If Someone Says To Me One More Time..

Discussion in 'Fibromyalgia Main Forum' started by lgp, Mar 30, 2009.

  1. lgp

    lgp Well-Known Member

    what you really need to do is get a little exercise. Guess what, I do exercise!! Maybe I should say them, "How about I start with leg extensions and kick my foot up your..." or

    if someone says to me one more time, what you really need to do is learn how to eliminate the stress in your life. Gee, I never thought of that...how about I start with... you?

    These are just a few of the statements I have been fielding for way too long from too many people and I am really ready to blow a gasket!! So I ask my fellow fibro sufferers, what stupid statement gets your goat? Post and vent, maybe we can all get a few laughs and a little relief from hearing what everyone else has to listen to.

    Peace--Laura
  2. TeaBisqit

    TeaBisqit Member

    You look healthy, therefore, there is nothing wrong with you.

    Oh, but you look so good.

    You can't possibly be as sick as you claim to be because you look so good.

    Really? What does sick look like? Would you like me to be bleeding out my eyes like I've got Ebola? Maybe if I threw up on your shoes that would help? I don't know, you tell me.

    Seriously, I would like to punch the next person who tells me I look so good. Yeah, it's nice that people think I still look good, but I don't see how. I'm twice the size I was when I was healthy. My body is out of shape and full of cellulite now. I'm pale as a ghost. And time has worked on my face. All the suffering I've been through. I don't look like I used to. So when they say I look good, I guess they just mean I don't look disabled?
  3. rockgor

    rockgor Well-Known Member

    My boss used to say to me, when he found me napping at my desk, for example:
    You're slipping back into your old habits.

    My response was, "Larry, I have no bad habits. I have an illness."

    Well, he couldn't very well fire me. I trained him. And he owed me money. Still
    does come to think of it.

    I thought his attitude would change when he was disabled with a brain tumor. Nope,
    not a bit. After all, that was HIS brain tumor.

    People say, "Live and Learn", but the second doesn't necessarily follow the first.


    Rock
  4. but, wanted to say- Feel free to use me as an example to those d***ed TOOLS telling you to exercise...

    I was 22 yrs old, in the *prime* of my life.. just getting myself right where I needed to be- newly married... and less than a whole year out of BOOT CAMP (uhhhhh yea- WE EXERCISED!!! lol ) and it didn't stop once home...

    The national guards still administers Physical Fitness Tests (PFT's) once a year, and weigh-ins, at *least* once a year... so, you do indeed have to stay fit- not to mention, working in nursing homes, and then the hospital, I had to be fit in my 'civillian' job as well, as being a field medic, in order to lift men sometimes over 100lbs heavier than me (god bless the fireman carry, etc!)

    And yet- right at THAT point in my life- also a 4 month newlywed... is where I get cutdown, in the blink of an eye- age 22... and I'm 31 now.

    (My sarcastic opinion- exercise was my DOWNFALL! Had I not gone into the military, and continued my *partying ways*... I wouldn't have lost my health! lol)

    I've reminded my own doctors (usually on my first, and LAST visit with those kinds of doctors)- that uhm..... I WAS IN THE MILITARY when I got SICK, and if THAT wasn't EXERCISE- wth was!?? Marines I guess?? They are a bit more vigorous (torturous)... guess 2 miles a day was not enough, or marching 5 (???) miles, marching to absolutely everywhere we went on base... etc.. NOT ENOUGH... (pffft! ended up with heat stroke, migraines, dehydration, stress reactions/fractures in the hips, knees, & ankles! 2nd degree sun poisoning, a really really nasty fire ant attack, poison ivy... conjunctivitis in the barracks, bronchitis, and that is where I developed allergies to numerous outdoor things plus sinus problems- I'd NEVER had them in my life, until I was stationed at Ft Sam Houston)

    Even telling doctors MYSELF, that I got sick as a 22 yr old combatmedic, and CNA at the hospital- I get "the look"... I don't GO to 'new' doctors anymore.... and well, no one in my family/in-laws DARE bring that shh** up to me anymore- ok- well, my MIL STILL brings up how much her water aerobics helps her 'arthritis'... from time to time. I always tell her that's fantastic, I'm happy for her.

    (A physical therapist- god bless her- finally said she wouldn't really want me in 'just any old pool'... that I would only benefit in water 97* or *slightly* higher... due to a genetic disease- I am not supposed to be in water 103* or higher, (also not so great for the MS) or I could be in very big trouble (total muscle failure, i.e. noodle arms & legs.)

    So sorry you're still hearing that crud.

    My sister & I do try to walk every chance we get, to not only help ourselves physically, but, mentally... we do the best we can (she has fibro too, as well as some other problems).

    Whoever doesn't like that..... well, I've just come to my own self-set limit of what I will, or will not 'let go', in one ear & out the other.

    Pass that limit, and yea- I like your idea of starting with leg extensions... *grin*

  5. Janalynn

    Janalynn New Member

    I'm usually extremely tactful and thoughtful before I speak, but I can see me slipping out something some day soon. I know that people are trying to help - there ARE many well-meaning people in my life. I think it's natural for people who see you suffering to offer up any ideas they may have. They just don't realize how hard it is for us to hear -when we've heard it OVER and OVER and it doesn't apply to us.

    For instance, my ex-coworker had "sore" wrists, they're not sore anymore. She called me the other day "Will you PLEASE go to my voo-doo doctor?" I laughed, Hell NO. NO voodoo for me. She then went on to say she's not voodoo, but she makes you hold weird bottles and supposedly makes you better. Oh brother.

    My boss thinks my "atlas" needs adjusting. Hmmm, naive me, never knew I had an atlas.
    Oh the list goes on and on.

    The most hurtful comment is the one my best friend said to me the other day. She, incredibly is the one person who NEVER asks about my Fibro - NEVER. I don't talk much about it.
    I mentioned that I was exhausted (had been up since the middle of the night) and that I didn't have much energy all week. She told me she had just had "that" conversation with her son,
    'the more you lay around, the more you want to lay around, You've got to get out and do things, then you'll have energy" (that's what she told her son, but the timing was um....not good to hear)

    I agree with that sometimes (for me), but I could NOT move and I don't want anyone else telling me to move when I feel that badly. She also joked "do you even GO to the grocery store anymore or does your husband always go?"......... like I don't do anything.

    Hurt feelings. Plain and simple.

    I'm starting to tell people that if they all have the 'cure' then they should write the AMA, they could probably earn a few bucks and make a few million people very happy.
  6. TeaBisqit

    TeaBisqit Member

    My friend Kathy, who has severe CFIDS, actually did kick her doctor and she got away with it. He said some kind of crap to her about it possibly being in her head and she kicked him really hard. And then he got her test results back that showed autoimmune and she has Hep C and a bunch of other things, so he actually apologized to her and she got away with kicking him! My luck, I'd get sued and go to jail or something.
  7. Empower

    Empower New Member

    I hear you, my sister tells me that all the time

    I can barely move, let alone exercise
  8. luv2float

    luv2float New Member

    What gets under my skin is: You're just the laziest person I know, or, if you get dressed and move around a bit, you'll feel better.

    Oh yea, and it seems that everyone you talk to knows somebody else with fibro and they say "well she works".

    I could go on and on. But, my New Year's resolution was to STOP EXPLAINING MYSELF! They'll never get this DD no matter what you say. NO MORE EXCUSES! It's helped with my stress a lot.
  9. AuntTammie

    AuntTammie New Member

    I have a T-shirt that says,
    " My disabling chronic illness is more real than your imaginary medical expertise."

    I have another one that says,
    "This disease must do wonders for my appearance. Everyone keeps telling me how good I look."

    And a third one that says,
    (on the front), "But you don't look sick."
    (and on the back), "That's just the look I was going for."

    I got them all for my birthday; they are from another chronic illness site. I know we are not supposed to mention those on here, but it is a pretty helpful site, and has the store, too. It's called the same thing as the front of the third shirt I mentioned, with a dot com at the end.
  10. bobbycat

    bobbycat New Member

    Her dad is sick right now and she continues to talk on how well he handles his illness, rarely complains, Etc. And how much she is like him. And that they are both Sooo strong. She brings this up all the time expecially when she wants me to come down to a function. I do not complain to her much. What happens is she will call and ask me and I will say "oh my mind is not working great today or I am tired or just having a bad day and then I change the subject. Mostly I just listen to what is going on in her life. I get sick of that comment it makes me angry as I know she thinks I should be getting up and doing a dance. Other then the people that have this others just don't get it and you don't even have to talk about it as they will dig you just because you can't go anywhere. And yes I have heard all of the comments above. A hammer to one of their toes might be sufficent to get the point across then you could say Oh but I thought you never complained. However, next time she says something I am going to say well people handle situations different and until you walk in their shoes you could not possibly know how you would handle it as with chronic illness it affects all people differently and with varying degrees.
  11. satchya

    satchya New Member

    I just had extended family in town this weekend to stay with us on their way somewhere else. My cousin and his wife and their three kids. My cousin is awesome, we were always very close growing up and now only get to see each other every two or three years, so that was cool. But his wife is a crazy (and i mean really diagnosed by a professional) C R A Z Y! She was originally diagnosed as severely bipolar and anorexic a couple of years ago, but decided that she knew better and fired her doctor and got a "nutritionist." She believes she has cured her mental illness by eating "whole foods and supplements".

    This woman weighs maybe 95 pounds soaking wet. She wouldn't eat any of the food in our house (which was damn yummy, and not unhealthy). She had to eat only her own special food that she'd brought in a cooler. I barely saw her eat five mouthfuls of food the whole weekend. She told her daughters they couldn't have a piece of my daughter's birthday cake. My cousin snuck downstairs in the morning and ate two big slabs of my homemade banana chocolate pecan bread because he was "afraid" to eat it in front of her, he said it was really good ;) LOL

    She went on and on and on and on and on about how I would be all better if only I went to her nutritionist and ate whole foods and supplements. I tried to be a good hostess and change the subject so many times! She was completely oblivious. I told her about how I spend hours and hours a week at the gym, and that helps, but that nothing will "cure" what's wrong with me, it is a lifelong chronic condition. And she had the GALL to say, "Well, that's sad that you've given up, it doesn't have to be that way."

    Ugh, I'm getting grumpy again just thinking about it. She spent the whole weekend yelling at her kids to be quiet and screaming at her husband about how overwhelmed she was (never mind that he did everything with the kids, packed their entire car, hauled in and out the cooler, etc., etc). Oy.

    Their kids are dolls, though, and had a great time visiting with my kids. (Looking for the bright spot!)
  12. Rockismom

    Rockismom New Member

    If you're thinking about filing for disability then you'd better start looking bad because if "they" see you "they" would never believe you are sick.

    Uh...Thanks?

  13. Pebbles730

    Pebbles730 New Member

    My soon to be ex pain management doctor told me that pain medication won't help my pain. Wow he must have graduated from Harvard huh? Why would medicine made to help for pain, actually help it?
    Then told me he really doesn't want to say it's Fibro, must be something else. So I said it was my back as he was suggesting, could I go for physical therapy. He said no, not really because they don't know how to treat the affected area if it's Fibro... - hmmm didn't he just say it wasn't Fibro?
    Then goes on to tell me he thinks the best thing for me is acupuncture. (Which he convienently does right there in his office for 100$ a pop - not covered by insurance) So I said to him...let me get this straight. I cannot do physical therapy because you cannot diagnose me with fibro...but you want to stick needles in me in the places that you don't know are affected? Can you say QUACK!!
    [This Message was Edited on 04/01/2009]
  14. stagename

    stagename New Member

    'the more you lay around, the more you want to lay around, You've got to get out and do things, then you'll have energy"

    'but my SIL/co-worker/friend of a friend has FM and she works full-time'

    'you look good today. are you getting better?'

    'why are you limping? did you hurt your foot?' (this from my own MOTHER)

    'are you still in bed?' (from DH)

    I wish I could stay in bed all day (MIL)

    and the rebound is just as bad. Try to go out and do something productive, or have a hobby or part time job, and everyone thinks if you're well enough to do that, then why is the house a mess, why can't you clean the tub yourself....


    [This Message was Edited on 04/01/2009]
  15. DemonFairy

    DemonFairy New Member

    It covers just about everything I've had to deal with lately, except for the "drug seeking" accusation. Hey, just because my brothers married women who have drug/alcohol problems, that doesn't make ME a drug addict. Not once has anyone ever seen me "stoned", yet every single time they've seen me in the past 3.5 years (since my herniated disk), I've been on pain meds. I think that's a pretty good track record of healthy medication usage. My pain meds don't get me high, ever. They either relieve my pain (sometimes) or they make me nauseous if the dosage is too high - there is no in between where I'm "high". And, I was accused of that just DAYS after my s-i-l (she's married to the brother who accused me of drug seeking) was telling me how she was now smoking pot. She's also asked us for extra meds when she ran out (we've NEVER run out before our next appointment), and when she fell off the wagon, my brother insisted that she come to MY house to dry out. Yet, I'M the problem "pill popper"? It's all just so stunning.

    Oh yeah, and we also got an email supposedly quoting the Mayo Clinic about the best thing for FM being exercise, blah, blah, blah. We looked up the quote - it was from a wiki on the BBC (from 1999!), written by Mikey the Humming Mouse, who declares as his specialties "Sea Monkeys, Felines, Artificial Food Products, Funky Gadgets, and Really Incredibly Nasty Diseases." Clearly, the dude is an expert on Fibromyalgia...and brine shrimp. :) The Mayo Clinic's Fibromyalgia section is actually quite reasonable, saying that exercise may help some people. I wish they'd actually read The Mayo Clinic's site, especially this part, "Besides dealing with the pain and fatigue of fibromyalgia, you may also have to deal with the frustration of having a condition that's often misunderstood. In addition to educating yourself about fibromyalgia, you may find it helpful to provide your family, friends and co-workers with information." But, honestly, no matter how hard I've tried to "educate" my family, I still end up hearing the same stupid things over and over again.

    Obviously, they don't care to be educated about it. I'd even sent them a link to this board, where they could read what real people with FM have to say, but I'm sure they didn't bother. After all, they KNOW that exercise will fix me. I can barely get out of bed everyday, but yeah, exercise is going to fix me. Hey, if they wanted to really help, they do whatever they could to relieve my stress...so, either asking what they can do to help or frankly, just shutting their uninformed traps would be nice.
  16. "Oh fibromyalgia thats JUST a muscle pain" this is from a PT

    "Oh fibro, I have that too and so does my mother" from my sis in law who no way can have it, all she does is shop nonstop, works 40 hrs, runs, etc.

    "Your too negative, you have to think positive" AHHHHHHHHHHH!

    And if I hear "get in a heated pool and exercise " one more time! The heat feels good but the exercise they put me through OMG!
  17. satchya

    satchya New Member

    I read this and just wanted to share my thoughts/experience, maybe it will help

    you wrote ""Oh fibro, I have that too and so does my mother" from my sis in law who no way can have it, all she does is shop nonstop, works 40 hrs, runs, etc."

    I believe you that you don't think they could possibly have fibro, based on what you've experiecned of them, and it's certainly possible they've self-diagnosed, etc., but really you can't know that about them for sure.

    I was diagnosed in October by one of the best Rheumatologists in the country. You would not necessarily know I have fibromyalgia by looking at my life from the outside. I spend a lot of time at the gym, I chase after three young children (including a three year old), cook homemade dinners every night, pack lunches, keep a spotless house, "shop nonstop" lol, etc. I'm not saying that to brag, because God knows how grateful I am to be able to do all of these things. But no one can see the physical pain I am in 24/7, the fatigue, etc. I am only bedridden a few times a year, for about a week at a time. But I fight against pain, fatigue, muscle spasms, insomnia, etc., year round.

    I am a very "type A" personality, a perfectionist, and a people pleaser. DH says I'm going to kill myself at this rate, and wants me to consider going into counseling to figure out why I am in such denial about having this chronic condition and the effect it has on my life.

    Just like someone without fibro can't understand what we go through, even someone WITH fibro can't always know what the experience of another fibromyalgia sufferer should "look like."

    I know you meant well, and you're probably right about your SIL and her mother. Just wanted to share because it kind of hurt my feelings when I read that (not your fault, just my reaction).
  18. NIELK

    NIELK Member

    All these thoughtless and uninformed remarks used to bother me a lot
    Especially since we feel so sick, we are very emotionally vulnerable and it's very frustrating
    not being understood. But, then I realized that I'm only hurting myself. Because the more worked up I got, the sicker I got. It's very hard to ignore these comments and especially the ignorance, but that's what I try to do. The problem is that because of that, I've noticed that I stay away from people. I don't even talk on the phone much, So I feel pretty isolated. But, I prefer that then being put down & hurt. I have to take care of my mental health as much as my physical health. I'm lucky that I have a very supportive husband ,three loving children & 4 very cute grandchildren. Most importantly, I have my all loving God!
  19. stschn

    stschn New Member

    Are for the most part very understanding and my husband is the worlds best. Even so I've heard from one son "well after 21 years you must be used to it now", from another "If you go to my church our minister could cure you by the laying on of his hands ". Oh and from the woman at the library on a day when I was able to go (in my wheel chair) I made the mistake of responding to her question of how I was doing by saying "todays a pretty good day but I'll pay for it tomorrow." She said you should think positively. I simple said "gee I did that for 20 years and it just doesn't work.
  20. whoachief

    whoachief New Member

    It is so frustrating for people to say those kind of things. They have NO IDEA! Oh how I would love to be able to exercise like a "normal" person and not pay for it for weeks or months. Hang in there!