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Old 10-14-2012, 11:01 PM   #1
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So frustrating !!!

I am so frustrated tonight. The thing that frustrates me the most about Fibro is that the only way that people know that anything is wrong with you is to tell them....but then you are labeled a whiner and they assume you are asking for pity. I would much rather have something physically wrong with me that people can see from the outside. People either think you are weak, or a hypochondriac, or lazy and because there is nothing outwardly wrong, they think you ought to be able to suck it up and move on. It's hard to explain how bad the pain can get and it's hard to explain the fatigue.
My daughter's birthday was the 4th. I threw her a party like I normally would even though I knew I would pay the consequenses the next day. When I woke up, I was sooo thirsty but I was so weak, I couldn't move my arm to reach for the water bottle 1 foot away. I hurt so bad that I had to go through excruciating pain just to wipe my butt...sorry FYI...but these are the things people don't see.
What got me so irritated is this: my sister had a stroke a year ago and she has to walk with a cane. Her husband gets on facebook every night and rants about how some stores and restaurants don't cater to the handicapped and how people treat them because of the handicap.
I am in no way comparing myself to my sister and I feel horrible because of what she has to go through. She cannot do the things she did before and people in her family accept that and try to make things easier for her....as they should. But because my family doesn't see anything physically wrong with me, I am expected to do everything I did before I got sick. As an example: My daughters birthday I made all the preparations and I ran the party all by myself. My husband took off to watch the football game with a friend and openly admitted that he was getting away from the screaming kids. One of my friends was supposed to come by and help me with the party but decided to drop her kids off and go run errands. They both knew I was in pain.
So now I have been laid up in bed all weekend trying to control the pain and nothing helps. So what does my husband do? He freaks at the end of the night because his jeans hadn't been washed and the kids hadn't been bathed. He sat in the living room and watched football all day long and he could have done these things. He knew I was in bed doped up on pain meds and he still expected me to do these things.
I mean no disrespect to my sister or anyone else who is handicapped. I'm just saying that having an invisible handicap really stinks. I would rather not be disabled at all...but if I am going to be disabled, I would rather it be apparent so that I have the help I need. Is that bad of me to say???
It's just so frustrating....thanks for letting me rant.

 
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Old 10-15-2012, 07:30 AM   #2
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Re: So frustrating !!!

No it is not bad of you. I agree 100% with everything you have said. I too am totally fed up with this invisible condition, and would much rather I had an obvious disability so I would not have to waste my time justifying myself.

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Old 10-15-2012, 07:38 AM   #3
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Re: So frustrating !!!

You are not alone having those thoughts and feelings. I also have no, none, nada, zip, zero, zilch support from anyone in my family. I don't have friends so there is not support there as well. It's a very lonely place to be. I'm pretty sure if my 8 dogs could show support that they would. :-)

I've always said that I would much rather have been told I had cancer than told Fibro. The people I've said that to have said "you don't really mean that" and I say YES I DO. With cancer you at least have an outcome..you either get better or you die BUT you have an answer. With Fibro you have no answer....I've lived with it since 2002 and can't imagine living with it another 11 years or more depending on how long I am on this earth.

It's very hard for me to be positive so please forgive the negative tone in my messages (please note that the negative tones are not directed towards you or any other poster)...that of course changes from time to time but right now I'm not in a very good space - lots of depression these last few months as well as lots of pain.

Sorry you are feeling frustrated and hope it gets better.

 
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Old 10-15-2012, 08:16 AM   #4
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Re: So frustrating !!!

hi ladies,
i am so sorry you have poor support systems. i am fortunate. mine is amazing. personally i love that no one can tell there is anything wrong with me. i don't want special treatment, just common courtesy. i dress up all fancy when i feel really composty. my doctors know the more pretties i wear the worse i feel. if i show up in jeans or shorts i'm doing good, chilling in my comfy stuff. i find if i don't look like a sack of cow flop i don't feel as much like one either. also it helps others as most of my outings are doctors or hospitals where others are sick too and need a bright yellow dress or lots of dangling silver to brighten their day. that's my job in life as a person with fibromyalgia and a bunch of other junk.
i hope you are able to find your peace as you are and create the support system that will sustain you and give you room to grow. you don't have to say you are sick to get help. you just have to mean it and know they know it. i ask in a telling tone. giggle.
peace,
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