u/forgot_again123

Our refrigerator is the reason I was bedridden for 4 months. It is 30 years old and the fan makes the loudest most painful gnawing sound imaginable. Unbearable even with multiple layers of hearing protection. Like, comically loud. Guests comment on it. It is a roar more than a hum. My bedroom was the only place I could avoid hearing it. And so I was stuck there for many months even though I was technically capable of moving from one room to another.

Since then, I’ve gotten better, and able to handle it. I am couch-bound mostly and cook for myself again. Because it runs on cycles, the quiet parts gave me time to recover. Until today.

Today, the gods smiled upon me. But not without one final trial. THE FRIDGE BROKE!!! The actual coils broke in a way that is pricey to fix. Finally it has broken in a way that is not easily fixable. They have ordered a new one which arrives in 5 days.

However, to keep all the food good, my dad’s plan was to keep the fan on with ice at the bottom, to circulate cold air. But this means the fan running, 24/7, for five days. Something about the process of emptying made the fan MUCH louder too. Now I can hear it in my bedroom. And it never. Stops. I tried to handle it but I couldn’t. I tired to make myself dinner and fell on the floor sobbing. I begged my dad to let us just fill our camping coolers with the fridge contents. I told him nobody in the house would want to withstand that for five days. Our bird sleeps out in the living room and it would be awful for her poor little head. He yelled at me, got angry, and told me that every time there is a problem, I make it about myself. Every time there is a problem in the house, it becomes just about making me okay, instead of actually solving it. His solution was working to keep everything cold, it made more sense, it was a temporary solution. He stormed off. My mother convinced him to let me do it, but he was fuming.

So I transferred everything, something I was not actually physically capable of. My hr was at like 160 and I at one point my legs gave out and I literally collapsed. I fear it will make me crash so hard that I won’t be able to do the upkeep in the coming days, replacing new ice, and I will be blamed and yelled at again.

I’ve been begging them to replace that thing since I got sick. It had gotten loud it seems clear it was going to break soon. But they had some conviction that no one makes refrigerators that good anymore. I think they resented it because they already had to empty my dad’s hot tub that was right outside my bedroom window and making me heavily consider su*cide (which for the record I never told them but I did sob and beg it to be turned off)(again, with every hearing protection possible).

The whole thing is bringing back those feelings. I don’t know what else I’m supposed to do besides make a fuss until they listen. They never listen when I just calmly explain how it will harm me. I can’t just turn off that part of my brain. I don’t know what else I’m supposed to do. I genuinely don’t. But now I fear the food will go bad, maybe I didn’t pack it right, tomorrow my dad will be trying to cook and yelling at me about how he can’t find anything in the coolers. I don’t know. I just needed it to stop.

Idk why every time I think it will be different. It used to happen irl, now in homebound, and it happens with cyber sex. Someone propositions me and I give a “maybe later” cause I think maybe once I’ve slept I’ll be able to. Then they somehow talk me into it by saying “just a little” but it never actually means that. Then they start to ask me to do stuff and it’s either so taxing on my physically that I cannot actually enjoy it or just not possible. So I do the parts that are just not enjoyable but then when it gets tot eh impossible then I say I need to stop but they somehow convince me to still finish and like an idiot I say yes even though by that point I’ve been at over extended myself, made made myself uncomfortable, and really must need to sleep.

But I let myself be convinced every turn because I have some imagined idea that even though I’m not up for this stuff this time, maybe I will be another time. So I don’t want to scare them off. I have some idea that if I just introduce my accommodation needs slowly, they won’t be scared away because they will have found enough to like about me by then. Because I’ve had the “I broke up with you because I just hated thinking about you hurting” and “I broke up with you because I couldn’t do x sex position” before.

I need to gain some gd self respect but it always feels like it’s either that or nothing. And in the moment I’m thinking I’d rather have some experiences than no experiences.

(For reference I have a brain injury and a life long (milder) physical disability) (this was originally attempted to be posted on the disability sub but for some reason even though they have an intimacy tag they auto removed it •~•)

Idk why every time I think it will be different. It used to happen irl, now in homebound, and it happens with cyber sex. Someone propositions me and I give a “maybe later” cause I think maybe once I’ve slept I’ll be able to. Then they somehow talk me into it by saying “just a little” but it never actually means that. Then they start to ask me to do stuff and it’s either so taxing on my physically that I cannot actually enjoy it or just not possible. So I do the parts that are just not enjoyable but then when it gets tot eh impossible then I say I need to stop but they somehow convince me to still finish and like an idiot I say yes even though by that point I’ve been at over extended myself, made made myself uncomfortable, and really must need to sleep.

But I let myself be convinced every turn because I have some imagined idea that even though I’m not up for this stuff this time, maybe I will be another time. So I don’t want to scare them off. I have some idea that if I just introduce my accommodation needs slowly, they won’t be scared away because they will have found enough to like about me by then. Because I’ve had the “I broke up with you because I just hated thinking about you hurting” and “I broke up with you because I couldn’t do x sex position” before.

I need to gain some gd self respect but it always feels like it’s either that or nothing. And in the moment I’m thinking I’d rather have some experiences than no experiences.

(For reference I have a brain injury and a life long (milder) physical disability)

I hope this is alright to ask. I’m wondering if anyone knows or can personally attest to stories of people who recovered who were young, secular, maybe lgbtq, and left leaning socially/politically. I’ve noticed that a lot of the recovery space has attitudes that I associate with conservatism, like ai usage, devout Christianity, vaccine denial, things like that. I don’t see a lot of people like me who have recovered and sometimes it makes me wonder why that is.

I know that some might say that this is because people like me are crybabies who make their illness their identity and don’t want to recover. But I in fact have known many people in those demographics who have had similar illnesses like PCS or MCAS who are very vocal about their recovery stories. Just none for CFS. So I don’t think being in that demographic makes you inherently victim mindset. I just feel like it’s a type of person I never see in these stories. There aren’t any raealan agle podcasts where the guest has ten face piercings and purple hair, y’know? Just curious to hear if there’s anyone who has insight about this. Please do not comment bashing the people I speak of. We are all just humans trying to make it.

Anytime someone accuses me of something I didn’t do or asks if I get it, I get super freaked out, like panicking trying to explain that it wasn’t me, it makes me panic and act super suspicious and they always then say it must me be which then makes me defend myself even more. I’ve tried being more nonchalant but they still always act like they don’t believe me which makes me so upset so then I start explaining anyways. I’m so upset because literally no matter what I say they won’t believe it’s not me. This always happens and it makes me so mad because there is literally nothing I can do to defend myself.

The stupidest part is, I’m actually pretty good at lying, and if they were accusing me of something I actually did, I think I could play it cool and get away with it no problem. The only reason I get so upset is because what they are saying isn’t true.

It’s such a weird thing, people just seem to hate the word chronic illness. They immediately jump to all these judgments. I’ve started saying “I have some I going health problems” or “I developed some ongoing health problems” instead of “I am chronically ill” because as horrible as it is, people treat me better. It’s just so stupid cause they literally mean the same thing. But I guess people think that chronic sounds like giving up, or something. Even if it literally just is what it is. It’s funny how much of being chronically ill is just coddling healthy people’s feeling about your illness.

On some forms or criteria for things it will ask how often you experience dislocations. I’m wondering if that means temporary dislocations with movement, or if it only means full ones that get stuck. The only joint that regularly fully dislocates and gets stuck is my jaw. But I’ll have “passing” dislocations where it just slides out of place and sometimes hurts, with movement, but it’s not stuck. Like most night when I lie down to sleep I end up having my wrist slide out of pls e painfully under me, but it just goes back when I get the weight off of it.

That’s pretty much it. I already have a very delayed sleep schedule, and then I was so nervous for the test, which was early in the morning, that I did not sleep at all the night before despite laying in bed trying for hours.

I know sleep deprivation can have kind of a shutdown/dampening effect to your autonomic functions. I was upright for 10 minutes, felt like crap but my vision didn’t even blur and I didn’t pass out, and my watch afterwards says my hr only jumped from 73-106. My hr regularly goes from 65-135 on the daily from standing, sometimes as high as 170, and my vision often goes completely black and I have to drop to avoid falling. My hands and feet did turn bright purple though from blood pooling.

The actual worst part was when they made me do this breath test thing where I had to blow into a pressurized nozzle. It made me feel like my eyes were gonna pop out of my skull, and my head was gonna explode, it hurt so badly in my brain and I couldn’t even hold the pressure long enough to get results and it left me with this really freaky disgusting feeling headache like I’m worried it literally damaged something in my brain. Like popped something. It was really scary.

The whole thing completely knocked me out, I’m worried I’ll be crashed in bed for days or longer, and then not even get positive results and not even be let in to the neurology clinic 😭 just wondering if anyone knows anything about any of these experiences and what they might mean.

I would’ve asked this on a regular self-improvement sub, but I know that the answers would all be “work out” or “go on a run” or “go to work” which aren’t applicable to me.

For the last few months I’ve been nocturnal, sleeping until 5pm. I wake up at 5, scrolled my phone for an hour, then go have dinner with my family, scroll my phone some more, make myself more food, chat with my family, do a chore, rest, make food, write, watch some YouTube if I’m up for it, make more food, scroll, go to bed by 7am.

But it’s messing up my life missing all my appointments. So I pulled an all nighter and went to bed at 8. Now I’m awake at 6am but I don’t know what to do? Because I can’t just sit on my phone idl like I normally do, because I’ll get sleepy. But I can’t do what a normal person does and go for a run or a walk or drink coffee to wake me up because I can’t do those things at all. I’m used to only walking up because it’s so late in the day that it would be problematic to sleep any later. Idk how to get up and get moving if there’s no urgency?

Tl:dr, if you’re a non-morning person, how to you keep yourself awake in the morning when all the regular methods to keep yourself awake are non-accessible to someone with ME?

Every. Single. Time. I mean, most guys are just straight up creeps. But that’s just easy to just block and ignore.

But for example. Today I posted on a women-centric sub. But it allows guys to leave comments. He left a cute gif that happened to come from my favorite movie. It was really cute. I said as much and he sent another. I was giggling. So I peeked at his profile just cause y’know I get curious. His posts were all silly, or cute, or about hobbies. But I’ve learned by now. So I check his comment history…and oh yep no there it is he’s a straight up racist. Like just gross smarmy ugly stuff.

This always happens. Like omg finally a normal decent guy on Reddit but then you scroll into his comment history and there he is getting off on telling 19 year old girls how ugly they are. Or calling sick kids slurs. Or whatever. I can literally only think of one single time where I investigated the profile of a guy that didn’t turn out to be damning, and that was someone in a local forum.

At this point I almost just wish they’d hide it better. Because those gifs were making my night. But now it’s kinda ruined by knowing the guy sending me cute gifs with cute cats all over his profile is a closeted white supremacist.