#invisible warrior

[harmonyhealinghub]

The Unending Battle: Living with a Mysterious Illness 

Shaina Tranquilino

December 16, 2023

Living with a mysterious illness is an experience that can only be truly understood by those who have gone through it. It is a constant roller coaster ride of uncertainty, frustration, and exhaustion. For the past 12 years, I have been plagued by this enigmatic condition that has gradually taken over my life. Today, I want to share my story and reach out to others who may be facing similar challenges.

The Journey Begins: At the age of 18, life took an unexpected turn for me. What started as occasional bouts of sickness soon escalated into a daily battle against countless symptoms. Doctors' offices, hospitals, and specialist visits became my second home as I desperately sought answers to the mystery that had consumed my existence.

A Never-Ending Cycle: Each passing year brought new ailments and symptoms that ravaged my body and mind. Insomnia robbed me of much-needed restorative sleep while low energy levels left me perpetually drained. Hot flashes and sweating made even simple tasks unbearable, while the absence of a menstrual cycle added further confusion to the equation.

Endless Symptom Burden: The laundry list of symptoms seemed never-ending. Intense stomach cramps, loss of appetite despite efforts to eat, persistent nausea, and diarrhea turned eating into a dreaded chore. My dental health deteriorated rapidly with decaying teeth becoming yet another complication.

As if these physical struggles weren't enough, black spots in my vision triggered worry while hair loss shattered my self-esteem. Mouth sores, rashes on various parts of my body including my face, eyelids, and ears, acne outbreaks - all added insult to injury.

Daily Challenges: Simple activities like swallowing food or drinks became arduous tasks accompanied by pain. Muscles and joints constantly throbbed with discomfort; every step felt like traversing treacherous terrain.

Navigating Life's Obstacles: Living with an enigmatic illness demands resilience and adaptability. Coping mechanisms became a vital part of my daily routine, helping me navigate through the darkest moments. Emotional support from loved ones and connecting with others facing similar struggles online have been invaluable sources of strength.

The Power of Connection: While this blog post is an expression of vulnerability, it also serves as a plea for connection. The internet has proven to be a powerful tool in bringing together individuals who share similar experiences. By sharing our stories, we can create a community where empathy, understanding, and knowledge thrive.

A Call for Support: To those reading this post, I humbly ask for your love and support. If you or someone you know has encountered a mysterious illness resembling the symptoms I've described, please reach out to me. Let us join forces in seeking answers, advocating for ourselves, and shedding light on these often-neglected conditions.

Living with a mysterious illness is an overwhelming experience that leaves one feeling isolated, frustrated, and exhausted. It challenges every aspect of life - physical health, mental well-being, relationships, and future aspirations. Nevertheless, by sharing our stories and uniting in solidarity, we can find solace in knowing that we are not alone in this struggle. Together, let us strive for answers while supporting each other along the way.

[lexotanconghiaccio]

Empatia.

Da un post su Instagram di una pagina sulle malattie croniche: “Non siamo la nostra malattia, e lo conferma il fatto che sia lì come una gabbia che spesso ci prende, intrappolando ciò che siamo.

Non è qualcosa da cui si può scappare e in alcuni momenti diventa così ingombrante da risultare schiacciante. La soluzione ha comunque un suo peso, e pensare a questo tutto insieme lo fa sembrare insormontabile.”

Il peso di un presente che non sento mio, che sento limitante e frustrante;  il disappunto per il riflesso che vedo allo specchio, un’immagine nella quale non mi riconosco, e per tutte le cose che vorrei fare ma che il mio corpo non regge più; la preoccupazione per il futuro, l’ansia per ogni nuovo sintomo, ogni nuovo esame, ogni nuovo farmaco; il lutto per la vita passata, in salute e senza problemi, che non tornerà mai più, e la stanchezza di tutto questo, da ormai cinque anni, tre di semi-digiuno e mal di stomaco quotidiano. E io non sono neanche un’ammalata grave. Non oso pensare quanto deve sentirsi solo e spaventato chi ha problemi più gravi dei miei.

Una patologia cronica ti logora, anche quando non grave, perché è un problema quotidiano, che non ti lascia rilassarti mai. Ma tutto ciò non è comprensibile a chi non lo prova ogni giorno. Anzi, chi non lo prova ti trova lamentoso e debole. E ti dice pure di non pensarci e andartene un po’ al mare (eh, se ne avessi le forze, e se potessi alimentarmi come le persone normali, non dovresti dirmelo tu! Se recupero un po’ di salute, e chi mi ferma più!). Sapeste quanta forza ci vuole per sopportare di stare male ogni giorno!

I deboli siete voi, che di fronte alla sofferenza minimizzate e guardate altrove. Dispensate consigli inutili, o vi lagnate di qualche piccolo disturbo, e poi tornate felici alle vostre cose. La possibilità della malattia spaventa, meglio non pensarci, tanto a me non può succedere. La pensavo anch’io così. Se c’è una cosa che ho notato da quando ho problemi di salute (e anche quando a stare male era mia mamma), è l’assoluta mancanza di empatia da parte del prossimo, il più totale disinteresse, spesso da parte di chi quando eri in salute diceva di volerti bene. Ho trovato l’indisponibilità emotiva e anche pratica. Ho trovato il giudizio, e tanti consigli poco utili, spesso non richiesti e non graditi. Consigli totalmente senza logica. Sarebbe bastato l’ascolto, e la vicinanza, ma la vicinanza vera, non le domande di cortesia su whatsapp, per poi scomparire o attaccare con le proprie lagne inutili. Ho imparato dalla malattia, dalla mia patologia e anche, mio malgrado, dalla sofferenza di mia mamma. Ho imparato a vedere il prossimo, ancora più di quanto facessi prima (sempre stata crocerossina, io). Vedo la gente soffrire, e mi commuovo, e DEVO fare qualcosa per aiutarla. Sennò sto male. Anche solo con qualche parola di conforto o comprensione, anche se spesso, poi, mi sento inappropriata, oppure temo di ferire la sensibilità della persona, e non mi escono frasi decenti. Ieri, poi, ho ricevuto un grande regalo, ho trovato l’empatia che ho spesso desiderato in persone amiche, ma in una persona totalmente estranea. Una persona che lavora a contatto con la sofferenza, e ha provato sulla propria pelle la paura di non farcela, mi ha guardata e mi ha VISTA. “Non stare rassegnata. Lo vedo che sei rassegnata. Ma dobbiamo combattere. Mai arrendersi, se ci arrendiamo è finita, il nostro corpo non reagisce più. Quindi, sii positiva, è fondamentale.” Me lo ha detto pacata, sorridendo dolcemente, come una carezza. Mi sono commossa, e ho dovuto trattenermi per non piangere. Poi sono tornata a casa, e mi sono sentita grata. Mi sono sentita fortunata, stesa sul divano, nella mia bella casa, col mio meraviglioso compagno, dopo aver (non) cenato con la mia famiglia che mi supporta e SOPPORTA costantemente (e che sta perdendo la salute mentale appresso a me), nonostante qualche incomprensione, nonostante ci manchi sempre un pezzo fondamentale. E mi sono resa conto di quanto quelle parole mi avevano fatto bene, mi avevano un po’ guarita. Mi hanno ridato speranza, mi sono detta che, forse, il genere umano non fa ancora completamente schifo, che qualche esemplare si salva. Ce ne fossero di più! Mi piacerebbe fare del bene al prossimo allo stesso modo. Ogni tanto ho considerato di fare volontariato. Fatelo anche voi, non voltatevi dall’altra parte, ognuno di noi soffre per qualcosa. Non siate ciechi, non siate egoisti, non sapete quanto bene potete fare con un solo attimo di comprensione VERA a qualcuno che da tempo sta male. E potrebbe arricchire anche voi.

[chronicillnessfromateensmind]

saw this and sobbed uncontrollably lol

[not-your-pussikat]

Suffering from fibromyalgia is a bit like playing Russian Roulette without the dying---you never know which body part will become unusable from overwhelming pain on any given day.

[skyward-floored]

Trick of the light (downfall iau)

Going back in time a bit, a quick thing about how Wind and Four actually ended up in the wrong universe.

...

“Don’t come any closer!”

Wind huffed in annoyance, glaring at the bad guy that was threateningly waving some kind of device around. They’d finally cornered Wizzro up here after a long chase-slash-fight, and now he’d hidden himself behind a forcefield and was grinning at them all like he wasn’t totally about to be stopped.

Four beside him rolled his eyes, and Wind heard their father let out a sigh as the villain cackled again.

“Wizzro, you’re surrounded, drop your shield and drop your weapon,” he said coolly.

“Never! I went through a lot of work to make this!” Wizzro hissed, then ran a loving hand over the device. “It’s ready now— all I have to do is use it, and nobody will be able to stop me!”

“Oh yeah? What’s it do?” Warriors drawled, and Time tilted his head at Wind and Four, making a few small hand gestures.

They nodded, and began to slowly inch around to Wizzro’s other side while Warriors distracted him, Wind wishing Wild or Legend had come with them. It figures the two people we could use the most didn’t come.

“Well, it’s... very powerful,” Wizzro began to explain, twiddling with some switches, “so powerful that not even you will be able to stand up to me, Fierce Deity!”

“Ooh, scary,” Warriors grinned, casually crossing his arms. “You have no clue what it does, do you?”

“What? Yes! Of course I do!” Wizzro snapped, but they all saw the hesitation in his eyes. “I do!”

Time raised a disbelieving eyebrow.

“Oh shut up! I’ve combined several different designs to make an all-powerful weapon!” Wizzro yelled, and then held it up so they could all see it. “And the power that fuels it is not to be reckoned with!”

Wind saw a glimmer of light in the bottom of the gun-like device, bright enough that he couldn’t really tell what it was. Maybe some kind of stone? He didn’t recognize it though, and based on Warriors and Time’s frowns, they didn’t either.

He kept going alongside Four though. They were almost directly behind Wizzro now, and with his focus on Warriors and Time, Wind was confident he’d be able to use his winds to shut off the forcefield so he and Four could tackle him. He was a little uneasy about the weapon, but he could just blow it out of Wizzro’s hand if it came to it.

“And what exactly is this power that we should be so terrified of?” Time asked dryly, hiding his own unease. Wizzro only grinned, and twirled his weapon.

“That’s only for me to know about, I’m afraid. But you should be terrified.”

“Why exactly? If you don’t even know what it does, why should we be afraid?” Warriors asked, and Wizzro hummed, tapping a withered finger to his chin. Or at least what might have been a chin. His hood mostly hid his face.

“You know, that’s a good point,” Wizzro said casually. His grin grew. “What do you say we test it?”

And then before anyone could react, he whirled around and shot it through his shield directly at Wind and Four.

Pure light burst from the device, so bright that it seemed to blot out every sense that Wind had. He plainly heard his father’s panicked shout though, and Wind had just enough time to grab onto Four before the light intensified over them like a solid weight.

His breath left him, otherwise he would have screamed with the way it felt like every cell in his body lit up with energy. The world swirled around and the light felt like it was passing through him, pulling and tugging him away.

Wind held Four with everything he had, and the world went white.

...

The blinding light lasted several seconds, then abruptly faded, leaving Time, Warriors and Wizzro all blinking rapidly in an attempt to regain their vision.

And when it did, Wind and Four were nowhere to be seen.

Wizzro blinked, looking at his weapon, then at the place where Wind and Four had been, and then back at his weapon again.

“Hm. That wasn’t supposed to happen.”

Warriors decked him with a blast of ice to the chest.

(...)

Wind woke up to a distant call of his name, and someone frantically shaking his shoulders.

A groan escaped him, and he managed to drag his eyes open, though he immediately closed them again. The light felt like it was burning his eyeballs, and even though the shaking was kinda frantic, Wind didn’t move, trying to get the world to settle and the pain in his head to ease up.

“Wind! Come on, wake up!”

At the sound of his brother’s frantic voice, Wind finally peeled his eyes open, despite how much it hurt them. The light was a little less intense this time though, and he made out a blurry face in front of him, expression on the panicked side.

“Uh... Four?” Wind managed to groan, and Four nodded, looking relieved.

“Finally! I woke up like ten minutes ago, I wasn’t sure if you were ever going to. I had to drag you into an alleyway!” he said a little frantically, and Wind squinted at him.

“You dragged... wait, why?” he asked, sitting up with a grunt. Ow. “What... what happened?”

Four bit his lip, and looked behind him somewhere. “I... I don’t know. That light hit us, and we got thrown somewhere, I guess. But when I woke up people were staring at us, especially at our suits, and this one guy looked bad, so I tugged you away when he glanced away, and Wind, it looks really weird out there.”

“Really weird how?” Wind questioned, and Four anxiously rubbed his arm.

“Like... wrong.”

Wind frowned, and looked around the alleyway Four had dragged him into, not noticing anything too out of the ordinary. It was a little stinky, but there was nothing wrong.

Not until he saw a poster on the wall that made his stomach lurch.

Wind stood, wobbling for a moment then righting himself, and walked to the wall, staring at the poster. It was partially torn, but still almost entirely legible. The part that had caught his attention though, was the part that said DIRK LAKEWOOD, KEEPING US SAFE.

Four looked over his shoulder and choked, and Wind kept staring at the poster, Dark’s winning smile making him want to tear the poster up and run.

“Th... that’s Dark,” Four said shakily, and Wind’s mind flickered back to the disaster with Dark and the island, the robot and the fight, and... Four almost getting kidnapped. “How...”

“I don’t know,” Wind said quietly, and looked at Four. “But... I think that light did more then just zap us off the roof.”

Four paled a little and leaned against the wall, and Wind’s mind was running in overdrive, trying to figure out what this meant. Dark was dead, no doubt about that, but somehow he... wasn’t?

Rapid footsteps pounded nearby, and Wind and Four startled and ducked back a little, watching a figure charge into the alleyway and begin working his way up the wall. It was a super, outfit a dark red, hints of black and green interspersed, and Wind squinted, the colors familiar, yet... not.

Four suddenly gasped, and Wind realized it was Legend jumping over dumpsters and climbing up onto the roof. But last Wind checked, Legend was at home with a cold, and the Legend currently working his way upwards was all wrong, the colors of his suit too dark, his frame skinnier than it should be.

Wind caught a brief glimpse of his face, and his blood went cold, the face so obviously his brother’s and yet not at the same time that he had to sit down.

He and Four watched the strange Legend disappear onto a rooftop, and didn’t say anything for a few long seconds.

“I think you’re right,” Four finally whispered.

They exchanged frightened looks, and Wind glanced back at the poster one more time, Dark still grinning at them with an obnoxiously perfect smile.

What had they just gotten themselves into?

[heavenlymusickcorporation]

Movies about little tiny mouse sized people/animals living among our societies are so good

[jelliibeanz]

looking for online friends, specifically ones that will call me lil/big guy, man, dude, boy, literally anything masc pls pls pls dm me. ii cannot express this enough nothing nsfw ii will block u immediately

fair warning tho ii am autistic and if ii don't feel like texting back right away ii won't and then forget completely, don't think it's because ii don't like you if you spam me or just remind me ii will text back

if you're looking for friends im right here !

[pa3ch]

I created a piece I felt represented my worst symptoms associated with my fibromyalgia. I couldn’t figure out how to represent dull achy pain, but you can see depression, spiky electric sensations, the rock represents muscle tension. Let me know what you all think!

[endometriosismemes]

Good counters to stupid advice?

Everyone contributes something and if we get unsolicited advice, we can say something about it straight away without taking it home with us and being sad about it.

For example:

"You've got to feel better at some point" or "You're always feeling bad" with something like: "Do you understand the term chronic/incurable illness?" feel free to add something!

[lostestleo]

I apologize, I forgot to put a trigger warning before. I do mention suicide.

As a chronic pain patient/advocate who is newish but oldish to the game, I have learned that the argument of addiction is the reason people in pain are not getting proper pain relief. And if you are lucky to get pain relievers, it comes with a big, red scarlet sticker saying the medication “can cause dependency” on the bottle... well, think about it: if you have daily pain, you will need daily relief if you hope to live a normal life.

But there is a major difference between addiction & dependency:

Addiction is an insatiable desire for the medications immediate “euphoric” effects, aka “chasing the dragon” which typically lasts all day. The patient may end up over using/taking much more or all of the prescribed amount within a shorter time period.

Dependency is when the person needs the medication to sustain a decent quality of life. The patient is taking their prescribed medications as directed so that their body can function properly.

An example of dependency is a diabetic patient needing insulin so that they can live.

The problem is that addiction is in everyone, and everyone has some form of addiction that is waiting to be ignited. It is a basic human condition to “want more” and it can be a result of MANY things including a traumatic experience, or even the dreaded “peer pressure” during a high-school party. It can happen with gambling, sex, exercising, even food… It is a spectrum. And it is up to the person to determine their path.

We have reached a new stage of our awful human evolution. Being thin is a societal influence, something that people will kill them-selves for, and we now have everyday people using the diabetic prescription drug “ozempic” as a way to lose weight.

Diabetic patients who are dependent on this type of drug are unable to fill their prescriptions because of the high numbers of non-diabetic people using this drug for their personal gain- pun noted.

To be blunt or a bit dramatic, we could say they are abusing or misusing a diabetics drug.

A person in pain asking for medical attention is shamed, mocked, reported, harassed, and some extraordinary nurses have even taken it far enough to record their rejected “drug seekers” walking out from the hospitals as they’re laughing in the background.

We have been waiting for justice for what seems forever, and some pain warriors have even decided death is better than endless pain… there are so many. It’s not just pain patients either, an ER doctor Dr. Steve Ortiz committed suicide, because he was unable to help his patients. He was continually harassed by the ones who made these fucking rules. He wanted to bring light to the corruption with his death, leaving behind his wife and children in hopes for justice.

And now pain patients everywhere get to watch our society do exactly what they claim to hate us for: abusing someone else’s medication…

Self reflection is free, and everyone should use it daily.

[owenpocketsize]

painting of a bigger project for Aurora, each song of WHTTH will have a little one like this. 🌼 9/16

[crazycatsiren]

As a technically invisibly disabled person, I'm going to ask ableds to please fucking stop using us to be shit to visibly disabled people and shut the fuck up like we'd all love for you to do. Kthxbye.

[1980sactionfigures]

Emperor Nightemare - Invisible Warriors (Lucky Bell)

[iiscpr]

la guadalupe

[starseneyes]

Maybe I'm More Than I Know (and maybe you are, too)

I hear it often, "You're Superwoman!" "I don't know how you get so much done." "Rachel, how do you do it?"

I don't say this to brag. To me, you do what you have to do. Yes, my life has a disproportionately long list, at times, and I'm the only person who can tick off the items.

I'm up against multiple invisible illnesses. But so are lots of people, right? To me, I try not to make a big deal of my health issues because I know it could be so much worse. I carry on as best I can.

But there are times I look back and realize that maybe, just maybe, I am Superwoman.

Over the past 24 hours I learned that for the four months since my jaw surgery in June I've been fighting not one, not two, but three separate infections attacking the bone on my left side.

I've been so hard on myself for feeling sluggish, for being tired, for struggling to get through. And while I was busy being hard on myself, I didn't know how much I was up against. I had no idea how hard my body was fighting.

So, okay, maybe I am Superwoman. And maybe that means I need to ease up on myself a little. Even Superwoman needs days off, right? Even Superwoman knows her limits, right?

Alright, Rachel. You're Superwoman. Now that you know that, remember to take super breaks, give yourself super patience, and recognize how badass you are, every now and then, instead of beating yourself up for not being perfect.

Oh, and you? The person reading this? Advocate for your health.

I knew I needed this second surgery to remove the plate early on, and while it took forever, I'm glad I got it. Take care of yourself, loves. You are your best advocate.

And, remember to give yourself grace. Trust me, it's a good thing.

[razziematazz]

the worst qualities of a cat vs the best cat in the world