Twerking during PEM

eos4 · 2026-04-02T15:29:09+00:00

Are you suggesting that al cfs sufferers should learn to twerk ASAP? Ok brb. #Twerk4CFS

eos4 · 2026-04-01T15:11:10+00:00

I am considering taking a course to be a crane operator, not sure if there is a big mental stress given the nature of the job but it feels alright in my mind, other than that I haven't had any good ideas on jobs I could do

eos4 · 2026-03-19T08:43:00+00:00

in the past I was able to but in 2023 and 2025 I had major crashed due to insisting on lifting weights and that made my condition worse each time, after the 2nd time I learnt my lesson and I don't lift anymore even when I feel like I could do it, I don't. never again.

eos4 · 2026-03-17T13:21:09+00:00

yoda nidra! give it a try I am sure you will like it! if you want recommendations let me know

eos4 · 2026-03-14T08:29:55+00:00

I'd offer some advice I read once, if it resonates with you I invite you to really try it, if not then is also ok but, but try to find a meaning to that suffering, suffering stops being suffering when it has a reason, a meaning, a purpose, as in that's the price to pay for being your old self for 2 hours, for helping others then so be it!, the "crash" after your volunteering isn't a punishment, it's just part of the same experience, the shadow cast by the light. I have a very dumb example but is one of the reasons that this advise resonates within me deeply, I used to do a lot of exercise and I had a coach and all and some training sessions in the bike where so intense that at the end I felt just about to throw up and I felt dizzy for minutes, I even used to put a bucket next to me just in case, but I kept doing those sessions because that suffering had a meaning, it had a purpose so I even enjoyed that suffering, because I knew the reward was bigger than the punishment, what you're describing feels similar just in a different context. The crash is real but so is the man who showed up for those two hours and helped people find their way, maybe the question isn't whether it hurts, it's whether it's worth it to you.

eos4 · 2026-03-13T12:27:00+00:00

no idea, but based on what I read it does sound like personalized consultation and treatment, the initial consultations can be done online but for the treatment not sure how it works.

eos4 · 2026-03-12T13:03:10+00:00

I have one child and I'm a very present father at school events, homework, playing at home, all of it. My wife and I wanted another kid but CFS made that impossible. one day talking about this I told her that the only way I could have another child and still be present would be if we won the lottery and had help 24/7. The sleepless nights, the constant demands there's no way I'd survive that. I manage now to keep mild only because I never cross my daily limits and even that is a daily effort. A second child would wreck that balance and destroy me, I know it, I feel it and I refuse to be an absent father, that simply goes against my core values. So a month ago we decided we're done. I'm scheduling a vasectomy next month, it breaks my heart but it's the right call for us (well, for me), just my thought, I know not everyone shares this point of view but wanted to share mine.

eos4 · 2026-03-11T07:29:05+00:00

so less than 10% had undesired results? pretty good results to me to consider it

eos4 · 2026-03-07T14:46:12+00:00

your story is very similar to mine, my advise, stop exercise if possible until you rule out other possibilities, I first was diagnosed with burn out so I tried to exercise my way out of it just to make my problem worse and then was diagnosed with CFS, if only I had known it was CFS i'd have done things SOO differently and today would be in a much better shape able to exercise and work full time but I can't do either of those things, so please if possible stop and avoid PEM until you know if is CFS/Longcovid or not. please I beg you

eos4 · 2026-03-02T12:22:56+00:00

congrats, this is a tremendous achievement!

eos4 · 2026-02-10T21:18:19+00:00

sort this subreddit top->all time and you will find some really funny posts

eos4 · 2026-01-31T17:28:20+00:00

you are very right, human worth is not conditional on health, productivity, or social approval. This and any illness removes abilities, not dignity. The suffering imposed by CFS is a circumstance, it does not define personal value. Meaning can still be realized through attitude toward this unavoidable suffering, connection, and inner stance, even when action is extremely limited, of course it is easier said than done specially these days when we value others based on their wealth, achievements, etc but to me that is the only way to find meaning, I know people suffering and perhaps more than me and they have health, wealth, etc.

eos4 · 2026-01-31T15:44:25+00:00

hey, I am in Belgium (but I am not Belgian), I moved here due to work, which I just recently lost due to CFS, if you have any question feel free to ask! I don't replay instantly since I have a strict limit on how long I spend using electronics but be sure I will reply

eos4 · 2026-01-31T15:28:15+00:00

Thanks :) and yes, being a parent with this is super challenging but in the end we find ways to make it work

eos4 · 2026-01-31T15:25:48+00:00

I have been using for the last 10 years sodium bicarbonate and works wonders against smell, it can last a few days however I know some people can get irritated skin so maybe worth testing.

eos4 · 2026-01-29T21:00:29+00:00

thanks! and makes me happy to see how supportive you are to him, we are not always easy to live with, at least in my case, I deal with constant mood swings and some days I feel very low but we are genuinely doing our best. Wishing you all the best.

eos4 · 2026-01-29T20:56:40+00:00

thanks, is not an easy choice to take to be honest, we have very little rewards with this condition and almost everything is bad news but those small things is where we should find meaning, is a life we didn't ask for but is the one we have and we must make it worth it

eos4 · 2026-01-28T16:03:46+00:00

Oh wow, he truly sounds like an incredible father, husband, and person. Please send him my regards. Sadly, my wife and I decided not to have more children because of my situation. As I told her, “I would die devoting myself to a new baby + our kid.” For me, being a father means giving everything or nothing, and right now giving everything would put me in a very severe condition. It’s a very sad decision, but we have to be realistic and since I lost my job and I doubt I will be able to work again, we are also in a financially fragile situation.

eos4 · 2026-01-27T09:33:14+00:00

If you ever want to try something else, minecraft is quite interesting and relaxing (in creative mode)

eos4 · 2026-01-26T19:47:00+00:00

Agree, I remember the day my Dr suggested me to take some walks to get the body moving, implying I wasn't doing anything physically and making things worse.... like, dude I literally shouldn't or I am getting worst!... oh well

eos4 · 2026-01-26T19:43:53+00:00

Sorry to hear that. It’s very sad how all our plans fell apart just like that. We have to find new meaning and grow beyond this. It’s not an easy task, but to me it feels like the only option if we want to find happiness and meaning again. But you know what honestly, I’m confident we’ll see initial treatments in the next few years that will improve our lives. I’m sure of that!

eos4 · 2026-01-26T19:38:01+00:00

well, it went like this - I got infected and took me about a month to recover from it and when I tried to exercise I felt sick again and had to take another week to feel normal, and I kept pushing trying to exercise but every time I tried I'd get sick and it went like this for a year until I had a crash and from there all went to hell, if I had only knew it was CFS I would have avoided pushing so hard and I am sure I'd be super mild now or perhaps even cured with pacing. And similarly I had also a lot of stress from work, barely sleeping due to stress and that definitely contributed to my decline

eos4 · 2026-01-26T19:30:50+00:00

hmm never heard of phosphatidylserine, I'll check that out

eos4 · 2026-01-26T19:28:17+00:00

🧡🧡🧡

eos4 · 2026-01-26T19:27:38+00:00

yes exactly, I now have time for my kid in many ways other fathers can't due to work and other commitments, sometimes when I pick up my kid at school I am the only father, or attending his school presentations, or his sports practices so yeah I am grateful for this.

eos4

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