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Posted 1/17/2009 12:18 PM (GMT 0)
I know people mean well but all I hear from my family is eat this eat that , stretch this , and why not stand on your head while you are at it.  I know they mean well but they think I should be back to 100 percent if I do and well im not so I guess that just makes me a big fat failure.  I cant even do the darn excersizes without being in agony for days after, I dont even have the energy to go to the toilet except when Im desperate.  Im tired of being treated like its just a cough and I must be doing something wrong becuase I havent shaken it off.  I know the mean well but they make it so much worse. Do you ever feel like you just want to tell someone they should be in your shoes for a day. or to put a sock in it .   Sorry for the winge but I just hurt myself in the shower trying to stretch , and im angry because I should of known better from past experience.   ahhh it hurts....          sue2z mad mad
Posted 1/17/2009 12:36 PM (GMT 0)
Ohh Sue, I know exactly what you are saying... people do act like we can just shake this off and everything magicly will get better. And yes, I do feel like saying "take a walk in my shoes!" People are ignorant (I don't mean your family - just people in general that haven't experienced chronic pain!!!!!!!!) I'm sorry you hurt yourself in the shower... things have been rough with me lately as well mad Ughhhhh!

Hope the rest of your day goes well, Sue.

xoxo

________________________________________________

21 years old

Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Posted 1/17/2009 3:05 PM (GMT 0)
I've found that groaning helps. It helps me when I'm trying to get up off the floor or reach something. Family hears the groan and knows I''m hurting. When all else fails I just break down and have a good cry. That works, too. Makes me feel better and lets them know this isn't a walk in the park. They are in denial because they want you to go back to being the productive busy lady they know. Fibro ages us and they don't want to see that.
Posted 1/17/2009 3:10 PM (GMT 0)
It seems everyone is wired to try to help you fix it.

Getting to the point of understanding myself that I can't fix it, only manage it, has helped me to just roll with the comments.

Also, looking at a person's intent behind their words helps me a great deal: most of the time, folks are only intending to be helpful with their "words of wisdom". They are generally not intending to frustrate us, or tick us off, or add more stress to our already damaged ego.

Depending upon who it is (and as a pastor's wife, I get ALOT of unsolicited advice!!) , I usually just smile and say thanks, I'll have to look into that.

I totally agree - it gets old.
Posted 1/17/2009 3:12 PM (GMT 0)
I am lucky in that my family in general understands. My mom and dad both have health issues, and my dad is disabled vet, so they are really understanding. However it is my kids and hubby that push me to keep going. Sometimes its frustrating, but then other times I know they mean well. They saw me at my worst though when I couldn't get out of bed for days because of my bladder disease. And of course then there was my going through four surgeries in a years time. So they can be very understanding. Although when I have a few good days in a row they tend to forget and think I am getting better so when I have a bad day or two, they get disappointed that I can't do what I did two days ago.
Posted 1/17/2009 6:07 PM (GMT 0)

My whole family has suggestions. My mom tells me that my Rheumatologist has me on too many medications and that I should start going off of them myself and not tell him. My oldest daughter thinks I should be able to get well with only Vitamins like her MIL, and my hubby thinks if I try doing more I'll feel better!

I've gotten to where I listen and blow it off. If I didn't I would go crazy!

Hugs!!!  Margie

Posted 1/17/2009 6:17 PM (GMT 0)
I'm one of the lucky ones, too.  My family does understand as much as they can and, if anything, I have to insist on doing things.  They don't want me to do much of anything for fear it will make me worse.  I know I have to keep moving so I sometimes have to insist on doing things.

 

Sherrine

Posted 1/17/2009 7:33 PM (GMT 0)
I feel the same frustration. My family understands why I am one way one day and different another. But as for work, I work with about 20 other people and they all knew how "gung ho" I was b/4 fibro paid me a visit. I ended up gaining a considerable amount of weight over a 3 yr period. It has Not been easy trying to explain a condition I am still learning everything about. Like just yesterday I called in sick and my boss said hope you feel better by monday. I was thinking to myself, maybe he meant I'll be feeling "good" enough to come in. Lately my hip is real painful, pain meds aren't quite cutting this one and I limp real bad. So, idiots at work think I hurt my leg. Mind you I have explained to everyone there and passed out pamphlets on fibro. I guess the frustration I feel when I am in pain(without any obvious limps) or I am feeling just the all over achy/nauseous symptoms of fibro, they don't SEE it like I am FEELING it.

I watched a gal bound into our lunch room the other day when I was laying on the couch resting(so I can get through another 2 hours of work til another break) and she was wizzin' around and ran out to her car (she had her workout clothes on)and I knew she was on her way to the gym. Thank goodness I had my sunglasses on because I began to tear up and I cried a bit because I was so jealous of the way she moved. And here I lay, because I can barely make it through the day.

Lori
Posted 1/17/2009 10:03 PM (GMT 0)
My poor coworkers don't know what to think. One week I'm flying out the door in workout clothes with a bounce in my step; another week, I can't get out of a chair or hold my arm up to write on the board. One day I'm limping, the next day, I have a stiff neck but the leg is fine. Some days I can barely put together a proper sentence, other days, I'm fine. It can even change in a few hours.

One of my coworkers also has fibro. It helps a lot because we know someone understands. We see each other having a bad day and we help each other out. We feel more comfortable asking each other for help AND we feel more comfortable saying no to each other on bad days.
Posted 1/18/2009 12:47 AM (GMT 0)
So glad that others feel the same and goe through the same feelings with well meaning people, I was starting to think I must be a nasty person or something.

Posted 1/18/2009 1:19 AM (GMT 0)
I tried not to make a big deal out of fatigue/ feeling like flu/ brain fog at work. But, especially in the last couple of months that I worked, I tried to communicate how difficult it was and that i just didn't feel well .... I guess it's like, to be sick, you have to LOOK sick. I guess I didn't LOOK sick enough.
Posted 1/18/2009 2:17 AM (GMT 0)
What helps me a little is using the electric wheel chair. People assume paralysis when they see someone in a chair and they will pity them (which of course is not right).

However, friends who have acute cases of arthritis and whom only use canes and walkers receive very little compassion from others.

My children do a lot for me and for that I am grateful. They had to since I was a single parent.

My daughter is blind and she helps cook and clean around our home for me. for a while she was acutely ill but is much better thank goodness. Having two sick people in one household was difficult.

I seem to be rambling and it is due to having a cold. so I will sign off.

Donnaeil
Posted 1/18/2009 6:40 AM (GMT 0)

I just got an book on diet and stretching that cured the author from fibromyalgia from my mother she is adamant it will just disappear if I eat the right things, if so none of us would be suffering, this is exactly what I mean.  I got I little testy.  sue2z

Posted 1/18/2009 6:43 AM (GMT 0)
To Donaiel, got the name wrong didnt I, Im sorry that your daughter was unwell , glad she is better and you found a way to make it work, when I said to my doc I could see a day I would need a cane,  he laughed.. sue2z

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