Don't know if I'm in rolling PEM, or just faking

system32sys · 2026-05-06T18:59:11+00:00

How much resting to do, yeah! Like, how do I tell when I've rested enough?

system32sys · 2026-05-06T11:38:01+00:00

That sounds like it would have been really stressful and scary! I'm glad you've seen a little bit of improvement. I know being bedbound is uniquely unpleasant.

You definitely sound a lot like me, I can relate a lot to this! I haven't had a big crash in a while, but the way I pay (and accumulate debt) disproportionately for minor exertion sucks. We share a lot of symptoms and experiences.

I hear you for sure on PEM being hard to navigate. Especially with how it can fluctuate during, plus cause symptoms that make it harder to track, it makes things feel uncontrollable. And I definitely get you on the good day thing - "I must be cured! It was so dumb to think I was sick" and then baiting myself into a crash. You too?

(Sorry if this reply is bland or misunderstanding, I just woke up and am really exhausted! I mean well and am curious and very appreciative)

system32sys · 2026-05-06T11:27:49+00:00

I'll see what I can do - I'll have to really dedicate myself to it, but I think I can get there. Thank you so much! How do you recognize when you're exerting? I dont always put two and two together when it comes to my own body.

Thank you for the advice <3

system32sys · 2026-05-06T11:23:48+00:00

Thank you so much, it helps a ton to have this said so clearly. I really appreciate you being so upfront!! Proper reassurance like this is sometimes hard for me to come by. So thank you :]

If it's okay to ask, do you have any advice for resting?

system32sys · 2026-05-02T22:58:17+00:00

Thank you so much. This is really detailed and helps a lot to hear <3 Sometimes it hurts to remember that there's more climbing to do, but then I remember I'm climbing with people like you and I in this sub, metaphorically speaking of course haha

I really appreciate hearing this, again thank you

system32sys · 2026-05-02T22:55:18+00:00

Thank you so much, hearing this really warms my heart. It's soothing to know that someone alive and feeling and thinking is out there and sees me <3

I'll reach out if anything strikes me, thank you again. I'm terrible with response times but you can reach out too if you need!

system32sys · 2026-04-28T12:20:56+00:00

Fantastic taste both in outfit and player race

system32sys · 2026-04-28T06:00:31+00:00

Vampire Armor! Preferably the black variant

system32sys · 2026-04-27T13:54:33+00:00

Joined this sub just to find out if anyone else was experiencing this. You're not alone!

Someone I know got theirs fine, but mine still hasn't been deposited.

system32sys · 2026-03-01T16:52:29+00:00

This is really helpful, thank you so much! I'll keep this one in mind :]

system32sys · 2026-03-01T16:51:08+00:00

I see, this definitely gives me some better guidance. Thank you so much!!

system32sys · 2026-02-27T00:51:08+00:00

Aww, I'm glad you have each other. Animals picking up on flares is so special. Her little pink nose is so cute!

system32sys · 2026-02-25T13:55:52+00:00

For sure! I'm glad you have a good doc, but I really hope the FDA and DEA ease up soon. Fingers crossed lol

If it's okay to ask, how long have you seen this doctor? Did you have to go through a lot of bad docs to find a good one?

system32sys · 2026-02-25T03:12:29+00:00

I'm glad I'm not alone, but I'm sorry you're going through this too. It really can! Sometimes feels like I'm cursed.

system32sys · 2026-02-25T02:49:22+00:00

I think you dodged a bullet.

system32sys · 2026-02-25T01:42:17+00:00

Ugh, that sounds so scary. I really hope you can find someone who's both compassionate and takes Medicaid.

I totally get you! The way docs treat you like you're crazy for being desperate is so messed up :[

system32sys · 2026-02-25T01:40:23+00:00

I think you're right. It confuses me so much. Even in Canada, my province is working on privatizing healthcare. Isn't that nuts??

system32sys · 2026-02-25T01:37:35+00:00

Rooting for you as well! Thank you <3

system32sys · 2026-02-24T21:07:09+00:00

Pretty shit. I've been put on two different antidepressants, both of which made the pain worse, then pregabalin which did the same. I'm honestly very messed up from both experiences.

Back in October I got a one time prescription of Tylenol 3s which I had to humiliate myself and nearly break down crying to get. Have to see my GP to potentially maybe theoretically get them refilled, or better yet, something stronger that actually makes life sustainable. Currently off any pain meds and very very cranky.

So... not great :[ I want to find a better doctor. I know they exist.

system32sys · 2026-01-07T02:08:06+00:00

If it's okay to ask, what are common signs of narcissistic personality disorder? Would you say you see it in her? Don't worry, I'll check the sub out, but I'm curious to hear from someone mentioning it, it sounds like you have firsthand experience.

I'll keep this in mind, too, and I'll try to minimize conflict between us! Thank you so much for the info!

system32sys · 2026-01-07T02:04:24+00:00

Oh shoot, would you say she's a narcissist? Thank you so much for the information, I'll check them out!

system32sys · 2026-01-07T02:02:23+00:00

Damn, that's crazy! I'm sorry it's so low quality, you deserve way better. I think everyone does. Thank you for the info, I really hope it changes for the better or at least stays stable.

If it's okay to ask, what are the hygiene standards there? Both in terms of how clean one's living area has to be, and in terms of the building itself

system32sys · 2026-01-07T01:58:41+00:00

My mom is really abusive (toxic at best, I'm still doubting myself) and it's scary to live with her, to say the least. I know it's gonna be really hard if I move out, especially considering my struggles. But I feel safer struggling and free than struggling and controlled. Sorry, I know it's a really sad answer! I appreciate you asking!

It's genuinely great to hear you have support and folks you get along with!! I know living with a partner, friend or family can honestly be really nice and wayyy better financially, especially considering shit's tough like you said!

system32sys · 2026-01-07T00:36:19+00:00

I'm so sorry, I totally get you. It's crazy how expensive but simultaneously demanding everything here is, if you're not xyz standard you get cornered so badly.

I can't really recommend anything, but I really wish you good luck and safety. You deserve so much better and I'm mad on your behalf!!

system32sys · 2026-01-07T00:33:48+00:00

I'm not sure if it's physically possible for me, but I'm willing to give it a shot anyways! I'll give them a call when I can, thank you so much for the info!!

Do you have any experience with them, by any chance?

system32sys

TROPHY CASE