thank you so much for that post..you've really hit a nerve with me, but not in a bad way. (i'll try to explain myself here, but please note that i am in a baaaad flare today and i might not make much sense!)
i am terrible at communicating myself when it comes to my fibro. i just don't talk about
it, even when others around me are asking "what's wrong?" i just say "oh, nothing". my hubby has gotten to understand me well enough that he knows when i say "oh, nothing" i am totally and completely full of you know what, so he will just say "uh huh" in that way that lets me know he knows i'm full of you know what, but he will wait for me to
open up instead of pressing the issue. i really appreciate when he does this because it lets me know he's there and he cares without making me explain myself. also, i didn't mean to suggest that my dh doesn't care to talk about
this, but i do know that talking about
it upsets him. he's terrible at expressing himself, too, though, so when he's upset, it translates into being irritable. i know this about
him, so i know when he gets irritable when i talk about
my fibro, it's because he's scared and sad. that's not to say he gets that way ALL of the time, but i don't like to press the issue because then i feel bad for upsetting him and on and on. (i really don't like to upset people)
i think a lot of my problem with expressing myself and how i feel when it comes to my fibro is that i don't know what to say. when i am feeling fibro-flare bad, my brain doesn't work right either so i don't even know how to go about
explaining to someone what i'm going through. it all becomes a jumbly mess and i end up saying it wrong and getting frustrated so i normally just don't say anything at all. see-i don't even know if any of THAT made sense..lol. arg!!
so i haven't even really talked to my kids about
this because i am not sure what to say to them or how to say it. my daughter is older and i've explained it to her in a "clinical" fashion-this is what i have. these are the symptoms-but i didn't know how to express how i feel to her in a non clinical way, so i'm not sure if it had much of an impact. to her, i'm mom and mom is always mom and mom will always be exactly the same every day and whatever is going on with mom doesn't affect her life because i'm just mom. do you know what i mean? she's a teenager, so she's pretty self-directed and lost in her own things and i don't think she thinks about
how i feel, not because she's a bad kid (she's a GREAT kid!) but because she's just 15 and doing what 15 year old's do. i know i didn't think much about
how my parents felt when i was that age!
with my sons, i haven't said anything to them about
any of it because i don't know how to explain it to them on their level (they are 6 and 4). i wish they had a book on this, kind of like the "where do babies come from" books and stuff. lol. i just don't know how to translate the reality of fibro into language that kids their age can really understand. again, i don't want to scare them or make them sad, but i also know i have to stop NOT saying anything because i know that they know something is going on even if they don't know what, and the longer i go without explain the what of things to them, the more likely it is that they will build some terrible thing up in their minds and be scared and sad anyway! so, yes, i know i need to talk to them. if anyone has tips on how to talk to little ones about
fibro, i would greatly appreciate it!
anyway-back on point. i love your idea because this might be a way for me to communicate how i'm feeling without having to use words. this is something hubby and dd can use, too. if i'm having a bad day, i can put up my oscar (yes, they still have oscar
) and everyone can kind of gauge where i am at without there having to be a big fussy conversation about
it. thank you so, so much for sharing that idea because i think this is definitely something my family and i can work with.
i think i need to work on coming here and being more honest and upfront about
how i'm feeling, too. a lot of times i just want to be supportive of others because i have grown to care about
everyone here so much and hate to "see" anyone here having a bad day. even if all i say is "i'm here and i understand" (which is usually all i ever say lol) i feel like i might be helping at least a little. i'm one of those bleeding heart types that want to save the world and everyone and everything in it, so when i see others in pain, i just want to help, even if it's at my own expense. again, i hope i'm making sense here. my brain is so so foggy today...
oh, and yes we went and saw mall cop-so cute!! it wasn't exactly what i thought it was going to be, but it was still really fun. afterwards i told my son "i thought that was a really cute movie-what'd you think?" and his response was "yeah, it was pretty good, but not as good as hotel for dogs!" hahahaha. gotta love kids!