#chronic pain shite

[sentimental-apathy]

I'm so tired of being chronically ill and not being able to be independent because I live in a society that not only makes qualifying for disability benefits extremely difficult to prove but then doesn't even give you access to the necessary resources that could help treat and improve your chronic symptoms in order to make it easier for you to work a job.

[listen-to-the-inner-walrus]

.

[highlifeboat]

Mia:

Mia def the type to have bad knees and elbows.

All that crawlin up stairs and shit at the Baker house fucked up her joints so bad.

[dragongeek1]

well friends I have officially joined the Chronic Pain Club, it’s not great to be here, there’s a chance it’s only temporary but my gut says ‘hmm many doubts’ and I won’t really know for a couple of weeks anyway until my doctors appointment. So. Been navigating that for four days and well we’re navigating at least

[the-yearning-astronaut]

Send a few good vibes my way if you can spare any. I've put out two applications -- one for a week and a half summer workshop about a new astronomy research method and another for a post baccalaureate research position with NASA. Being accepted into either would be a huge boost on any grad school application and to my CV. But the second would be a full time job out of state. Which means I'd be out of this house.

I need something to change. And soon. Whether it be a full time research position or the CV boost I need to get into grad school next year. Just. Something.

[lancedoncrimsonwings]

When you take the pain meds you've been off for a week or two again and oh BoY

I feel simultaneously amazing because the pain has reduced beyond wanting-to-curl-up-and-cry, and like absolute shite because the side affects are Un Fun ™️

PSA to non-chronically-ill peeps. We do not medicate to no pain. We medicate to make it more bearable. And often the side affects are almost as awful as the pain itself.

I need blankets, warm drinks and for the world to stop spinning whilst I sit at work pretending I'm not about to vomit.

The pain is also not completely gone and one of my ribs is subluxed again.

Aaaaaaaaaaaa

[cripple-culture-is]

Cripple culture is not wanting to go to PT anymore after just six weeks because it feels like your (phys abled) physical therapists don't understand anything about your situation and keep pushing for you to stop using the mobility aids that have increased your quality of life ten-fold.

I don't care if I'm relying on my mobility aids "too much". They want me to not use my crutches as much (which already don't help as much as I need them to) because I'm "strong enough" to not need them, according to them. Maybe my muscles are strong enough, but several times I have not been able to just go across the parking lot to get into the clinic from the car without my knees failing me, especially my bad one, or my hips and/or knees hurting like hell, or both. I'm strong as hell, sure, but that doesn't do shit when I'm scared to just go to the vending machine in my school alone because I'm worried my knee will dislocate or subluxate in the middle of me walking in the hallway for five minutes--which has happened on too many occasions to count. Not to mention my hips subluxating on multiple occasions when I'm not even doing anything--just laying in bed or on the couch on my back.

Or, get this, I went to [big city] and walked around for 45 minutes, and I was already knocked out. Then my family decided that we had to go to the store, and we did, and halfway through the shopping, I was in so weak and in so much pain that I physically could not talk. Once we got home, even after hours of resting, even after a full day, I could not walk more than ten feet without my crutches, and I couldn't walk at all without pain, even with crutches.

That's not even mentioning how, without my crutches, I am regularly banging into walls and door frames, and I have a relatively wide stance because I have no balance when I try to stand "normally" without them and am constantly consciously self-correcting so that I don't topple over. I've slammed my face into so many closed doors not because I don't see them, but because of how shite my balance and proprioception are. I run up the stairs on all fours when I don't have my crutches because A) it helps me not fall over because I feel like I'm about to pass out whenever I stand up, B) it helps me not fall over because I have awful balance, and C) it takes the weight off my legs and makes it less likely that they're going to collapse beneath me, especially on bad days.

I feel like they're so fucking desperate to cure me so I can walk "normally", that they're less focused on my actual quality of life and more focused on getting me to stop the mobility aids that I've needed since seventh grade at least, and only just got in August of last year. I bet that if I told them I wanted a wheelchair (and have wanted since seventh grade because every time I stood up, I felt like I was going to pass out), they would be mortified and tell me that I'm just making things worse for myself. They act like I'm overreacting and exaggerating all of my experiences, meanwhile I haven't been able to write with a pencil--especially non-mechanical pencils--for longer than ten seconds because of how much pain I'm in; meanwhile I have to catch my breath whenever I sit down after walking more than ten feet; meanwhile I can't even use a lot of exercise equipment, especially for the legs, because after just thirty seconds it feels like my bad knee is stabbing me.

(Sorry about the vent, I'm just so fucking tired of this shit. Tl;dr, my physical therapists don't listen to me and act like because I have strong muscles, I actually don't need my mobility aids as much as I do because they personally think, after six 45-minute tops sessions where we barely talk about my abilities in the real world, that I'm basically healthy aside from chronic pain, meanwhile I regularly risk subluxating my hips and knees just walking the distance from the parking lot to the clinic where I go to see them.)

Oh no! I'm so sorry you're dealing with that. They should really know better. As a disabled person, you are the only one who truly knows what will work for you. If your mobility aids help you, keep using them, your PT's reaction and opinion be damned. It isn't about them. It's about you.

If walking without them increases your fall risk, use your crutches.

[scriptospark]

tiny heads up but I like to hoard things and then write them when the inspiration hits me. don't ever feel like you can't send something just because we have lots of things in waiting. i just rarely force my writing + have a lot of chronic pain problems on top of generally having shite mental health so yeah sometimes things will come really quick and sometimes you'll just see my chronically lurking while I either game or hang out.

you can always send another meme. like another inbox or starter or drabble call. that is ALWAYS okay. unprompted things are also top tier s.exy energy. like I love seeing those in the inbox / tags too.

[ladykatakuri]

I am still here !

I am not gone from this site!!!!

So, now that this is out of the way, here comes the update on me.

First of all, mom is doing pretty good considering the fact she has had some health troubles and all. She is still having some issues, which is why I am still there at her place helping out her and my brother for as far as I can. But, she is slowly improving an dgetting better!

When all things seemed to calm down enough, I started to have some trouble with my chronic health thingies and , well... I just really was pissed and annoyed, but hung in there and had my pain medication increased a little, it is helping and going better. Pain attacks and just simple attacks from Fibromyalgia and such are happening, but it is more manageable now.

In november I managed to go to the Comic Con again, and ofcourse I bought me some nice SW thingies ( duh ), including a nice food bowl for Boba Catt and a nice lill harness for the summer time when we go out and about! It was awesome and I enjoyed it while missing my lill love bug Boba.

Back in December we had a huge scare though. My dad was hospitalised and we found out he had some serious heart issues. He needed to get angiaplasty, which is to unblock some arteries at the heart. He has several severly blocked arteries and the surgery was high risk. I was in and out of the hospital for him every day, but he made it! He is doing very well now, but they did warn him that a new atatck might not end well. We take things one day at a time and he seems to have taken the warning to heart and is doing his best.

Now, to end this tale of woe is me with something good!!!!!!!!!!!!

Boba Catt, who is doing very well has also gotten a little brother! In December I picked up this little farm cat who is 3 months younger and the moment they met? They were thick as thieves! In the pictures you will see my beloved redhead Boba and his little brother: Jango Catt !

I really will be back again here and have so much to catch up on and enjoy. You can bet that each time I receive an update on all those awesome stories, I smile and know I will have lots to enjoy once I am back home, have things sorted and can really sit down and read nonstop!

I love you all and miss you all and think of you often!

Here is some pictures of my sweet guys the Catt brothers ! Boba and Jango.

Tagging my ( old ) list: @imabeautifulbutterfly@chaoticvampirejedi@hellothere-generalangsty@cyroku@reluctant-mandalore@uponrightful@zinzinina@saradika@galacticgraffiti@ashotofspotchka@dindjarindiaries@dinbeskarbaby@djarrex@djarinsbeskar@rowansparrow@photogirl894@rigelmoonshine@rigel-the-moonstrider@nahoney22@loth-wolffe@neon-junkie@bobafetts-princess@cyarbika@charnelhouse@zoeykallus@kin-rokku@jgvfhl@honestly-shite@here-comes-the-moose@dindjarindiaries@firstofficerwiggles@fictional-men-ruin-lives @ladysongmaster @lozalot @moonstrider9904@lorjukka@m-o-o-n-s-g-o-o-n-s @rain-on-kamino @monako-jinn-stories @middimidoris @wild-karrde @cross-my-heartt @arctrooper69 @eyecandyeoz @marierg 

[mossynebula]

hope ur k n ronan had a good 4th - fellow trc fictive

Aww thank you! We didnt actually do much than lay in bed and sleep, mix of source memories and body chronic pain shite

Was Hosts (bodies) little brothers birthday too so family was round and got to eat cake, if K is feeling better we might do something for him today (5th)

But its always good to meet fellow trc folk! Hope yous had a good/alright 4th too!

[stiles-wilkolak]

I didn't usually post my personal life much, but I feel the need to share this part since it's been a struggle for most of my life.

I've had a plethora of issues including joint pain, partial dislocations, headaches, anihidrosis, severe heat intolerance, random bouts of nausea, IBS, ulcers, bleeding issues, sensitivity to certain meds like antibiotics and pain meds and SSRI meds,just a bunch of weird shit, right?

Some I dismissed as blood pressure issues since I've had chronically high blood pressure, some cuz of my hemophilia.

My new doc is incredible, he was just for my ADHD but has become my doc for everything cuz he listens, genuinely, and takes my opinions and suggestions seriously.

I came in a few months ago with joint pain, mostly hip, so severe I couldn't lift my left leg, so he got me some steroid shots and ordered tests. All we're neg, some low vitamins and usual shit like low kidney health. He's been trying to figure what direction to go in next. I stumbled across an information video on EDS, Ehlers-Danlos syndrome and started researching it.

Today I broke down and got wrist braces, joint pain has gotten worse in my wrists and shoulders.

Brought up EDS to my doc yesterday and he was excited, "this could really be what's happening! I've been thinking autoimmune or autonomic dysfunction as well so we're on the same page!" So my doc is gonna help me see if Ehlers-Danlos syndrome is the source of my issues, it would explain all the weirdness. And with my family having hemophilia and van willebrands and POTs it's really not a far stretch.

He also thinks I've had POTs my whole life and it went undiscovered cuz I assumed the symptoms were from the high blood pressure and had shite doctors before who dismissed my symptoms any time I tried to ask.

It's so nice having a doctor listen and take my opinions and suggestions seriously.

A good doctor makes all the difference.

Poor guy, he always is so tired and still does his best to help me.

[weirdly-specific-but-ok]

Sorry the data here is shite, but I wanted to tell you that even if it feels impossible, things are going to work out. College is stressing me out too. Technically, I am enrolled in a college program. But you'll find little things, niche groups, like how I found you and the maggots. I hope your leg heals, as a chronic stair faller I know the pain. Just know that we are all here for you, no matter what. I know it sounds cheesy but I'm being honest. Everything is going to be okay. Not great, but okay.

Love you, Asmi.

Thank you Az <3 I love you too, so much. I hope you're okay. I hope I will be.

[mariavolosincu]

God dammit so 13 year old me decided to eat in a disordered way and now I have to deal with chronic constipation. An some people don't realize how much laxatives hurt. And the thing is that staying 15 days without shiting is not fun and it's also painful. At this point I lose in either way so I will let God fix it because if I fix it I'm going to rehab. Rant over. Thank you for coming to my Ted talk. Luv yall

[gon-and-killuas-mother]

i am attempting "light therapy" to help fix my sleep schedule and i'm cranky about it

my aunt, who's a neuropsychiatrist (one of the few women in her field and fairly well known at this point, don't know if anyone's heard of Dr. Jo Cara Pendergrass but damn she's cool) was in town this week to look after her mom post-cataract surgery

Cara is probably the smartest person in the family, all things considered

(my brother and I give her a run for her money but neither of us intend on getting a goddamn PhD lol) (also my dad wouldn't appreciate me saying that, he is also pretty smart. but like. he's got intelligence, he's just lacking in wisdom)

ANYWAY. of all the people in the family, Cara is the person i rarely have to explain my illnesses to. usually, i have to tack on a brief description of it anytime i say "yeah i have EDS and fibromyalgia and IBS and--"

but last time i saw her over Christmas, i told her the diagnosis and had my script prepared to explain, but she just went "Oh yeah Ehlers Danlos -- wait. Oh."

her face did the thing where she was processing new info at light speed by blinking and cycling through several expressions as the pieces of the mystery that is my chronic ailments settled themselves in place

unfortunately i wasn't at the point where i was comfortable enough to tell anyone how miserable and in pain i was, that was something i put off another couple of months before i confessed to Nana that i'd become a grocery thief and was on my way to being homeless. that's also around when my brother asked my permission to share my story with the family, because he knows how difficult it is for me to admit how much i'm struggling.

i'm rambling tbh but only to keep me awake and sitting outside long enough

ANYWAY

so Cara was here this week. i went to visit the other night. we always have really interesting conversations about our brains and genes and family shite, i don't think anyone other than my brother and i can actually hold a conversation with her about that kind of shit.

i did NOT go there just for advice, but when i told her how much trouble i've had getting out of bed before evening, she gave me a couple of tips that i'm now trying out

1). the 24-hour sleep deprivation strategy

it sounds like a nightmare to me, but apparently has supporting evidence that, at least in the short term, resets your circadian rhythm.

if you've ended up awake hours past your desired bedtime, then instead of simply going to bed late, it's advised* to keep yourself awake throughout the rest of the day until the next bedtime.

( * WITH CONSULTATION OR SUPERVISION OF A DOCTOR)

the reason this is supposedly effective is that the longer you stay awake, the higher the sleep pressure becomes (sleep pressure is just your body's signal to go the fuck to bed, which is something i'm intimately familiar with as it's a constant companion of mine regardless of sleep hygiene). the higher the sleep pressure the easier it is to fall asleep and, ideally, the better your sleep becomes.

Cara did emphasize that as far as we know, it's only a short term strategy. either we haven't done enough studies or we haven't figured out how to apply it to a longer term solution.

2). Light therapy

i was already somewhat aware of this but not to the extent that Cara explained.

the trick here is to force yourself out of bed (if you're able) and sit outside. preferably on sunny days. she said this even works if you end up falling asleep outside anyway, you're still absorbing sunlight.

there's no immediate change, as it does take a few days or more to notice any improvements (this checks out, as i am still drowsy as fuck) but doing this daily or semi-daily gradually convinces the body and brain to be awake earlier.

it's one of those things that a lot of disabled folk like me, especially those with fucked up sleep, would hear and get annoyed with, because we've tried so many different strategies that have each failed one way or another. and hearing "go outside" just reminds me of my mother and every yoga enthusiast insisting on all natural medicine, which understandably raises my metaphorical hackles.

but Cara, again, is the smartest person i know. i'm much more willing to take the advice of a neuropsychiatrist over a yoga mom, despite them actually agreeing on something.

and also? i do miss the Sun, quite terribly.

so if, by sometime next week, i'm magically able to wake up earlier with less struggle, i will let y'all know. i'm gonna be cranky about it, especially if it actually WORKS, but as the neighborhood mascot of Sleep Deprivation i think i'm a pretty good indicator if something like this is legit or not.

｡⁠:ﾟ⁠(⁠;⁠´⁠∩⁠`⁠;⁠)ﾟ⁠:⁠｡

[kimmimaru]

Bad few days with my chronic fatigue. Summer always makes it worse. I feel like I've been run through a washing machine, hurt everywhere and just exhausted. Ugh. I want to just sleep for the rest of the day. Just finished walking both of my dogs, which I have to do separately. Its the child-beasts first day back at school after summer hols so had to take Rocky to school with us, rescued someone's dog from getting run over by a car as it ran in the road by luring him over using Rocky. They know each other and get along great so just calling him was enough (his name is Doug, Doug the dog...amazing). Then I got home from walking Rocky, had to take Loki out after for a quick walk while its cool enough. Loki is a pain in the ass as he's big and likes to sit in the sunshine and just chill for a while, I couldn't let him do that because of the heat. And I have chores that need doing, washing up and boring shite like that. I don't want to and may just lie on my bed with my fan on until I stop feeling like a soggy, sweaty old sock.

[gutsngloria]

Why must me bones feel like shite? 'm jus' a wee lil lass, why would ya feck with the bones of a wee lil lass? Stupid chronic pain...