressing spills onto the sheets, and there’s something about the movement that’s almost mesmerizing in its steady, involuntary rhythm.

He almost wants to tell Caleb that they can order more food, if he’s still hungry. He doesn’t need to pick the scraps from Essek’s plate. But he knows enough now to say that the suggestion would be ill-advised - or rather, he knows enough now to say that he doesn’t know what Caleb’s reaction would be, and that is a good enough reason to be cautious. Slow steps have worked well for them in the last few months. There’s no reason to take unnecessary risks with something so delicate.

These evenings, where they share the same space - conversation - a good meal - are still difficult to come by. There are murmurings of renewed hostilities between the Dynasty and Empire, and orders from the Bright Queen to reduce contact while the situation cools, and fewer and fewer public spaces they could go where privacy would be assured. Essek is certain that some would find the idea of the two of them sneaking off to hotel rooms together, only to do nothing more illicit that talk the night away, an utterly unbelievable story. But truthfully, it’s only after long nights of competition that they find themselves in the same countries - much less the same cities - and neither has the energy for much else after so many hours at the rink.

And besides, this quiet time - where both are engrossed in their own worlds, but still close - it’s just as soothing as a calm bath, just as warm in his chest as a hot drink, and Essek wouldn’t trade it for any more exciting diversion.

Caleb stretches, the book’s spine knocking the top of the headboard as he curls backwards like a cat. As he settles once more, there’s an audible creak - not of the wooden bedframe, but of tendon against bone. Essek glances over again in time to catch a wince of pain in Caleb’s jaw, and his fingers pushing gingerly against the small of his back. Eventually, he flips on his stomach and resumes his reading.

“Are you alright? That sounded... unpleasant,” Essek says. Caleb doesn’t even look up from his book to reply.

“Sorry to bother you,” he says coolly, “I’ll try to keep it down.” A note of dry humour laces his voice, and as always, Essek’s heart lifts to hear it. They’ve gotten easier around each other, slowly but surely, and Caleb’s knife-sharp, often obscure wit is one of the greatest discoveries he’s made in the process.

Still, Essek’s concern isn’t assuaged. Caleb took a hard fall this evening - not so disastrous as to knock him out of the running, but ugly enough that Essek had ached in sympathy as Caleb picked himself up off the ice. If he isn’t bruised from calf to hip, which Essek quietly expects, he’s at least likely to have twisted something in his back from the awkward one-handed press he had to do, to get back on his feet in time for the next element.

“Did you stretch enough?” he asks. Caleb hums noncommittally, nose still pressed into his book, and Essek thinks back to the moments after Caleb’s routine finished. “I didn’t see Beau there this evening. Were resistance bands enough, or did someone else help you?” Again, there’s no answer except a grunt. Essek gets the sense he’s being purposefully ignored. “Caleb,” he says, more loudly. “Please tell me that you stretched.”

“Stop worrying,” Caleb says, flipping another page. “I did stretch.”

“Clearly not enough,” Essek chides, standing so he can better survey Caleb’s posture. Even prone on his stomach, he’s still favouring his right side. Not a good sign. “You need to take care of your body, or you’re going to injure yourself, permanently.”

Caleb shrugs. “I’m old, Essek - too old for this sport, according to most people. How much worse could it get?” A twinge of heat sparks in Essek’s stomach, something low but simmering to a boil, until his hands are clenched and his jaw clicks with the effort of not snapping.

“Worse,” he says, and at last, Caleb looks up. The rising frustration fades just as quickly as he clocks Caleb’s assessing gaze, and pivots to embarrassment at his own unguarded reaction.

They need to choose another subject, and soon is not quick enough.

“Just… will you let me help you? At least to work out the worst of it, before you fall asleep on that book and wake up with a cramp.”

Caleb’s eyes narrow. “You want to... help me stretch?”

Essek clucks his tongue at Caleb’s dubious tone. “I assure you, I’ve had many years of practice, and it’s always easier with a partner than with a band.”

Caleb’s gaze grows more distant, less like he’s looking at Essek, and more like he’s found a ghost at the edge of the room.

“...I know,” Caleb says, voice softer than before, but still, he doesn’t move from his place on the bed. Essek sits down on the other side, leaning closer, but not so close that his weight disturbs Caleb’s half of the sheets.

“Then let me help. It would set my mind at ease, at least.”

“Well,” says Caleb, with a small smile, still not quite meeting Essek’s eyes, “if it would set yours at ease… give me a few minutes.”

Caleb pushes himself up at last, closing the book while trailing a rather forlorn finger down its spine, as though saying a reluctant goodbye to an old friend. Then he walks to the hall between the two rooms of the suite, and begins jogging lightly in place.

Caleb’s warmup gives Essek plenty of time to consider his plan of action. He closely watches the muscles twist beneath Caleb’s long-sleeved tee and loose sweatpants, searching for a place to start. Pain in the lower back often stems from tightness of the hips, which is also one of the most difficult areas to stretch without help. Essek notices too that his shoulders still ride up to below his ears as he runs, creeping higher and higher with each footfall. That could use work, and maybe his obliques as well, if the side Caleb jarred today isn’t too bruised…

At last, Caleb finishes and returns, slightly more cherry-cheeked than before, but not huffing and puffing - just enough to get the muscles warm and limber.

“Show me what you usually do for cooldown,” Essek says, still seated on the bed, and Caleb launches into a series of standard stretches, ones that any skater has in their arsenal. Essek does notice the age difference between them as he watches, but not in a significant way. Caleb’s joints don’t bend with quite the same arc as they might have for a dancer ten years younger, but he’s still very flexible. His arabesque reaches past his head - though Essek notes a small tremor in the inside of his thigh as he holds the position, and there’s an unsteadiness there that concerns him. It could be hip tension, as he suspected before, but Essek worries-

But it’s one in a million chance, as it was for him. There’s no logical reason to believe the tremor is anything more than fatigue.

“That’s it,” Caleb says, rising back into a standing position after his final lunge. Essek presses his fingers to his lips, considering.

“Let’s start with your shoulders,” he suggests. “You have a good range of motion overall, but I’d like to loosen them up, the right one especially.”

He moves behind Caleb, bracing one hand on his left shoulder while placing a flat palm against the apple of the other, and begins to gently rock the joint in its socket.

It’s a position he’s quite accustomed to, having done the same for others on his team when he was far younger - back when he still had peers, rather than admirers. And yet, there’s something strangely more aware in coming back to the action as an adult. He feels the differences between his own body and Caleb’s keenly. Though Caleb is far from stocky - very few figure skaters are - the muscles beneath Essek’s hands are less lithe than his own. Broader, as though bred for a different purpose, and whittled down to their current lean shape. He wonders if Caleb grew up doing manual labour of some sort, a kind his body still remembers in form, if not in substance.

For the first few pushes it almost feels as though those muscles are getting tighter. Like Caleb is tensing, resisting the movement. Essek frowns.

“Breathe,” he instructs. Caleb, with effort, takes a deep breath, and the catching of the tendon finally releases with a soft click. The process goes much more smoothly after that, the joint sliding like butter in his palm by the end of the seventh rotation. He moves to the other side, and has no more issues.

As Essek steps away, Caleb swings his arms forward and back experimentally. “Better?”

“Much,” he says, smiling a surprised grin. “Thank you.” Essek nods.

“Of course.”

“Anything else?”

“Hips, I think, if that’s alright with you.”

He guides Caleb down to the floor and onto his back, and takes a position on his knees at his side. Though Caleb ordinarily has a few inches of height on him, from this position, he feels very high up. Caleb waits, motionless, as Essek hooks a hand under his knee and raises it up slowly, watching the microsmal twitches in Caleb’s expression for any sign of pain or discomfort as he pushes the leg up towards his chest. But Caleb’s eyes fall closed, and whatever resistance he had offered before, he lets Essek’s hands work now without any complaint, bodily or otherwise.

When he spies the first twinge in Caleb’s jaw, Essek slows his pace, but continues pressing, trusting his hands to feel when the resistance is too great. It’s a delicate balance; too little pressure, and the stretch does no good, but too much, and he risks injuring Caleb. He could strain muscles, even tear ligaments, if he’s not certain of how hard to push.

It requires a great deal of trust, he muses, to let someone do this for them. Since his days as a trainee, he has allowed few others to help him, unless they’ve proven themselves time and time again to understand the nuances of his own situation. Mirimm is one of the small number on that list, and his own mother, when she still had time for such things.

Who has Caleb - cautious, reserved Caleb - given such trust? He knows he’s seen Beau follow Caleb into the locker room at least once, so presumably her, but have there been others?

He presses one more inch. Caleb winces, but does not fight him. He remains perfectly still.

An awful, nauseating thought floats into Essek’s mind.

He lets the leg float gently down to the floor, bowing the knee out ever so slightly so that the joint has a chance to rotate, then removes his hands to his lap. Caleb cracks one eye open, looking up at Essek and raising an eyebrow, as if to say is something wrong?

Yes, Essek thinks, I’m afraid there might be.

“Caleb,” he says quietly. He does not want to ask this question. He must ask it. “Did… Did Ikithon ever-”

Both of Caleb’s eyes fly open.

“No,” Caleb says, the clipped syllable harsh, and it sounds believable, and Essek so wants to believe him. “Whatever you are thinking, no.”

Essek breathes out slowly. “Then this sort of thing-”

“I would not have done with him.” Caleb turns his head to the ceiling, staring up at the hospital-white plaster, and Essek is still very conscious of his height, so he leans back on his hands into an uncharacteristic slouch. “He was… he was not a hands-on sort of teacher, so to speak. He preferred to instruct, and trust the three of us to do as he asked.” Caleb falls silent for a moment. “With them, yes,” he says at last. “We did this sort of thing together, always.”

Astrid. Eodwulf. Names never to be forgotten, though Caleb has only spoken them aloud once. They are burned there, in Essek’s mind, along with every spare detail Caleb has told him of his past. He wishes, some nights, that he did not know. That he could exorcise the names from his memory, and the pain from Caleb’s as well. But at least the burden is shared between them now, and he has to believe that is better than the alternative.

Essek reaches out and pats Caleb’s ankle. “I’m sorry to bring it up,” he apologizes, and Caleb’s smile is acknowledging, and forgiving too. “Do you want to keep going?”

He’s gratified that Caleb seems to genuinely consider the question before answering. It gives him hope that he hasn’t, yet again, overstepped a line, one hidden beneath the layers of uncertainty between them he fears he’ll never fully unravel.

“I think so.” Caleb shifts his hips. “It was already feeling a little better.” He lifts his other leg, just slightly, and as Essek shifts around to take it in hand, he thinks again of trust. Of Caleb putting his body in his hands, believing he will treat it kindly, even when others have not. The warmth in his chest grows, and grows.

He presses down, and this time Caleb keeps his eyes open.

When Essek is satisfied that both hip flexors are as loose as they’re going to get without professional help, he asks Caleb to sit up, then kneels behind him. He leans his weight into the space between Caleb’s shoulder blades until Caleb bows, forehead touching his knees as he curls his arms beneath them. Already, Essek can see the difference in the fluidity of the movement from earlier, and he presses with his thumbs at various points of the lower back, pleased to discover that most of the tension there has been released. He guides Caleb back up, then prods at his upper back. The left side isn’t bad, but his right… Essek can barely go five inches without finding another knot.

This isn’t the result of a night or two of inadequate stretching after a competition. This is months, years worth of stress gnarled up beneath the skin and never adequately dealt with, if addressed at all. No wonder Caleb’s shoulders rise so high that the judges take off points for it. No wonder relaxing at all is a force of will. His body is wound so tightly that Essek barely needs to dig deeper than the surface to find the evidence.

“How long has it been since you’ve had a massage?” he asks, curious. Caleb’s incredulous little laugh ripples out beneath his palms.

“A very, very long time. That’s a kind of luxury I can’t usually afford.”

Essek wants to argue that it isn’t a luxury - that it is, in fact, essential to the proper functioning of a figure skater’s body. The benefits in terms of flexibility and mobility are incalculable. And yet, without sponsorships or other income, the calculation must be done.

How very far Caleb has managed to go, despite his lack of resources, continues to impress Essek, but scrappiness doesn’t equal a healthy body that will outlast the competitions to come.

“They have a spa here, downstairs,” Essek suggests. “It might be closed now, but I’m sure if I called the front desk-”

“No,” says Caleb, just as clipped, though his voice softens much more quickly than it did before. “Thank you. I don’t- it doesn’t appeal to me.”

“A massage?”

“The environment,” Caleb replies. “The table. All of it.” Essek doesn’t press for more details, sensing he’s hit upon another wall neither is eager to dismantle tonight. Caleb’s shoulders are already rising again beneath his hands. He smoothes them back down with his hands, not fully conscious of what he’s done until the motion is already complete.

“Would a bed be better?”

“What,” ask Caleb, glancing over at the bed, mere feet from where they currently sit on the carpet, “order up?” He chuckles again. “I think that you might have a harder time explaining that expense to your superiors than an extra plate of room service.”

“True.” It takes Essek far longer to offer the second suggestion, because even though he fully expects Caleb to refuse, he still has to work up the courage to speak it. “Or, I could try my hand?”

Caleb swivels, his face so close to Essek’s that his bangs tickle the tip of his nose. “...Oh?”

“I’m no professional, but I have some experience.” No need to explain more than that, about the hours spent frantically massaging his own legs in the bathroom, willing the cramps to release in time to make it onto the ice. He knows that he can coax a bitterly stubborn muscle into functioning, and Caleb’s would be far easier than his to manage.

And still, he’s nervous in the seconds after speaking - not for fear that he can’t do what he’s offered, but that Caleb will say no, and be upset or offended.

That he will say yes, and the place that leaves them.

“...Ok.”

Caleb stands, then turns back to Essek, who still kneels on the floor. His hands flutter nervously at the hemline of his shirt, first tugging up the fabric, and then letting it fall back down. “How do you- I’m not sure what the procedure is. What do you need me to do?”

Essek swallows, fighting down the lump of anxiety in his throat. He pushes himself to his feet, and tries hard to project his usual air of confidence, one he does not currently feel.

“It would be easiest if you took off your shirt - if you’re alright with that, of course. I have some oil in my bag.” He goes to fetch the bottle from the other room: massage is still an essential part of his travel regimine, and he keeps it with him at all times. By the time he returns to the bedroom, Caleb is still standing where he was before, but now barechested, clutching the discarded shirt in his hands. Essek pauses at the doorframe, momentarily caught off guard, then shakes himself and continues on.

“Lie on your front.” Caleb does, still watching Essek as he approaches from the corner of his eye, and the look in his eyes is apprehensive.

Essek can feel it too - the difference now. The tension in the air that wasn’t there before. What they did for the last fifteen minutes was accustomed. They’re both athletes, used to having their bodies maneuvered by others for very specific purposes. The practice of guided stretching, while still sensual in the more general sense, doesn’t carry the same implications for them as it might for those outside their world.

But as Essek sinks down onto the side of the bed, and as he ghosts his cool hand over Caleb’s skin and watches the goosebumps rise at his almost-touch… he realizes this is something different entirely, and that they’re both aware of it. Caleb turns his face into the mattress, out of embarrassment, maybe, Essek can’t quite tell, but he knows his own face is burning just as bright as the flush creeping down Caleb’s neck.

It’s intimate, to a degree that frightens Essek more than it excites him.

“A little closer,” he murmurs as he sets the bottle aside and warms a generous squeeze of oil between his palms. Caleb shuffles over far enough that their hips brush, and Essek leans forward and places his hands in the shallow plane between Caleb’s shoulders. The skin there is pale, and freckled, and he traces lines between the marks with his fingertips before running them down the length of Caleb’s spine with one smooth stroke.

Up and down, he moves his fingers through the hollow places of Caleb’s back lightly, not pressing yet. For now, his only aim is to warm the oil further, and to make sure Caleb is comfortable and relaxed. And that when he finally leans over and begins the massage in earnest, his heart will have calmed sufficiently that Caleb won’t be able to hear it beating through his skin.

It’s not as if they’ve never touched before. This is not their first kiss, nor even their first fumble in the dark. But it had been dark, those times. Here, in the dim glow of the lamps over each nightstand - here, in a hotel room only they share, with trays of food set aside and Caleb’s toothbrush by the bathroom sink - here, where he can’t pretend the depths of his feelings aren’t evident to anyone who would dare look - he can’t see Caleb’s face, but he can see his own hands, and what they’re doing, and how much he wants to keep doing it.

He wants this. He wants Caleb under his hands, breathing out slowly as Essek’s fingers find the hidden spots within him where pain festers, and begin to work in slow circles, drawing out gasps of discomfort as Essek presses deeper, and deeper, and deeper still. Caleb arches his back and he runs his other hand down his shoulder, comforting him in a way Essek wasn’t taught, but what he learned to do for himself, when his own agony became too great to bear. A muscle shudders beneath his knuckle, spasming involuntarily, and he watches chills run down the nape of Caleb’s neck: raised goosepimples of referred pain. He knows that sensation well. If one part aches, the whole of the body is affected. You might never be able to name the true source of the pain.

At last, the first knot loosens, and Essek eases off. Caleb visibly melts into the mattress as the pressure releases. “My apologies,” Essek whispers, and even so, his voice sounds too loud for the intimate space they’ve created in this room. “I’ll try to be gentler on the next one.”

“It’s alright,” mumbles Caleb. “I can take it.”

They’re not unaccustomed to pushing through pain, the two of them. One cannot be a figure skater and not learn how. One cannot have lived through what they have lived through, and not be an expert in the subject.

“Alright,” Essek says, “I’m starting again.”

He goes over each half of Caleb’s back in quadrants, feeling for the places where the muscles draw together and kneading the tension out. Each time, Caleb tenses, but as soon as the knot releases, his bones become looser, his body sinking deeper and deeper into the bed and his breath coming in slower intervals, and though at first every wince was followed by screwed-tight eyes and clenched fists, by the time Essek finds the last problem spot, his expression has slackened to something almost dreamlike.

“Caleb,” Essek murmurs. “Are you awake?”

“Mm,” Caleb hums. “Yes.” His voice is lower than Essek has ever heard it before.

“Shall I continue?”

Caleb hums again. “I wouldn’t complain.”

Essek smiles at that, adding a little more oil to his palms and returning to his earlier broad strokes. Caleb’s shoulder blades shift more freely under his hands now, the muscles relaxed and uninhibited. He raises the arm that lies closest to the bed’s edge experimentally, testing the range of motion and watching the way the shoulder glides easily in its socket. Encouraged by a tap on his side, Caleb shuffles a little more towards the bed’s edge, and Essek slides off it. He pulls Caleb’s wrist out until the ligaments are stretched to their fullest extent, then lays the arm back in place at his side. Ideally, he’d want to do the same for the other arm, but Caleb looks so peaceful now, half-asleep in the sheets, that Essek is reluctant to force him to reposition.

He’s not unaware of the scars exposed by their current situation, and no more so than in this moment, as he gazes down at the roughened brown and white patches in the space between wrist and elbow. He’s glimpsed them before, and he knows part of their story, can even guess at the rest. But not tonight. Not here. This isn’t the time for more questions. He doesn’t need to know more than that Caleb is with him, and that he trusts Essek enough to do this, despite his history.

Essek has caused his own share of hurt. He has done selfish things, with no other purpose than to advance his own career. He has been cruel, and uncaring, in order to achieve all he has in his life. But Caleb trusts him, and that is enough to make him desperate to live up to his expectations, unrealistic as they may be.

When he’s satisfied with the rest of the back, only the neck remains. Caleb’s hair is still pulled into the remnants of his elaborate show ponytail, but as usual, bits have begun to fall out. Essek sweeps aside what strands have caught in the oil, caught off guard by how soft it remains. Most skaters with hair as long as Caleb’s cake their hair in hairspray before competition, to prevent loose ends and flyaways. Even Essek’s hair, so carefully gelled at the beginning of the day, would likely crunch like fresh snow under another’s hands. But Caleb’s hair is loose, and just slightly curled at the ends, and for a moment, Essek’s mind flashes with a vision of pulling the tie fully free. Of running his fingernails against Caleb’s scalp, of feeling those auburn flames pour between his fingers, of leaning down and pressing his lips to the place below the ear where hair and skin meet and breathing deep of hotel soap and his own shampoo and Caleb-

He startles out of the daydream with a small hitch of breath. This is not what this is about, he reminds himself sternly. Essek panting after him like a schoolboy is not what Caleb needs. He may ache to try all things new and unexplored, all the things he never thought he would have the chance to experience, but he is, as always, in control of himself. He has to be, or it will all go wrong. In what way, he does not know; the things he fears are undefinable, but that does not make them less of a yoke around his neck.

Essek runs the pads of his thumbs along the spot where he’d just been imagining his own lips pressing, smoothing out a path to Caleb’s shoulders. He takes care not to let his other fingers encircle Caleb’s throat, and so they bat like moths around the empty air, without a place to land. Caleb arches up again, but this time the noise is pleased, rather than pained. Essek shifts his hips, reminding himself again that this is not the situation they’re in. That he cannot read too much into the sound. That he should never assume what Caleb has not explicitly agreed to.

There isn’t a part of the back before Essek left untouched by oil, though the lower parts are drying, leaving the skin tacky but still warm from friction. Essek does one last assessing stroke with the flat of his hands, and finds nothing remaining to fix. He sits back, and considers what to do next.

With Caleb on his stomach, there has been a safe screen of separation between the two until this point. Essek did not need to work hard to hide any reaction of his to the experience, other than in his voice. But there are still muscles on the front of Caleb’s shoulders to work, and an incomplete massage can be worse than no massage at all. He doesn’t want to leave anything tight enough to pull his back muscles out of alignment again.

But then Caleb may see him, and know.

Know what, again, he cannot say.

It takes a few taps on the shoulder to rouse Caleb from his comfortable state, and even then his words are slurred with pleasant doziness. “Do you need me to move?” he mumbles, before pressing his face back into the mattress.

“I’d like to finish your shoulders from the front, if that’s alright.” Caleb murmurs his assent, but makes no attempt to move from his current position. “You’ll… need to roll over. For me to continue.”

Caleb grumbles good-naturedly, but does manage to turn himself over, immediately flinging one hand over his eyes to block out the - thankfully, dim - light. Essek starts to reach for his wrist, meaning to maneuver it back down on the sheets, but after a moment of thinking, he instead reaches over and grabs a pillow from the other side of the bed. Essek tugs the pillowcase off and tosses the pillow itself to the floor, then folds the fabric neatly into a band, which he lays over Caleb’s eyes.

“Thank you,” Caleb murmurs, and another thrill goes through Essek’s body. He can see Caleb’s mouth moving now when he speaks, his lips that are slightly parted, soft and unconcerned as he breathes in and out, as his chest rises and falls with the same rhythm. Essek has never dared to look so long.

He chides himself again. Caleb is blind in his current state, and any unnecessary stares on Essek’s part are as good as leering in this context. This feeling, of towering over someone… it isn’t something to enjoy. He’s always relished the feeling of control, of being above the rest. But with Caleb, Essek is an equal, and so when he offers him control, Essek cannot take pride in having earned it. He can only fear betraying the trust he’s been given.

Essek starts again on the massage, letting the discomfort flow out of himself and into the motion of his hands. With every breath Caleb takes, his collarbone rises to meet Essek’s palms, and he bites the inside of his lip, and keeps his own breath steady, and his eyes focused on the task at hand. His body is a distraction, but one he is proficient at ignoring.

The front takes far less time than the back. Caleb is so loose by now that his muscles want to follow Essek’s lead, and do so without complaint. The only stir Caleb gives is when Essek’s hands stray too close to his windpipe, but even then it’s more a twitch than a flinch, and Caleb settles back down immediately into his previous boneless state once the fingers retreat.

Essek has kept his eyes in line until this point, but in a moment of weakness, he lets them wander down the expanse of Caleb’s chest - slim, but defined muscles, skin waxed smooth save for the trail of hair that runs past his navel, and there, yes - a bruise along his side, as ugly as Essek expected, but already beginning to yellow at the edges. He carefully avoids it as he runs his hands down Caleb’s sides, drawing trails of oil like paint strokes all the way to his hips, just shy of the band of his sweatpants. Caleb shivers, and that’s when Essek notices, though he tried so carefully not to put himself in the position to.

Caleb is hard. The bulge isn’t obscene, but noticeable, and impossible to ignore, once Essek makes the realization. His mouth goes dry, hands stuttering to a stop halfway back to Caleb’s shoulders.

Of course, he knew it was a possibility, that Caleb might be affected in the same way… touch is a powerful thing, even absent of desire, and he knows that Caleb does desire him, at least under some circumstances…

“Are we finished?” Caleb asks without moving his head, sounding regretful, but not displeased.

He must be aware of it. How could he not be, of his own state? But he hasn’t said anything. Hasn’t made any effort to hide it, or to call Essek’s attention to it, as though he’s simply unbothered whether Essek knows or not.

What courage that must be - to accept that others see you, without any shame.

He… he wants to find that courage as well.

Essek reaches up with one hand and removes the folded pillowcase from Caleb’s forehead. Bleary blue eyes squint up at him, half lidded against the light. The other hand, he moves to the sharp bone of Caleb’s hip, fingertips just skimming the edge of the bruise, and then the place where Caleb’s waistband pulls away from his skin. He waits until he’s sure Caleb is looking at him before he speaks.

“Do you want me to go lower?”

He brushes his fingertips again at Caleb’s waistband, so that his meaning is clear. And even still, he hesitates to do it, unsure he’ll be able to go through with the offer, regardless of Caleb’s reply.

He is still so uncertain, about so many things.

“...I wouldn’t complain,” Caleb says, echoing his previous words with a wry smile. It’s that smile, that humour, that utter expression of ease... he only realizes in hindsight, that that was the only thing that would have convinced him to move forward. The only way he would have been alright with it.

“A word, and I will stop.”

“I know.” Caleb’s eyes have already begun to drift closed again, but they open once more when Essek taps him on the shoulder.

“And still, I’ll say it again. A word.”

Caleb’s humoured smile shifts to something softer, almost fond, and he lifts one hand to cover Essek’s and pats it gently.

“I know my limits. You can trust me to say how much is too much. Right now, I am happy for more.”

“...Then I’m happy to give it.”

Moving to Caleb’s other side so he can recline on the bed as well rather than perch at the edge of it, Essek gathers what oil hasn’t yet dried on Caleb’s skin in one hand and reaches down past the waistband, fingers grazing through a thicket of coarse hair before settling on heated flesh. Essek draws Caleb out, grateful that his eyes are closed, so he can’t see the full extent of Essek’s embarrassment. His experiences prior to Caleb had been… limited - which is to say, non-existent - and even if this is not the first thing they’ve done together, he still finds himself impossibly shy, when it comes to it. For lack of anything else to concentrate on, he returns again to Caleb’s hair, leaning forward on one elbow to touch the tresses spooled across the pillow, as his other hand begins to move up and down.

Some of the curled tips are still damp with oil, but most of it is dry, and fans out in a beautiful array of red and copper highlights. He follows their path to the crown of Caleb’s head, where his bangs are swept to one side, not hanging over his eyes. Though his other hand is on Caleb, he’s still seized with the impossible, unfullfillable urge to touch. To be closer than they are, closer than they could ever possibly be. He threads his fingers into the hair around Caleb’s forehead, dragging his nails gently against the scalp, and Caleb tilts his head back into Essek’s hand.

Caleb’s lips part, but his breathing isn’t ragged or hurried. It’s still slow and relaxed, if a little heavier than before. His eyes are closed, but not held shut tight. His shoulders stay where they are, content to remain immovable after Essek’s ministrations, and his mouth still holds a little smile at the edges, and his face, a softness, like what Essek is doing is just another part of the massage.

The atmosphere isn’t even particularly erotic, Essek realizes, and realizes too that the lack of gravity in Caleb’s response is settling his own nerves. There are no shouts of ecstacy or scrambling hands, no open mouthed devouring kisses, or desperation, or even lust. Just… comfort. Just pleasure, without expectation of rapturous release. Just being together, in this way, because they want to be. Because it feels good to be.

Caleb’s shoulders only begin to tense near the end, and even then it’s easy to coax them back down, so that when the final moment comes it’s with a long, slow exhale, and a body more relaxed than before. Essek’s right hand stills, but his left keeps on stroking Caleb’s hair, until at last Caleb’s eyes open.

“I’m very tired,” is the first thing he says.

“I can tell,” Essek replies fondly, then lowers himself down to the mattress, so that they’re at eye level when Caleb turns his head to him.

“That was wonderful.” Caleb smirks. “You have been holding back your skills from me. What else are you hiding, I wonder.” Essek chuckles softly, and Caleb nudges forward and presses a tender kiss to his mouth. “I should treat you as well, hm?”

Caleb turns his body to Essek, reaching down between them to tease at the drawstring of Essek’s leggings before hooking his fingers into the waistband and beginning to slide them over-

Essek jerks to the side, catching Caleb’s hand before it can go any father.

The lights. The lights are still on, and Caleb will see-

“Essek?” Caleb asks, eyes confused.

“You should relax. You said you were tired,” Essek says, and Caleb shakes his head, and begins to move his hand again.

“I’m happy to-”

“Don’t.”

Caleb stops this time for good, and Essek sits up quickly, pulling at his waistband to make sure not a single inch of skin is showing.

“Essek-”

“I trusted you to know your limits. Trust me to know my own.”

There’s nothing but silence for as long as Essek can bear to look away, and when he finally turns to look at Caleb once more, he expects to find frustration in his eyes, or annoyance at Essek for having soured the mood.

Instead, Caleb’s expression is one of quiet understanding.

“Of course,” he says, and sits up too, so they’re at eye level again.

He wants to apologize, but can’t bring himself to, so he sits there, staring at the floor and saying nothing.

At last, Caleb gets off the bed.

“I should shower again, get cleaned off.”

Essek nods, eyes still on the carpet, until his vision fills with the sight of a kneeling Caleb, his face impossibly close.

“Thank you,” he says, “for telling me.” Caleb cups his chin and leans forward, kissing Essek gently on the cheek. The ice in his bloodstream begins to thaw, in slow waves. “Take some time for yourself. I’ll come to bed soon.”

Then he’s gone, and Essek stares off at the light from under the bathroom door for a good few minutes before folding over onto the mattress. The heat of Caleb’s body hasn’t yet faded, and Essek curls into the warm spot where he lay, and pulls the sheets over his shoulders.

He lets the tactile comforts that remain - the smell of oil, the warmth of the blankets, the sound of running water - seep into every part of him, and waits for Caleb to return.

[sternschnuppen-jaegerin]

There is one aspect I really hate of having a mental illness and it seems like too less people are talking about this. It's like noone is taking you serious anymore - yourself included - when it's about physical symptoms. It seems like it's even worse when it's about traumatic disorders - because it's usually linked to a list of physical sensations.

Headache, stomachache, pain in general, nausea, digestive problems, hard breathing, lack of energy, feeling sick, increased mood swings, heart racing, ect.? Here you got a relaxation/breathing expercise and don't try to focus on *your problem*. It won't get better? Well, should we increase the dosage of the antidepressant you already take? Could also be a side effect. Then you'll have to live with it. Try to talk to your therapist about *your symptoms*. You're having *this symptom* since years? Well, seems like you just have a nervous stomach/ect.

On the other hand, there is myself - convincing myself that all the sensations I have have to be part of my *mental illness*, that I'm just hypochondriac. Just when I can't bear the symptoms anymore, I'll visit a doctor (every few months or so) when it gets worse just to get the same answers as usual - that everything's ok and that I shouldn't worry - without getting further in diagnostic.

I can also tell you my story as an example.

Since I was a child I've had digestive problems and chronic stomachache/gastritis/nausea and sometimes even problems with breathing and with fatigue. I had good and bad episodes, but the symptoms really had an impact on my daily living. Later in life I got diagnosed with compex PTSD. In all this years I almost half-yearly visited different doctors to find the reason why my symptoms even seemed to increase while I got in recovery and really improved my mental health. Years passed and I still thought I'd just be hypochondriac.

Then, last year, I had enough and urged my doctor to make a whole diagnostic for my digestive problems. Then I went to the internist and made tests for different malabsorbtions. I even wanted to cancel this appointment actually because I thought that if that testing will also be negative - noone will take me seriously any more - less than already. Well - it was positive. I have a fructose and sorbit malabsorbtion and most likely also a gluten malabsorbtion.

When the doctor told me this, I actually started to cry. Not because I was sad about me having to adjust my nutrition and stuff. Just because I finally had a reason - a physical reason why I've been in pain the last 15-18 years and that all the doctors that ignored my symptoms "just because I ALSO have a mental disorder" were proven wrong. Actually it also explained why the symptoms improved the last years. While improving my mental health, I also tried to improve my nutrition and stuff - because everyone's told me I had to eat properly and "healthy". So I increased the amount of fruits and vegetables and decreased fibre and carbohydrates - actually almost the opposite thing which is healthy for me. The better I got, the "healthier" I ate, the worse my symptoms got and I resignated. But with this diagnoses everything makes sense eventually. Even my breathing problems after eating - which got declined as "panic attacks". And actually - since I have this not-mental diagnose in my medical file, the doctors are talking differently to me about my symptoms and are taking me more serious.

But why do I have to proof that my pain is real?

If I hadn't had a mental disorder in my medical file they would have started a diagnostic but because I have a complex PTSD they wouldn't.

That's my statement - please take your body and yourself serious - even if you ALSO have a mental illness.

[chronicallymissyxo-blog]

Being brave here, so here goes. Caution, in this post, I mention a few things that COULD contain triggers, so this is a warning just in advance. I needed to write today, it helps clear my head, and it helps me breathe. 

This piece of writing I'm gonna call "Living my life with chronic pain & mental health." 

First things first - My name is Meghan, I'm 23 years old  and I am a chronic illness and mental health warrior. I begun struggling with my mental health when I was at school. I was bullied a lot, for my size, the way I look, for wearing glasses, for having spots, I was constantly pushed around and came home with bruises. I was a mess. I begun self-harming. Not a bad self harm, just a surface scratch when I was about 13. I hid this until after 3 years, my father hit me. We had an argument. I didn't know then I was suffering with depression. I was always the misunderstood, people didn't understand me because I was different. But I was taken by child protective services and moved back to my mums. I would get angry, frustrated, I'd have panic attacks but I didn't know they were panic attacks. I was really depressed but this wasn't acknowledged until I was 18. I finally caved in, wrote a note and took a bunch of pills. Because of that, I lost my job, I lost my life. I gained a lot of weight through antidepressants and I was told I was suffering with severe anxiety and depression. Since that, I've been on a rocky road. I started feeling a lot of muscle and joint pain, and it spread across my whole body and it was constant. 

After that, I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome and Borderline Personality Disorder, so I'm gonna explain about these illnesses, and how they affect me every day. I have nothing to do with my parents anymore. Mostly because my Dad hit me and my Mum doesn't understand my illnesses and isn't willing to. I do apologise today by the way, I'm having a really terrible brain fog day. When you’re struggling with your mental health, it can be so easy to mistakenly believe the people in your life hate you. For example, it’s hard to remember when that person you haven’t spoken to in a few days doesn’t reply to your texts, they aren’t ignoring you out of spite, they’re probably incredibly busy.If you can relate to this struggle, you’re not alone. Thinking the people around you secretly hate you or don’t want to be around you is a common experience for those dealing with mental illness. When your brain is being cruel to you, it doesn’t just affect you, it can often extend to how you interact with others. If you recognise what your disorder does to you, it’s a new stepping stone to greater skills and extra peaceful moments sprinkled throughout your day. I feel exhausted and weak at the end of the day, whether I let everything out of hell’s gates or I attempted to find peace. The goal is to make it to the end of your day with the knowledge you are worth it and it’s possible to make it through your misfortunes, even if finding peace hurts. Now imagine you experience losing your best friend, or thinking that's the case when they're just busy, you'd get panicked and upset - imagine that exact emotion at that level of intensity every single day. The gears start spinning your head. The truth starts to be less and less relevant when you experience this level of emotion. Do they even like me anymore? Did they ever? Have they been doing everything they can to show me they don’t want me around, and I’ve just been missing it? I hurt one of them the other day, saying or doing something careless based on too much emotion, like I usually do. Was that the final straw? Are they finally done being able to forgive me like I always knew they would be? You start to push them away to protect them from yourself and from all of the huge feelings. If one of them is your “favourite person,” someone you have become enmeshed with and have taken on their emotions as if they were your own in a really unhealthy fashion, it gets even more intense and complicated. This is the fear of abandonment someone with Borderline feels, on some level, every single day. It’s not them being dramatic. It’s not them looking for attention or trying to isolate you. It’s a level of emotional pain most people will never experience or will experience so infrequently that it stands out in their mind as a terrible day in their life. I suffer with quiet borderline, in which I keep it all in and internalise the feelings, but blame myself for it.

With anxiety, I do little things that normal people living a normal life wouldn't do. I start to obsessively clean and organise things. I rearrange things.  Something as small as the order of my bathroom, taking everything out of the cupboards and putting it back in different places, or even my furniture. Sometimes it stays, sometimes I move it back the way it was. I guess I feel like it’s in a better spot than it was before and if I’m moving while doing it I’m putting myself in better place also. I blink. A lot, And clean like a madwoman. Sometimes, it’s the only thing I can do that allows me to feel in control of something. I also twist my hair, shaking my legs unintentionally, and click my nails. Anxieties lead me into a state of thinking I’m worthless, not doing enough or being good enough. Then that leads me into my depressive, no motivation isolation state. I ask my fiance why he loves me and why he chose to be with me. I often don’t feel like I’m ‘enough.’ If I’m anxious I try my best not to bombard him with messages especially if he's out, but sometimes it's the only thing keeping me sane. Anxiety makes me feel that I’m always bothering people. Even close friends. Just trying to start a conversation with them makes me feel that I’m just being a big bother, so I tend to isolate myself. Since feeling lonely is better than feeling like a bother in my eyes. I see myself mentally retreating and feeling myself go down the spiral, while being able to maintain a good outward appearance. Nobody notices the change. Having to deal with the constant depression and social anxiety along with Borderline, people think I’m ‘doing better’ whereas I’m just good at hiding the hard things. I internally attack myself. Whereas someone with classic Borderline acts upon other people, I attack myself because I prefer to deal with things internally, if I've done something wrong, I internally attack myself then over-react in situations because I feel like the worst person on the face of the earth. It's been described as being a quiet Borderline. I get attached to friends almost immediately and I spend 90 percent of my day trying to make them like me. If I think they are a little angry with me or dislike me, then my world crumbles and I feel like the worst human being alive, like I'm not good enough. If me and Jonny have a disagreement, I dissociate completely which in turn causes over reactions I'm unaware of being I'm not fully aware of what I'm doing. It's easier to dissociate rather than deal with things. 

Dissociation takes me to a peaceful place but on the outside I'm saying and doing things I'm unaware of. It scares me, and it makes me scared of myself. I'd never hurt anyone else, I'd only ever hurt myself. Little things can set me off, which then can cause me to feel really depressed. I internalise things then hurt myself, though I'm 2 months clean of self-harm now. Before that I was 4 months clean. I fear abandonment, but I also fear getting attached to people because I always end up hurt, then feel even worse. Vicious cycle of mentality. I find it easier to shut down than blow up, so I self-sabotage myself. All these flood gates of emotions in my head build up, but I can't let them out, I hold it all in.Then we come to the chronic pain side of things. People who don't understand just think "oh it's just pain and tiredness, get over it." But it's so much more than that. It isn't just pain and fatigue. We can't just take painkillers and hope it goes away. However, those living with chronic pain/Fibromyalgia/M.E know it can cause so many more symptoms than that. Sometimes these illnesses can even cause symptoms that others may see as “taboo” or off-limits. The first thing we cross is sensory overload. It’s hard to handle too much noise, movements, lights, smells, etc. It makes socialisation extremely hard because if there’s more than one person there, there’s already extra movement and sound going on. Add a public place to it, and it makes the system go haywire with brain fog, indecisiveness, anxiety and pain. A lot of times it can come off as rude or antisocial, but I don’t think you could ever understand how hard Anglicization with sensory overload is until you’ve experienced it. I struggle to regulate my temperature a lot too. Some days it's not even hot, or sweaty but I'll be drenched even when I haven't been out. In Summer, unless there is water involved, I try to avoid going out which is a downfall because I have a vitamin D deficiency, so I can never win. It's really embarrassing and I constantly feel like I need to explain myself if people look at me because I'm so sweaty.

Now we move on to the sudden fatigue… I AM NOT LAZY! I’ve learned that I have to pace myself to ensure that I have the right energy to get through the day so if I say no to something or ask you to help with something that seems like an easy task, I’m not being lazy, I have hit an energy wall. Some days I still over do it and I struggle to cope with the pain.  It's almost like constant exhaustion, and the fact that no one wants to understand or comprehend makes it more difficult, especially because we're in pain 24/7. I’m sometimes a little sensitive, irritable and snappy. I don’t enjoy being around people (partly due to sensory overload) and I have closed myself off so as not to hurt anyone’s feelings with my callousness. The constant pain makes me so angry with everything that it’s hard to function.

The worst thing for me living with this is the migraines and the brain fog. I can't describe exactly what it feels like, but what I can tell you is when I get a chronic migraine, I get severe brain fog. Some days I get just migraines, some days I get just brain fog. When this happens, it's almost like I feel disconnected from life, like there's a huge bubble around me. It's like I'm in a slow motion picture, I forget words, forget where I am, and I forget what  I'm talking about mid-sentence. Conversation with Brain Fog is difficult. I accidentally zone out while listening to my fiance and sometimes I drift into a different thing entirely whilst still trying to listen to him. It's like I'm walking through jelly, everything just feels heavy, like there's a weight pressing right on the front of my head. My eyes don't focus. I'm trying to function but it's difficult to coordinate physical movements as you try to go about your day. Some days, you can see straight but everything seems distant. You feel exhausted mentally, everything exhausts you mentally and though you're seeing straight, the world just feels blurry. It's hard to put sentences together, or to think of certain words. It's hard to do little things because you've sort of forgotten how to do them. I struggle with my weight. I fluctuate a lot. I can't help it, I can lose weight but I'll end up putting it on. I struggle with my tummy, and find myself needing to go to the bathroom because something I'd normally eat just upsets my tummy on that day. I sometimes have issues with my bladder.  My bladder is overactive, but I have to drink a lot as I get dehydrated quickly and I get a dry mouth as a side effect from medications. I find myself waking 2-3 times a night to go to the  bathroom. Something less talked about with chronic pain, is genuinely anxiety and depression. Depression is a factor, but it's not the cause of chronic pain. My pain is medically unexplained. Depression doesn't go away because the cause of it doesn't go away. You can keep it under control with medications but people don't want to, or aren't willing to understand invisible illnesses. People will see you laugh, and smile so they assume you must be happy. But they don't understand the true feelings of what goes on deep inside your brain.My life has gotten slowly better over the last few months. Whilst yes, I've been on a low, it's nothing to do with my fiancé or anything. It's just the vicious cycle of emotions and pain that drags me down. 

I love him so much. I know there's times when I'm selfish unintentionally because I don't think, I'm always apologetic if I've upset him for whatever reason. I've always placed him first, even though he never asked me to, but I love him that much I'll worship the ground he walks on. I'm always apologetic if I've ever lashed out and caused him pain. All these little apologies I need to make, because I know there's times where he's doubted my love and affection. I'm just so lucky to have a guy like him in my life, while he doesn't understand my illnesses, he does his best to support me. I know we have our arguments, and our disagreements, and there's been times we've pushed each other away. But being able to look him the eye, and apologise, helps us grow even stronger despite the blips. How do I tell him how much love I feel when I look into his eyes and hear him telling me he loves me? How do I express my feelings for him as there are not enough words to tell him how much I care? If he wasn't here for me, I would be nothing but with him by my side, I feel like I can do anything and be myself. I'm the luckiest girl on the planet to have a fiancé like him, I really am. So yeah. I'm sorry this has been long winded. I just needed to get a lot of things off my chest today. I hope you all have an amazing day.