
Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.

deleted_user
hi everyone,
i'm sure alot of you can relate to this.most of my symptom's are silent.so since other's can't see them,they don't realize how you really feel.
just for an example.this morning i woke up feeling
really lousy.my husband get's up earlier when i don't go to work.i didn't want him to know how i felt,so i pretended to be sleeping.otherwise if he looked at my face he would know.
since i usually don't talk about my symptom's in everyday life except here sometimes,most people don't know.so i let people say thing's like "oh you look like you're doing great,except for a little trouble walking"or"maybe the ms went away"
i love that one."you look good how do you feel"
most of the time i say fine.i really don't like complaining.
i just thought i would share that with you.
at least between the humor and faking sleeping i'm glad i don't let other's know.sometimes and i know i can say it here,it can really be crumby.
they use to say in physicatric therapy "fake it until you make it" they may apply in some cases.
hope i'm not a being a downer to anyone.
sometimes i do get frustrated too.
i hope you have a nice day! i mean that!!!!
i'm sure alot of you can relate to this.most of my symptom's are silent.so since other's can't see them,they don't realize how you really feel.
just for an example.this morning i woke up feeling
really lousy.my husband get's up earlier when i don't go to work.i didn't want him to know how i felt,so i pretended to be sleeping.otherwise if he looked at my face he would know.
since i usually don't talk about my symptom's in everyday life except here sometimes,most people don't know.so i let people say thing's like "oh you look like you're doing great,except for a little trouble walking"or"maybe the ms went away"
i love that one."you look good how do you feel"
most of the time i say fine.i really don't like complaining.
i just thought i would share that with you.
at least between the humor and faking sleeping i'm glad i don't let other's know.sometimes and i know i can say it here,it can really be crumby.
they use to say in physicatric therapy "fake it until you make it" they may apply in some cases.
hope i'm not a being a downer to anyone.
sometimes i do get frustrated too.
i hope you have a nice day! i mean that!!!!
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People here actually understand. Hugz to you for being strong
Not about how you feel though, I am sorry. It is rather sad isn't it? We don't know whether to fake it til we make it (just so happens I told myself just today I was going to start that - we'll see), or just go ahead and start acting and looking just how we feel!
It's like we are being punished for not looking the part, so to speak, you know? I think it sucks, but I also think WE should not let those people dictate how we act, treat ourselves, etc... Just easier said than done I know.
I am actually the one who puts the most pressure on myself in that regard! Everyone else around me is great, but I seem to be my worst enemy :(
Take care and I hope you feel better!
Has anyone else experienced people starting to complain about some ache or pain and then suddenly stop them selves and/or say something like "but I am sure it is nothing compared to you."?
well today is one of those day's for me.(thank god i can tell you all)the pain woke me up 2 day's in a row.today 3:30 a.m.i debated do i take my med's already.i waited until 4:15.then i came down to write a journal.well wouldn't you know it the thing wouldn't process for some reason.i have pain from my shoulder's down to my butt,spastisity,burning sensation in the same area.this wonderfull ms hug in ft.from neck to shoulder's.it's now almost 8:00 a.m.and now let's throw in the rt hip down the right leg.i get that stuff from my husband & daughter (son in denial)well i guess we won't do this or go there.my brother is coming up from n.y.today overnight.i love him to death.i don't tell him much either.
we i gotta go hubbies up and i'm gonna like all of you,try to fake it.i don't know if i'll make it,but i sure will try.we could all just keep going couldn't we.i hope i'm not depressing any of you who read this.take care and i hope all of you feel ok to do what you have to do too.(even if we don't feel like it) we'll see.mmmmmmmmmm
hope the days been good for you, hugz if not. The one thing that is driving me mad is everyone says you need to tell me when you are ill otherwise i dont know. Ok fair comment. So i told people the response i got was oh, nothing else just oh. No hugs, no words of encouragement. I think what was the ..... point. So now i dont say anything. If someone says why didnt you say anything i say what would yoy say if i did. Well least i have you guys. You keep me going. Dont make me feel guilty if i am in a mood or want to whinge. Can you lot not be my family instead. Take care. Clairex
My answer is 2 fold.
1)I don't wait to be asked anymore. If I don't feel good I make it known to the people who are closest to me and know of my condition. I'm not looking for comfort but their support. I am putting people on stand by notice I may need their help.
2)To the people who ask me how you doing I say ok. Why? Because these are aquaintences I know and make already know of my condition and do not desevere my real answer of how I feel and do they really care? Are they going to be there when I say lousey. No, so why do they deserve the answer. I just give them my answer keep simple conversation, smile and walk away. Nothing makes more of a statement when you walk away and don't give that person the attention they seek.
i'm 58 dealing with depression & anxiety
than 14 1/2 yrs.ago dxed with ms.please i don't want to upset anyone.i'm sure you can relate to some of this.i can honestly say i don't have a best friend anymore.i have a few good friend's.i've pushed them all away.sometimes i don't want to answer thr phone or invite someone over.so eventually they stop calling.i can't blame them.oh and the thing that urk's me the most is function's,family or otherwise.my relationship with a dear cousin has been damaged.her daughter was getting married.we were ALL DRESSED AND READY TO GO"at the last minute i paniced and freaked out and didn't want to go.i'm truely sorry today that i didn't go,but it was to much for me.i was in an awful state.now it's my family,whenever a holiday comes up i start worring month's ahead of time am i gonna make it or not.then i get "here we go again it never fail's or "ma you alway's do this you back out at the last minute"or what's the matter you have social anxiety".my husband understand's somewhat,but i know he's fed up with it.i can't blame them.oh then i get from my husband's side of the family "i hope you can make it this year or make it in general"sometimes i push myself to go and most of the time i'm sneaking in something for the anxiety or the pain.don't get me wrong i don't abuse med's,just may take a couple more than usual.even if my kid's come up i'm nervous if i'm not up to cooking or even just sitting there feeling terrible and would rather just be resting in bed,so i will be better the next day.what a mess.
well now i'm really venting.don't get me wrong alot of times i go and ack like my crazy self and have a ball.i know i may pay for it,but at times it's worth it.i gotta say i'm blessed with my dear brother,sister-in-law and their 7 kid's who have never judged me for anything.they grew up knowing me (like other's have)but they are truely understanding.i am so greatful for that.i do feel terrible when i do dissapoint them when i really can't come
but they love me and forgive me unconditionally.i feel very blessed.boy am i glad i got to say this to people who understand.i never have that chance without judgment.you are all probably overwhelmed just at the size of this reply.lol thank you for letting me put in down in word's.smile!
lol
how about if we print these responses out and hand them out to whomever we want?