#because i'm in a very bad fibromyalgia flare

[sapphic-moon-child]

Chronically Ill Truths

Fibromyalgia

Larissa x Wife!Reader

Chronically Ill Truths

Fibromyalgia - Larissa x Reader

Chronically Ill Truths

Fibromyalgia - Larissa x Reader

It was truly the worst time of year for you. The warm summer days that eased your joints in the early sun were fading and the chill of fall was setting in. You knew a flair was coming on when you went to bed the night before, but when you woke up it was so much worse. You kept a bin next to the bed for bad pain days, and today was no exception. Rolling over your joints ached and cracked as you're swollen hands quickly reached for the bin. Retching almost painfully, you felt your hair being moved from your face and a soft hand rubbing circles on your back. Once you were finished the bin was removed from your shaking hands and taken care of quickly. You could hear the water running in the tub and the smell tea followed.

“Come darling, let's try to get a head of this and ease the symptoms while the needs kick in.” Larissa said sweetly, handing you your purple cane and helping to steady you on your feet. This woman was your rock, and you loved her. When you first came to Nevermore as an English teacher you only had mild symptoms, now 5 years later you were happily married to Larissa and together you co-taught your classes allowing you to still work and enjoy your passion even with your disability. The worst of your symptoms started two years ago, it was just a lot of swelling and aches. Now it was full blown flair ups, that sometimes lasted for days and on the rare occasion a week or more.

When a bad flare would start, Larissa would help start an IV of fluids to help ease your symptoms and push Your meds if you needed them. She was insistent that she learned how to do it, so that you could have them at home instead of the hospital. After a soak in the hot epsom salt bath and a cup of ginger tea she helped you dress in something comfortable and settled you back in bed. Starting one of your IVs she asked if you wanted some pain meds to help, you nodded and were grateful for her help and dedication. “Riss, I think I'm going to need my compression wraps” you told her, admitting defeat to the hell they were. She handed them to you and prepped your meds before pushing them through your IV and flushing it. After getting one leg wrapped in the tight compression wrap, you were exhausted. Handing her the other she took it without complaint and wrapped your other leg for you. The relief was worth the trouble of these stupid things, but you didn't care right now. “Can I have some Zofran please?” You asked, still feeling nauseous. She gave you a quick kiss and retrieved the minty tasting pill for you before placing it on your tongue to dissolve. After she did she set the flow rate on your IV and climbed into bed next to you. It only took about 5 minutes before you were so tired you couldn't hold your eyes open anymore. The fatigue set in and you easily succumbed to it.

When you woke it was midday and Larissa was gently stroking your cheek. “Hello darling, I brought you something to eat. It's time for some more meds too. You noticed she replaced your IV bag with a new one and it was on a very slow drip. Smiling, you thanked her and ate as much as you could of the cheese on toast and tomato soup she made you. “I have your pain meds as well as some anti inflammation meds and some more Zofran for you if you want it. I noticed you were perking in your sleep a bit too so I grabbed your spasm medication too.” She set the different syringes of meds down on your nightstand as she sat on the edge of the bed. “What would I do without you? You could have fallen in love with someone normal, and instead here you are taking care of me.” She almost looked hurt at your words. “Darling I married you because I love you, that means all of you. Good, bad and ugly.” You leaned forwards and gave her a soft kiss before settling back on the pillows again as you watched her push your meds again and flush your IV for you.

The day went on with lots of love and patience from your wife. You were blessed that she was compassionate with you, always making sure if you needed her she was there for you. You dropped your mobility aids and she would pick them up without question. And even during the night she would feel you start to get up and would wordlessly come around to your side of the bed and help you to your feet. She never complained, you hated how much like a burden you felt. She would just scoff and give you a kiss and tell you how much she loved you and that you were never a burden to her.

One of the things you most loved was how much she came to bat for you with your doctors, none of them seemed to take you seriously thinking you were just another drug seeker. She would tear each one a new one and bring your medical binder to slam in their faces if need be. She kept a detailed record of everything for you, calming her own anxieties in doing so keeping it all put together as fine as her updo. One doctor made the mistake of telling you on one of your bad days that it was all in your head and to try meditation. That was a mistake. “You mean to tell me that the pain, tears, swelling of her joints and other various symptoms are just a figment of her imagination? Well if that’s the case I’d rather like to take my stiletto to your ass and see how you think that imagination feels!” you still giggle over the memory of that poor doctor's face when Larissa was done with him. She could be down right scary when it came to the ones she loved. She was your lover, protector, wife, and blessed caregiver, and you loved her with everything you had in you.

Your students were also very loving and compassionate to you, they were always eager to help around the classroom and stay after class to help you prep if you needed it. You and Larissa thought of them like your own and had become mother figures to most of them. Your disability and adversity to it was the reason one particular girl came to you and Larissa with her own issues showing signs of the same chronic disease that plagued you. When you found out she had worthless parents, Larissa and yourself were determined to make sure Amara got the care she needed so she could thrive. When the diagnosis came back true, she cried and cried. That was when she told you she had lived with the pain for six years, her parents accusing her of attention seeking. Larissa made sure her medicine was picked up like clockwork every month personally and she had your cell numbers if she needed you anytime day or night.

There were a few times she was unable to go to class and would spend time in Larissa’s office doing make up work or homework under a heated blanket with a cup of hot cocoa. The girl thrived after she was given the help she needed. Her grades improved and she graduated in the top of her class, that was two years ago now. She stayed at nevermore as a dark arts teacher, and when she got married to a lovely gorgon boy a few months ago, her own parents decided they wouldn’t be attending. She didn’t mind though, because she walked down the aisle with pride having both of you on her arms guiding her and giving her away. This is what love was. This was acceptance. She was so worried that she would have a flair the day of the celebration and wouldn’t be able to enjoy it, you remember it like it was yesterday. Kneeling down to her eyes where she sat, you spoke softly.

“Your disability doesn’t define you, anyone who thinks it does can go to hell. You are strong and just as able as any other girl, your mum and I will be there with you and will hold you up if we need to, just like we did when you walked the stage at your graduation. You will never be alone my love, you have us to lean on when your own feet can’t hold you up.”

*********

My Groupies: @aemilia19 @lostmyotheraccount @shyladyfan @dingdongthetail @barbarasstar @maxfanartfan @no-phrogs-in-hats @weemssapphic @cissyenthusiast010155

[thedisablednaturalist]

Office disability culture is so fucked in environmental science and fieldwork. Like the mindset that to do the job you have to be in perfect physical health or you should just quit. Like I'm not talking about something that is 100% physical labor here, everything is mostly achievable with aids and you don't need to be able to do every single thing. But there's this weird like..pride..that my older coworkers have. They work out in the gym and brag about how many reps they did. They tease each other for having medical issues. They don't ask for accommodations because they fear that their legitimacy will be hurt. That it means that they can't do their job anymore. That they won't be TRUSTED to do their jobs anymore. That it will get taken away.

So they FURTHER hurt their bodies by not resting, not taking breaks, not using ergonomic equipment, not using safety equipment. Not drinking enough water. Not using mobility aids when they are so old that it's supposed to be acceptable. They don't use the scooters at the grocery store, they don't use their handicapped placard, they don't use knee pads or compression gloves.

And here I come in, 24 years old, looking perfectly healthy. And I use walking sticks, I sit down a lot, I have my care bag, I have a ton of gadgets for making fieldwork more comfortable, I have boundaries and limits, I wear braces and knee pads and compression gloves. I use my handicapped placard.

They react in one of two ways:

1. How DARE I. I'm so lucky to be young and no one sees THEM having to do all those things (literally nothing is stopping them but pride). Like old man if you need a break take a fucking break. I'm not going to hurt my health to make you feel better about hurting yours. I'm not risking a flare up to spare the 65 year olds feelings. Im gonna take my break and use my equipment cause my boss doesn't care as long as the work gets done. I'm tired of glares from 100 year olds making themselves struggle across the parking lot when they could also be using the fucking scooter. (I never take the last scooter, there's always another available. Also it's not my fault if walmart only provides 2 scooters for the whole store).

2. It shows them its okay. Its okay to need aids. When I first showed up at my job it was very...macho..everyone was afraid of seeming old (theres probably only 3 of us under 30 in the whole department, most people are at least 50, mainly 65 year olds). Then they saw me using my walking sticks, taking my medicine openly, bringing a chair with me when working away from my desk, using my TENS unit. I overheard one lady ask her granddaughter what fibromyalgia was (apparently she had spotted my pain tracking journal).

My older coworker with a bad knee got a walking stick like mine and beamed when she showed me. The grandmother uses a cane and a walker interchangeably and more often. I get asked where I get my little portable fan and pocket heaters and special clothing. Even abled coworkers are doing it. My coworker who's younger than me sets alarms to take breaks now just like I do. People seem more comfortable using things that help them now.

My boss has really struggled. He has a lot of internalized ableism and hates thinking of himself as crippled. He spent his whole life physically active and strong and all these health issues and overexertion are catching up with him. Like he did environmental testing in areas with fucking radon. He did work where they threw asbestos around like snow for fun. He's done a ton of really hard physical work. He grew up with the mentality that pain was just something everyone has to push through. But I think seeing a young person make the choice not to push through is helping him a bit. He wants to make his own walking stick, he goes to the doctor more. We bond over having constant medical issues and I even gave him the name of my surgeon. Yea he still says stuff like "shoot me if I have to use a wheelchair" (not as much anymore since he now knows I use one) but he's getting there.

Yeah so I've had this in my drafts for a bit and I wanted to update that my boss has been walking around with a fucking broken ankle for the past couple of weeks. He thought it was just arthritis pain and eventually couldn't take it anymore and went to the foot doctor. The doctor has no clue how the fuck he's been walking on it. Now he has to wear the boot and he's banned from fieldwork while he heals.

Older people and the elderly need to learn that it's okay to not push through the pain and ask for help. Everyone needs to learn this, and not be like my fucking boss. Go to the doctor, get that sore joint checked out. Get those tests done. Use that aid. Stop walking on a broken ankle just because you can.

[peachdoxie]

I don't think I ever really processed the trauma I went through in OCD treatment and reblogging that comic about OCD the other day really triggered me and arghhhhhhh I don't know what to do about it. Thoughts I guess.

The main thing is like, any time I would express doubts that I actually have OCD, my therapist (who specialized in OCD) would tell me that doubting that I have OCD is actually a very common symptom of OCD, and it felt like he refused to actually listen to my doubts when I was like "my avoidance happens because there's some block in my brain that I can't get past and it's not rooted in anxiety."

Like, because he thought I had OCD that meant that any thought or behavior I expressed automatically was because of OCD and not like, adhd, autism, fibromyalgia, sensory processing disorder, etc. It felt like my only options were to agree with him (which I didn't want to do because I don't!) or continue arguing and therefore just confirm what he already thought.

And like honestly it made me almost question my sense of reality when I was like "I'm avoiding this thing because I'm worried the physical exertion will trigger an asthma attack or tachycardia event or fibromyalgia flare up or migraine" and he'd be like "but what if it doesn't and you're fine?" and I was like "I can't take that risk because of how long it takes me to recover from these health issues" then he'd say "OCD treatment is about learning that you can and have to work through discomfort and, yes, even pain" and honestly if not for the fact that I have a strong sense of self and years of experience to back this up, I might have started to doubt that my health issues were really as bad (even though they are!) as I was perceiving them.

Like one exercise I had to do was increase my anxiety (to show myself that I can handle anxiety) by hyperventilating through a coffee stirrer for a set number of seconds, and I was supposed to do it even if I was going to black out but when I said I felt like that was too risky for me because of the aforementioned health issues (the tachycardia especially) he just kept trying to convince me to do it even though I kept saying I don't think I should!

And he kept suggesting things to convince me to do tasks, like if I don't do xyz by our next appointment I have to donate ALL of my savings to a political cause I disagree with, and I was like "that just creates more anxiety for me because I genuinely do not think I can do this thing because my brain won't let me!" That was the last session I saw him because I cancelled after that.

Honestly I think the main reasons OCD therapy was so traumatic for me were 1) I constantly felt invalidated when I expressed concerns and 2) I was being misinterpreted by someone who refused to listen to me. That second one is something that actually really bothers me a lot and some of the biggest falling outs I've had with friends in high school were when they misinterpreted something I said as malicious and used it against me. But the invalidation of my concerns goes right along with it.

The thing is too the part of me that does have perseverance and anxiety—not the logical side of me, that is—still worries that maybe he was right all along and I do have OCD and all of my problems are just because I don't think I can do something so I don't, even though my logical brain can point to all of the evidence contrary to that worry.

Like yeah, I do have intrusive thoughts that cause my anxiety, but I'm pretty good at handling them. And my avoidance is based in past experience of "if I trigger one of my health issues by doing one of these specific things that have triggered them in the past, it will make the rest of my week very difficult as I struggle to recover and play catch-up." It's like, what anxiety I have is most often based in very real, very tangible worries—and even now, I'm struggling not to start spiraling about it, so I'll stop before I get there.

Tbh the only good thing to come out of those six months of hell was the conclusion that the vast majority of my problems aren't caused by anxiety and that there is something else going on, whether it's autism, adhd, fibromyalgia, or whatever. I'm not sure it outweighs the trauma, but hey I learned something I guess.

Tbh I try not to be too pissed at myself for seeking OCD treatment in the first place and basically wasting my leave of absence by making minimal progress. I decided to listen to the therapist who diagnosed me (different from the OCD treatment therapist) instead of going with my idea of seeking help from an autism/adhd therapist, because I tend to defer to authorities on things like that—though I will say, the negativity and fearmongering on Tumblr around getting autism/adhd diagnoses certainly didn't help.

I think overall it's frustrating because I will never get closure with the OCD therapist. He will always have misinterpreted me and refused to listen to me, and I'll just have to live with that.

It's also frustrating because I don't think either therapist necessarily did anything wrong, per se, since they were looking at what evidence they had from their experience in their fields, which certainly biased them—and they both admitted to me that they don't know much about autism or adhd, and I should have taken that as a yellow flag and bailed sooner—and I'm going to shut up because the spiral is starting again.

Anyway if you read all this, thanks I guess. I'm mostly just train of thought writing to get the thoughts out of my head (perseveration is a symptom of OCD but also of adhd/autism and I need to keep reminding myself that). Please don't give me advice or suggest I reach out to either therapist please. Compassion only.

Please also don't try to convince me that I do have OCD because I don't need someone encouraging my anxiety spiral.

[neetpunk]

My PT visit went really well! I requested to see a physical therapist who specializes in hypermobility, and after describing my symptoms and her looking at me move my body she said I definitely have EDS. I wish she could diagnosis me lol. She did put in her notes that I have hypermobility disorder, so I'm glad I'm finally getting treatment for it, at least. She said the most pressing issues right now are my ribs and the way I stand. She said the way I'm breathing has stretched my ribs too far so they're jutting outwards now, which has raised the upper half of my body too far and "I've reached the ceiling". She also said I roll my feet inward too far when I stand, and it's sinking my arches down. She said if I don't learn how to control my feet to roll outwards more, I'm gonna end up with flat feet like my mom. She gave me breathing exercises to do every hour that will make my ribs sink back into place, and "toe yoga" exercises that will make my feet strong enough to stand correctly.

She was a really good PT, she wasn't bothered by my braces or crutches and said I'm good to keep using them. A lot of physical therapists seem to think mobility aids are just bad to use and it's an immediate need to get rid of them, instead of other, more pressing issues. She also is well versed in fibromyalgia, along with connective tissue disorders. She told me the best way to treat EDS is with strength training, but because I have fibromyalgia, I will have to do it very slowly so I don't overexert myself and end up flaring myself. She told me to utilize the warm water pool there, too.

[not-gonna-lose]

...If I didn't know my own brother was currently being cared for by his dear friend, I'd be a lot more startled by you having his (your? this stuff is always confusing) account for the moment. But...

It sounds like you're doing well for yourself, Kiki. Went and got yourself a position in the Elite Four...I really do hope you're proud of that, because that's genuinely an incredible accomplishment. Especially in only a few years! I'm very proud of you.

How are things going for you, though? Just in general.

-Carmine/@ribesrubrum

Yeah, I get it- Never really does get less confusing... He'll be okay with Atlas, though-

I definitely am proud of it- It's only been a year, but- Definitely plan to keep the position, as long as I'm able to!

First few months after I lost the championship were- Really rough, but... It's gotten a lot better since then- Still in touch with a lot of people from the academy, actually-

I'm, uh... Getting therapy now, and- On a few medications that have been helping a lot... And Absol's been helping a lot with everything, too... Especially when the flare-ups are bad- Fibromyalgia, is what they said it was... Definitely still have pretty bad days, but- Managing stuff a lot better now!

Oh, and! Figured you'd wanna know this part, too! You and Amarys got engaged a little while ago- The wedding is supposed to be next year...!

[nicole-a-autista]

Please, can anyone help me?

It's been about a year since I've noticed that something is weird with me, but I can't figure out what it is. The only time I tried to tell the doctor about it he ignored it, it's my parents don't think it's serious enough to make a personalized appointment.

They are random and localized pain outbreaks. There is no sign of external damage, despite affecting the skin. They may be accompanied by a higher frequency of headache. Affected skin is normal in appearance, although it may be goosebumps when at the peak of pain. No sign of allergy, fever or injury.

Depending on how strong the crisis is, it also hurts the bones, and the muscle becomes numb and weak.

The most common places to be affected are the legs, and this sometimes makes it difficult for me to walk (better elaborated later), but it has already affected the whole body, except the soles of the feet. There are flare-ups where it hurts in multiple places at once.

Hairy places are more painful, probably because of friction. The legs and scalp hurt, but it burns much more in the intimate area.

It happens about once every two weeks, but there are cycles that happen more or less frequently. It lasts for about two weeks to a month without any pain, but suddenly it lasts for one to two weeks with frequent outbreaks with intervals of less than a day between one place and another.

My gait is unsteady, I fall forward easily. My legs tire easily, which can trigger breakouts. My knees are very locked and weak, the slightest effort can cause me problems for days.

It affects me a lot. It is difficult to touch the affected area, whether with skin, clothing or walls. When it affects the back, I can't touch the car. As it affects the lower back, I cannot sit on the toilet well. The cold makes it worse and injuries in place can influence.

Sleep doesn't get much better. I sleep more than 10 hours a night, I manage to sleep even more, and I'm still tired. A bad night's sleep and a good night's sleep have exactly the same effects.

Knees lock frequently, other joints move by themselves. There are times when I'm sitting around doing nothing and my hip suddenly dislocates from the femur. It hurts to sit down, it hurts to get up, go up and down steps and ramps. It hurts, hangs, burns.

There are times when it hurts/becomes so tense as to cause shortness of breath and shakiness. I can't control my body. I lie down at night and my legs have slow, steady spasms.

Dizziness, pain, weakness, tremors and twitching. These are the crises.

I don't believe it's something psychological, since my psychology doesn't affect seizures. When I'm stressed it gets worse, but it's the same way a headache gets worse with stress, not being caused by it.

Last time I went to the doctor she told me it was anxiety, but I know my body well enough to know that this is not my way of reacting to anxiety. She gave me dipyrone into a vein, and I fainted. I got better from the dizziness and tremors and went home in pain.

I'm 16 years old, I'm Autistic and I walk better with mobility aids (although I don't have any yet). I don't know if it's chronic pain or fibromyalgia since it doesn't happen all the time, but it always appears in a different place.

[anomalousmancunt]

anyway, yeah, i classify my (motor) disabilities as severe because:

at any point in time i cannot stand up for longer than 15 minutes without heavy pain. i can go longer than that but it absolutely drains my energy (which if any of y'all have fibromyalgia, you know how disabling that can be). i need to sit down and rest.

while i can keep a somewhat normal pace while walking on good days, i can walk on very specific ways - no stopping and starting, inclines are hell on earth, need to pay attention all the time to how i carry my weight because my bad leg may give out randomly.

adding to that: i have very low propioception, a mix of the 'tism and the fact that i've spent years forcing myself to keep going through the pain. this means that i may not notice when a good day stops being one, or when my body is giving out on me. this means i have to dedicate a lot of energy (which i barely have) to being aware of my body, and even that may not be useful.

i spent a year almost entirely either in bed or sitting because i had One Big Flare-Up that left me unable to stand for longer than 10 minutes... and then gave me like, an hour of standing time for the entire day. i have, luckily, gotten a bit better, but not entirely recovered.

i have no access to aids - i would potentially classify my disabilities in another way if i had, because yes, i could manage with those, but i'm not in that situation now, and i won't be for an indeterminate amount of time. this leaves me in a weird position in regards to what i can and cannot do.

i barely have access to basic medical care, and have almost zero medical care for my specific disabilities (as in the only thing i get are my meds - and those were a struggle and a half).

is this the correct language? maybe not. but until i'm able to get better language, it's what i have.

[glittergutts]

The back of my front tooth chipped in my sleep last night somehow but I already had a dentist appointment for Monday thank God because it's making me feel really bad myself. I've been slowly trying to get some stuff done today but I haven't made it very far. I might put on some music and fold some laundry which is one of my least favorite chores so I'll feel really good when it's done and I can do it sitting down. After lots of decluttering projects I triggered a fibromyalgia flare up and had to spend the last 3 days being in bed feeling super rough. I've been forcing myself to get ready for bed and do a few things at night which has been good for my mental health even though it feels exhausting. I've been sleeping really bad with the flare up and I'm so ready for a good night of rest. The constant nightmares leave me feeling exhausted and I don't know what to do about it. There's a few herbs I wanted to try for my physical pain and sleep but I don't have the money to be experimenting right now. I've been needing to buy clothes for a while now but finally all of my good pants are ripped pretty bad and I don't have anything I feel comfortable leaving the house in anymore. I don't need any more anxiety about going in public so I've really got to get some clothes before the kids have co op and extracurricular stuff again that makes me leave the house. I'm really hoping Chris will get his commission check today and there will be enough to cover our bills and still get a few clothes. We somehow manage to always get by even if only barely and honestly that's all that matters at the end of the day. I just hate needing things I didn't plan for.

[butterfly-casket]

Lowkey can't believe I forgot to make this post but at the beginning of this week I walked out of my appointment 5 mins into speaking to my primary. (I had a pulse of 81 and BP of 112/70 going into it.) I left, immediately requested my entire medical history, canceled my insurance (specific to the hospital/clinic I went to), canceled my appointments and sent a message to my physical therapist that I appreciate her but will not be putting my health in the hands of *place* ever again. Then they asked me to fill out a short survey and I went OFF about the bs they've put me through for the past 3 years.

Under the cut is a description of my medical history from the past 3 years because I'm just trying to make some fucking sense of it all and how they still think fibromyalgia fits. I think they fucked up SO BAD for so long that they had no choice but to double down.

> At beginning of 2021, I get shooting pain down my leg & my hip keeps trying to give out

> gets so bad I go to the ER

> gets laughed out of the ER because I briefly mention that I've experienced chronic joint pain since age 10 (to give them the perspective that my pain scale is off)

> goes back to my pediatrician (I'm 18 at the time, haven't found a new primary)

> gets referral to rheumatology and bone & joint

> rheumatologist diagnosis me with joint hypermobility, says he can't do anything about it.

> meanwhile, my nerve pain is getting worse and worse.

> bone & joint doctor, I see him twice, repeatedly assures me that sometimes "people just have pain for no reason"

> pain gets so bad that the only thing I can do is sleep, being practically comatose, and only eating sandwich ingredients and dry cereal out of the box for 3 weeks.

> schedule an appointment with the first doctor I can see. My mom drives me, helps me shuffle into the clinic, and cries with me when the doctor walks in & asks what's wrong. We both become sobbing messes on accident bc I'm in so much pain.

> he tells me the only thing he thinks it can be is fibromyalgia. Prescribes me an antidepressant. The NEXT DAY. My pain is GONE seemingly out of nowhere

> I am unable to take the antidepressant consistently due to lack of primary doctor, doesn't seem to make a difference so I stop.

> 6 months later I am struggling to pee, 3 months after that I get my first uti and it was very bad (blood in my urine). I go to the ER but they quickly prove to be recurrent. I am treated by minute clinics around where I moved to.

> 8 months after the initial flare up, I start having mini flare ups while working an INCREDIBLY labor intensive job with long hours. I had already been working there for 3 months without issues

> have to back my car out of parking spaces VERY slowly because any time I turn my neck back that far to look, I start to black out and become unable to form thoughts. I was taught to neglect myself growing up, so I just thought it wasn't a big deal & that it would go away.

> 3 months after my mini flares up happened, I start to have a month long flare up that gets progressively worse before just disappearing one day.

> I think I'm better, get a new job, immediately have to take a month off of work due to extreme joint pain, muscle pain, and constant uti symptoms. (12 months later we find out I was suffering from thyroiditis.) Try to fix my sleep schedule, diet, exercise habits, and finally start to feel a little better. Go back to work but it's part-time.

> work there for 4 months in extreme pain every day, eventually have to leave because I can't take it anymore.

> apply for disability, get new insurance, & get taken care of by my partner. Also move in w roommates who I didn't realize were incredibly unsanitary. I try my best to clean up after them for 5 months before ultimately I give myself a stress fracture on both my L5 pars and send my body into yet another full body flare up that sends me to the ER. Am still experiencing hyperthyroidism without knowing it.

> ER prescribes me gabapentin and send me back to rheumatology.

> finally get a new primary who seems to really care.

> Rheumatology gives me a 9 beighton score & sends me to physical therapy which helps my joint pain a ton until I have another extreme nerve flare up 3 months later while doing my PT. Literally the worst pain I had ever experienced, could barely move. Primary ups my dose 6x and it helps at the very first but ultimately still doesn't keep up with the pain (like, at all. 1800mg a day.)

> sees a urologist who diagnoses me with Pelvic Floor Dysfunction and almost doesn't test my urine which showed crystals & a lot of bacteria (he acted like I was crazy for feeling something solid through my urethra.) He went ahead and did a CT to check for kidney stones and found an 8cm ovarian cyst (that they found 2 yrs prior & didnt tell me or my mother about even tho it 6.7cm at the time) and an L5 pars defect.

> gets reoccurring chest pain & palpations for months, one day it gets really bad and a nurse line tells me to go to the ER. ER diagnoses me with Anxiety.

> finally sees a spine doctor who diagnosis me with bilateral sciatica, spondylosis of my L5, and says there's a good chance my spine is popping in & out of alignment. Sends me to pain management.

> pain management switches me to pregabalin. It helps a little bit for a little bit. Eventually have to stop taking it due to extreme mental fog & personality changes.

> try dry needling therapy for 3 months for my lumbar back. It always relieves me for a short period but ultimately was making matters worse in the long run.

> having tons of flares ups all the time up until we had to move & 30 minutes into moving small boxes my back pops out of alignment, my legs give out and I'm in, once again, the worst pain I have ever experienced in my life for the rest of the day until the next morning I take an Epsom salt bath, feel a pop, and finally have some relief. I was sore from that flare up for a week after.

> find a new primary after moving, ask about possibly having hEDS and he sends me back to rheumatology (who found nothing) saying they have to rule out everything else first.

> go back to pain management, try a couple different things that either made matters worse or did nothing at all and decided to take a break from the disappointment.

> everyone keeps telling me I have fibromyalgia & anxiety despite the fact that it doesn't actually make sense with the pattern of my pain, doesn't match up with my symptoms &doesnt explain half my symptoms.

> symptom page is now 3 google docs pages long & after receiving my medical records I find a million inconsistencies, claims of me agreeing to things that were never discussed with me, and half of my reported symptoms are not even mentioned.

> have a dozen more symptoms that I'm scared to mention out of fear that I am going to continue to be dismissed, ignored— or worse, give them reason to think I'm seeking attention.

> completely lose hope for receiving the help I need.

> start having blurred vision and dysphagia, looks them up, reads about MS and realizes it fits nearly all of my symptoms. Make an appointment with my primary.

> goes to my primary, immediately is talked down to for "coming in the Friday before Christmas break" and "the only reason you got this appointment is because I had a cancelation."

> I burst into sobs and whip out my symptoms list just fucking begging for help, telling him I've been dismissed by almost every medical professional I've been to, most of my symptoms haven't even been recorded, & that I'm desperate. He agrees to finally help me, refers me to neurology (first time since this all started) and orders MRIs to check for MS.

> by this time I have had thyroiditis, a ton of infections, have horrible balance, tons of tingling and numbness in all my limbs, use a cane, been unable to work for a year and a half, worked with tons of physical therapists who don't know how to help my nerve pain, & have another ovarian cyst despite receiving treatment for PCOS.

> goes to the ER with my heart racing, vomiting, extreme fatigue and weakness. The doctor tries to gaslight me as they continuously tell me "You are a young healthy person. This is very psychological, you need a psychiatrist and psychologist." Until I am in literal tears because that treatment felt very uncalled for, especially because my labs hadn't even come back yet. I finally agree to see a therapist bc I recognize I am going through a very difficult thing in life and could use the extra support. I also felt very much like they were going to put me in a psych ward if I didn't agree. My lab tests come back showing I have low potassium & CO2. They treat me then send me home with 2 diagnoses: nausea WITHOUT vomiting, depression.

> neurology asks me a ton of medically irrelevant questions about school life, home life, relationship with my parents and then diagnoses me with anxiety without performing any tests.

> gets my second EMG that comes back clear

> finally gets my MRIs that shows cervical bone spurs on 3 different vertebrae.

> think I have FINALLY found the answer to almost all of my symptoms.

> goes back to my primary who says it's "just a little arthritis. Most people who have what you have don't have symptoms." & won't listen to me when I point out that I have every symptom indicative of complications with bone spurs in the neck (& I'm hypermobile)

> refuses to discuss why I have the bone spurs at age 22

> refuses to discuss the possibility of hEDS

> gets mad at me for not being treated for my fibromyalgia (even tho nothing works.) Keeps interrupting me to say it's just fibromyalgia.

> I say, "ok, we're done here" & get up to leave

> "you're leaving?!"

> "you just said nothing is wrong with me, I have the same thing everyone has been saying I've had for years, that I have the same thing I've been trying countless useless treatments for, what else can you even do for me?"

> "but I could get you a referral to a spine specialist!!"

> "you just said nothing is wrong with my neck. And I've already been to a spine specialist."

> "they could give you injections!"

> "I've already tried injections and they. Didn't. Work."

> "you don't even want a follow up appointment???!"

> "???? NO!!!"

[themathomhouse]

tw suicidal thoughts

There's a line in The Muppets Christmas Carol that's been haunting me since my boyfriend left me last month. No, not the song about love being gone - that's more like a flood of tears - when the Ghost of Christmas Present sings, "it's true, wherever you find love, it feels like Christmas".

Christmas has been complicated for me for many reasons for a long time. I'm Jewish but my family isn't religious, and we always did Christmas. My relationship with my mother in particular can be difficult, and she's very critical of me. Christmas hadn't been especially enjoyable for me for a long time, and every relationship I'd had they never wanted to spend time with me around then.

But this year, I was going to spend several days with my boyfriend and his polycule. My metamour is also Jewish so I'd hoped we could do Chanukah together too, but even if not, we had activities planned and the whole thing was going to represent me finally being with people who felt like family.

Then he left me out of nowhere last month. After spending most of the week telling me he loved me, he then said actually he fell out of love with me months before. He said he didn't know who he was anymore.

He walked out of my life at a time when my mental health was at its worst, and he took whatever happiness I had left with him. When I don't feel completely empty, all I feel is the love I still have for him and the family and the abject despair of knowing that's gone forever. The only person who feels any of that is me.

I really didn't want to do Christmas this year. It just represented everything I'd lost. But, Christmas Eve, I was persuaded to go to my parents' house for Christmas dinner. I'd put in with my sister to get theatre tickets, but I wanted to bring something for my parents to open so I dragged myself shopping.

Huge mistake. I was surrounded by people all excited and planning the next day, people talking happily and decorations everywhere. I kept seeing things I could have got for the poly family, kept being reminded of the activities we'd planned. The things they were probably doing right that moment without me. Probably not even thinking of me. I saw so many couples and just couldn't do it anymore.

I left without getting any gifts. Security stopped me to check I was okay, with how red my eyes were and how hard I was crying; and it was humiliating.

I sobbed in the car park and could see people walking past staring at me. Eventually I decided to just drive home anyway.

And on the way home I wanted to end my life.

All I wanted - all I still want - is the life he promised me. The adventures we were going to take together, experiences we were going to have, me maybe moving in. I'd incorporated him into all of my life plans, and taking him back out of even ones I'd had before was just miserable. If that's all life is going to be, I just don't want it.

The only thing that stopped me from driving off the side of the road down a drop was my cat. She still needs me. Nobody else wants or loves me, but the cat is completely attached and I think she'd struggle without me.

Today I'm realising that I don't feel in the Christmas spirit because I don't feel loved anymore. And I don't think I will again. Not like that.

I feel grief and heartache. I'm going to stay alive for the cat, but I feel like an empty shell where a person used to be. There was a light that's just burnt out forever.

Dragged myself here (giftless) for Christmas dinner. I feel atrocious. My fibromyalgia has flared horrendously and everything hurts, and with how bad my acid reflux has been I'm not sure how much of dinner I will be able to eat. But, I showed up. Might as well make the best of it.

Mum showed me a perfume she'd got. I sniffed it.

I don't often get allergic reactions to perfumes, but whatever it is that's in things that I can't tolerate must be in that one. My throat started to close up and I had to take an antihistamine and hope that would be enough.

Part of me hoped that it wouldn't.

It did kick in. I feel like I've been hit by a lorry, but I can breathe.

I really can't take anything more. There isn't going to be a final straw - a straw might be too large and heavy as a metaphor for what it will take for me to break.

[angelsnake99]

TW: Disability, pain, anxiety, depression, judgement, trauma, self harm, prescription medications

Dude, it takes so much for me just to get to normal. Like, baseline. Where everyone else naturally wakes up at. Between the rheumatoid arthritis and fibromyalgia pains combined, on flare up days (caused by stress, over exertion, extreme heat or cold), the pain is like torture. Every joint in my body, every finger and toe, between every vertebrae; my fucking FACE; skull joints like jaw and base of skull/neck...it feels like they are filled with glass and poisonous thorns, and someone has a vice gripped around each one, slowly tightening and loosing it at completely irregular and unpredictable intervals. Then the fibro...every nerve. In patches surrounding the sore joints that are sometimes so large that they cover my entire body. Tender pain, like I'm covered in bruises. Like I was beaten. Sometimes, the weight of my clothing on my SKIN is too much to bear. The RA fatigue and fibro fog make it so hard to do anything. But you know what's worse than all that? What it does to me psychologically, and how it impacts those around me. The anxiety and depression, the shame and guilt and embarrassment when I don't live up to normal people's expectations, because you can't always see my pain with your eyes, and I'm very good at hiding it by now. When I can't cook dinner for my husband because I can't lift the bowl. When I have to ask a stranger to help me do my job at work because I can't lift the equipment and I'm out in the field working alone so I can't ask for a coworkers support. When my husband's family doesn't understand so they think we're just lazy. When my son wants me to play with him or pick him up and he doesn't understand why I can't. When I want to see a friend but I have to cancel because I can't lift my arms to drive. And the constant effort I have to expend to function, to just go to work and do basic things like laundry, dishes, showers, driving, sleeping...eating. I cant eat sometimes because of the pain. But when I express it, everyone around me is miserable too. So I hide the pain. Because the truth is, I am legally disabled, but I'm too young to accept it so I refused disability from the state. So I did this to myself and it's all my fault. Because I couldn't be honest with myself and my loved ones about how bad it really is. I've wanted to cut recently but I already hurt so much and I've stopped doing it for so long I can't go back. But I am overwhelmed. My add is out of control lately too because of it. I can't take medications for pain and ADHD at the same time. Too much. Plus I already think people don't understand how severe the pain is anyway and how badly I need my meds. I'll be annoying and spacy and unfocused and unmotivated over more pain. #rheumatoidarthritis #fibromyalgia #anxiety #depression #adhd #selfharmrecovery #younganddisabled #ptsd #trauma #venting #disabledbutable

[coffinofconfections]

TW; mention of abuse (not described), numbness, mild head injury description (not me), mention of family member getting surgery.

Acid reflux is back, although it's pretty bad. I know I have GERD and it's something that will happen from time to time, but it's pretty bad and hasn't gone away for at least three days now, if not longer. And it is painful like it used to be before I got stomach meds several years ago.

I hope it improves, but it's probably the stress and stuff that's been bad lately that's subconsciously bothering me. I haven't been able to process a lot of things, including the fact that I'm reacting differently, in a way, to trauma memories and recent stress. I think I'm just so scared of getting abandoned or hurt again, or making another mistake or hurting someone by accident, that I'm just straight up not processing shit and I'm going numb instead. [More under the cut]

Recently, mom had a serious head injury that resulted in her having to get her head stapled shut plus a huge black eye. She's recovering now, but last time she was here a few days ago, she was surprised at how good my glasses looked and wondered when I'd gotten them. The same exact glasses I've worn for years in front of her. They're hard to miss.

My grandma also recently had a serious head injury and mom showed me pictures of it, which disturbed me. They were in weird lighting with flash and it looked horrible, I don't know why she showed me them. Thankfully there was no blood in the photo.

I lost my case manager. He's changing positions to one he had his eye on, but I'd grown to like him and he's the nicest and most respectful one I've had. There is no replacement, as I've mentioned before. I'm scared, but I am also fighting the depression from a feeling of being abandoned again, of losing someone I felt so lucky to have. I don't think he can be friends with me, we had some stuff in common, but probably is forbidden. I'm really upset.

I'm still dealing with trauma dreams and trauma cycling in my head since the holidays started in November. I'm just not processing any of it.

When I was doing laundry a few days ago, it was after I'd been in a busy grocery store the day before. I have agoraphobia so it's already bad being out, but with fibromyalgia and not being in shape, my lungs were burning as I tried to hurry because my laundry took longer than usual and I didn't want to be an inconvenience. I almost broke down crying at the laundromat because everything was just coming together like a huge weight on my back.

Sitting here now, and last night too, even a few nights ago, I get the urge to cry. I think about my dad's health too, and how it's very poor after he survived several mini strokes a few years ago as well as a serious life saving surgery. No one knows how long he has left especially with emphysema.

It's hard to process because my parents were also abusive, my dad was very abusive in many ways that I couldn't process for a lot of years. (Won't go over it again, but it involves disturbing shit.) I struggle with their mortality and when they get really hurt because I can't process it. I had just decided, again, to try to go no-contact, and then mom gets the head injury right then.

I feel like I should have certain feelings that I don't. I should be worried. I should check on them. I should care more. But I feel nothing but the distress at wondering how to process a LACK of these things.

So, yeah. My GERD has flared up because the trauma from the end of 2020 likely made me too afraid to process things, because the last time I did, people took offense or I said something unclear or wrong and I lost a whole group of friends after they gaslit me and talked behind my back when I tried to apologize.

So now I just can't process anything and I've chosen to isolate because when I'm alone and by myself, with my head fam, I can't hurt anyone else or worry about someone taking my words out of context.

[not-poignant]

Ok I hate her and I hated the whole situation, but this line «Maybe you could try and live a life where you don’t want to die anymore.» 😭😭😭😭😭 + I didn't know that I needed the image of baby ef playing piano with tiny hands until now, someone out there should draw this, like please?? 🥲

I like what Lija said in theory, but I think for many people who have been suicidal knows that hearing 'maybe you could try and live a life where you don't want to die anymore' leads to mostly feeling extremely demoralised.

I'm putting the rest of this under a read more, feel free to ignore the rest of this post anon!

"Like, geez thank you Lija for that brilliant insight, I didn't know until now I should be putting more effort into not wanting to die, like paying for all these twice weekly therapy sessions and working really hard just to stay afloat. I'll definitely try your toxic positivity though, I'm sure that was the one silver bullet that my healing was missing, simply trying to live a different live to the one I am now. That sounds easy and workable! If only I'd thought of this before. Say that to everyone, and you'll cure all their mental illnesses!"

This idea of like 'I'm going to give you permission to try something different so you can feel better :) ' is so condescending. At least for some of us? I'm sure for some folks who are suicidal, it's a line that might be comforting to them. But it's not really practical advice, and it puts the onus of effort and responsibility on someone who has broken under effort and responsibility.

And it also implies that Efnisien hasn't been pouring his guts out into trying to live that life in the first place, even though it's so incredibly exhausting for him, the fact that he 'tried so hard' in the first place is one of the reasons he also crashed so hard.

It's the kind of advice that makes Lija feel better to say, but actually kind of means nothing? I feel like she's going 'I'm someone who is angry at you but look, I will grant you my beneficence from on high and tell you that I think you can try not to die anymore. Doesn't that make you feel special?'

Like, maybe you have been suicidal anon (I hope not, but a lot of folks have, which sucks and I'm so sorry) and that's the kind of thing that would have made you feel better, in which case I'm really glad. It can be good to tell people specific lines that really help you, especially if they're lines that might come across to many other people like they're not going to be helpful. It's kind of like how telling one person 'it's going to be okay' will be the thing that makes them feel comforted, but telling another person that just makes them feel invalidated and like the person doesn't understand reality.

And! If the line makes you personally feel comforted, then that's all that matters. I'm thinking more about how that line would hit Efnisien, or me, but I'm not you - and if that was something that really helped, tell your trusted people that it's the kind of thing you like to hear in difficult situations. <3

But yeah I think in Efnisien's case, he was mostly just scared and wanting a nurse to save him, and unfortunately Lija is not equipped to handle this situation, which she did eventually realise!

Also yes! I'm glad we got another window into 'child Efnisien' outside of Efnisien's perspective of himself, which is so often really flawed. It really scuppers the idea of Efnisien as like, a charming child, but it also introduces the possibility that more than one person suspected child abuse, and no one did anything about it.

It takes a village to allow a monster.

[lifewithchronicpain]

Third day since the surgery. Hurts like hell, but when my meds are working it's tolerable. My foot is in a hard cast and it feels like a vice grip because of swelling with no help from fibromyalgia. At least today it feels ever so slightly bad.

Anyway, the stay at the hospital was really bad. It seemed things were broken left and right. I waited in post op for two hours for my room because they go no answer when they called the patient floor. Finally someone went there and found out the phone was broken. Then I get to my room and the TV doesn't work. They eventually got it working but of course I had to stare at walls waiting for it to be fixed. And then there was the adjustable bed, I had to put all my strength into pushing the buttons to change positions.

However that was not by far the worst. TBH some Nurses we're great, it's just the one overnight RN that was specifically horrible. Because my stomach was empty all day it triggered a cyclical vomiting flare that wouldn't let me keep my meds down. I told the nurse I needed IV meds, but she's just refused and let me suffer. I would take take the pills hoping the next time I throw them up she'd reliant. Instead when I kept telling the other floor nurse I was throwing up the meds again, the RN came to my room and basically said she's only supposed to treat my leg pain not my stomach pain. Then she said I was "badgering" her staff. I'm still so upset when I think of that. I wasn't badgering, I was begging for help because I was in agony. And it wasn't like I was asking for IV opioids, I was asking for IV protonix but since she gave me some earlier she couldn't now. And the thing was she gave me twice my normal dose for some reason. But what does it matter when you throw it up half an hour later and definitely don't get the full dose? It was all such fucking bullshit.

After she forced me to try pills with applesauce, I threw up again and then was given a scheduled dose of Dilaudid, and finally I started to feel better. At about 5 am when the sun was starting to come up, I finally got some sleep.

The next day the nurse was very nice but you could tell she was really busy. Discharge was a bit of a clusterfuck if its own. Doctor said I could go home and nurse tells me I'm staying longer and I'm like No no no no. Then I find out their setting me up with home nursing services I was never told about and don't want. I want to be left alone to recover and I plan to smoke a shit ton of pot. For the first time ever I bought myself an ounce! Sibling knows a business that costs less the more you buy and delivers!

Ultimately, I'm just glad to be home, and Giles is keeping me company.

[ravusnightblossom]

what health issues make it so you can't write? i really don't understand that. not trying to sound rude just curious.

ooc;  Well... um... I've had this sitting in my inbox a while (likely since that update where it enabled anons,) mostly because I wasn't sure what the best way to answer this would be. I didn’t want to just delete it, because it actually does somewhat hinder my activity, from time to time. It was a very odd question, to be honest... I don’t even know what sparked it???

First things first, I want to point out that asking someone this question is illegal in the US. It is a direct HIPAA violation of requesting someone to release their medical records. If they wish to discuss it, that's up to them, but you really can’t just ask someone this, blatantly. Fortunately, I don't really give a damn if it's just a casual curiousity, but someone else might.

Anyhow, I’ll slap this all behind a ‘read more’ since it does contain some heavy content.

Multiple Sclerosis: First and foremost, this is the most critical one. While mine is recurring/remissive, some days it still flares up. Sometimes my limbs will literally go numb for hours at a time. Sometimes I'll lose vision in one eye. Or my back will begin spasming. On top of that, there are days where it outright will send me into a full-blown seizure. I actually have a service dog to help monitor those bad days. Thankfully, the seizure days are becoming more and more rare. When my MS is in the 'recurring' stage, they occasionally will put me on flash doses of Chemotherapy to push it back into remission, and Chemo is exhausting.

Degenerative Disc Disease & three bulging discs in my back: There are days when I literally cannot sit upright, otherwise, it hurts so badly. I've had injections, rhizotomies, all sorts of procedures, but little success in alleviating this at all.

Fibromyalgia: This is one I've had my entire life and I'm rather used to balancing and juggling it, but sometimes it definitely gives me that good ol' "Fibro fog" where my head just feels groggy, foggy, and fuzzy, making concentrations very difficult. Sometimes it will also make it feel like my blood is literally boiling beneath my skin, and if I need to explain why that complicates writing, well... yeah.

Myalgic Encephalomyelitis: This one is probably the second-most bothersome on the whole list. The more lax term for this is Chronic Fatigue Syndrome. Basically, I am always physically and mentally exhausted, no matter how much sleep I get. No matter how many vitamins I intake, how much coffee I drink, sugar I eat, I still am tired. I could fall asleep while sitting in my chair in a matter of moments. Some days my eyelids feel so heavy that it's infuriatingly difficult to even keep them open.

Sjögren’s syndrome: I’ve had this one for years. It’s part of why I had so many dental issues in my life. It also is the root of plenty of fatigue and musculoskeletal pain.

Anxiety & Depression: I'm pretty sure I don't need to elaborate much on this one and all the mental struggles that come along with it, from Imposter Syndrome to self loathing. Those definitely impair someone's ability to write consistently. 

On top of the above myriad of conditions, there’s the plethora of medications I’m on. Most I’m fairly well adapted to, aside from the morphine, three times a day. It makes me a bit groggy, but it at least makes it so I can function and even walk up stairs. 

Honestly, sometimes I feel like a hypochondriac when it comes to explaining all this crap. Like, no, really, it’s legit. It is what it is, though, and I just deal with it! I don’t want sympathy from anyone, but understanding and patience is always appreciated. ♥  

[cripplecharacters]

Hey!

So I'm writing a character with chronic pain and I was wondering if I can write them as being very active (the character is a superhero type). Also, what are some of the ways in which I can show how they are affected in day-to-day life (basically, respectful ways of showing accomodations and such they use).

Yes absolutely! Plenty of people with chronic pain are very active, I know a lot of people who have become more active because of their chronic pain - with disorders like fibromyalgia exercise and activity can be really beneficial. 

My advice would be to be mindful of your character overexerting themself and flare-ups/bad days. Oftentimes with chronic pain you have to learn how to set limits for yourself because if you don’t you end up in a lot of pain. 

Your character may use adaptive or mobility aids - braces, compression wear, crutches, a wheelchair, etc. There are lots of things that might help them in accordance with their specific issues.

Also, chronic pain affects everyone differently! Your character may not be able to run because of pain in their legs but are amazing at lifting weights or they may be an excellent runner but be incapable of putting much weight on their arms. 

- Mod Tyler