u/Lost_Recognition728

I am deteriorating very quickly due to my MCAS worsening. I am most likely deficient in almost every vitamin and nutrient since I'm only able to eat basically two or three foods.

I ordered some hypoallergenic formula but I am scared I won't be able to tolerate it because it has oil, which is one of my biggest triggers, and because it has milk which is also a huge trigger for me. But I probably have only a few months left to live, so I have to try. Too bad I don't have an epipen or anything.

I've had POTS and ME since childhood and didn't find out til I was an adult. Before I found out I was chronically ill, I used to kind of hate myself for it because I thought I was just being a lazy slob. Because I saw everyone running around doing whatever they want with zero effort I didn't understand why I couldn't do the same thing. Then I became obese and started to think, well maybe its just because I'm fat that I can't do anything... And then I started seeing other fat people able to do so much more than me which reinforced my previous beliefs, and I thought, no, its not because I'm fat, its because I'm just lazy and its not my body, its my fault.

I was stuck in the prison of my own body and all along I thought it was all my fault, that I was choosing to be lazy. Ever since I was a kid, everything I do feels like trying to run underwater or when you try to run in a dream. Its hard to see everyone around you not being limited by their body and feeling like you just weren't trying hard enough.

I love that people are spreading awareness about ME, we need as much awareness about ME as we can get, but I am tired of people saying that ME is preventable by just avoiding getting sicknesses like the flu or covid.

I never got an illness that caused ME, I was born with EDS which puts me at risk of developing ME, and I experienced severe prolonged childhood trauma which destroyed my health and lead me to develop ME, along with other conditions including POTS and MCAS.

You cannot simply avoid ME merely by not getting sick. So many of us have ME that was not caused by a virus. Many people have a genetic predisposition to develop ME which is entirely unavoidable. We don't even know everything that can cause ME yet due to the lack of research. You could have a physical injury or be subject to a traumatic event that causes you to develop ME. Nobody is "safe" from developing ME. Anyone could get ME for any reason.

Every time I make a lighthearted post about something, Redditors act like I am asking for advice and get angry when I tell them to stop giving me unsolicited advice. Ffs. Not everyone on this platform is asking for advice, stfu.

What the hell. I just came across a content creator who is making videos advising people with SEVERE ME to exercise. Someone called them out telling them that no exercise is helpful or safe for people with Severe ME, and they claimed they meant "movements"... Right... Some people who are very severe cannot even do any movements without crashing into PEM.

But even worse, only one person called them out and they barely even said what needed to be said, the fact that this content creator is actively harming pwME by telling them to exercise.

Its one of those "holistic" idiots who go around saying they healed their severe ME through literally impossible methods, meaning they almost definitely never had ME to begin with. No, you did not recover from SEVERE ME via exercise which can literally kill people with Severe ME.

I am so sick of people spreading misinformation and disinformation about ME to pwME and to the general public. Not only does it harm us directly by trying to get us to harm ourselves, but it harms us by giving people the wrong idea about our condition. People already think that ME is a mind over matter mental illness, and these predatory content creators are only cementing this idea and making our lives harder for us.

TLDR; Apparently there are content creators who claim you can recover from Severe ME with exercise, which actively harms people with ME and reinforces false ideas about our disability

Curious if anyone has tried different sleep schedules, for example, sleeping at different times of the day like night vs day, or taking naps instead of sleeping full 8-10 hours? Biphasic sleep, or other different sleep schedules?

I know it kinda sounds ridiculous, but every day I wake up I have to spend hours recovering from sleep because I feel so ill, as if sleeping itself or maybe waking up is overexerting me and causes PEM. I wish I didn't have to sleep because of how much strain sleeping and waking up puts on my body and how awful it feels, it literally feels like a hangover.

Like I get it, there's a lot of spammers and bad actors on here but come on just ban them instead of making it everyone else's problem. I shouldn't have to make accounts years in advance, sometimes I need to post something that is urgent and time sensitive and it cannot wait. Everyone knows that most Reddit users make accounts and delete them on the regular its literally part of Reddit culture. It makes sense for locked subs that have sensitive topics, but not for open subs that are for literal shitposting. I swear its like Reddit thinks that its Wikipedia or something

Recently found out that the abuse started as early as 3 months old. I previously thought it was 3 years old, but this makes a lot more sense. I feel awful. I never got a chance at life. I was barely even a human being before it started, I never even got a chance to live. My life was ruined before it even started.

It almost makes me feel bad for saying that, like why should I think I deserve to have a life? I was only born because the person who wanted me alive wanted me alive for this one reason, I'm not even a person, so why should I even care or want to have a life? My entire childhood wasn't mine, it was theirs, whomever paid enough to use it. Why should I cope with this when this is just my life? It doesn't even matter, because I don't matter. How can I be a victim when I'm not even a person? I'm not a victim, because I'm not a person, and I never was. I was never allowed to be.

Has anyone who has lived with toxic mold exposure used dry fasting to detox from mold?

I haven't fasted in months now and I am so ill now that I don't think my body can handle it anymore, but I need to fast if it's possible it could help and extend my life for one more month.

So I have MCAS and since September I have had a very limited diet and continued to lose more and more safe foods throughout the last several months, now I am down to four safe foods left and I am lacking in so many nutrients I am suffering greatly.

I was wondering if anyone else's ME/CFS became severe with a limited diet or lack of nutrients?

As if suffering from ME irl wasn't awful enough, I have tons of dreams and nightmares about ME. In my dreams I'm typically in bad situations where I'm too disabled to escape or fight against something.

The other night I had a dream that I went to see a doctor to hopefully get help and recognition and when I went in to my appointment I explained how ME affects me and the doctor just sat there listening. I thought, finally someone is listening to me and taking me seriously, and then after I was done telling her everything she immediately started gaslighting me and acting like every doctor I've ever known irl.

The worst part about it is that this isn't even a "nightmare" because it actually happens irl to so many of us. I can't get medical help because I know this will actually happen, its not worth it to ever get help.

TW for trafficking.

It haunts me to know that everybody knew, and I didn't. That they all think I was agreeing to everything because another alter had been programmed to do anything it was asked. Everyone knew what was happening to me, and I was the only one who didn't know. They think I was enabling them and that I supported what happened to me when I wasn't even consciously there. Everyone knew I was being trafficked and nobody did anything about it. They all thought I wanted it.

I'm being accused of "spreading misinformation" for talking about my MCAS. I never once claimed that my experience is universal for everyone with MCAS, so I don't understand why they are claiming I am lying. How can I be spreading misinformation when all I said was that due to my severe MCAS I can only eat very few foods because I get anaphylaxis from everything else?

How am I supposed to deal with accusations and people like this? Does anyone else face discrimination like this for having severe MCAS? So many people have tried telling me that what I am experiencing is not possible. They think that MCAS is merely about histamines and don't understand that a lot of us are severely sick and limited to less than five foods, there is literally a woman on Tiktok who was only able to tolerate oats and baby formula. Why do people dismiss our experiences like this? All they have to do is search on this subreddit and find hundreds of posts of people listing their safe foods and see that this is our reality.