u/Past-Increase-2969

Ich (23f) bin vor einundhalb Jahren erkrankt, die Diagnose lautete einmal Post Covid, dann Postvirales Syndrom, und Kreislaufdysregulation wurde auch diagnostiziert. Seitdem hab ich die Dinge ziemlich schleifen lassen bzw war dann in Psychotherapie etc, war aber jetzt seit ner Ewigkeit nicht mehr beim Arzt. Mein Status is aktuell der einer Studentin, ich reiz es aus, aber das hat demnächst auch sein Ende, und ich mach mir Sorgen was danach aus meinem Status wird, weil meine Diagnose ja schon recht alt ist.

Seither hatte ich ne Zustandsverschlechterung und kann eigentlich gar nicht mehr das Haus verlassen. Ich bin letztens zu meinem Bruder gezogen, und hab hier keinen Hausarzt, und zugleich nicht die Ressourcen zu einem zu kommen. Meine Familie und ich suchen jetzt seit Monaten schon nach nem Arzt der Hausbesuche macht, aber ohne Erfolg. Keiner hat Kapazitäten und will mich nicht aufnehmen. Was mach ich jetzt? Wie find ich nen Arzt? Und kann man den Status auch mit der alten Diagnose ändern?

Ich bin aktuell in Frankfurt am Main übrigens.

I am an artist through and through. I studied theatre and media in college when I got sick, and had to drop out after three semesters. I'm not a particularly talented artist but it's what I was born to do. And I feel so imprisoned. I wanna go to an exhibition, an art gallery, to the cinema and book store, to an art supply store, wanna go second hand shopping, wanna take it all in, but I am here, here, always here, always the same fucking three rooms, the same conversations, the same problems, I legit danced for five minutes just now and my legs hurt immensely. I'm sick of praying for this to be a misdiagnosis, sick of hoping and pacing, I just wanna be ALIVE, I wanna CREATE, I WANNA BE PERCIEVED! I feel like I have no autonomy, and I'm not even severe, just housebound, and taken out by five minutes of dancing, I'm so, so, so tired of explaining every fucking time again and again how much energy I have, I wanna have unlimited energy, I don't want to explain things I don't like, I wanna talk about stuff that is interesting. I want to sit on the train, reading a book, being absolutely insufferably pretentious, checking the time and calculating how many minutes I have left until I have to leave the train. I wanna order sweet popcorn at a cinema. I wanna go to a proper techno club. I love techno clubs, they're the best. I wanna put on a fresh outfit, do my makeup, style my hair, put on perfume and accessories, and leave the house feeling like everybody's muse. I don't want to be stuck inside anymore. I wanna go outside. I wanna be seen. I miss being seen. Fuck. I miss it so fucking much. I cried for a solid hour today while doing my makeup in my bed cause I couldn't go outside and show myself. I did a glittery eyeshadow look, but nobody saw. Nobody sees anything of me. I miss being myself. I wanna give my best but instead I give nothing.

Es heißt die Buddenbrooks wie ich im Nachhinein drauf aufmerksam gemacht wurde, whoopsie. Oder ohne Artikel. Einer der fetten wummer von Thomas Mann halt lmao

Ich bin fast durch mit Anna Karenina und würde gerne was ähnliches aus der deutschen klassischen Literatur lesen. Vom Thomas Mann hab ich bis jetzt nur ein tod in venedig gelesen und fands sowohl inhaltlich als auch stilistisch grausam, deswegen frag ich ob ich Thomas Mann noch ne Chance geben sollte. Ich hab gehört Mann war inspiriert von Tolstoi und deswegen hab ich da mehr Hoffnung. Was denkt ihr?

Tw: insane amounts of pessimism

Tldr: I'm just very lonely and don't recognize myself anymore cause I forgot we evolve as human beings because I just survived day after day, and I don't really like who I've become.

I am very, very isolated. Well, right now at least I don't live on my own. The first year of this, I was alone, and now I live at my siblings place. I've been sick for around 17/18 months, which I know, rookie numbers and all. But in practice it's a shit ton of time, enough to forget every form of social etiquette.

I am autistic, so it's not like I was ever a social butterfly. Always somehow socially clumsy. But I put a lot of work into still being liked and being generally seen as a kind person with good intentions. I had entirely different motivations, I mean of course I did. I was feeling very loudly, and enjoying proudly, and when I was sad, I did it properly. I had a halfway functioning vault for my emotions. But now I became a hermit, a shut in, a neet and a spoonie, and it shows.

I've been feeling very weird these past weeks. Like I don't recognize myself. And I don't mean this the function way or anything, I am nothing but a shadow of myself and have been for one and a half years now, so that's not news at this point. But my entire moral system has changed, and I didn't even notice it. I am living so much day by day that I forgot that I am indeed the same person all those days, that I am bigger than one day. When you do live day by day, you stop chasing. And I don't even mean chasing in a bad way, you could be chasing after good things as well. But with ME, living just to survive the day and redo it on the next, without an overarching goal or anything, you lose track of yourself and who you become.

And these days I've noticed that I've become very weird. Like incredibly just weird. And sometimes, when I look at myself, it's kind of like the uncanny valley. I try to connect the me I was before ME and the me that has ME and I don't think there's much of a connection.

And there's another thing: I recently looked at photos that are just 2 years old and I aged. I look different now, I look unwell and older, and I didn't even realize it until now. My eyes sit deeper, my mouth is thinner, and the whole color of my face changed. I'm pale as a snowflake, like a sick Victorian child.

I am not who I was anymore. And that's not just because I grew up or something, cause then there would still be a trace of the person I once was. As I said, I see no connection between the person I used to be and the one I am now. It's like everything that existed before ME is wiped away.

This also makes working on yourself a lot harder. Trauma work, acceptance, all of that is easier to do when you know who you are in any way shape or form. Though maybe I just am describing trauma. I don't recognize myself.

I forgot that life goes on, and that people and things change. I was and still am stuck in survival mode, and I'm living groundhog day. I am surprised that I have changed and that the past year and a half has left a mark. I forgot how to socialize, and I panic when I have to do it. I don't know what facial expressions to make and when. I don't know what to talk about, ever, cause there is nothing noteworthy in my life, and people hate when I talk about my illness. Most of the time I'm just curled up somewhere and don't make a sound. I'm embarrassed to show emotion, so I don't, until everything comes boiling up and I do the stupidest most embarrassing shit ever that makes me crash. I haven't left the house in 4 months. Like, not a step over the entrance door. I see the same rooms everyday, eat the same food, drink the same coffee and electrolytes, every evening I'm happy that I survived another day, just for the next one to start after I wake up again. I read a lot, big books, small books, I read to have some sort of variety in my days. And so everything I have learned about the human condition the past months has been from reading about them. I don't have bad intuition or anything, but sometimes I'm genuinely surprised by how detached I am from reality. That I still speak about things that happened years ago, because there isn't anything new to speak about. I don't really like myself a lot when I look at myself and analyze what I see. I would not want to be friends with myself. I am just cringe.

Anyways, yeah. I don't really know what to do with this feeling and those thoughts, or else I would. I know in theory that I shouldn't be so hard on myself, and I hate when people tell me to not be hard on myself, cause it's not like it's my decision. I know that this is not my fault, but the thing is that this isn't even about my behaviors or anything specific, but me as a whole. The person I became due to very understandable reasons is someone that I don't like anymore.

And I can't really reinvent myself as well, right? Cause at the end of the day I'll still be the fatigued woman with no energy and housebound, so how much can I really change? I cut my hair recently into a pixie. I try to educate myself on things, become smarter in things I'm interested in. But none of it actually changes anything, cause I am, in fact, not what I consume. I am who I am, and that is an audhd woman with mod/sev me/cfs. I can cut my hair and learn a new language, could rearrange the room and I would still be the same. And maybe all of this is in fact too pessimistic, but I believe that we should live out all of our feelings, and if it's pessimism right now, then I'll feel pessimistic.

To make it quick:

Almost immediately after my first post covid collapse, I developed an allergy to sesame. I also had to get rid of gluten in my diet. I also can't take most supplements, L theanine, Omega 3, coq10. I also don't react well to nuts and stuff like that. I cannot take supplements with citrate. I cannot eat huge portions without my body refusing. I have lost like 5kg of weight though I was already almost underweight before I got sick.

The reactions I have are:

- digestive issues such as diarrhea or quickened bowel movements (and many more)

- nausea

- slight rashes, but veeery light and they don't really spread

- pem

- stomach and belly aches

- worsened anxiety, sometimes panic attacks immediately after eating

To the people that have MCAS: do you think I have it? Would it be worth going to the doctor for (guaranteed crash)?

edit: important to mention, I lived exclusively off oatmeal and apples for over a month when this started cause I seemed to react to EVERYTHING! Everything made me itchy, in the mouth and skin, gave me diarrhea etc. oh also, I almost became sober, like I drink a teeny tiny bit to ease my mind like every two months. I used to be a sort of alcoholic and now I'm not anymore lmao. Net positive but just weird. The hangover is insane.)

I feel like we often don't like to talk about the fact that we have actual trauma. Like, full on, psychological trauma. Because that could be used against us. If it's psychological, then what even is ME?

We often ignore that the onset alone, that the moment we realized something was wrong, is quite literally trauma and nothing else. And you can't judge us for that.

I like to imagine it as if life is a tree, and every decision you make forms a branch. And when you form a decision on the basis of another (for instance: I work, therefore I need a bike. I will invest in a bike to get to work. I like my bike. I will bike for fun) forms another branch. And that is your whole life. Getting sick with ME is like someone getting an axe and chopping at it, until there is no connection between the tree and the root anymore. And you hold onto it, with all your strength, while the tree withers, until it is ripped away, and all that's left of you is a stump, a little stump. Some of us still have a few branches. Some have none.

And how tf am I supposed to not react to that? How am I supposed to NOT be terrified of taking responsibility, making choices again? I have limited energy, I quite literally don't want to waste it on planting another tree, especially cause every single one of them was ripped out too, and I'm still just left with my stump.

It is not only about 'learning to live with chronic illness'. Letting go of everything you once were is painful. It's painful. It's knowing that even if the house was on fire, you probably couldn't flee, because you don't have the energy.

And that's fully away from the fact that 99% of the people don't take this seriously. Everyone continues living with their tree, branches sprouting, and it blooming beautifully, and they look at your stump and wonder why you're so scared. I, too, once had a tree. Now I don't anymore. I was not always a stump. My tree was in bloom even. And now it's gone, and I'm only 23.

I am nothing but illness anymore. I'm moderate/severe and cannot think of a single aspect of life that has not been drastically altered due to my illness. Responsibilities, simple ones as getting to the doctor, I cannot make on my own, cause how would I get there? Things I used to do for fun, like playing video games for hours and hours on end, now I can't do anymore, and my Playstation is left unplugged. I can read, and I read and read until my mind gets foggy, and then I can't read anymore, and I'm left with myself and darkness. Friends I visited weekly, now I haven't seen in ages, and even discord is too much, because it requires me to react accordingly in real time. And the shame, the immense shame, of finding yourself in a reality which you just don't understand. I don't understand how to be chronically ill. How do I get to the dentist with chronic illness? What do I say? And what do I do if I crash the day of the appointment? What do i do if the toilet is occupied and my digestion just doesn't work that day and I need to use the restroom? How can I leave the house without crashing? How can I manage the absolute terror this trauma has left me with? How can I just let go, and stop being hypervigilant? I don't know, because this was not what I was taught to be as a kid. I don't know. I grew up differently. These are not skills I have, and I am discouraged from learning them.

I would maybe call this the 'burnout of making decisions', because the stakes are just..... too high, all the time. I cannot make high stakes decisions everyday. I just can't.

And to expect of us to just keep going, just as a chronically ill person, to yell at us for suddenly not working the way we did, yet expecting us to be unphased is just so beyond me. What am I supposed to do? How will I ever be okay? I don't know, so let me grieve. Let me have decision fatigue. Just let me be.

tldr: the onset of me is equal to trauma, and it's hard to form a decision if you know that the decisions you made in your previous life were ripped away from you. It's terror and agony.

Posts like these have been done before, but I'm frustrated.

ME is often misdiagnosed, like 30%-60%, but also underdiagnosed. Recovery rates are 10%, but it is often misdiagnosed and actually curable.

It affects a lot of hypermobile people, but also overachievers, but also mentally ill people, but also neurodivergent people, and also women, but we don't know why, yet somehow we have to believe that the statistics for recovery rates are somehow too pessimistic, cause there isn't any clue on who is most affected. Many people are more likely to develop ME, but it can be anyone with equal probability.

There are tests to be done, but also, no tests to be done.

Brain retraining is bad, but changing your mindset works wonders.

Typical pem can start a day after stress and last for as little as a day, but if you only experience pem one day after, it's actually not pem, but typical exhaustion.

You gotta keep your nutrition in check, but if eating or digestion cause pem, don't be perfectionist over it, but also make no mistakes at all.

It behaves like an autoimmune disorder, yet isn't one.

Don't decondition, yet don't work out if it causes pem.

Severety levels are gospel, yet no one can sort me into one. Bit of this bit of that.

Pem is a standalone symptom for ME, yet if you experience it, rule out 1000 and a dozen diagnoses, cause they can cause something that somehow looks like PEM. Pace like your life depends on it, but visit 13 and a half doctors every month.

ME is common, but to get it diagnosed, I have to go to a special clinic 5 hours away from me. But those will also not take you, cause their waiting list is full. But also it's overdiagnosed. But also underdiagnosed.

PEM means flu symptoms, but it can still be PEM without flu symptoms. But if you don't experience flu symptoms in your current PEM, it's not PEM.

Long covid is almost an equal diagnosis to ME, but then It's not. It's important to have an ME diagnosis if you have ME, but Long Covid (or long anything) is actually also enough.

ME is guaranteed to make you mentally unwell, but if you're mentally unwell, it's mental illness and nothing else. Reach out on online forms, track your symptoms, educate yourself online, stay in contact with friends, but screentime BAAAAD!! SCREENTIME NO NO!!

Take supplements. But don't take supplements, it can cause PEM. Believe in recovery. But recovery isn't guaranteed in most cases, so don't believe in recovery.

AAAAAAAAAH!!!🗣🗣

Ok, so before I start: yes I need to get to the dentist. Working on it. Kinda hard when you're severe and bedbound the vast majority of the day. But yes, I know. Just wanted to ask if anyone ever experienced anything like that.

About 3 months ago, I moved places, from my own flat to my brother's. It made me crash severely. I got very sick, I couldn't eat for 4 days, had a fever for most of it, I felt like I was dying, like when I just got sick with mecfs (which was 16 months ago) and I'm still not back to my baseline, and I think I would now qualify as severe. I have two teeth with fillings, the rest are all perfectly clean as dental hygiene is something I take very seriously, plus I think I might got a bit lucky. However, both fillings are old (one is 6 years old and last got checked 3 years ago, and the other is around 2 1/2 years old) and very deep. I never had issues with them pre move, but then I did move, and suddenly I kept having issues, and they were always switching sides. One hurt, so the other was quiet. The other hurt, so the original tooth was quiet. Never did they hurt at the same time. I used one tooth for stimming, sucking on it and playing with the filling, which was not the best idea, because my nerve got mildly infected. I went to an emergency dentist and she made an xray of said tooth (the one with the 3 year old filling). It looked perfectly fine, no deep or visible cavities. She gave me some gel, I went home and crashed severely, for about 3 weeks or so. But the tooth did heal. And now I keep having problems on the side that I didn't get an xray of. And the worst thing is, it's not only this uncomfortable feeling. I can also taste something, like this disgusting taste of something being wrong. That taste also switches sides. When one side is sore, the other side tastes neutral, like mouth is supposed to taste.

This is not an emergency, I would know. It doesn't even hurt properly. It's just like... I can tell that there's something not ideal, like there's a small wound that is healing and itchy. The filling looks aged. And in my mind I come to the scariest conclusions. About how now I suddenly have a deep deep cavity under the other filling.

But now I am wondering: could this be a sign of severe PEM, and the new severety level altogether? Cause it just makes no sense to me that two teeth would become problematic basically within 3 days, especially cause by now I did find my new baseline, it's just a lot lower than it used to be. Does anyone experience any issues with their teeth? I also do have CMD issues, but where does the taste come from?

It kind of makes me go insane, so please just let me know if you experienced anything like this.

I know this might sound dumb, I didn't find another way to phrase this. I'm severe, rarely on good days am I moderate, and always housebound, and nothing about this is stable. However, I wish it could be. Like, I wish there would be some universal truth about this illness that I could always rely on. But then I feel good for a few days, and I'm on top of things, can have full conversations, digestion works more or less, I can shower, and I almost feel like an imposter. And then I crash, and I feel like yeah, now this will be forever, I will never recover. And then I recover, and the cycle repeats.

Do any of you recognize this pattern? It's something that always makes everything worse, cause when I have a good day I overdo it, which makes me crash harder than I should have, and when I'm in a crash, my panicked mindset drags the crash longer than it would have to be. I know I should avoid crashes, and I am, I'm pretty stable, I've had one entirely stable week just now which was incredible. But now I crashed again, slight fever and terrible digestion, brain fog like we're in silent hill, and I always blame myself so harshly. And I wish I had something to come back to regardless of how I feel. How do you deal with that?

I will be avoiding the dentist like no tomorrow. I'm moderate, getting worse these days, poking into severe. Hilarious how this works..... I legit don't have energy to eat these days, why would the wisdom tooth come NOW???

I went to the emergency dentist like a month ago because of a completely different problem, and they said I was fine and it would calm down, and it did, and I crashed immensely after the dentist, and then another problem on another tooth appeared, and went away, and now I have this wisdom tooth. Life is genuinely great. Might update how it goes lmao..... I feel a teenie tiny bit defeated. It's a bit inflamed for now, no swelling, no big pain, so maybe it'll be fine. I hope so at least. Just wanted to let this out somewhere. I'm kinda frustrated. I wish my teeth were made out of chrome or something.

I thought I was the last one to realize I'm disabled. Turns out I'm the first one.

I feel like yapping, so here we go:

After over a year of hating myself and pushing and crashing, I'm done blaming this on myself. I have a disability, and it's not my fault. I'm done with saying that 'even if I am disabled, part of this is my mental health', cause this is what I did for the longest time. 'OK, I'm disabled, but it's 50% mindset. Alr maybe not 50%, let's say 30%.'

This is not even 2% mindset. This is 100% a disability that I had no say in whatsoever.

Because you can only do this for so long. Say how you've always been weak and fragile, how dumb you are to be weak and fragile. I am not fragile. Hell, I have a very challenging body and life, and I am strong as hell for keeping it going. To anyone out there with mecfs or anything close to this: you're strong as hell. You really are. Don't let anyone else tell you you're not.

I always used to say stuff like 'I didn't decide to crash one day', because people love to make this about mindset and laziness. I was a 22 year old university student when this happened, working on the side, had friends and was mobile. I am audhd which is important to mention, but I was ambitious, and always fought for my dreams. I was also a good friend, and a good sibling, and a good daughter. It was a balancing act, but I had enough energy to uphold it, even though it was hard as I was already in autistic burnout and struggling mentally since I was 18. I coordinated and made it work.

Now, truth be told, nobody decides they want to get worse randomly. Mentally ill people don't either. But there is still a difference. If you have a bad phase with your mental well being, or are generally developing problems, you don't do it out of laziness. But the difference is that when you have enough energy, therapy can and will help. Changing your mindset will help. Jumping over your shadow, stuff like that, all of it will help. With mecfs, nothing helps, as it is not mental. Most of us randomly woke up on a random Wednesday and suddenly were disabled. That's how it was for me. This was not about mindset. The day that I crashed, I wanted to get from my parents place to mine by train, to study, meet up with friends, and participate a meeting at university. The next day there would have been a demonstration which I wanted to attend. But instead of that, I just collapsed, and then I just stayed there, with moderate/severe mecfs, housebound. That's simply not how mental illness works. I am disabled, physically.

I am in month 16 after I collapsed, and I somehow thought that I was the last one to realize how serious this actually is, but it turns out I am the first one. I accepted that no therapy will cure me. Also no supplement, no workout, no lifestyle class, no kind of yoga or meditation, nothing. Things can help, sure. But nothing is guaranteed to cure me. And suddenly, I can see what everyone thinks of my situation clear as day. Before that, everything was overshadowed by self hatred. It turns out everyone I hold close and dear to me thinks I'm just not trying enough. I recently said the words 'I am physically ill'. No one believed me. It is absolutely insane. 16 months of this, and all this time people just thought I was making this up.

This is why I will be calling myself disabled loudly and proudly from now on. Because I am. And this is actually a huge moment for me, because I've been running from this reality for way too long now.

Calling myself disabled also shifts the perspective. I am not thinking about recovery anymore, but accommodations. Walking aids, just being visibly disabled. It feels freeing, in a weird way. It makes me forgive myself. I always thought calling myself disabled is like giving up, but it's the other way around. I can finally see what's ahead of me. I don't have to gamble if I will ever get better. If I don't, it's gonna be fine. Saying this hurts, but it's also healing. It means I am giving up on the goals and dreams I had, but now there's finally space for new ones.

Yapping session over. Thanks for listening!

I feel like being housebound but not bedbound leaves us at a weird intersection. I think every level of me/cfs gets these 'you are just mentally ill' comments, but I feel like people with moderate me/cfs get it most of all, and I mean I get it. I've had moderate me/cfs and been housebound for 16 months now. When people see you can physically walk, then you'd think we're able to to it outside too. But I was wondering how all of you experience this? Because I was basically gaslit into thinking that this is all agoraphobia (although I was diagnosed with me/cfs before agoraphobia, but alas). Now I struggle to see what is what. Because obviously I'm scared to leave the house. I crash like everytime I go outside, either when I'm back home or just as I am walking outside. Yes I fear that I will lose consciousness and be without help, because that has happened before twice when it got really bad! Funnily enough, when I was diagnosed with panic disorder, I asked my therapist what I should do if I lose conciousness after a panic attack, and he said that doesn't happen. When I told him it did already happen for me, he was like 🤷‍♂️. But after thinking for a year that this is just gad and agoraphobia, I really don't know what to think anymore. I had a severe crash over a month ago and still didn't recover, and I am done blaming it all on mental health. What makes all of your housebound? Can you physically leave the house like me, but always get worse immediately after?

I have been a bit agoraphobic all my life, even as a kid I hated going outside, not that I dreaded it, but I just preferred to stay inside. Step by step it got worse and worse. It started when I was 12 and had to prepare to go outside, like an hour at first, then two, and I'd still be shaking when I left the house. At 17, due to a traumatic loss of the closest person in my life, it got even worse. Two hours turned into three, and four, I'd restrict on food, drank if I knew I'd socialize. Important thing to note is that I almost never said no to things, that I never skipped school. I told myself if I don't do these things, it will get worse, not realizing it got worse regardless. I also did stuff I enjoyed at least once a week. Going to cool stores, getting my favorite coffee from around the corner while listening to my favorite music, going to the cinema (used to love the cinema), or art galleries. But no matter what I tried, nothing really worked. Once I went into college at age 21, I already had fully developed ocd and just terrible mental health, so everything got worse and worse and worse, and I continued to never say no, went to parties, met up with friends, walked around the city on my own. I was completely unhinged at that stage and developed alcoholism quite soon. At age 22 I burnt out and got sick with post viral syndrome and dysautonomy, and the first thing that went away was my ability to leave the house. Went to therapy, tried an ssri and cbd oil, and I tried so hard to do exposure therapy, tried every day in tiny steps, steps as tiny as 'standing at the front door for 5 minutes', but always when I went one step forward, I ended up 2 steps back for some reason. Now I stopped taking anything, also been sober for 4 months yay, but I am at a stage where I just.... dread life. My going outside and doing exposure (which, for the love of God, don't tell me I've been doing it wrong. I've tried big steps, small steps, with and without people, I tried every way my brain could come up with), with every help, everything. Exposure therapy might still be the way to go, but ever since I've hit burnout, everything is just getting worse drastically. I have practically been a shut in for 15 months.

So, because I know I cannot be the only one with experiences like that, I'd like to know how you deal with this.

Hi everyone!

I'm a 23yo female, self diagnosed. I used to study in college and work on the side and did some extracurricular stuff with organisation. Basically, I've been in proper burnout for about a years and 3 months. I've treated myself like someone in autistic burnout for the past 3 months. Heres what I tried that actually helped:

- nc headphones and loops

- regulating myself

- taking magnesium and vitamins

- stimming

- reducing masking and social demands

- learning about my meltdowns

- accepting I'm autistic in general

- eating save foods instead of the healthy diet

Yet I'm still a shut in, unable to do anything. To anyone who was in severe burnout where they couldn't work or do anything like that, and managed to get out of it, what did you actually do? Cause I keep reading that it's reversible, but is it really? Over 400 times I woke up, realized I'm not doing better. And yes, treating myself like an anxiety patient that first year did make things worse. I went to cbt, took an ssri, got into meltdowns daily for the first year, it was terrible. And like.... it's still been so long. I'm so tired of the fatigue and the extreme executive dysfunction and the anxiety is causes. And I don't want a shortcut. I just want to see some sort of improvement. Cause when I heard it's an up and down process I thought it would be like 2 steps forward and 1 step back, but instead I just end up at 0 everyday. I cannot get groceries, suck at ordering groceries as well, when I clean I get fatigued, when I try to get an autism assesment set up I get overwhelmed.

Anyways, enough said. Maybe this is just me trying to find people who actually got out of this. Please share your experiences.

I've had a lot of cheap and middle class headphones (currently using the sony wh ch 720n) and wanna get more upper class ones. I heard bose makes top class headphones with great noise cancellation, and since I'm autistic, that is a great thing to hear. I've read a lot of different opinions on the qc and qc ultra, but there are few actual comparisons, and even less that truly talk about the nc in detail.

I don't really like some nc. The airpods max I tried from a friend for instance give me a headache after a few minutes on a bad day. And, since I read somewhere that the ultras were kind of a response to the airpods max, I wonder if it's similar? I feel like the airpods nc is very artificial and it increases the pressure to an unnecessary amount. Another thing I'm bothered by is when there's very noticable white noise. I don't mind a little, and ig it is just impossible to fully get rid of it, but I hate when it is too loud, which especially jbl and soundcore does.

Is it worth the ~100€ price increase for the ultras? Only from a nc standpoint? Cause I don't think I'd be using the immersive audio feature anyways, and I prefer the design of the quiet comforts over the ultras.

Just writing this so that I can see if I'm alone in this. I legit don't leave the house. I'm a neet. I take out the trash and go for packages that were dropped, that's it. I'm not proud of it, I like to be withdrawn but not out of crumbling anxiety but free choice. I've hit burnout over a year ago and ever since then every time I leave the house I melt down nd get a panic attack. I mean I was still somewhat trying to do exposure therapy, went on walks, tried to expand the landscape.... but everything got worse. I spent the entire first year in fight or flight.

I do fear this is regression, but I'm learning to not judge myself for it. The more I try to 'come out of my shell', the quicker I melt down in daily life. I did try therapy for a bit, it was terrible. Went to a party once. Got shit faced and walked around the neighborhood a few times. Went to like two or three social events, went to doctors. Tried my bike, didn't get far. That was all still in 2025 though. Now I'm done running against a wall. But now all of these tiny 'skills' I had are falling away too! Like, I am literally chained to my room and only go out at night.

I just want to hear about others, maybe find people who are like me. I feel like I'm failing society.

So I deal with this severely, but I've never seen actual advice for this. Just the 'yeah, that's a thing, that's adhd for you:)'. Like this is genuinely so debilitating. I am in burnout so it's a lot worse, but I can't even do things I find fun!

Like, just as an anecdote: I live alone and I'd love to meet friends. I love them dearly. They usually come over to my place. But wanna know what I'm anxious about? If I'm not able to let them in. Like I'll be sitting on my bed, ruminating about the time when they come, and how I'll have to press the buzzer/throw my keys from the window. I am 0% scared of them. How does that even happen? Makes it really hard to not hate myself.

Does anyone have genuine advice? Please, I'm willing to try anything literally! Any timers or whatever approach. I just feel stuck.

I bought the loop switch 2 not that long ago and am really disapponited that I can't wear then for now. I'm autistic and especially during summer I really need noise protection that isn't over ear. I wore them for around 45 minutes while playing around with the sizes, ended up with s for left and xs for right, but somehow my ears got really sensitive and then started beeping, and that beep took like 5 days to fully go away. I tried just putting them in lightly today, just enough so they stay in place, but then they were no use, somehow felt like they were even enhancing sounds. I'm considering trying off brand memory foam tips but I'm really pessimistic somehow. Anyone else got some suggestions or similar experiences? Should I just not use them?

I tried regular memory foam earplugs before and they weren't that confortable either, but at least my ears didn't beep for days on end. I'm wondering if my ears are just not made for earplugs (which would be very unfortunate).