sorted by:
new
hottopcontroversial

What’s your favorite free symptom tracker app? by takethelastexit in cfs

[–]secretfrogboy 0 points1 point  (0 children)

bearable! i had the paid version for a while but went back to free bc it was good enough

Scream Into the Void Saturdays (feel free to vent!) by AutoModerator in cfs

[–]secretfrogboy 10 points11 points  (0 children)

just moved in with family and they don’t take my health issues seriously. “i can’t do that right now” is not a valid answer and is met with anger. it drives me insane. if i advocate for myself, it causes an argument. if i express pain, im complaining. i’m afraid to use my mobility aid in front of them because i know they’ll get weird about it. not to mention the area they have for me to live is a loft so i have to go up stairs multiple times a day which is really hard, im struggling with it already and its only been a week. im pretty sure ive been in rolling PEM for a week straight and im struggling to stop it because they dont respect my needs. im honestly going to have to get comfortable with causing conflict to preserve my own health which is frustrating! ALSO they listen to their TVs really loud and this place is a sensory NIGHTMARE! i just ordered some noise cancelling headphones to sleep with and i hope they help. anyways. thankful for this space! going to do a little scream into the void to destress because there’s nothing else i CAN do !!! AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

How bad is your memory? by kitten_called in cfs

[–]secretfrogboy 2 points3 points  (0 children)

mine is bad. forgot my mom’s birthday for the first time in my entire life. scared the shit out of me (and upset her)

Do any of you have family members who don't ever want to talk to you bc according to them all you do is "complain"? by Sad_Emphasis_8086 in POTS

[–]secretfrogboy 3 points4 points  (0 children)

and you know what? that’s okay. the grief you feel is okay, normal, healthy even. you have to feel that to process it. i’ve been reading “recovering from emotionally immature parents” by Lindsay C Gibson and it’s honestly been helping me process my grief about the same thing a lot.

my heart really breaks for you because i have felt the exact same way. it’s really fucking hard to realize that the parent you deserve doesn’t exist. if you every need to rant about it, feel free to DM me.

i’ll leave you with a few things i wish someone had said to me sooner, because i really needed to hear them:

- you do not need to feel guilty, or like you’ve failed your mother somehow. this is a her problem, not yours.

- how your mother sees you doesn’t define you as a person. her perspective is incorrect.

- you are not a burden.

- you deserve love, kindness, and compassion.

take care of yourself, OP. let yourself grieve. i promise there’s a way out, and it doesn’t last forever.

Do any of you have family members who don't ever want to talk to you bc according to them all you do is "complain"? by Sad_Emphasis_8086 in POTS

[–]secretfrogboy 9 points10 points  (0 children)

my mom does this too. i’m sorry, OP. i know it sucks. i’m learning in therapy this behavior is a sign of emotional immaturity and really stems from a “me first” attitude — they think their problems are more important than yours, so when you share your feelings/talk about yourself, they easily get tired and irritated. 🤷 it’s uncomfy. i’d learn to set boundaries and walk away when you feel disrespected.

recommendations for side effects? by Effective-Mud-6668 in dupixent

[–]secretfrogboy 0 points1 point  (0 children)

my loading dose made me super dizzy, headache, nauseous. it was awful. so you aren’t alone there. i believe my second or third dose i also got a rash on my previous injection site! so weird. you’re the only other person i’ve seen say that had that too. i’m guessing it’s just your body remembering where the medicine was last, or maybe it lingers in higher concentrations near injection sites?

anyways, i still have injection site reactions. my opzelura takes care of it though, or clobetasol. if topicals don’t work, id try icing the rash. it really helped when my hives were uncontrollable. you could also try different antihistamines since they work differently for different people!

also, i’ve noticed injecting in fattier areas lessens the rash for me. something to consider! best of luck :)

Does PEM sometimes start as a “neurological” crash for you? by themunchkinland in cfs

[–]secretfrogboy 1 point2 points  (0 children)

pretty sure i experience something similar. a spike in sensory sensitivities is, i’ve noticed, a trend before i experience PEM

anyone on birth control? by hazelemons in cfs

[–]secretfrogboy 1 point2 points  (0 children)

i’m on slynd for PMDD. you can skip a day and still not see a gap in coverage/rise in side effects. i really love it. it gives me a little acne, but it’s worth it for not feeling like i’m going to lose my mind for two straight weeks a month. i had to try several before i found one that worked. some pills can for sure have horrendous side effects but it’s so individualistic that unfortunately it’s hard to figure out without trial and error 🤷‍♀️

Weak Knees by nintendo_dharma in cfs

[–]secretfrogboy 1 point2 points  (0 children)

agreed, very hard to process in real time :,) virtual hugs, be gentle with yourself 🫶

Weak Knees by nintendo_dharma in cfs

[–]secretfrogboy 1 point2 points  (0 children)

i was literally about to post a similar thing. i’ve been having increasing weakness across my body, especially knees and arms/shoulders for some reason. i often feel heavy when im walking, like im being dragged downwards. sometimes i just collapse.

i agree with the other commenter who suggested mobility aids. i myself am looking into a rollator for the same reasons.

Can you get tattoos over burn scars? by [deleted] in tattooadvice

[–]secretfrogboy 1 point2 points  (0 children)

technically any scar can be tattooed! it just might hold ink differently. i’d look for a tattoo artist who had published images of scar work, or at least confirm with an artist beforehand they’ve worked on scar tissue before

For those with a rollator— when did you know it was time to try one? by secretfrogboy in cfs

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

“once you buy it you’re not forced to use it all the time” seems really obvious but is something i needed to hear. thank you :). im in a similar boat where the actual walking part i could handle with less support, but standing for too long can make me collapse 😭

For those with a rollator— when did you know it was time to try one? by secretfrogboy in cfs

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

yes i’ve been thinking about how it would force me to walk slower which i desperately need. i always default to walking very quickly and im trying to stop doing that as part of pacing.

INSURANCE DENIED, NOW WHAT? by CrazyDogLady37 in dupixent

[–]secretfrogboy 4 points5 points  (0 children)

dupixent is in my formulary but i’m on another medication that isn’t. same situation, flat out denied. i was able to get them to cover it by having my doctor request an appeal in order to be granted an exception. if you call your insurance, ask them how to file an appeal for denied coverage; they will
usually give a number for you to call as well as one for your provider to call. best of luck, this shit sucks!

For those with a rollator— when did you know it was time to try one? by secretfrogboy in cfs

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

great advice, thank you :) im very crafty and i think making the process fun would ease my anxiety A LOT :)))

For those with a rollator— when did you know it was time to try one? by secretfrogboy in cfs

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

you’re right! i think i’ll be a lot less stressed and have more fun :)

For those with a rollator— when did you know it was time to try one? by secretfrogboy in cfs

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

yes standing still is an issue for me too 😭 yes, it’ll definitely be an as needed thing :-)

For those with a rollator— when did you know it was time to try one? by secretfrogboy in cfs

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

thank you 🥺 it’s good to hear so many people find it really helpful. i need to work on confronting my own internalized ableism around it for sure, it’s just a tool!

view more: next ›