#chronic fucking pain and a never ending list of diagnoses at 19 and now i may have lupus

[greyves-under-fire]

the grief feels like a poison that runs so deeply into me, into my history, into my future, and into my right now that it feels like it's become a part of my blood.

I keep waiting for it to not be so hard, and to not still create this unbearable ache in my chest that causes panic over worrying my heart will start skipping again.

but even trying to process anything to as much of an extent as i can feels so consistently hopeless when the brain fog caused by an immune system immune to working properly makes sure i never can.

Idk, i'm trying to do my best. I'm really trying, and i know that's all i can do.

but. fuck.

Having dreams crushed by disability is such a deeply traumatic experience, the realization that you’ll never be able to do the thing you want most in life because your body isn’t able to handle it. Waking up the day after you received the news and feeling that utter sense of heartbreak in your chest. Watching people go on and do those things while you sit on the sidelines, forced to watch bitterly. That feeling of being trapped, imprisoned by your inability to do what you love. The grief, the anger, the sadness. All because your body doesn’t allow you to.

[batfam-imagines]

Air

Prompt: Hey I don’t know if your taking requests but if you are I had an idea form the writing prompts list. With 1,19 and 20. Like your Oliver Queens daughter (so basically Roy’s sister) and you have a lung condition and have an oxygen thing - like the fault in our stars-. your together withJason and they come home from patrol or something and see the reader cuddled up in a blanket fort watching something like to all the boys I’ve loved before on Netflix. And they get all protective over if she’s taken Her medications and stuff and she gets all ‘sit your asses down and cuddle with me’ sorry it’s a terrible request xx

#1: “If you’re not nice I won’t let you in my blanket fort”

#19: “I am not cleaning this up.”

#20: “Stop with the puppy dog eyes, that’s cheating.”

Authors Note: So I don’t CF, but I know and have helped treat several patients with it. I’m sorry if I offended anyone, but I did my best not to. I really hope this fulfilled your request, Anon!

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Having cystic fibrosis isn’t the easiest thing in the world, especially since you were diagnosed a little later in life. Between the lung physiotherapy several times a day, the frequent infections, and the constant worry from your family and your boyfriend’s family. It’s like they all think you’ll drop dead tomorrow just because you need to be on oxygen and can’t be around anyone who’s sick.

“Are you sure you’re gonna be alright, Y/N? You haven’t even done your treatment yet, I can postpone going out for a little while …”

You roll your eyes, “Jay, I’m pretty sure I know how to put on my own vest. I did have to do this before you and I got together. Dad made sure that Roy and I knew how to do this just in case he wasn’t there to help.”

“I know that, but I still don’t like leaving you here alone. What if you choke while you’re coughing up the mucus? Or what if you need something while you’re hooked up?” Jason hovers over you, making sure that the oxygen is firmly in your nose before he helps you slide the vest on.

“You’re even more of a mother-hen than Roy is, you know that? I do know how to take care of myself, I’m not a child” Flicking the machine on so it makes your entire torso vibrate as you glance up at Jason, “If you really want to feel useful, go get me a glass of water for afterwards, and hand me the remote, please?”

Jason’s smile softens, and he leans down to press a kiss to your forehead, “Alright, babygirl, whatever you want. Remember if you need anything, I’m just a phone call away, and Roy’s in the city tonight, so he might be coming over after Patrol”

“Perfect! Have all the guys come over! I’d say have the girls come over too, but Cas is in China, Steph is in San Francisco, and Bab’s is having a family night with her dad”

“I will, Dick has been buggin’ me about stopping by, and Damian has been threatening to kidnap you and move you to the Manor, even the Replacement has been bugging me for a visit. I even made sure he went to the doctor and got a clean bill of health before he was allowed come over.”

You can’t help but roll your eyes at Jason’s paranoia, “Just because he doesn’t have a spleen, and gets sick easier doesn’t mean he can’t come visit whenever he wants.”

“I don’t want you to get sick, Y/N. Last time you ended up in the hospital!”

The vibrations from the vest make your voice come out a little warped, “I’m always gonna end up in the hospital, Jay! I have a chronic disease! That’s just what’s gonna happen!” You roll your eyes at Jason’s crossed arms, “You’re such a pain in my ass, Jay. Go out on Patrol, I’ll be here when you get back and we’ll watch movies with everyone, okay?”

“Alright, fine. Whatever you say, babygirl” He leans down and presses another kiss to your forehead before sliding the window open and swinging out of it.

--

It’s around two in the morning when everyone finally swings in through the unlocked living room window.

“Dude, I know you’re always saying that you Bats don’t need any help, but an eye in the sky is always something good to have. Just as backup, you know!!”

Dick rolls his eyes at Roy, “If we let anyone with arrows into this city, B would have us all sent to Arkham for going insane!”

“Father would never allow someone trained by Queen to protect this city, it needs only the best vigilantes” Damian rolls his eyes at the red-haired archer and starts peeling off his domino mask.

You let out snort, “If you’re not nice I won’t let you in my blanket fort, Dami.”

Roy grins, “Thanks, little sis! At least I know someone will always have my back! Us Queens need to stick together around all these damn Bats”

“Did you seriously drag all the cushions off the couch, and drag all the stuff from our bed to make your fort? I hope you know that I’m not cleaning this up for you”

Knowing that they won’t work on your boyfriend, you turn to look at your brother, “Aw come on! Stop with the puppy dog eyes, that’s cheating!” Roy groans and collapses inside the fort with you, “Fine, I’ll help you clean-up tomorrow since your boyfriend’s an asshole”

Tim snorts, “Everyone knows Jason’s an asshole, Roy, come on that’s old news”

“What did I say? Be nice, or you get kicked out of the fort. Everyone is being kicked out anyway, I’m not cuddling with a bunch of people still wearing Kevlar”

All of the boys settle in around you after changing into more comfortable clothes, “Did you take your meds today, Y/N?”

“Yeah, Dick, I did. I have reminders in my phone to take them, you guys really don’t need to worry about me. And yes, Roy, I already used my vest tonight, so you don’t need to worry about that either.”

“I make sure she’s taken care, guys, I’m not just going to let her die!” Jason rests his arm over your shoulders, being careful to avoid your oxygen tubing.

“You guys do realize that I’m a functioning adult that can take care of her own treatment, right? I pinky promise that I take care of myself and am doing my best to live” You turn back to the TV and cue up Netflix, “Now, stop worrying about me. I promise I’ll let you know if I’m about to die, but right now I want to watch cheesy Rom-Coms and cuddle”

“Alright, alright. We’ll leave you alone tonight … as long as you drink one of those nutrient shakes that the doctor gave you” Tim smirks when you let out a groan, “Come on, I’ll make popcorn too”

“Fine! If it’ll get you guys to leave me alone! Geeze, you’re worse than my Dad sometimes”

Roy lets out barking laugh, one leg reaching out to nudge you, “No need to be insulting, Y/N. Go and grab the snacks, Tim, we’ll wait to start the movie for you”

“Hurry up though! If you take too long I’ll fall asleep before we even start the movie”

--

Y/N falls asleep half way through “To All the Boys I've Loved Before”, curled up on her side and partially in Jason’s lap.

“Just turn it off, man. I’m about to pass out and you know she’ll be pissed if we watch the ending without her, at this point we’ll have to watch the whole damn movie over again” Roy has already spread himself over the bare couch with one of the blankets from the fort.

Dick nods, “He’s right, Tim, just turn it off and go to sleep. It’s almost four, so that doesn’t mean sitting up and working on cases, that means actual sleep.”

“I demand pancakes for breakfast if I am to sleep on the floor like a heathen. Todd, do you have the ingredients for pancakes?”

“I don’t know, Dami, maybe? I’ll look tomorrow morning and if I don’t we’ll either go out for breakfast or I’ll run to the store. Is that acceptable, little prince?”

“I suppose it is.”

“Whatever, demon, everyone shut up I’m trying to sleep” Tim puts a pillow over his head and curls into the smallest ball possible.

“All of you better shut up. If you wake up Y/N I’m gonna kick your ass. Got it? Good, now go the fuck to sleep”

“So grumpy, Little Wing, geeze goodnight”

Soon everyone is asleep, somehow touching at least one other person. No one is awake to notice the dark shadow that hovers briefly outside the still unlocked window, checking to make sure everyone he cares about is safe before he turns in for the night.

———————————————————————————–

Let me know what you think! Send any ideas or requests you have to my Ask Box!

[whatzappening]

The Zappadydoodah

Hello! I’m Jenny – I am 38, married to a beautiful (in all the ways) lady for five years. We have a son who is nearly two and another baby on the way. I’m writing this down because I’m in a transformative time of life, with deliberate hope for change occurring around some treatment for my Stuff. I’m feeling super overwhelmed, massively restless and thought it might be a) handy to channel it all into a writing area, and b) useful for anyone else in a similar sitch.

The Stuff

So here’s my stuff. Fibromyalgia since 2005, Chronic Fatigue diagnosed since 2011, Depression and Anxiety diagnosed since 2012 but probably always. Definitely always.

Here is a list of some of the things I have done to try to manage/fix/deal with my stuff:

SSRI’s

Meditation

Herbal supplements

Naturopathy

CBT

Psychotherapy

Protein shakes

Exercise Therapy

Counseling

Hydrotherapy

Acupuncture

Pilates

Yoga

All of the Elimination Diets

Gym

Walking

Alexander Technique

Kinesiology

Psychics

Hypnosis

A thousand doctors

Graded Exercise Therapy

Narrative Therapy

Rheumatologist

Physiotherapy

Massage

Reiki

All the other stuff I can’t remember

Short of fish slapping that’s all I can remember right now (I did not try fish slapping). I want to be clear that a lot of these things have been extremely helpful in managing my life and keeping me as upright and mobile as possible. The ones who promised me that they could fix me, did the opposite and caused catastrophic setbacks, in every single case. I don’t feel like me listing which ones are which is helpful because every human reacts differently to different options depending on who they are and what their experiences have been.

I will say, however, that my current team members around my health are counselor, physiotherapist, massage therapist, acupuncturist/TCM practitioner.

So that is my stuff. Read on if you fancy!

What’s happening now, and how and why?

So a couple of months ago we were taking our kid for an outing on a Sunday morning. We thought we’d head to a local market about half an hour’s drive and visit our friends who were selling food there to raise money for the local wildlife shelter. Cute! Fun Sunday outing! He fell asleep five minutes from our destination so we kept going, because sleep is golden and we had no place we had to be, and ended up driving past my sister’s place.

We hadn’t seen them for a little while (she lives there with her daughters who are 19 and 20, both at uni this year so sometimes not there) and pulled up in the driveway, waking them up because they don’t live with a toddler and get to sleep in. I have no bitterness about this, it’s just something worth mentioning.

Her youngest daughter, my niece has had severe fibromyalgia for several years now. The list of things she’s tried are varied and include things like hospital stays, ketamine infusions, morphine – and they didn’t help. Morphine didn’t touch the sides of her pain. I won’t go into too much detail but her quality of life was non existent and she was cut down at her best and brightest. It’s horrific and unfair and all the other things. I have not seen colour in that kid’s face other than green for a number of years.

When we rocked up, she was pink cheeked and was about to go out for brunch with a friend.

Let me pause there – every part of that sentence was not possible for years. So after mouthing OMG at my sister when my niece wasn’t looking, we sat down at my sister’s dining table after her she went out with her friend and my sister took my hand. She teared up and said will you please, please think about trying this thing. It works. Look at her.

And then my heart skipped a beat. It had literally not occurred to me that anything could work. That was certainly not my lived experience. I knew they were trying a thing, and I was ready to support them as much as I could (and knowing that sometimes I need to keep a stronger boundary, to protect my sense of self and eschew self pity) when it inevitably didn’t work and their desperation in scrambling for something, some relief, would continue.

“things don’t work for people like me”

That was the sentence that was ringing in my head, loud and clear as a bell. I had believed one too many times when someone had promised me they could make it all better, and then as time went on the prices would increase and the narrowing field of ways I could be pressed in on me and the possibilities vanished when things that weren’t actually physically possible for me to do (and no, I couldn’t push through or engage in mind over matter, get fucked if you think that’s a thing that can happen in this situation, frankly) and I was a bad, naughty client who wasn’t complying so their promise no longer applied. By then they had all of the money and my sense of self was at rock bottom. Snake oil merchants for the win.

Four or so years ago I had a massive breakthrough with a fabulous narrative therapist I was working on my health management with. One day she asked me how it would be if I could just accept my limitations and not place pressure on myself to be capable of anything more than I could do. That I have a serious illness that impacts every single area of my life, and the more I ignore it the louder it gets. How would it feel to accept that?

Because I was ready to hear it, and because I trusted her, and because I knew everything I knew by that stage, I took it in and really imagined how it would feel. And my shoulders dropped about fifty metres and I felt relaxed and calm.

That year I had my first winter since my diagnosis where I didn’t have a severe depressive episode. I rested more, I kept myself warm, I didn’t push myself to not be such a big whiny baby. I cared for myself. I didn’t pretend I wasn’t unwell. I acknowledged it and acted accordingly. Bloody hell – it was absolutely life altering. I will always be grateful to that therapist for that revelation. Then she went and decided to help the refugees on Manus Island with their myriad of psychological issues resulting from trauma and abuse, which I understood but felt a bit miffed about in a selfish way.

So that huge shift had informed the way I went about caring for myself. What a relief to not feel the pressure of turning every stone over just in case. Wearing myself out going to All The Appointments. Never stopping because if I did that meant giving up.

Stopping is brilliant and should be compulsory for all people in all situations.

So now I have my team around me. Every member is crucial and I’m pretty happy most of the time. I’m a great parent and wife and friend and relative, I think.

The thought of messing with that? Oof. SO risky. Terrifying. But my sister held my hand and asked me to think about it. So I did.

I don’t mean to vaguebook atcha. The thing is called TMS and is usually provided to people who have severe depression. The kind where no medication works and everything is hopeless. It’s non invasive, and uses magnetic thingamebobs to retrain the pathways in your brain that have died off due to illness. So for people with fibro, the pathways of normal sensation are often replaced with pain pathways. Recently when I was extremely distressed about a work situation and I could not deal with what was happening, my brain told me that whenever I took a step I was at risk of my ankle shattering. My ankle was not at risk of shattering, but the pain felt extremely real and terrifying. And so on and so forth. So the TMS thingo (and to be honest it’s a little bit tinfoil hat to avoid the government reading your thoughts) is a metal cap that goes over your hair on the place where the specific neural pathways are, then magnetic waves are sent through the thing which stimulate your brains. It’s habit forming, so doing it once a week isn’t going to do squat. But 3-5 zaps a week (each zap is 30-60 mins) will be highly likely to have an impact. 5 will work faster, 3 will still work the same amount but will take a little longer.

They recommend about 30 sessions and then you can taper off and see how you respond. Here’s the kick. I live 90 mins from Melbourne CBD and it’s the closest place I can go for treatment. A three hour round trip a day isn’t possible for me (both in terms of fatigue and available free time).

My work is quite seasonal so I had planned to close off my books from May for a few months, and we were all going to go as a family to rent a house for a few months and just smash it. But then we both realised my wife’s pregnancy wasn’t getting easier and sooner would be better than later. So the compromise is as follows:

Kicking off this month with a week together as a family for calibration and a couple of treatments, and then I’ll head to Melbourne Tuesday morning til Thursday middle of the day allowing me three zaps (Tues – Wed – Thurs) and on the way home I get acupuncture so I can decompress a bit before arriving for family time at home and don’t just dump all my emotions all over them. I’ll have had time to process and chat a bit. Fridays the kidlet is in daycare, Saturdays and Sundays as per usual, Monday with the wee fella. Tuesdays drop him off at daycare late on my way in to town. We’re getting some help with kid wrangling on Wednesdays from daycare pickup to bedtime so my beautiful pregnant wife won’t have to be too exhausted after working all day. There’s a lot going on. Did I mention we’re married but not legally so we’re going to do that in a few weeks as well? It’s a big time.

I turned it all over and over and over in my head, spoke with some key people and most helpfully talked with my love. You don’t owe us anything, she said, and meant it. You try it, you don’t try it, we love you. Your body and health changes, or doesn’t, we love you. If you try it and it doesn’t work and it creates massive turmoil for you then we cross that bridge. You’ve dealt with worse.

So forward we go.