r/SevereME

Sometimes I hear people talk about the last time they were bedbound. I am bedbound now. My baseline is rolling pem and the pots is.... I dont have words. And I don't eat so I don't even know hoe bad the mcas is. My question is. Did someone here managed to get a little better or even a lot. And then crashed again?

TLDR not having an obvious crash yet a week after getting back from the hospital very confused what’s going on?

OK, sorry I keep making posts but I need help. I’m so confused.i am severe. I got back from the hospital a little over a week ago. I keep switching back-and-forth between crash and adrenaline. Sleeping 13 hours and then being unable to sit still and unable to stop going on my phone all day. But even when I’m crashing, I feel no worse than before I went to the hospital.

This makes no sense?? part of me is wondering if I don’t really have MECFS after all somehow. Part of me is wondering if I’ve just been in rolling PEM for a very long time and so I have no idea what’s going on and how to parse crash from not crash. Very tempted to just let myself do everything I want to do since all that light sound and talking seemed to not cause the catastrophic crash I expected. Literally I was talking all day for three days. Before I went to the hospital one hour of talking caused baseline lowering crashes.

If I somehow don’t have MECFS or have some weird version of it where this isn’t an issue, I feel like I need to do things I need to do so badly. If I’m rollingPEM…. This is real bad. And I am very scared of what will happen since i’m still not crashing and can’t get off my phone. I will say there have been multiple times where huge over exertion over days weeks or months have caused crashes that were days weeks or months delayed . so there is that. but also times where it didn’t seem to ever come?? but again i think it might be cumulative and i didn’t really get away with it since t i’m pretty sure I’ve been enrolling PEM for over a year at this point.

And I’m only half diagnosed right now. Doctor said I meet all the criteria and she could already tell. I had it after 20 minutes of taking to me but didn’t officially diagnose. Somebody tell me that I don’t actually have MECFS and I can call my boyfriend 😩

im so severe i shouldn’t even be on my phone what is wrong with me….

Summary: struggling with not feeling understood even within the ME community due to lack of severe ME friendly spaces.

I’m struggling at the moment with feeling like spaces that are meant to be for those with severe ME end up having people (maybe a vocal minority idk) who are talking about things that very much don’t seem like something someone with severe ME could do. A discord I’m part of currently with a severe ME channel has people in there talking about going on holiday, or out for meals with family.

I absolutely don’t want to gatekeep support networks or say anyone’s struggle isn’t as valid, as everyone deserves support and all severities are tough. I just feel like most people don’t understand severe ME as it is and it’s nice to have a space where people do understand without it being filled with those who can do much more than I can (and I’m on the milder end of severe). For reference, I don’t think this subreddit is included, I mostly mean dedicated severe ME discord channels or Facebook groups.

Not sure the best way around this as I know everyone’s symptoms and struggle looks different so it’s not too easy to police?

I want to start by saying I feel immensely privileged to be received high quality medical care. But it feels like every test ends with "needs further testing to diagnose" or "needs referral for treatment". Like the chase is never ending, I am always having to keep pushing myself to crashes just to get treatment. And now tests are showing I probably need 2 surgeries for palliative care, but how can I handle another surgery when I'm getting worse? It truly feels like there's no end to seeking treatment, it's never a simple test simple answer, and ai am so exhausted. It's hard not to just gice up.

TL;DR: After becoming severe and bedbound with ME, my friends of 20+ years rarely reach out and give superficial responses to my reality. When I share the terrifying, isolating details of severe crashes or emergencies, they deflect with shocking answers ("we can't give you answers"), say nothing, or immediately pivot back to cheerful updates about their vacations. I'm grieving the loss of genuine connection and wondering if I am expecting too much, or if this profound emotional abandonment is a normal part of ME isolation. But I do have one friend who keeps reaching out, so...it *is* possible.

****************** (edited typos, fat fingers)

Hi everyone. I’m struggling a lot with this and need some outside perspective.

I have several friends I’ve known for 20+ years. Despite living far away, we used to be very close, saw each other at least once a year, and even took annual trips together before I became sick.

Now, I am severe, bordering on very severe, and 100% bedbound. Because I don't have the energy to communicate normally, I had to tell them I was withdrawing from social media and restricting WhatsApp. Since then, they rarely initiate contact. A couple occasionally send things like "don't forget that we love you," which I appreciate, but if I reach out (like wishing them a happy birthday), there's barely any conversation. Our shared group chat has essentially gone silent, and I sometimes suspect there's another group without me.

The hardest part isn't just the silence; it's what happens when I do try to share my reality (maybe after they ask "how are you" when I say happy birthday, or if I answer to their "dont forget we love you" very occasional comment):

• When I've said things like, "I don’t think I’ll ever leave this bed," or shared that I'm terrified in a crash because you never know which PEM episode might drop you to a lower baseline, there are no follow-up questions. No attempt to sit with it.
• When I had to buzz-cut my hair because I couldn't wash it for six months, they told me I looked beautiful, which was kind, but completely glossed over the profound grief and devastation behind having to do that.
• Most recently, during a brutal PEM crash, a sudden storm flooded part of my room while I was home alone. Just trying to grab a towel and close a window completely broke my body, and I was left terrified, lying in the sun (vurtains open to clise window). When I opened up about how scary and isolating that was, the response completely shocked me: I was told "We can't give you answers" and "Don't feel guilty" (when I wasn't even feeling guilty, just describing a disaster), immediately followed by cheerful updates about their vacation plans.
• One, only after I told her I dreamt about her, asked me how I was. I said worse. She said "oh, I did not think it could get worse" (wow, after I sent her A LOT of information on ME). I explained how some people can't even chew, are tube-fed, etc, and how scared I am. And all she sais was: oh, I'm so sorry.

It feels like talking to a brick wall. They claim to be there for me, to care, but the moment my severe illness gets "too real" or inconvenient for their mood, it seems like they they put up a shield.

I don’t expect my friends to be carers or therapists. I know they have their own lives. But these are people who have known me for over two decades. I am also aware of all the theory: "people can't understand, deep diwn they are scared of this happening to them, etc, etc". But I know I would reach out, send postcsrds or letters, or small presents...something to make them feel I'm still there.

And it seems that it is possible: I have a more recent friend who sends me little videos from her day, asks me how I am every few days, read everythung I sent about PEM, sent me a postcard, and makes an effort to stay connected without expecting anything back from me. That has made me realise how much I miss genuine initiative.

My question to you all: Am I expecting too much from long-term friends? Should I give up and let go? Honestly, I feel mad and bitter.

How do you cope with this kind of profound grief and disconnect?

tldr; my roommate attacked me and I realised going to any hotel is can be more harmful than my room I know to be accessible

My roommate attacked me today and I realised an accessible place with a violent roommate is still safer than going to any inaccessible one

I live with a roommate who knew I am disabled from the initial flat viewing. I paid in advance, my assistants cleaned for me and her, I never caused issues. Every month she goes into a violent state of trying to get my attention out of boredom. She disabled me by loudly (over 90 db) playing music, burning candles that give me migraine, being sick and not masking. I physically can’t react then the flat quiets.

Today, she knocked on my door (a door knock impairs me for three days) and started yelling demanded I go and buy something for the kitchen. My assistant already transferred money for it. I managed to stand up holding a door frame and speak, and got it in a video – it’s on my Instagram stories.

I was due to move out at the end of the month and realised going to any hotel is can be more harmful than my room I know to be accessible. I do not have enough for September assistance and am worried I have to stay at a hotel if it happens again. Please support me if you can:
https://www.paypal.com/pool/9qtebEEIiA

very severe. i spend all my time on My phone atleast 7 hr screentime today even though i shouldn’t be on My phone. spent an hpur in notes app writing my feelsinf and writing poems to try and make this mean something . im useless at resting and i keep sabotaging for myself. two days ago i cried nonstop for hours. crashing. still can’t stop. og death doesn’t stop me idk what will . idk what to do anymore i feel

sö stupid pls help

Haven’t been in years and I’m really severe, last time I went I had a very deep filling right next to the nerve on my back left top molar that absolutely killed me for weeks after it was done. This was back when I wasn’t as severe… I eventually probably will need a root canal one day but anyways

I did not want my other right side molar to get in the same state as my left side molar and my teeth are really sensitive when I eat chocolate etc so I thought I’m definitely going to need alot of fillings doing

Turns out my x rays didn’t show any fillings needing doing apart from that back right molar had a little bit of a black shadow on the x ray and wasn’t near the nerve so he said he could fill it or could wait 6-12 months and use some toothpaste and interdental brush inbetween to help it. I chose to get it filled since I was already made the trip there! Used non adrenaline numbing. Was quite quick had my ear defenders on and sunglasses ear plugs.

Quite surprised as I only have been brushing once a day if that ! but i do floss after every meal so maybe that helps?

One thing i wanted to mention that has worried me was the receptionist had a cough and the dental nurse assistant had a cough too! I was masked up in reception but of course not while my mouth was open in the chair! So this really made me anxious, what is funny is they send you this questionnaire before your appointment to ask if your sick or had Covid in the last 7 days or have any symptoms, the irony!!!

I got home and decided to email the receptionist ( I honestly don’t really care what they think lol ) I sent a nice email asking about if anyone was infectious as there was a lot of coughing and it made me anxious … as they know I have chronic health conditions and can’t afford to get sick, I sort of just said I’m immune compromised to make it sound abit Simpler to them … lol I know they must think I’m crazy but oh well!!!

Am I the only one who is so anxious about getting viruses now? I got home scrubbed my hands and used a nasal spray rinse but not much else I can do now!!

I’m also kicking myself because I didn’t have any of my proper n95 masks I had to use two surgical blue masks doubled up which I know isn’t even that great in protecting you but :(

Glad I went and I can rest knowing my teeth are at least ok for now. Won’t be going back any time soon that’s for sure!

Just hope I don’t get sick from going there knowing my luck 😩

Is anyone considering maid / assisted dying ? I don’t think can stick this suffering much longer 😓

EDIT: I edited it a few days later. A bit inelegant for a forum but I didn't want to delete it. :) <3

My room has four walls, one door, a window with black tape over it. Stains on my bed are proof of time passing. A few times a day, the door handle moves.

Behind my wall, the sun is shining brightly. The light is just a few centimeters away, yet its warmth is a distant memory that I can barely remember, the thin threads of light that penetrate the cracks a beautiful whisper of distance and life.

And there you are.

Behind my wall, there you are. Where, I do not know. I have never met you. I have never touched you, never felt you and never called you. And yet, I know you, and you know me.

I look at this wall. It is big and silent. I know it well. The mystery behind it is a magnificent story with endless potential, love, and heartbreak.

I look at the wall, and I look with you. It's your old companion, your iron bars, and your shield. It is part of your prison and refuge.

Your wall is my wall. Your bed is my bed. We do not share the same body, but we share the same door. We do not share the same memory, but we share the same dream.

I look at the wall, and I look at you. Our eyes meet.

And we may too.

As the title say. Anyone else like me ?

I'm very severe, bedbound 23h55 a day, only (struggling to) eat and use the phone 2h daily.

Every day is miserable with a ton of symptoms, no matter the pacing, the rest, etc.

Sometimes it's even worse like I can't move and can't eat, dysautonomia through the roof, etc, usually when trying a med that I don't tolerate. Then it's clear it's a crash. But otherwise day to day I never know if it's PEM or just my normal state.

And it's been like that for 18 months. Really wondering if it is common as it seems everywhere that people can clearly tell their baseline and their PEM.

I’m seeing conflicting info about whether or not midodrine is safe if you are horizontal 24/7. Does anyone here take it safely while lying down?

I’m in need of a med to raise my chronic low BP and fludrocortisone is contraindicated for me.

Summary: What are we doing to keep our teeth and gums healthy? Do you have specific products or methods?

I feel like every time I’m in a flare that keeps me in bed I maybe get one brush in during a bathroom visit, but mostly it just gets forgotten about. I have an Autobrush, but the LED is so bright I’d hate to use it in a flare. I don’t know where I’d spit or how I’d rise my mouth?

From what I've read, ear defenders, including noise canceling headphones, are best at blocking low, constant sounds.

I live near a busy street with sirens going by often, a neighbour with a loud, high-pitched laugh, seagulls (I love them but their calls are difficult with noise sensitivity). I cannot move.

I'm looking for over-ear solutions because I'm unable to clean my ears well enough for continuous in-ear protection, and I had issues with them even when I was mild and cleaning my ears well, but I'm open to all suggestions.

Tk;dr: I‘m too exhausted to eat, I get severe symptoms after eating and I‘m losing weight rapidly.

Now I‘m in hospital and I got weighed this morning and I lost 4kg since last week. Even since monday it was 2kg. I‘m no more hungry. Eating is such an exertion, although I already puree my food. I eat keto, so it’s really dense in macros.

I eat very slowly, small portion in 30min. Afterwards my system goes crazy, I feel nauseous for 2h, I get severe tachycardy and many extrasystole for 2-3h.

Most days I can eat two portions, yesterday it was just one. I‘m in rolling pem and I‘m so tired and so weak, I have to rest most of the day.

I think that could be due to MCAS. Next week we wanna start with H1/2, maybe that helps a bit.

->So, NO LDA, DXM, L-Carnitine ect.

I'm on LDN and it helps a little bit. Also on Famotidine, Levocetirizine, Cromolyn sodium, Ivabradine, Pregabalin

POTS and mild mcas but not much.

Extremely severe.

Bonjour,

L'association Pegasos demande une autorisation parentale pour les moins de 45 ans, c'est impossible pour ma mère... ma femme ne veut pas non plus porter ce poids.

Savez-vous si c'est plus simple en Belgique ?

Des noms de médecins à me donner en privé ?

Merci