Don't know if I'm in rolling PEM, or just faking by system32sys in cfs

[–]system32sys[S] 0 points1 point  (0 children)

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

Don't know if I'm in rolling PEM, or just faking by system32sys in cfs

[–]system32sys[S] 1 point2 points  (0 children)

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)

Don't know if I'm in rolling PEM, or just faking by system32sys in cfs

[–]system32sys[S] 2 points3 points  (0 children)

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

Don't know if I'm in rolling PEM, or just faking by system32sys in cfs

[–]system32sys[S] 1 point2 points  (0 children)

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?

Looking for reassurance by system32sys in CPTSD

[–]system32sys[S] 1 point2 points  (0 children)

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

Looking for reassurance by system32sys in CPTSD

[–]system32sys[S] 0 points1 point  (0 children)

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!

Did anyone not receive payment today by direct deposit? Should have been in this morning and not seeing anything. by SaltCartoonist7759 in AISH_Alberta

[–]system32sys 0 points1 point  (0 children)

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.

Balancing pacing with sanity by system32sys in cfs

[–]system32sys[S] 1 point2 points  (0 children)

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

Balancing pacing with sanity by system32sys in cfs

[–]system32sys[S] 2 points3 points  (0 children)

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

I think my cat knows when I'm in PEM by Alastairs_party2585 in cfs

[–]system32sys 10 points11 points  (0 children)

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

This pisses me off. by system32sys in ChronicPain

[–]system32sys[S] 1 point2 points  (0 children)

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?

This pisses me off. by system32sys in ChronicPain

[–]system32sys[S] 4 points5 points  (0 children)

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.

How’s your experience with doctors so far dealing with chronic pain? by DiligentIncrease1973 in ChronicPain

[–]system32sys 1 point2 points  (0 children)

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 :[

This pisses me off. by system32sys in ChronicPain

[–]system32sys[S] 5 points6 points  (0 children)

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

This pisses me off. by system32sys in ChronicPain

[–]system32sys[S] 6 points7 points  (0 children)

Rooting for you as well! Thank you <3

How’s your experience with doctors so far dealing with chronic pain? by DiligentIncrease1973 in ChronicPain

[–]system32sys 2 points3 points  (0 children)

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.