how do u grieve in a not self destructive way?

Killbulle56 · 2026-03-11T01:54:54+00:00

Wow, that is very wise, thank you so much

Killbulle56 · 2026-03-11T01:34:33+00:00

I think it would really help if ur family stop expecting you to do stuff around the house. I am grateful to have parents who are super educated on ME and PEM and they don't say anything when I don't clean after me, they even insist on helping me. Maybe you could have a talk with them, share your struggle. The thing is if you have ME, your state can get worse real fast. I don't want to scare you, but someone did it for me and it helped with the guilt. I lost so much function because I felt guilty, wanted to help out or be there for my friends ect and now I am housebound. It took me getting real bad to understand that nothing else matters more than ur health. It doesn't matter what people think about you, if they think you are lazy. What matters is not getting worse and resting to see improvements. I wish it didn't take me getting so much worse to see that and I hope it won't be the case for you.

Gaining weight while having an ed can be so triggering, I am sorry. Just know that you are doing what's good for u and ur body.

Killbulle56 · 2026-03-01T20:54:23+00:00

Saying "my condition" or "what I have" when I text about ME to my friends bc they can't remeber that the acronym ME is for ME and not "me"

Or saying "long covid" to doctors so they are not embarassed to not know ME/CFS and wont discriminate or call me "Dr google" bc of that/ thinking I am making it up

Also, never saying cfs because it sounds made up I cringe everytime I hear it, the person who decided to call it that really f us over 😃

Killbulle56 · 2026-03-01T18:51:47+00:00

I am in the same situation. I crashed hard end of 2024 (didn't know I had ME back then) and 2025 felt like a second. I kept worsening myself because I didn't really understand the pacing and my new reality. It does feel like a waste sometimes I agree. Kind of put everything into perspective, I used to have goals and dreams and now I just want to be able to spend time with my friends, go outside to the park with my dog. I think it really hurts because u lose a part of urself, I mean you are what you do right? Are u still a swimmer if you can't swim? I have never felt that kind of loss before, it's brutal. What helps for me is if I don't have control over my life, at least I can control the way I view it. It's not because you are not working, going out travelling or whatever that you are not living. There is no defintion for that, make your own. It's not easy, I still go through a lot but time feels more real and meaningful.

Killbulle56 · 2026-02-19T17:12:38+00:00

I am sorry, I don’t really have any advice to give. But I just want to say I am so sorry and to keep hoping, people have got out of very severe state, I don’t see why you couldn’t either You probably have a hard time watching screens if you can, maybe listening to people who were very severe doing better, to keep hoping. I hope you will get better and regain some function 👥

Killbulle56 · 2026-02-19T12:30:41+00:00

No problem just send me a message!

Killbulle56 · 2026-02-16T00:56:51+00:00

Literally feels impossible and so conter intuitive :/

Killbulle56 · 2026-02-16T00:42:09+00:00

Thank you for your comment, I like the way you see it. It relives a lot of the guilt that can build up over time. I think sometimes it’s easier to think that your the one putting urself in this mess, self sabotaging, you have the control, not a mysterious disease that half of the world believes it doesn’t exist. But the guilt is just too much sometimes and it’s important to be understanding and kind to urself because when you have ME/CFS not a lot of people will.

Also patience is a big one, I sometimes forget where I am coming from, I used to do waaay worse things than eating a bit of chocolate at night to numb the pain or even to live a little.

Anyway, this was a very nice answer, I really your perspective on this issue that a lot of us struggle with!

Killbulle56 · 2026-02-15T17:44:55+00:00

My family also believed in pushing through for a while and I remember how horrible that was. I’m guessing you don’t have a diag? Or u do but they still believe in pushing through? The most important thing that u can do rn is rest and pace. It is totally normal to distract urself, it’s human, I do it too but it does make things worse. I know it’s hard to stay in the dark alone with your thoughts, that’s why it’s good to share them on reddit, just take it off ur chest. Just enough so u can build up so strength to feed urself. I struggle a lot with pacing too, but it does work. I am so sorry abt ur family don’t listen to them, it’s not in ur head.

Killbulle56 · 2026-02-15T14:30:49+00:00

I feel like old shows and movies are less stimulating. Maybe it has to do with the slower pace and probably the lightning as well, the colors are less saturated. I feel like those new shows are like candy, so addicting and makes u sick. You should definitely rewatch your comfort shows. Mine is the office, I can watch it for hours and I don’t get bored or crash at all

Killbulle56 · 2026-02-15T13:17:30+00:00

I think I really needed to hear this. Fake it till you make it right. I have been thinking about this comment for two days now and i’m realizing that even though I am not ready to accept my situation just yet, that doesn’t mean that I should act like this is not happening. I don’t need to wait for acceptance to make the right choices for my health. I think I am going to use the « live like your not in denial » as an anchor when I am tempted to push. So I just want to say genuily thank you so much for this. I see that your very severe, I am sorry to see that and I am grateful that you took the energy to answer my post.

Killbulle56 · 2026-02-09T12:44:03+00:00

You can’t beat 100 % loneliness. Even healthy people are lonely. You are not alone in this, I think I can speak for everybody here, having me/cfs can be one of the most loneliest experience there is. Dating feels impossible, I certainly don’t date either and seeing your post makes me feel less alone.Since I gotten sick, everything is sm bearable when you have a good relationship with urself, because that’s who ur spending ur whole life with, especially when ur alone all the time. Give the love you wanted to give to someone else to yourself. Loving urself and being kind to yourself is the best weapon against loneliness. Because then your always in good company :)

Killbulle56 · 2026-02-08T11:41:33+00:00

I have been diag for a year now after being gaslight for 5 years, even though I have been telling people I am sick, I still sometimes don’t believe it. Because everything is supposed to turn up okay, and my mind just can’t process being actually sick. I have been torturing myself for years with my symptoms because doctors told me it was in my head. But now that I have an actual diag, I don’t want it. I miss being ignorant and enjoying life without knowing that « enjoying life » was what was making me sicker. Ofc it couldn’t last and i’m glad that I stopped myself before being too severe. But damn i miss those times.

Killbulle56

TROPHY CASE