#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.

#mysterious illness journey #chronic battle #health mystery #invisible struggle #unseen warrior #living with uncertainty #medical mystery #never ending fight #hidden illness warrior #health challenge #uncharted territory #invisible warrior #endless journey #health quest #living without answers #undiagnosed struggle #persistent hope #mystery illness awareness #daily warfare #navigating uncertainty #mystery illness

[eclectic-ways]

A part of the upcoming series I’m creating as my AI artworks.

Theme of inspiration: Fibromyalgia

Do you really know what it is like to lose hope?

Do you even know what it is like to draw away from your dreams, desires & potentials increasingly every day?

Do you know how it feels like to wake up to each day just to go through the same mental and physical agony over and over again?

Do you know how hard it is to fall and stay asleep with all the built-up frustration, sorrow, regrets and rage inside?

Do you know that STRESS did this to us?

Do you know the synonym of desperation & misery? It’s called fibrof***algia.

Do you know…….. this can go on for pages and I’m so tired. Will head to bed in the middle of the day.

So yeah.

#fibrowarrior #fibrolife #fibromyalgia #chronic illness #ai artwork #spoonie artist #bpd art #ptsd art #chronic fаtiguе ѕуndrоmе #chronic illness warrior #illustration #spoonie witch #witchyvibes #zombie #living dead girl #analogy #eclectic witch #curators on tumblr #art #invisible illness #invisible disability #invisible warrior #spoonie warrior #unalive #mental illness #treatment resistant depression #depression #anhedonia #mental fatigue #ai artist

[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.

#empatia #malattia #malattia cronica #chronic illness #illness #invisible warrior #invisible illness #comprensione #amicizia #amore #dolcezza #gentilezza #kindness #compassion #care #hope #hopefully #empathy #healing #chronically ill #chronic pain #chron disease #ulcerative colitis #gastroenteritis #eosinophilic esophagitis #mental illness #sickness #resilience #strength #friendship

[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.

#fibromyalgia #fibro problems #fibro warrior #chronic pain #chronic illness #invisible disability

[chronicsickness]

I don’t think people understand the grieving you go through when you become chronically ill. The realization that you’ll never feel healthy again. That you’ll have this struggle and this pain for the rest of your life. That your body won’t ever be or feel the same that it used to. Sometimes I just sit and I cry and I grieve because I miss healthy me. I miss her so much.

#chronic pain #chronically ill #autoimmune disease #systemic lupus erythematosus #lupus #lupus warrior #fibromyalgia #fibrostrong #ibs #inflammatory arthritis #endometriosis #bppv #invisible illness #illness and disability #postural orthostatic tachycardia syndrome #chronically sick #i'm sad #depression #grief #grieving

[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.

#pain warrior #pain pain pain #pain pain go away #chronic pain #invisible disability #chronic illness #chronically ill #ozempic #cdc corruption #propaganda #social issues #idk what else to tag #long reads #please stop #lets be friends #lost light #be kind #i am healing #live and let live #ramblings #pain suffering etc #pain suffering agony #i hate this #i am so tired #i am going insane #triggering content

[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.

#disabled #spoonie #cripple punk #chronic illness warrior #babe with a mobility aid #invisible illness club #disabled community #disability advocacy #disabled rights #ableds stfu challenge

[1980sactionfigures]

Emperor Nightemare - Invisible Warriors (Lucky Bell)

#invisible warriors #lucky bell

[razzipree]

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

#this was my first time drawing a cat #my warriors phase did NOT come in clutch #anyways i just wanted to draw him holding stu #bonus: hc that cats can see ghosts and etc #so even when beej was invisible to everyone.. #he still had cats at least that would acknowledge him #and even like him! #also. yes. the cat he’s holding is stu LOL #my art #art #fanart #beetlejuice #beetlejuice the musical #beetlejuice fanart #musicals #theatre #betelgeuse #bjtm fanart #bjtmtmtm #bjtm

[kindajd]

#multiple sclerosis #ms #em #esclerose múltipla #multiple sclerosis warrior #autoimmune disease #chronic disease #chronic illness #chronically ill #chronic fatigue #chronic pain #chronic disability #actually disabled #disability #multiplesclerosis #disabled #invisible illness #TN #trigeminal neuralgia #iconic #invisible disability #disabilities #multiple sclerosis awareness #disability awareness

[kellylynncurry]

The IV hits a certain way

And the sweet violence of my heart beating

Rocks the cavities of my bones

Sweeps the blood cells through my veins

Swells my skin two sizes too big

And I’m a mess again

- Kelly Lynn Curry

From the book Radiant Poppy

#poems and poetry #writers and poets #my poem #original poem #original poetry #original post #poem #poems and quotes #poems on tumblr #poetic #poets corner #short poem #my post #sad poem #poetry #poets on tumblr #poetscommunity #poetsandwriters #chronic inflammation #chronically ill #chronically fatigued #chronic pain #chronic illness #chronic fatigue #invisible illness #illness #sickness #disability #disabled #lupus warrior

[amanita-rubescens]

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

#ratatouille #the borrowers #beatrix potter #etc #nimh #arthur and the invisibles #arthur and the minimoys #watership down #rodent genre #warrior cats is a distinctly different vibe #cultural conceptions of rodents as whimsical?

[sapphicstacks]

Beatrice had a half-second to brace for the impact as she caught a figure sprinting in her direction in her periphery.

Chapter 14 of What if there was some invisible string? on AO3 now.

#what if there was some invisible string? fic #what if…? fic #avatrice fanfic #warrior nun fic #sapphicstacks ao3

[violet-phoenix-nebula]

I've recently found out that July is disability pride month.

I personally still struggle to apply the word disabled to myself, primarily because of the classic 'not enough' mindset. I was diagnosed with fibromyalgia a few months ago, after my symptoms worsened drastically following a car accident and concussion.

Maybe it's partly because this time last year, most of my body worked the way it's supposed to, minus some pain.

Maybe it's because I can still walk and function, though the duration and frequency I'm capable of has plummeted.

Maybe I would still feel 'not disabled enough' if I was paralyzed. Who knows. But 'disabled' is a word I struggle with right now, despite fibromyalgia being listed as a disability. Classic imposter syndrome, really.

However, it's a lot easier to use the words 'disability' and 'disabled' when talking about my 3 year old daughter.

Not because she's currently, actively disabled in the way adults with Ehlers-Danlos Syndrome are, but because of how likely it is that she will be disabled to some degree as an adult.

My 3 year old, who has already had a dislocation.

My 3 year old, who has been in physical therapy since before she could sit up.

My 3 year old, who will most likely be in physical therapy her entire life.

My 3 year old, who won't be able to play the majority of sports in school.

My 3 year old, who will inevitably notice all the things her (fraternal) twin can do that she can't.

My 3 year old, who already knows when to bring me the children's tylenol.

My 3 year old, who is already familiar with chronic pain.

I'll tell you right now, that last one is gut wrenching. To know that my tiny, innocent child deals with chronic pain already... There truly aren't words.

So, while I'm still a bit uncomfortable "claiming" disability pride month for myself, I will loudly claim it for my child.

Fibromyalgia flag credit: @bees--on--toast

Ehlers-Danlos Syndrome flag credit: @eddies-spaghetti

#disability #physical disability #invisible disability #disabled #disabilties #disability pride month #fibromyalgia #fibro #fibro strong #fibro warrior #eds #heds #eds zebra #ehlers danlos #ehlers danlos syndrome #hypermobility #hypermobile ehlers danlos #hypermobile spectrum disorder #zebra strong #ehlers danlos zebra #zebras #hsd #hypermobility spectrum disorder #chronic fatigue #chronic illness #chronic pain #chronic disability #chronically ill

[crazycatsiren]

Physical exam: normal. Full blood panel: normal. Me and primary care doc: well we both know all is not "normal".

#it's funny because it's true #the struggle is real #disabled #spoonie #cripple punk #chronic illness warrior #invisible disabilities

[1980sactionfigures]

Prince Dragon - Invisible Warriors (Lucky Bell)

#invisible warriors #lucky bell