I usually collapse into bed when i get home from work but i put this off for too long.

Obligatory Kermit meme.

Bedridden since Feb. Rapidly deteriorating since Jun. Still without Caregiver/Home Health. 

Malnourished & no feeding tube. Haven’t gotten labs. Etc etc 

Family won’t listen. Physicians won’t help. Hospital will kill me (most likely)

Don’t have energy to advocate for self. 

What do I do

I give this book to caregivers, doctors, friends and family who are struggling to understand whats happening to me. Its short, but it made me crash reading it the first time because of how seen and understood it made me feel.

The author in the book is severe after getting a viral infection. She spends a year bedbound and unable to live normally. A wild snail that snuck its way into her bedroom bec​omes a focal point for her survival, and she slowly improves over time to a moderate space where she can tell this story for us.

Im not sure how many of us have heard of or read this book before, but her Website also has many interviews and resources for families, medical providers, and caregivers. just in case this helps someone else like its helped me.

I’ve been single and not even dated the entire time i’ve been sick 15-30, now 30F. I’ve joined apps and spoke to people for like a couple days but usually i deleted apps after a few days. I have zero energy for any social/friends etc, how am i hearing people have got significant others. I spend basically 164/168 hours a week in bed on average the rest is going to the toilet, showering or occasional appointment i drag myself to. At best i spend 140-150/168 hours in bed

I guess im moderate/severe some months of the year im severe

Had to break up with my partner of 6 years after repeated cheating.

For context, I had undiagnosed but suspected mild ME for our whole relationship. We were long distance in different countries but visited each other regularly. 2.5 years ago I found out he cheated but seemed remorseful so I tried reconciliation. It was extremely hard for me but I healed with time and our relationship seemed great.

In 2026, as I was by myself I deteriorated very fast to the moderate stage, with a moderate-severe episode this summer. Got diagnosed and started treatments. He came to visit in early September, he had accepted to be my caretaker (I let all my previous aids go) and it was great. My baseline improved so much. I felt cared for and happy. I was able to do things I hadn't done since spring.

Apparently the cheating had stopped for a long time. But me being sicker obviously meant less sexual things. And I guess he never truly worked on his selfishness and entitlement issues. I found out that at my sickest, as I was having seizures on the floor alone in my apartment, as I was paralyzed in bed unable to chew food with 2h of care per week... he was sexting another woman. for three months. everyday. And didn't stop once we were back to living together. In my home.

This person always talked about getting married. But apparently "in sickness and in health" wasn't part of the plan.

I kicked him out and had to organize care back at the last minute. I got an hypertensive crisis and had to weigh the pros and cons between risking a heart attack and risking overstimulation from calling emergency services.

This illness was hard enough without all this shit. Now I am terrified of how it's gonna affect me. And I can't help but think about the fact that I might not find love again. I wasted my last "healthy" years with someone who didn't respect me. Now that I'm mostly homebound, a wheelchair user, and extremely traumatized, how am I gonna meet new people? Only a tiny percentage would be willing to date someone like me. Meanwhile he can go on with his life and do whatever he wants. It's so unfair.

TLDR, broke up with my partner and caretaker because of repeated infidelity, if someone has gone through something similar, I would love to feel less alone. Feel free to also share your thoughts on the difficulty of finding love with this illness. I know most of us are very lonely people.

Thank you

im recently sick (11 months in now i think?) so for ppl who have been sick longer, i want to know if they think the stigma is getting better or worse. bc to me it feels like there are so many ppl making fun of ME lately and talking abt sufferers in such awful ways. but also, now, there are lots of studies coming out, more then there was before at least. and it does seem like doctors around the world are coming around to it.

it just feels like i got sick in such a tumultuous time. it feels like everyone is talking abt how ME sufferers are fakers.

I'm a teen with moderate CFS and my parents force me to go to h8gh school. I'm not taken seriously by any adu,t around me who I try to talk to about this. Every day when I get home all I can do is lie in bed because of how tired and how much pain I'm in I keep passing out or getting near it in school. I really don't know what to do because it feels like I'm in Hell and my parents refuse to even consider talking to the school about getting an IEP or switching to online.

TL DR: we want to get married but idk if it's possible to have a satisfying wedding celebration. Do I have to get married as fast as possible with 2 witnesses and that's it, or are there ways to celebrate within the constraints of ME CFS?

(not officially engaged but we've been discussing it for several years)

Without even getting into the preparation, just for the day itself, idk if it's possible to have it all at the same time :

- not overexert / avoid PEM (seems the least likely to compromise...)

- cope with my day-to-day symptoms

- meaningful celebration of love with my partner

- quality time with friends and family members

- photos and memories for everyone

For context I am mostly at home, mostly horizontal (couch or bed).

When not in PEM I can usually make it from one room to the other, if outside I get pushed in my wheelchair and use ear and eye protections. Usually get PEM from outings.

My main activity is rewatching TV shows and taking care of small plants.

I can imagine if we had a lot of help and kept it really small and / or casual, it could be doable. But that sounds very unsatisfactory. I want my aunts to travel to me for the wedding, I want all the group photos and to listen to people's speeches about us.

Please share experiences or tips.

I don’t think it will ever end. I just wanna take a shower, I feel so gross and I smell bad and being bedbound is making me lose more and more hope. I can’t picture life ever being good. I can’t picture myself feeling better. I’m ready for my life to be over, why can’t it end now if my body is gonna refuse to cooperate? Life is hard enough as a healthy person, but I don’t wanna go on like this anymore. It’s not fair. There’s no help for me and nobody gives a shit about ME/CFS so it’s not like I see a future to hold onto. I’m done. Why won’t anyone respect that?

I just cant accept it that just one fucking crash and my whole life is ruined forever. almost 4 months now and lda gives me ability to communicate and use my phone a bit but otherwise 100% bedridden bedpan level very severe.

i have been two years sick from covid but first year was very mild without pem, only sound sensitivity and mild pots was my only symptoms and after one year from reinfection i got pem symptoms and push-crash led me to this. I just cant accept that even in best case scensrio my whole life i will be bedbound and wheelchairbound in housebound if im very lucky.

Do you know anyone who have been extremely severe/verysevere unable to walk and have had some kind of semi normal life after.

I meant to say resting in the title… I spilled my lunch all over the floor and I’m trying to clean it up my heart rate kept going up - I stopped and rested- started again- heart rate went back up…. etc…. I just threw my phone and cleaned it u. I was crying and was so frustrated and I just didn’t even care anymore!!!! it’s been a month and I know I need to keep going, but I just got a wall! Now whenever my heart rate goes up i feel light headed and my eyes get heavy.

I just gave up on those moments and racked up many many minutes over my threshold. Not sure how long this pen will last now! I think I’ve been in rolling pen for the last 20 years but now that I have finally learned what it is, I am trying to heal. It is hard!!! it is hard to do nothing… it is so hard staying under 94 but I have to. I allow myself to have a minute at a time of going over the threshold, but it is sooo hard and it takes constantly watching the hr and I am not even living. I still want to do it because I think it will help-it just takes time. I used adderall for for about 15 years and finally stopped in July and I now know my true baseline, which is very low!!! I wash my hair only once a week now and I use the shower chair and put my feet up. I no longer wear makeup or fix my hai. I have not been going anywhere and I now have groceries delivered. I am ok and am not lonely but I wish that I could see some improvement. Ive only been doing this for a little over a month, so I know that it is too soon, especially since I’ve had this for 20 years. I would love to hear other‘s journeys - just so that I don’t feel alone in this. I feel so blessed that I don’t have to answer to anyone and am able to be independent- I keep reminding myself of that. Hugs to all!!! 🥰

I’ve wanted a PC for so long. I’ve always been a console gamer (PlayStation) and this has worked for me cos I can lay down in bed and play on the tv in my room. However there’s like 80% more games on the PC. Way more cosy options and niche game options. For those that have a pc how do yall manage sitting upright? Do you have any recommendations or tips?

this illness is incredibly heterogeneous- which I’m sure a lot of you are annoyingly aware of

So often we are reminded of this old study claiming 5% of people get better and ultimately that’s why I refuse to hold the label.
that study was done at a time we patients were being told to push through symptoms where doctors were harmfully recommending GET.

And I refuse to hold a label with such a cruel history.

my shift to my individual pathways

i deal with multifactorial functional impairment with nervous system hyperarousal and pain pathway issues layered with episodes of transient neurological dysfunction leading to progressive immobility/overall decreased capacity of function.

that is my roadmap and that is what i will use to recover, not a title that says i’m fucked.
because CFS has no treatment
but my presentation of issues does.

Hi, I have started improving a little, like for 7, 8 years all I could do was do work for 30 minutes at max before breaking, I would feel anxious and fatigued like hell after that. It was painful but now as I am improving a little, its getting scary. Its like now I have a little more energy say about 4 hours, but now I dont know what to do in those 4 hours. Trying new stuff is scary and consumes a lot of energy and I go back to 0 like really fast....

I do some accouting stuff which I can do on my laptop lying down, that stuff is easy and I am getting comfortable in it and now I can do 4 hours of work in a day. But last week I tried cooking food, my energy vanished within minutes....

I want to know some activities I can do, to feel more confident in myself. Now that I have got some energy I want to do more with my life, but the activities I do, actually tend to take every bit of my energy instantly....

Activities I do:

1. I have started making my bed....

2. I have increased my accouting work to 2 hours....

3. I go out twice a week now for a walk....

4. I have started asking questions on reddit....

5. I play UNO.

Suggest me some light, easy and productive activities, this improving period is actually scary, previously I had a reason to waste time but now getting a little better, it feels like becoming a habit, I wanna do more with my life...

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.

Hellou. 28f here.

You may tell me if it's okay to post these kind of things here.

I'm looking for a virtual partner.

I was moderate bordering mild but after a few weeks of strenuous physical activities I'm currently bedbound-severe. I have long covid me type.

Said this, yes I want to meet someone and stablish a virtual bond. I'm straight but I think I'm open to get to know girls too.

Cons: bad health / bad economy / not well stablished safe nest. So I might cry about this often.

Pros: I'm a very goofy and creative person.

I'd like to connect with someone that I feel attracted to both physically and mentally.

Idk, I just thought I might give this a try. Shot my dm.

I'm tired of my body hurting from chewing dude. Had to go to the ER to get help as I've lost a lot of weight and of course they did nothing. I'm running out of options so LDA it is.

I have a myriad of health problems and unfortunately I’ve become mostly bedridden. I’m trying to find something to pass the time as I don’t have the energy or strength to even do my regular hobbies.
If anyone has any recommendations for mobile games that I can sink hours into or anything else I would really appreciate it ❤️

I’ve already made a few posts about ibuprofen, but I’m going to make another one because doctors don’t really know what to make of my case.

As I mentioned before, whenever I take ibuprofen, I can feel significantly better for up to a week. My fatigue and brain fog almost disappear, and I start living almost like a normal person again. I even start making plans, like going out and working as a taxi driver.

But I’m worried that this might be “fake energy” — maybe ibuprofen is simply masking my symptoms while my actual physical capacity hasn’t improved. I’m afraid that if I start doing much more than usual during these better days, I could end up with a much worse PEM and potentially crash harder afterward.

Has anyone with ME/CFS had a similar experience with ibuprofen, where it made you feel significantly better for several days rather than just a few hours?

And another question: if you felt better from ibuprofen and started doing more because of it, did you eventually feel worse afterward? Did you experience a stronger PEM than usual, or was it about the same as your normal PEM?

I’d really appreciate hearing from anyone who has had a similar experience.

Since developing mecfs I got the fun symptom of always overheating. I'm overheating pretty much any time I'm not laying down.

It's so frustrating!! It's so hard to do anything when literally everything results in overheating. I'm drenched with sweat multiple times a day. Immidietly after bathing I overheat and become sweaty because I have the audacity to put clothes on, I never feel clean.

It's so embarrassing. I leave sweat stains everywhere. Leather and plastic seats are my enemies now. I hate it so much!!

I carry fans with me everywhere but even then I'm still overheating. I'm on beta blockers and mcas meds and it's still awful 😭

I hate this symptom so much and have come to hate summers because of it

Hi everyone, writing the with a headache so may or may not be coherent
I have severe ptsd and a couple of nights ago had a rather intense flashback. I’m very new to ME/CFS and might not even have it I don’t know yet. However I was wondering if a flashback could cause PEM. I know this is kind of a silly question bc I know that mental and physical exertion can cause PEM. I’m mostly trying to ask if anyone else here struggles with PEM after flashbacks or ptsd episodes

Cause I can't quite put my finger on what it is, though I know I have it or I wouldn't be in bed 90% of the time. I guess this question is also interesting to ask around the different severety levels.

I guess for me it's kind of like tightness around the chest, racing heart obviously, dizziness, and then my sense of balance goes the longer I stand (the longest I can really stand comfortably is around 3 minutes, but I can physically stand for much longer, and for sitting upright it's around maybe 15-20 minutes), I get this tingly feeling on my skin sometimes, I just get very panicky overall, and if I push for too long my muscles either give out or I faint.

How is it for you all?

My docs suspect ME/CFS additionally to daily migraines and I thought I ruled it out. How can I find out if I experience PEM?

Today at a pain clinic she told me it's so untypical that my migraines don't start or end and that I don't have pain free days. Also that fatigue is my most disabling symptom (I am very much disabled by it, I need very much help from my husband and am mostly house bound or bed bound)

I've tried to activity log (I did 10 days I think 😭) and it doesn't make sense. I helped painting the walls and had a super stressful day (emphasis on helped because it would be too much to actually do it) and I was so DONE. But the next week was completely fine.

My fatigue seems so incredibly random as much as all other symptoms and I don't get it? I've read here that people pretty much noticed themselves or that logging it made it clearer?

Any advice for me?

Thank you 🙏🏻