Ina • me/cfs
@tink_ina
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#mecfs 12 years, severe. bedbound w near fatal spine injury causing a yet to be diagnosed neuromuscular condition. 🇸🇪
Joined March 2023
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Pinned Tweet
one of the oldest photos I have on my phone. think I had been sick about a month, and I was struggling through the beginning with fever & flu feelings, exhaustion, pots, IBS, food intolerances, feeling drunk, drowsy, brain on fire, cognitive symptoms, night sweats & much more
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To all doctors: “It’s rare” is not a valid reasoning or method to diagnose. Someone actually has to have it, you understand that right? And it may be the patient in front of you.
Run the damn tests when patients present the fitting symptoms 🗣️
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When someone gets sick, it’s crucial that the rest of the family members go to therapy so that the very sick patient doesn’t have to bear the burden of everyone else’s projections, anger, resentment & deep rooted issues + false ideas about chronic illness and disability.
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“Disability envy”
There’s something I need to call disability envy.
It’s when healthy, able bodied people are under the incorrect and misguided perception that chronically ill & disabled people get attention and advantages from being sick. It makes them jealous.
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A life saving tip for chronically ill people with severe fatigue; don’t let your posture become hunched over even if you don’t have the energy to hold your upper body up straight. It can/will cause weakness in the neck which leaves to neurological structural symptoms.
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#MECFS
patients in toxic families REQUIRE bio markers & doctors that validate the disease from day 1 in order to minimize abuse/neglect/denial from family. Additionally, the families need coaching & support to increase understanding to ensure patients stay safe & protected.
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I think if me/cfs didn’t have mf CRUSHING fatigue, severe cognitive & neurological symptoms then we could’ve advocated for ourselves about a 100 times harder. We need it the most but can do it the least. I ask myself a lot why family/friends don’t feel passionate to do it for us
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There is no healthcare for ME/CFS and that is so fucked up
The sickest people in society who can’t make it on their own are told to go home and rest.
There is NOTHING for us.
Every day I wonder why people on the outside aren’t upset enough on our behalf to help us.
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Being bed bound with no caregivers and a family who don’t really want to care for you means getting scolded for having needs.
I’m trying to recover from a near fatal neck injury and being yelled at on top of that, instead of getting comfort, is just pure vibes.
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AN OBSERVATION
Everyone with
#MECFS
is going through active severe trauma which makes everybody hypersensitive (a natural & normal response)+PLUS everyone’s getting neglected when they should be receiving endless love, support & care. Now add in the anger factor over the fact 1/7
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It makes sense to rule out the most common causes first, but after that, rare, fitting conditions must be looked into, too. It’s lazy & negligent to send people home with “it’s rare, forget about it.” Do your job. Care about the well-being of your patients. Find the cause.
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Unfortunately, it���s always the patient who has to carry the burden of everyone else’s emotional issues and toxicity, leaving them venting in therapy — not about how hard it is to live with chronic illness — but how hard it is to live with fam members who cannot deal nor support.
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It’s deeply triggering for me seeing people as sick as me, get 100 times the help, support and medical care daily, more than I’ve received all these 12 years.
Most days I can’t go to the bathroom. I have to anyway. Adrenaline carries me there & I’ll shake and cry cz it’s too much
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I’ve been severely sick for 12 yrs since I was 18 and missed out on growing up and developing.
I don’t know what it’s like to be 19, 20, 21, 24, 25, 27 or any other age I’ve suffered in darkness through.
Everyone my age is a lot older than me. I don’t know what I am.
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Today I’m so weak I can barely make 5 steps to the bathroom, and the reason for that is that before I was born - 35 yrs ago - some evil psychiatrists in the UK started a smear campaign in the media against my disease, so today there’s no medical care available to me.
#mecfs
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Not to mention, how beneficial it is for family members themselves to work out problems & fears around having a sick family member — a devastating situation that may feel hopeless & frustrating. It’s important that they get support, too, and don’t bury their head in the sand.
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@elle_carnitine
This is how I almost died in 2020. Drs didn’t even raise their eyebrows when I said I hadn’t been able to eat for weeks. Lost 12% of my body weight. The consequences of the starvation on my brain, nervous system, muscles, was so, so severe and no care for that either
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One of the worst things about being sick and relying on a fam that treats you like a burden is that they make you feel like a shit person, you turn into someone very angry, resentful and defensive. They make you feel like you’re the problem & you believe them
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@RoadsideMum
People in the comments saying feelings can cause symptoms are correct, but your post is about disease. Being nervous can cause diarrhea, but that’s not a disease. Feelings and thoughts cannot cause DISEASE.
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#liefdevoorc
éline
Such a good piece about Céline and her life with me/cfs.
Don’t know her but wanted to bring some attention to this. I hope there is peace after this🥺💛She deserved better.
You can translate in iPhone to English
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The chronic illness brain retraining community says the same thing… I heard this for years until I cut them off completely. HORRIBLE. They think you indirectly manifest your illness and if you don’t get well, it’s on you and your ‘fear of getting better’.
New level of medical gaslighting unlocked: “you have locked yourself into a sickness cycle and are making yourself sick”
Sir how exactly do you figure I manifested this illness into existence?!
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I wish there was/I wish I could set up a foundation that helps ME patients in tricky situations
• getting them out of abusive homes
• access to carer/real life support for their practical needs
• advocating
• mediate w difficult ppl
• mental work like applying for $
etc
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Todays me/cfs patients are so much more educated than I ever was. My definition of PEM was simple. Crash = PEM. No crash = no PEM.
Eye pain due to daylight? Wasn’t PEM to me. Only the hit-by-a-bus-crash was PEM in my head.
Didn’t know how much more I needed to pause & rest
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All I want, is a normal day. To put on regular clothes, walk out the door, get in the car to go get food and gas or something. I’d kill to run some errands and drive around w music in the car, windows down. It’s ok if it’s a rainy day. Idc
[pic from my 4th year as sick, 2015]
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that we’re getting medically neglected & our illness is political when we just want care and treatments. We get gaslit, disrespected, treated like clueless children while people watch us suffer, and doctors do not care. This massive personal and systemic neglect 2/7
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I don’t want to be inspirational to anybody.
Be inspirational to me. Healthy people, strong people, loved ones; be inspirational to me. Be inspirational to all of us. Fight for us. Fight with us. Do the heavy lifting. Move mountains. Do it for us.
Be inspirational to us.
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To put things straight,
#mecfs
patients often rot away and deteriorate with continuous betrayal + abuse + neglect because many families just can’t bring themselves to love, protect & support their weak, but instead bully, force, dismiss, oppress, harass & abandon them.
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I wish there was a magical human being who could be awake 24/7 and could be by my side any time I need them and any time I’m scared and freak out over symptoms. It’s truly awful to be alone all night, scared in the dark & can’t call anyone cause they’re sleeping
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ESPECIALLY young ones who have yet to had a chance to form their own identity and strength away from said families. It is too much for a young patient to fight a severe illness AND a whole abusive/neglectful family system all by themselves, without support or independence.
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I don’t want to be here. I want to be in the water. I want to be on the beach. I want to be normal, unaware of what can happen to a body. I want to laugh in the sun with naivety like everyone else. I want there to be a beach, an ocean, and me being unaware of everything else
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Woke up seeing the love and sadness over Céline on my feed and was pleasantly surprised by the community❤️
I see myself in Céline’s story. We all do.
She is not the first to go. Nor will she be the last, unless they stop this.
I won’t stop talking about her🤍
#LiefDeVoorC
éline
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Chronic disease doesn’t get easier with time.
With time, you lose more.
The grief doubles.
More bricks in your baggage to drag around.
More opportunity for people & life to hurt you when you can’t handle it.
You don’t get stronger. You go numb.
And everything hurts.
#ptsd
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ADDITIONALLY
#mecfs
patients require 100% financial independence from family members to ensure they’re able to make their own treatment & life choices to prevent deterioration + support recovery chances. We cannot put trust & control in dysfunctional families’ pockets.
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Mild + moderate ppl:
When you say that sometimes you can do xyz, can you actually do it, are you actually up for it?
I’ve always been severe & the only thing I can do is lay in bed. Everything else I HAVE done has been me forcing my body. Very unpleasant even if I don’t crash
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puts everyone in a vicious never-ending state of deep suffering - including deep emotional suffering.
There’s a big awful void where there should be lots of love, medical care, respect & support. People end up in a chronic state of jealousy and attacking other patients for 3/7
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It is dangerous when trauma is not acknowledged. People and their bodies, their nervous systems are internally screaming for validation, so they can find some ease. !
It IS an emergency. It has to, at the very least, be acknowledged.
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We’re walking (mostly laying) around with a massive empty void that needs to be tended to, BY OTHERS. We NEED support, we NEED validation. We NEED acknowledgment of how horrible this is, and we NEED action. We need people to step in and be ‘saviors’. Seriously. BECAUSE - 6/7
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It is NOT OKAY; The fact that all us patients not only deal with the physical suffering, but also the social and emotional suffering due to this horrible abusive familial/societal/medical NEGLECT is insane. 5/7
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All this stress adds to our illness burden, insomnia, stress & puts our health at risk every day. This burden is too much to bear. People have to understand that - even on a political level. It has to be recognized and acknowledged all around. For the sake of our well-being.
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@DonellaVolkova
Minimalism should only be done by people whose souls sing from the peace and gentleness of stylish simplicity. Only they can do it well. Not the average person cause they can’t put soul in minimalism if they just do it for the trends😭
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On a good day I can read one short article with great effort. Then, I remember nothing. How am I suppose to do anything with this brain?
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having it better, having more, receiving more. It’s not uncommon that some patients feel a subconscious ‘competition’ over who has it the worst. Everyone CRAVES the absent acknowledgment & recognition over the fact that their bodies are in a chronic state of emergency. 4/7
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My FYP has ended up being like 95% long covid, I need help to get to the me/cfs community, how do I do that? Pls help a girl out
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I’m extremely sad and upset that I didn’t get to grow up with my friends. 18-21 is such a significant age. 21-23, 23-25, and then late 20’s. I don’t know what it feels like to be 27 and have had 10 years of life and growth, then turning 30 which is huge. I’m just…what’s my age?
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I’ve had a constant existential crisis the past 3 years now. I don’t like this world. People are cruel, cold, selfish and there seems to be destruction and struggle everywhere. Things I wanted for myself I don’t any longer. My dreams are gone. I hate it here.
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This made me so mad. Britney’s voice and freedom was stolen from her for decades, her story told by everyone but her. She is not “bringing up the past”, she’s telling her story for the first time in her life & we wanna hear it. People who harmed her have to face the consequences.
Justin Timberlake is "focusing on his own family and trying not to concern himself" with Britney Spears's memoir revelations.
A source tells ET, "Justin and Jessica just want everyone to grow and evolve instead of continuing to bring up the past."
🔗:
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@Yasminsaurusrex
it’s UNACCEPTABLE that this happens. Serious symptoms are so frequently dismissed as anxiety and it’s a crime.
I’m angry for you, with you, for myself and all of us 🫂❤️
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“Children have no way of identifying a lack of emotional intimacy in a relationship with a parent. It isn’t a concept they have. And it’s even less likely that they can understand that their parents are emotionally immature. All they have is a gut feeling of emptiness- 1/2
#cptsd
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I really wish I was one of those girls on Instagram who healed after 4 yrs and now sprouts glitter and positivity from their ears😭 Talking about how it was a journey that made their life better and how everyone can heal too blah blah
I’m mad and I’m jealous
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I don’t really know how to *fix* it cause if you’re too weak and exhausted to hold your body up straight it’s like such a bad situation, what can you do? But maybe work with a physical therapist who can help you counteract the problem in ways that works for you.
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@Amnesiac2326
I suspect insurance & the government does that too when applying for things.. like I dunno reasons to deny your application or something
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It makes me furious how all of our deterioration is due to the neglect, abuse and what I want to call abusive ignorance and disinterest in the well-being of actual human beings.
Patients are not objects or discardable. We are humans and we are delicate and we deserve healthcare.
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The wellness industry eats that up though 😂 they loooove hearing everything can be fixed with the mind
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A difficult thing about being sick is you can explain the same thing over and over to some people, they’ll forget it each and every time, and criticize you for that same thing each and every time. Year in year out
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Also I don’t think I can cope knowing how much you guys suffer too. Is every day HELL for every single one of you like it seems here on twitter?
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Chronic illness math is drinking less water so you won’t have to go to the bathroom as many times
#bedbound
#severemecfs
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Update: ppl are pointing out that therapy can reinforce ableism which is TRUE — I only meant to point out that it is harmful & traumatic for a patient to be put through their toxic fam’s ableism. In a perfect world, THEY should work on that in whatever way. Not us patients.
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My heart will never heal from my own family thinking I was faking my illness or exaggerating symptoms. Putting all their neglect and abuse aside, and all my anger, resentment, helplessness and despair, beneath it all it’s very simple; my heart broke
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being stuck in this bed day in day out having no choice but to think about every big and little mistake I’ve ever made that got me here is such a cruel punishment. all these regrets and no ability to turn back the clock
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@stefkaufman
Do you think one of the root problems of little societal community or little desire to support others, (selfishness,essentially) is due to how overworked people are? It seems like nobody can handle a 40 hr work week, take care of themselves, have fun, AND take care of others
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@cstroeckw
There’s absolutely something very wrong with our muscles. The fact that we crash from massage is very telling of that. My neurologist who is familiar with me/cfs thinks that patients may be suffering from a micro spasm in the muscles which would not be visible —
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Being like 27 with your friends, having money, an apartment, a life behind you and ahead of you, a whole closet of clothes and things, experience, memories, mementos, a career, boyfriends, gossip, vacations and travels together seems so damn good. Life shouldn’t be 4 empty walls
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If I ever recover, I hate that every single answer to “oh how come you haven’t done [something I said I always wanted to do]?”
… will be “I was sick”
12 years literally washed away and 100% of everything I’ve never done for 12 yrs—which is everything—is due to fkn
#mecfs
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@RorPreston
lol right I stopped posting on Instagram cause I have no life, and that definitely brings my mystique through the roof📈 score🙄
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@DiaryofaSickGrl
It’s really really really really hard for me to understand how they won’t. I’m a natural problem solver and solution oriented. I like mysteries, and challenges. That’s why I never understood how ego could possibly stand in the way of helping patients. Like ..what?
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@JeremyVineOn5
Sick people aren’t laying around enjoying the benefits of no job.
We’re fighting for survival, for treatments, research, to be heard, to have our medical needs met & seeing doctors, advocating for a cure, EVERY DAY. We’re all working around the clock. We’ve payed taxes. HELP US.
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@fucklongcovid
Right. pwLC all got sick at the same time, it’s different!! Clear cause & can all validate eachother. PwME/cfs got sick in vastly different ways, alone, over decades & were individually told for yrs there’s not a diagnosis that fits them/exists. It’s just different, so different
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@RayDalio
@TisBest
Thank you so much
@RayDalio
+ everyone mentioned. I chose to give the charity gift card to an
#MECFS
organization; a severe neuroimmune disease that has robbed me of my life for over a decade since I was 18 years old. There is no cure bc of too little funding 💔
#millionsmissing
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if I didn’t get sick I would’ve spent my whole life learning things about life. philosophy, spirituality, psychology & more. I’m a very curious person (or was). but this whole circus the past several years has taught me everything I need to know:
everything sucks
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Might fuck around and become a doctor so I can gaslight them back
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— which is how a child experiences loneliness. With a mature parent, a child’s remedy for loneliness is to go to the parent for affectionate connection. But if your parent was scared of deep feelings, you might have been left with an uneasy sense of shame for needing comforting”
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Wanna add that they MAKE you angry and then think that you’re just an angry, rude person. Like yeah I’m that way around YOU cause you treat me like shit. None of my friends get that side of me cause they don’t put me in a position where I have to fight for myself and defend me
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I don’t understand why healthy people are so stingy with their energy. Won’t stop by the store on their way home for me. Won’t do simple things, won’t inconvenience themselves and if they do, they whine. Certainly won’t go the extra mile. It really hurts me. I feel so small
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@Bvolz3
It does!! Research is done on men so the symptom picture of illnesses are based on them. On average it takes years longer for women to be diagnosed. Along with sexism; women aren’t taken seriously, we’re just “emotional”. We used to be diagnosed with “hysteria”, now it’s anxiety
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Dreamt that I was on a white sand beach, clear blue water and I was diving and swimming. Best of all I had my old body and face back, and my long hair, sun bleached and all. I looked like myself
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@chronicnotebook
They meet one difficult needy patient a week and project that on the other 100 patients
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Another sign of
#mecfs
should be that you find it hard to verbalize your symptoms to doctors, because there’s so many bombarding you all at once that it’s hard to make out a single one. It’s like being hit by a truck. “Where does it hurt?”EVERYWHERE ALL AT ONCE
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Healthy people need a grip. People turn 30 and they’re like “is it too late to move abroad?😫”
What does that even mean? Why in the world would it be too late? Do they mean that it’s only socially acceptable to move to a different country between the ages of 18-29? what?
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Reasons you want to be skeptical about people’s me/cfs recovery stories:
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honestly mostly I don’t cry though because I’m so numb I can’t. deep survival mode
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I’ve been like this the majority of my illness. Esp the first several years. Really wish I had had people who saved me from myself instead of pushing me. I was already doing 10 times too much. How can you not SEE when someone’s tearing themselves apart? I always felt so invisible
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Since I got sick; when I’ve walked up the stairs (with
#pots
); I can’t breathe, my muscles burn, feel like I’ll collapse, and my heart pounds like a mf.
Still, I power up the stairs like a normal person, hold my breath, and make it look easy. Then I DONT lie down. Why? Dunno.
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Me in my head every day:
This is so scary I can’t do this I’m gonna die I’m gonna die. No I’m fine. Quiet. Panic will make it worse. Keep your head down and keep going. Pretend everything’s fine. *new symptom* *freak out* I’m gonna give up. Breathe it’s gonna be okay. Ignore it
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@chydorina
@Dakota_150
I think it’s often important to NOT have compassion for these people. We need it. We needed them. My experience has been that family is extremely attached to their independence, & supporting someone sick means accommodating/changing…which they think is out of the question.
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@ChronicMyalgicE
I didn’t actually grieve everything I’ve lost until year 10 because I had been so busy surviving and trying to heal to get out of this hell. Like a hamster stuck in a wheel
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For me/cfs patients esp those who are severe or has a severe ANS dysfunction meditation may disrupt your nervous system and turn on alarm signals.
SOOTHING the body physically is the first thing you want to do. Skip meditation and mind work.
@remissionbiome
How does meditation help? Just as 'trauma' can be seen at the cellular level so can mindfulness. Meditation actually causes a cascade of biochemical +epigenetic changes that affects cells, tissues, organs and of course what you think of as you.
12/n
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I wish I wasn’t here. I wish I healed the first year, resumed my life, never knew what these 12 years have been, didn’t have this monster of trauma inside me, and wasn’t here right now, tweeting this.
I wish I was somewhere else. Happy. Without any traces of this storyline.
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I wish all of this didn’t happen. I used to wish that if I could just wish hard enough then it would go away. I don’t wish anything anymore, I just don’t have any words. The life I wanted is so far away, it’s gone and it never existed.
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The problem is the doctors that harmed me with their neglect and dismissal is walking out there, free, like they’ve done nothing wrong and I’ve been here dying. Justice is nowhere to be seen
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Nothing makes me feel more disempowered than when I express something I would have wanted to do if I could and someone tries to encourage me to do it as if it’s fear holding me back and not severe disease
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Who can relate?
truthfully, it has always felt so god damn embarrassing to have a fam who left me to fend for myself. as if I’m responsible for it. It’s really hard to talk about it.
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