The Last Weeks Were Somehow Mentally Heavy. I Mean, I Know Why, It’s Just That I Always Hope, That

Review: the WHY café

Read this today and uff, no, I wrote a book on similar topics and my book is simply better. Don’t wanna brag, but it’s true.

The idea, that once you have found your reason for existence, the thing that you want to do every waking minute of your life, that after that you will have enough money to survive, a job, and oportunities will come to you like it’s universe working for you… it’s fun untill you ask yourself “and what’s about the ill?”

Why does nobody ever thinks about the ill? The Disabled? Those, who don’t have the same room full of “you can do whatever you want”s to choose from?

Made me very angry. So, if I knew what makes me the most fulfilled and happy, and I was knocking at all doors and I was talking to all people about it, learning, creating, trying, working my ass off for this… but then got chronically ill and hat to reconsider everything and give up on bunch of dreams… that means I what, did not want it hard enough? If knowing what you are here for and working towards the fulfilment gets help for universe to make the road easier, does it mean I got punishment? What about people who are d*omg in wars and from diseases? The children even, literal children, why does it happen? Why do most passionate dancers loose legs and writers get brain injuries? I don’t believe in a Christian god who is “testing is”, nor I believe in punishment from “something bigger than we are”. I don’t think people deserved to get ME/CFS and become unable to get up, have a chat, read a book or even deal with smells/light/sounds. I don’t think I was ment to not being able to dance, jump and run, to not be able to wake up and feel rested (ever), to not be able to remember words or what I was doing just in this moment. It’s silly, I need to look for clues when I do things and then forget what I am doing. It’s silly untill it happens to you and you understand, any day your intellectual abilities can just leave you and there is nothing anyone can do.

This book is for health people who are in denial about the fact, that over 80% of Disabilities are not born with. And that at some point in a certain age we all become Disabled and need help and will have access needs. And everyone, especially since 2020, can get things like ME/CFS even if you were healthy before. And then no dream, no fulfilling idea, nothing will help and most certainly not the people around you who so desperately try to forget the existence of chronically ill and Disabled people and about them being just one accident or one unfortunate infection away from becoming one themselves.

Health people are just ✨different✨ in my opinion. If your main problem is not the ultra low amount of spoons, chronic pains, brain fog and not being able to do things most people don’t even think about while doing them.. yeah maybe you can gain smth from this book. But me, haha, I am like that, I just get angry and want to shake folx by their shoulders HONEY DENIAL IS A RIVER IN EGYPT!!

Anyways…

This is the pile of things I am planing to read while working through “Who’s Afraid Of Gender” (Judith Butler) for my thesis.

P.s. I already read Plato’a “Symposion” and wrote a paper in the uni about it, but I liked it so much I wanted to read something about Symposion since I have nobody to talk to about it.

🐦‍⬛On chronic illness and existential dread (not edited)🪺

I hope this year I will do more things. Choose to do more things I want to do instead of being afraid. This year I might have the privilege of spending the small amount of energy I have towards things I wish I would have already experienced. But this fears, oh, this fears.. their claws hold me tightly. They whisper „it’s not the right thing, you only have so little, don’t give it away for the perfect or the most important thing“… and I end up not using the small amount of energy. Like a fool. Like a naive, hopeless fool.

I wish I could save energy in a way, that I can stay curled up for days be then have a big eventful trip or just a day where I don’t need to „look at the watch“ (the energy-meter, if you will). But every time I go to sleep, I wake up with a feeling of regret. Every time I go to sleep, I am afraid of the next day. And I long for it, desperately, because maybe, just maybe, it will be the day when I finally move the claws away and am allowed to live?

Scared to disappoint myself, scared of what I have already lost, of the time that already passed. And longing for a fresh day, a fresh start, a fresh chance, just one more chance, I will not fuck it up! And then I do. But I am so tired of myself… it’s not a choice I keep telling myself, because 99% isn’t a choice, but this 1% is so painful. To see my Trauma and fears guide me instead of my knowledge and my hope. Good thing, that hope is patient. But am I? I have to be.

I shall walk when I can, cook when I can and laugh when I can. I shall experience what’s there to experience, no matter how small it seems to be in comparison to others, to those, who don’t live my life. To those, who, (for now?) are healthy. Or can afford the Great Denial. I shall write, I shall paint, I shall sing, as long as it’s possible. I shall get up early when I can and go to sleep early, because my body needs it. I shall be kind to my body, because it’s suffering from the same illness I do. Because it feels, like we aren’t the same, like there is me and there is my body. And there is the tiny child who wants to play, and the most scared adult, who is afraid to move at all, because what if violence will return?

But it will not. I deserve to live what’s there. And next time maybe I will have more.

I deserve to experience the beautiful simple things, because they are what makes life worth living.

https://app.thestorygraph.com/profile/elfi_reads

My storygraph Account✨ it’s created by a Black cis woman (hope it’s true) and should be better than good reads. I really enjoy that people can submit trigger warnings and also upload their books themselves.

Just started Shadow And Bone. I watched some of it via Netflix adaptation, but once I have found out that there is a book I did not want to finish watching. Also, I remember very little if the story, so I almost get to know the characters for the first time.

My comment:

Yes! This! Sure, screens not cool, Social Media ruining Generation after Generation BUT no social media and no screen actually made damage to all the parts of the body, made your immune system weaker in a way that you are constantly ill with a new thing, made your immune permanently Disbaled, made you so ill that you cannot leave the bed, have a smalltalk, smell stuff or cope with light, cannot remember simple words on a permanent basis, forget the things that you are actively doing in the moment, isolate you from most of the people and almost all places due to lack of acessability and/or your health state, made every condition you have much worse and with every re infection you become worse and worse and actually even if you have been healthy and have been using no screens and no social media you still can become Disbaled and chronically ill in the worst way possible (but even the mild/moderate cases are horrible believe me please). So yeah… phones, right?..

P.s. the way people are in active denial being like “yeah but have you seen research to the way phones alter our brains?” Well yes, but it’s reversible and you can literally just do your best and make yourself busy without the phone. But there is no way you alone can prevent a covid infection and there is no cure or treatment for ME/CFS (which is so often the main chronic illness end up after covid) and LC. So… I would choose the phone and do what I can to not have a problem with it. But even though I mask and have been isolated by people who have been my friends and also by academia, medical institutions, states decisions ect., I am still at risk of re-infection and loosening even more of my energy, brain capacity, concentration and NOTHING is under my control. I can only do things and hope but there is no evidence that some things actually always help. None. You can ”cure” phone addiction or short attention span as a result of social media but you cannot cure ME 🥲 so how about stop the denial, take the mass disabling event seriously and stop comparing apples with oranges?….

It’s always “phones are ruining our brains” and never “the virus known for post-viral cognitive decline, which causes short term memory loss, brain fog, and decreased spatial reasoning, that we let run rampant through our communities for years is ruining our brains”

Berlin🌸

🤎✨Feel like cotton✨🤎

While working on a telegram Chanel for the clothes and other items I make I tried to count every item (excluding pinns, patches, sticker, postcards, posters) I have made since starting the project in 2019 and even having quite abbreviated in between years… 93 items is what u could count. But I don’t remember all of them and definitely don’t have all of them photographs either •_• so there is actually more. Probably over 100.

Internship in the Theater turned out to be quite an underwhelming technically and overwhelming morally type of disaster… I have the hope, that it will get better, once people start trusting me being on fellow human being, but for now they just alienate me most of the time. Only the acting folx are truly nice and don’t care for my looks and the mask, they treat me kindly. Once again, Disabled people behave more humanly than non-Disabled folx while the whole world pretends like Disbaled people need to be dehumanised.

Sadly I don’t read atm, but started to play Sims Medieval (Pirates and Nobles) and it’s quite fun except of a racist name for Roma people. Treating roma and sinti like they are mythical creatures out of fables, putting them together with “the knight, the wizard, the elves, the princess..” like it’s a school play.. really not cool. Don’t understand why they still didn’t change it.