u/forgot_again123

[graphic description of bodily fluids ahead]

I’ve noticed that I get what is described as pre-ovulation discharge right before my period. The jelly, stretchy kind that comes out in clear gooey blobs. I looked it up and everything says that this appears right before ovulation or right when ovulation starts. But twice now that I’ve been paying attention, it happens for me 4-5 days before I start bleeding, and 2 days before cramps start.

Does this mean that is just happening at the end of my ovulation period instead of the beginning? Or could that mean something is off? I have some signs of hormone problems and other things that implicate reproductive health which in why I wonder.

Due to multiple medical conditions preventing me from all hormonal or implanted birth control, as well as preventing me from being able to get all my tubes tied, combined with OCD preventing condoms from being good enough, there is just no way for me to date a guy who doesn’t have a vasectomy. But it just feels impossible. I don’t think guys my age get vasectomy’s. Last guy I dated had a breeding kink and I honestly fear that the majority of men secretly want to slip up and impregnate you. Even if they don’t want children, they want it sexually. I wish I could find a guy who honest to god has the same paranoia I have. I’ve occasionally heard accounts of men like this, but how does one actually find them? 🥲

Recently my skepticism has unfortunately been butting it’s head. I keep encountering “CFS recovery” stories where, when pressed, the OP admits that they didn’t actually experience PEM. This quite frankly pisses me off because you didn’t have CFS if you don’t have PEM. It’s a different disease without it. PEM is a crushing, flu-like fatigue that comes on 12-48 hours after exertion, at a disproportionate level to the exertion. For example, I walked 1000 steps without enough breaks in between, and as a result was unable to leave my bed for a week due to being extremely ill with symptoms as if I had a horrible concussion and the worst flu all at once.

Does anyone actually recover who has actual PEM? These people will list “PEM” as a symptom but then seem to waver when asked to actually describe it, or never describe it ever happening in their story. Anyone who has actually had PEM knows how it feels. It feels like being drugged. Like being poisoned. Like your brain genuinely stops functioning. Sometimes you cannot speak or tolerate the taste of food. I’m lowkey crashing out. I’m having a break in faith. I want hope for full recovery. Not just improvement. I hate this.

Edit: even the responses here that intend to comfort are just showing me what I fear. I believe that improvement is possible with PEM but what I’m scared of is that no one with true PEM reaches total remission, 100% recovery

Prefacing this that it is not sleep apnea. I’ve been tested. What happens is I lie down. I try to get comfortable although my body always hurts a little. I’m unbearably sleepy and closing my eyes feels so good. I do sleep meditations like counting. I can feel it getting harder and harder to focus. Eventually I start getting little half-dreaming thoughts that don’t really make sense, basically feel on the verge of sleep. And then. My body will hurt. My neck hurts or my hip or my arm cramps. Or the pipes creak. And my brain comes back online. And then it’s just over. This is usually after about 40 minutes. Because I was sort of half asleep, dozing, now my mind is basically interrupting that as a nap and I’m wide awake. Probably won’t sleep for hours. My head gets kinda achy afterwards, sort of like waking up after taking melatonin.

It’s so agonizing because I get *so close,* I can feel the sleep coming and then it just poofs out of nowhere, never to be found. My body always hurts and the pipes always creak. I wear earplugs but it doesn’t help. I’ve tried everything on the planet for the body aches but the only thing that ever works is just staying up for so long that I collapse into sleep before I can feel how sore it is.

Also, I’ve been like this my whole life. Literally from my earliest memories. The body aches, the house noises. It’s not some old creaky body thing. I’ve been having this experience ever since I was conscious. I used to throw fits as a kid because I dreaded being forced to try to sleep so much. Almost reaching sleep and then been away from it and unable to return is just too demoralizing.

I was lucky to grow up with very supportive parents. I always imagined that my mother would always be someone I could call when I was in a tough spot, and needed emotional or practical guidance. We were and are still very close. But about a year and a half ago, something just…flipped. She kind of just shut down that side of her. It has to do with stressful and traumatic events age went through during that I won’t get into. She doesn’t have the ability to help me feel okay anymore, talk through problems with me, or comfort me. When I had a partner, we would help each other with that sort of emotional thing, but I’m now single. I don’t really have friends who can, for example, talk me through a stressful medical decision. My siblings and I like each other but are not close like that. What are you supposed to do? I can’t talk to ai cause it’s useless and freaks me tf out and I don’t trust those companies in the slightest.

I end up just sobbing, hating myself, treating myself badly, cause I’m just here by myself feeling so stuck having no idea what to do, no way to make a decision, no way to feel safe. I do have a therapist but you only see them once a week and they don’t really provide the same amount of support. I just don’t feel like I can cruise this whole ship alone. Only 3 years ago my mom would be here with me helping me through it. I don’t know how to cope with all these things alone.

I’ve had ferritin between 50 and 15 in the last year. Notably, I have gotten better even as the number has gone down. When it was 50 I was bedridden and now I can move about, step outside, cook, even though now it’s 15. Honestly I didn’t really try very hard with oral supplements, I think I took it for 3 days and decided I was getting worse headaches and stopped. I was trying to get an infusion. I’d heard so many stories from people who swore by infusions. Lots of people in forums told me that I should get an infusion if I have a sensitive stomach. My new doctor finally prescribed me one.

But then tonight I searched that up on this forum. Holy shit, apparently I’m about to go fucking ruin my life. I started sobbing and panicking just reading all the horror stories. I’ve gotten better recently, I am not prepared to become worse for months or even permanently worse like so many people have from iron infusions. I’m gonna lose so much money to the insurance, my new doctor will hate me for my non-compliance, but I’m just so terrified, like, I don’t think I’ve ever been more scared of a medical decision. It seems to me from reading on this forum that it hurts more people than it helps. Am I getting a skewed perspective? I’m so scared I can’t even think or eat.

About 4 months into having severe ME I completely lost the ability to imagine a better life for myself or imagine being healthy again. There was an only a dark black pit. I used to play out a fantasy where I would wake up completely healed and think about all the things I would do. But it’s impossible now. After a year I can’t actually conceive of what being well actually feels like, I have no ability to imagine that state of my body, it’s just inaccessible. I never, ever think of a future or an alternate reality, I have zero fantasies to comfort me because they cannot form.

Until recently, when I discovered a fantasy I was able to create in my mind. The fantasy was about living with the disease, but in a safe clean home, in a beautiful accessible place, with a group of loving close friends and/or a partner, with bills paid. I imagined having someone to whom I was not a burden, someone who isn’t old as my parents, and a home that I knew for certain wasn’t poisoning me, that I knew I wouldn’t lose, and no fear for my future. I just sat in the garden and imagined someone I loved coming out to find me, wordlessly wrapping their arms around me, asking if I was okay.

It’s bittersweet because I know it will not happen. I am already sick. I find myself jealous of people who were lucky enough to fall sick with a partner who already loves them enough to stay and take care of them and handle it well. I know it’s incredibly uncommon but I envy the few who have it. Getting with me now would be like adopting a very needy expensive house cat. It would be like my fairytale. Life as it is is unlivable. I’m glad I at least found an escape I’m able to actually entertain in my mind but I’m also sad that it is probably just as unrealistic as becoming well again.

There is this certain type of face, it’s not just one feature, but the whole look. Sort of squinty twinkling eyes especially when they smile, long hair, and looks a little French and a little…autistic? I’m sorry I know those last two things don’t exactly make sense but it’s something about the way they hold their face.

I’m tripping out because I’ve met now 3 people who looked like this, like not that they are identical but their that they have this certain vibe, especially in the eyes and their smile. To me, it’s like their eyes sparkle, and they just seem very cute. I find this looks very attractive. But without fail, each of them has turned out to be basically, a sex pest. Like, someone who has s*xually assulted people. I just don’t get it cause I really do think it’s mostly something I’m picking up on about their eyes, but to me that thing looks *endearing,* not dangerous, and that’s what’s freaking me out. And now I’ve met a 4th person who looks like this, and I know it would be wrong to inherently assume they are a bad person, but I just cant get over the fact that the *vibe* of how they look and hold themself is once again the same.

Why would this even happen? These aren’t even people who are from the same area, they’ve all been from different states or countries. Am I actually picking up on something or is it just a weird coincidence?

If course there are a hundred different proposed “causes” of CFS and it’s various related conditions, but it’s very frustrating how many each one is presented as both a cause and an effect depending on who you talk to.

Like I’ve had a very over active nervous system my whole life. But was it my over active nervous systems that gave me CFS/MCAS/POTS/possible mold illness, or was it that was already sick with those things just milder and that’s why my nervous system was over active?

Some say that MCAS/HI weakens you connection tissue and gives you cervical instability, but others say cervical instability causes the MCAS/HI

I got severe from a concussion but was it the concussion that caused my pots and CFS and MCAS or did I already have those things and that’s why my concussion didn’t heal?

If I have brain inflammation and fucked up mitochondria and misshapen red blood cells or whatever tf it is they are saying is wrong with ME patients these days, is it causing my illness or is it because of my illness?

It’s like this never ending loop. I’d rather believe that it’s just a nervous system problem and everything else is downstream cause at least then there would be some hope. Kinda sucks to think “you’ve been e anxious and overstimulated your whole life and there’s nothing you can do about it because your body is permanently infected with mold or a virus or a broken energy system” vs “you’ve been anxious and overstimulated your whole life so maybe chill tf out”

Noise concealing headphones make me vomit and fall over. Yes I’ve tried multiple brands. They are are conducive to whatever is wrong with my vestibular system.

We had to replace our 30 year old refrigerator, it finally broke. It turns out they don’t make turn like they used to. The new one is fucking LOUD. So that I have to wear earplugs 24/7, which gives me headaches (I’ve tried every type, foam, wax, silicone, loops, earmuffs), and makes my noise sensitivity so much worse. Our fridge is not enclosed in any sort of cabinets to bugger the sound, it just sits out in the middle of the kitchen. It is a full sized 5-people-who-cook family fridge. It’s so fucking loud. I thought the old one was loud but it’s nothing to this.

My bedroom, the only place I cannot hear it, has mold. Or something. It makes me sicker to be in there (yes I run a hepa filter but I cant have it on while I’m in there because of the noise sensitivity). Being out here makes me sicker because of the noise. I’m deteriorating. I cant live like this anymore. I was actually finally getting a little better before this (been sick 1.5 years). I don’t know how to keep living.

Does anyone know of a really good quiet refrigerator? We got out new one from Costco, if I can have a new one to propose that is 100% guaranteed to be quieter, I might be able to convince my parents to return and replace it. Otherwise and don’t know how I will keep living. This seriously feels like the end for me.

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.