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Posted 3/9/2015 4:09 AM (GMT 0)
I'm so tired of hearing you look fine!! Especially when I'm having a good day!! I feel like I can't even have a good day because then when I have a bad day everyone will say well you were fine yesterday.

I don't really talk about my sickness so mostly no one but family knows about it. If I have to tell someone else they mostly say things like oh I'm sorry, you know that kind of stuff that they say when they don't know what to say.

The saddest part is it's my family that mostly gives me the you look fine crap!! Why is that??! I just want to scream and cry......
You all know what I mean. I guess I just needed to vent, sorry. I'm just so confused. If I have a good day or fake like I'm ok just because I want to be there then I get well you look fine or you were fine yesterday. IM NOT FINE!!!!!!
Posted 3/9/2015 7:57 AM (GMT 0)
Hi Betsy,

One thing I have learned from this illness is that we can't let what others think define who we are. Take it one day at a time. Ignore other people's opinions. And most of all, don't let it effect how you feel.

It is up to us to keep going on. Up to us to take control of our moods. This illness is a tough one and many of us have been there with the "you look fine" comments. I just say "thank you". Then go on about my business. It isn't my place to make other's understand.

I hope that today is a better day. Shake it off and keep enjoying life one day at a time. Maybe tomorrow we will feel fine too...

Here for you...

Hugs, Karen...
Posted 3/9/2015 1:36 PM (GMT 0)
Yeah, it's an invisible illness, and even people who love you truly don't get it unless they suffer with it. I'm sorry. (((very gentle hugs)))
Posted 3/9/2015 1:45 PM (GMT 0)
Thank you both!! I never would wish for anyone to feel the pain we do on a daily basis. Sometimes I just wish they could for 30 min 15 min just so they would understand.........
Posted 3/9/2015 1:46 PM (GMT 0)
Hi Betsy,

I think I know how you feel. Dealing with others and this condition is soooo hard for me. Alot of times I feel misjudged. Even when I do communicate with people that are close to me, they still don't get it and I get exhausted trying to explain, lol. Sometimes I feel like what I say goes in one ear and out the other. You are not alone with the frustration. We will have better days, just hang in there. And I will say a prayer for you today.

This may sound silly but I was explaining this morning to my daughter about the spring season and how the winter kills the flowers and leaves but the roots are still alive. and this clicked in my head because I have been flared up over a week now. I feel like I am in the winter season during my flare ups, no blooms, almost lifeless. However , my roots are still there. And when this flare ups passes, I will be in spring. It will be sunny, cool breeze, beautiful blooms, butterflies. So I believe we have to keep our roots strong during these cold bitter winters and they will pass.
Posted 3/9/2015 2:11 PM (GMT 0)
Thank you Purple. I read your post and just cried. You are so right, thank you so much.
Posted 3/9/2015 2:59 PM (GMT 0)
Spring is almost here you guys!!! Much warmer today. Going to be in the 50's soon. Heat wave for me, but so was 20's... Ha!!!

We will all be feeling better soon when we can get outside and do some enjoying... I hope you all have a wonderful day!!!

Hugs, Karen...
Posted 3/9/2015 4:58 PM (GMT 0)
Yes betsy, i got that a lot..i could do normal days at times..so therefore days i could not, i was just dramatizing..

One of my sisters was one of the worst over this... I was always faking in her mind to get out of things..no actually we would rather be busy and active..

I actually found myself feeling sorry for those people who lack compassion for others in pain. Believe me when she is in pain, she expects everyone to show her compassion..

I find that friends just do not want to hear about it at all..if its not their issue .

I would have like a local group to meet with.. But there is none close by for me..so i found online groups like here.. And its helpful , just to have others who understand.

Lj
Posted 3/9/2015 5:18 PM (GMT 0)
Having this forum does help, you're right Lj. It's just so frustrating sometimes!!
Posted 3/10/2015 12:15 AM (GMT 0)
Hi Betsy, I feel your pain...literally! Ha!

My grandma will even tell me that I "sound better" today when I talk to her on the phone...even when I feel like I'm dying!!! It drives me crazy!

I'm just going to say "thank you" from now on and change the subject.
Posted 3/10/2015 3:22 AM (GMT 0)
That's a great idea Michelle!! I think I may do the same!!
Posted 3/10/2015 6:00 PM (GMT 0)
I have a friend who is a pediatric doc and doesn't believe in Fibro. My daughter was teasing me about sleeping in til 10 last week- it was a crash day after insomnia. My daughter thought nothing of it as we joke about these things all the time. The friend went off on "it must be nice to be able to sleep in all the time, I have a cold and haven't had a good night of sleep in 3 days". I waited until she was done, responded sympathetically and went on. In my head, I was a bit steamed and thought to myself "in my world, we call that ... half a normal week".

The only way I can deal with these things is to keep a perfectly smooth and pleasant face (or voice on the phone) and then think all my thoughts. It's hard enough to keep my temper these days. Feels like I have calm or total witch as my only 2 levels. I do however, lambaste them in my thoughts. I'm practicing the idea that I could give them a piece of my mind ..... but clearly they wouldn't know what to do with it. I think sometimes people have no idea what to say so they say stupid things. Hmm .... new thread idea ....
Posted 3/10/2015 6:03 PM (GMT 0)
I totally understand Jenni and I totally agree with the new thread!!
Posted 3/11/2015 4:46 AM (GMT 0)

Momof2nSC said...
I never would wish for anyone to feel the pain we do on a daily basis. Sometimes I just wish they could for 30 min 15 min just so they would understand.........

I have wished for this many times.
Posted 3/12/2015 2:45 AM (GMT 0)
But you look fine. ..... It's not my looks I'm worried about is always my reply. LOL.

Just remember fibro is an up hill climb but by golly you look good while climbing! !!
Posted 3/12/2015 3:46 PM (GMT 0)
Michael - that gave me my best laugh today. Thank you.
Posted 3/14/2015 3:43 PM (GMT 0)
Once My wealthy preacher landlord interrupted me mid sentence, the sentence being,"at least you have each other to take care of you when...<cut>."

I was speaking of the difficulties managing alone with this illness.

He lashed back in full bellow. "No! We rely on Jesus! Not each other!" And continued on with his cruel tongue lashing accusing me of falling away from God and that I should learn from my suffering. Then his wife pointed to the bible by her side, attempting to hand it to me after asking if I had a bible.

Of course, several seasons ago after he broke his ankle while on an expensive Aspen ski resort vacation, he praised his wife up and down for taking care of him while he spent weeks on crutches, after the surgeries, etc.

Tango
Posted 3/14/2015 4:27 PM (GMT 0)
Wow, I wish I could have your landlord, Jen! NOT. That alone has got to be major stress. Yech.

I really like your reply too, Michael. Gonna try to remember that one ;) It really gets to the heart of the issue!

I find it nearly impossible to go out in the world and not draw attention my problems, because every other minute I'm bumping up against them in an obvious way. Now it's even worse because of my intense Sciatica - not being able to pick up things I drop (like my reacher) or open doors for myself in public places.

But even before that, it seemed I could never go "incognito." Something always outs me...like the pillow that's like a permanent appendage, to put behind my back when sitting - people tend to think that's pretty cute ;(

Personally, I find it more natural to say it the way it is and let the chips fall where they may. Maybe that's the wannabe teacher in me - I don't know.

Debbie
Posted 3/14/2015 5:08 PM (GMT 0)
Yea, Debbie. Not! I used to semi get along with them, though I always felt uncomfortable about them in some deep down way. They'd be helpful moderately. I used to some volunteer work at a church. I didn't have the energy anymore and quit. Guess it wasn't good enough for them and the real them came out.

Yes, my looks are fine, not to worry, lol!
Posted 3/14/2015 5:23 PM (GMT 0)
On a lighter note, when facing the cruel and or uninformed, keep the humor forefront.

I knew I should have taken down all of those hex symbols and voodoo dolls displayed in my front yard! But my witch doctor said that was the cure for my fibromyalgia!

Tango nutness
Posted 3/15/2015 1:53 AM (GMT 0)
Tango sorry your landlords a jerk!! Michael I ❤️❤️ Your reply!! I will remember that next time someone tells me I look fine.
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