Why is it just because another person cannot feel what you feel, then they can't understand that your sick. I don't get the inconsideracy. But I'm tired of people being so inconsiderate toward me. I have family members who always are having me to do this or that for them all the time, drag me into the stress they have, make their problem my problem more or less, and I do whatever I can for them, but I can't help but think they have no consideration over what I am going through, and my son tells me I am more or less just a baby and that I need to learn to toughen it out. My daughter always calling me lazy. One day I got upset and jumped on her for that and cried and so she hasn't said it since. I've heard the little saying oh there are people in this world that have it alot worse than you do. Uh and how is that supposed to make you feel any better? Her dad is really the one making me upset. He's like well I'd hate to go to the doctor and see what all they'd tell me was wrong with me, and he's like you don't think I'm tired, yet he runs around every single day from daylight to dark, and I can't get out much ever cause I'm so crippled with fatigue, sorry, I mean I can be understanding to that if he was showing signs of being tired like that, but he's able to do whatever he wants, and half the time I can't even stay out of bed. Just makes me so mad. He's had surgery on his feet before and has chronic pain from it, and I get that, but that doesn't mean he's suffering from any chronic disease which might I add, he's not. He's just being a butt to me. And I told him I've been feeling bad all day and I didn't feel like getting out, I just wanted him to pick up toilet paper at the store tonight, but no, I need to get off of my rearend and go get it myself. God he's a jerk!!!!!!! I told him I thought I was dehydrated and my potassium was low and he was like oh there aint nothing wrong with you, your doctor didn't tell you that. So I was like well the papers are right here that show it if you need to see them you *****. EWWWWWWWWWWWWWWWWWWWWWWW! There isn't a single person I know that gets this.
The following user gives a hug of support to neveragain444: blueheartlady (01-31-2011)
(((Gentle Hugs))). It's so hard when people don't understand or they DON'T WANT TO understand. I think it's even worse when someone tries to compare illness' against a person with Fibro because there is no comparison...not even on a good day
I hope you family eases up on you because the stress alone causes Fibro flare-ups and I'm sorry that your husband treats you poorly because of your illness.
Hopefully one day he and your children will understand.
When I first started complaining about neck and shoulder pains, one of the many doctors I've seen, just started comparing my pain to his- like: "Oh If I don't exercise enough I get that too.. don't worry". So it took me like 4 years to get diagnosed. It was the knee pain that was too confusing for them, since they couldn't relate to it. And no matter how many times I kept telling them that I DO EXERCISE they just didn't listen. I was always tired too, but I figured, cause I'm depressed it's probably normal to feel this way, so I never mentioned about it.
My mom tells me I'm lazy like every other day. It's all because she knows I can still exercise twice-three times a week. But I HAVE TO. When I get home from the gym I usually just lie down for the rest of the day due to fatigue.
I should continue my studies in some school of my choice, but I dont know how I'm going to keep up. Will I have energy to exercise then... Will I pass all the exams...
when i was a child there was a saying. sticks and stone can break my bones but words can never hurt me. well, we all know that isn't exactly true. words can and do hurt. however, you have the power to say to yourself, i forgive you for you do not comprehend and then say simply to the person, i forgive you for your harsh words.
i have found by using this technique that i am at peace. it usually shuts up the mouth of the person being harsh or insensitive.
only you decide what chaos you will allow in your life. you have the right to ask a stressful person, even your own kid or parent, to back off.
i sense 444 that your children are only following their fathers lead. you and only you can break that cycle. one of my favorites is, you are entitled to your opinion, just keep it to yourself please.
my heart goes out to you both. i cannot imgaine still being in a space of being with people who act like that. i was and it was not healthful. it was up to me to change the situation so i did. can't change others, just self.
sending hugs and warm loving thoughts to remind you just how precious you are.
peace,
bluelakelady
ps. all humans are worthy of compassion, consideration, and kindness, even the poopie heads.
Neveragain, when my mom had cancer the nurses said she had the nice gene, something common to cancer patients, the nice, servant's gene. I think you have it, too, but I think you realize that sometimes you can't afford it--your cup is empty and they have all drunk it completely dry. Yet they still keep coming.
It takes a lot of guts to fight your way back from severe pain each day, especially when you're looking through a haze of fatigue that no words can describe--madeofglass knows what you go through, but not your family. You are right about that. No one understands unless they truly have something like it. No one who is injured and then heals understands. Only people who have it really understand the bravery you show when every day you choose life rather than a legacy that would come from ending it all.
I knew a man who's dad was disabled due to a work injury, causing him to have to quit middle school and work for the family. His injured dad quickly became a man on drugs who groaned through the night and day. Everyone had to do dad's chores and dad's work. When that man grew up and had his own wife and family he would tolerate not one ounce of whining. The hatred he showed for weakness was legend. He would sit at dinner tables mocking any girl who had gained weight. He would mock his wife who would get up at 5 to cook a full meal for him and his sons before golf because she wasn't cheerful--it didn't matter she was bleeding nonstop for weeks and was anemic. He'd make a huge deal of what a pessimist she was. Fix yourself was his motto.
That man raised sons who treated weakness the same. When he was in his 70's he hit up against a horrible illness that tormented him for over five years. In the end his in-laws were having to help him in the bathroom, lift him everywhere, and he was heavily overweight--from a man of striking form to something pathetic in pain in just a few years of illness. He spoke of suicide regularly. Other than his wife, his own kids would have nothing to do with him because he was weak and their makeup just didn't allow for it. Food was the only comfort he had left--the only pleasure he could still feel--and he died by choking on food.
Your family doesn't understand neveragain, yet. It rains and shines on everyone and if they have health, their only response to it ought to be a great appreciation, not a taunting of those whose rain just happens to be bad health. They just don't understand yet, kiddo. Their rain might be living with someone who has bad health, but it is a rain I hope they will embrace. Otherwise they set themselves up for some horrible consequences. You can't change them, you can't make them understand, you can only hope for their sakes that they will one day because no one can escape the fact that it will rain and shine on everyone. Their quarrel is not with you; it is, in my opinion, with God, just like it was for that man. If he had accepted the rain in his life--his dad's injury--then he would have become a loving man and been loved in the end more than he was a rejecting man and was rejected in the end.
If I were there, I'd run to the store for you. So would half a dozen of other people on this site. We do understand and hope for your best. Take care.
Last edited by baserockermom; 04-09-2010 at 06:57 AM.
I got the same stuff from my family. THEY DONT know what you feel inside, unless they have it. I look fine on the outside as we all do.
I tried NICELYYYYYYYYYYYY to explain how I feel and do the best I can to help them out also., I hear all the family stuff... ( exactly what you wrote) basically...
SO here ya go:
PRINT OUT FROM THIS BOARD- SHOWWWWWWWWWW them there are others like you suffering.. your NOT the only one, THIS IS REAL PAINNNNNN, it hinders us, we try very hard to keep positive, but it hurts,
ask your family to let someone beat the crap out of them!!!! , then ask them to FUNCTION NORMAL , like nothing happened, ( even though they have aches and pains all over).....
( im just kidding, but thats how it feels,,, lets see how they FUNCTION and no ones gives a crap.. HOW WOULD THEY FEEL!!
PRINT OUT FIBRO INFORMation: showwwwww THEM WHAT IS FIBRO, wide spread pain..
DAH. WIDESPREAD pain,, ASK THEM WHAT DO YOU THINK THIS MEANS?
IT MEANS: wide spread pain!!!! all the timeeeeeeee
SHOW THEM COMMERICALS from TV!!!
I was so tired of being nice and trying so nice to make everyone understand my pain, now its, HEY! I cant watch the grandkids every other day, I AM IN PAIN, and if they snear like "oh mom, get over it, ........... well........ GET A BABYSITTER AND PAY them hundreds $$ a month, because I NEED TO TAKE CARE OF MYSELF!
I dont mean to be so harse, but sometimes ya gotta get tough, and drop a ton of bricks on their heads.
HEY, I HURT, I CANT do what I USE TOO, SO SHOWWWWWWWWWW SOME RESPECT!!!!!
I hurt like you, I DO understand, ..tell em you cancer, and WOWWWWWWWW, they will understand, and help you,................ and sad isnt it...fibro.. doesnt mean CRAP to anyone who doesnt have it...
give em prints, tell them to read the info.. ONE TIME... ( time to stop explaining to everyone all the time ), if they start saying your lazy, or tough it out,blah blah,,, tell them: GO READ THE PAPERWORK I GAVE YOU, maybe your get it thru your head this time..
The one that really makes me sick, you should push yourself to do what you need to do, so it doesn't really matter if I don't feel like pushing myself because I feel bad, it's like I just don't have that right to be sick and wanna lay around on a bad day. And one of those family members I'm refering to is also sick, she has arthritis, always tired & hurting, but I don't know. It just bothers me being treated like this.
I don't think this is just fibromyalgia anymore. I have had chronic fatigue so bad like 13 years now. The pain UHH but it's nothing to this. At least I can take pain meds for that. I think it's autoimmune. A rhemy told me years ago he thought I had early stages of Lupus, my PCP said FMS so FMS we stuck with and I haven't had treatment but things like Darvocet, Ibuprofen, muscle relaxants here and there. My ANA's are positive high and maybe unless my immune system is supressed with meds to slow it down, maybe I don't have a chance of feeling better. Another also told me I had autoimmune dysfunction, wow this issue just kind of has been ignored. I don't think my Fibromyalgia diagnosis honestly was a helpful thing here.
I watched a tv show recently and it was showing some of these women on there with fibromyalgia, but they also had autoimmune diseases like RA and such, one lady was even a psychologist, couldn't function anymore. One end to the other end of their homes was nothing but chaos, such a mess, clothes everywhere, I don't even know how on your worst day, your home could ever get that bad, but this was horrible. So sad. They were so exhausted, hurting all the time, wanted to sleep all the time, kind of went dysfunctional.
100% reminded me of my own life except my home never quite gets in that bad of a mess.
neveragain, what ever it is, it is real. I can remember the last time I got to where you are. I just couldn't face another weekend in a house where I was supposed to support everyone else's goals, answer the "what's for dinner" question, and be expected to take care of my sick relatives and a hundred extended family obligations that fell to me because I had the least amount of kids (duh... I wanted a ton of kids but felt it would be cruel, given my health, to have more; translated by family... I have time and money for their's). I had been to two doctors that week and still no relief for the pain and the overwhelming fatigue. I just drove to the hospital. When my better half called to see when I'd be home, I just told him point blank that I wasn't up to home. A couple of months after that hospital visit (where we learned I had a kidney stone, a cyst on my ovary, and a hardened gall bladder with a boatload of stones), I went to a hotel, with my husband's well wishes, and just rested and dealt with my feelings about being sick and the toll it had taken. It took three days before I even felt close to feeling up to home again.
Don't quit going to the doctors. Get second and third opinions, and as bluelakelady says... stand between the doctor and the door until you get answers. Look at the first entry on the medical records thread and get your medical records and organize them. "Pushing yourself" can do real harm in some circumstances. I'm guessing you are right and you don't just have FM. FM, myofascial pain, chronic fatigue, lupus scares -- this site says FM, but a lot of us have a lot of this stuff in common. Go to a hotel room if you have to. But give yourself some room.
neveragain, what ever it is, it is real. I can remember the last time I got to where you are. I just couldn't face another weekend in a house where I was supposed to support everyone else's goals, answer the "what's for dinner" question,
DO all fibro people, have a bit of the same personality? Like caring for others, putting others before themselves, hard time saying no.. feeling guilty when you say no....i see a pattern. hmmm
..whats for dinner? I always thought that was MY JOB, even when I felt pain that I couldnt move, I had to make sure all had dinner, or I felt so GUILTY inside. ...
NOW.... I am learning its NOT my job to make sure dinner is ready, its not my job to make others happy ........ if I dont feel liking eating and need a nap. well then, hey make your own dinner.... sound mean? NO, im taking care of myself,
and be expected to take care of my sick relatives and a hundred extended family obligations that fell to me because I had the least amount of kids (duh... I wanted a ton of kids but felt it would be cruel, given my health, to have more; translated by family... I have time and money for their's). I had been to two doctors that week and still no relief for the pain and the overwhelming fatigue. I just drove to the hospital. When my better half called to see when I'd be home, I just told him point blank that I wasn't up to home. A couple of months after that hospital visit (where we learned I had a kidney stone, a cyst on my ovary, and a hardened gall bladder with a boatload of stones), I went to a hotel, with my husband's well wishes, and just rested and dealt with my feelings about being sick and the toll it had taken. It took three days before I even felt close to feeling up to home again.
Don't quit going to the doctors. Get second and third opinions, and as bluelakelady says... stand between the doctor and the door until you get answers. Look at the first entry on the medical records thread and get your medical records and organize them. "Pushing yourself" can do real harm in some circumstances. I'm guessing you are right and you don't just have FM. FM, myofascial pain, chronic fatigue, lupus scares -- this site says FM, but a lot of us have a lot of this stuff in common. Go to a hotel room if you have to. But give yourself some room.
I can't believe how many of you have been through this same thing. I'm sorry you have.
It is hard to say no, when someone asks you for a favor. I usually can't say no, no matter how bad I feel. The things with my family go way beyond that. It's like someone drinks and drives and gets put in jail and asks you to bail them out, well you do. Well then they go do the exact same thing again, and asks you again, can you bail me out? Now your thinking well maybe this time they learned a lesson. But then it happens over again and again and again. And you try to tell them, just quit drinking and driving. You can drink, but don't drive. But it does no good whatsover. My family.
I wouldn't quit going to my doctors. I really depend on their help. They are the only ones I know that can be understanding. I am going to have the autoimmune issue re-checked when I go back. Or if my mouth breaks out with it's usual blisters which should be soon, I'm just going to go to the lab here and pay for the testing myself and find out if my ANA gets really high with that flare.
I wonder if Fibromyalgia could be a form of an autoimmune disorder. How does your fibromyalgia affect you? do you flare and then get better for a while, then flare up again? I stay sick 24-7 so I just kind of wonder how it is with other people with the condition. I do get flares where things just become extreme and I can't function at all and then I go back to where I can function a little, maybe go somewhere once in a blue moon, or make it to a trip at the store, which is never without effort though. It's really just a good day for me when I can just get the laundry done or the dishes. Or just stay out of bed.
I was exercising too and I haven't been quite awhile but I still pay that monthly bill and can't get myself to go. It doesn't mean your lazy just because you don't push yourself to do it.
Last edited by neveragain444; 04-09-2010 at 03:40 PM.
Yeah, Tam, I've a history of that stuff. I really get off on helping others, so usually I'm the one who hates me the most when I can't.
neveragain, don't even go there on the exercise thing. Can't tell you how many times I've started (big, big, push--as your family would say--given I had to unglue my eyes just to get started--again, they can't understand unless the glue is in their eyes). Last year I was fortunate. I worked out and walked for six months before my injury/surgery. 15 weeks I've been paying this time.
Do you mean like literally... you have to bail them out of jail? Autoimmune and stress--I'd believe those are contributors, but sometimes things just come out of the blue. Fine one day, sunk the next.
Last edited by baserockermom; 04-09-2010 at 04:22 PM.
Literally no, it's just an example. My nephew drinks and drives and he's ripped 3 transmissions out of my mom's vehicles. Well I paid to get her transmission replaced/fixed, and she lets him drive again and tear it up. And then she buys a truck, and um same thing happens. I recently gave her my car while it's leaking water and needs to go in the garage so my motor doesn't blow up.. so she doesn't have to walk to work. Haha. My family. They stress me out to no end. Literally. I love them but they drive me nuts. They do have a tendancy to make me suffer their ignorance. LOL. And there's things they can do for themselves but it's put on me, I sware I just don't feel like they care how I feel at all. I don't feel like anyone does, honestly. And I've had to deal with alot of issues with my sister's kids. Sometimes I feel like I'm mom instead of her. She lives right beside of them (they stay with mawmaw) and I am the one having to do this and that and that and that. I don't think it's so much they ask of me that bothers me, it's just like I am not able to keep up and sometimes, the asking is just more than I feel like doing. I have been through so much stress with my family, bad things going on, really bad. And I do whatever I can when they ask, but I think they need to try helping themselves every once in awhile. I give advice worth taking but it's like talking to a darn dead rat..
neveragain, I can relate. As a matter of fact, I came on this board because I didn't know what to do with family--I had started cleaning my mother-in-law's house every week to help her out. I literally could not move when I got home--all the pain set up like cement in the hour-long ride home. I was on here begging everyone to help me figure a way out of it without losing face, without once again exposing my health problems and making myself out to be a whiner. In the same way, I had an aunt that got invited to all my brothers' and sister's kids weddings (there are 15 kids by then; 2 by me), and every time I am expected to put up with a woman I don't enjoy at all and it was already enough that she visited on her way to FL--the weddings about did in the whole family and we had been quite close. Flare or not, rough marriage at times or not, it just didn't matter. I quit the cleaning and I still haven't even gotten to where I even visit my mother-in-law much--it just was so hard and so taken for granted. And I am ashamed to say that, as of this month, I just haven't answered the aunt's emails or phone calls. I'm sick as anything right now and no boundary I have ever tried to set with her has worked. So I relate on the family thing. I'd be near insane if I'd doled out so much money for cars so they could be ruined. I think sometimes family just has no idea how much being sick costs--they see a big house and they think money, money. I loved when the aunt was down for one visit and both cars broke down in the city with her in them. That was really fun in a sad, sick kind of way.
I can top that, I was ready to take my daughter and move out of the city far enough that I know everyone would quit asking me for favors and sticking me in their stressful problems (and I am a serious hater of stress) so that way I'd be left alone, because none of them would ever drive that far to see me. But what am I going to do, seal myself away from everything and everyone including my family, I don't think it would be the answer. It's bad enough I'm not talking to my friends much anymore. So I had a talk with my daughters dad. I was like did you ever once want to kill yourself from being so tired. He said no. I asked him if I had cancer, would he lay off, and he said he would. So I was like then why can't you with this disease? He then said Fibromyalgia is a made up diagnosis and I got him to admit that he didn't think there was anything really wrong with me. Even though I've been diagnosed with Lupus before, he said if I can get it re-diagnosed, and put on paper to prove it, that he will lay off of me. So it's not enough I have the symptoms, I have to prove to him I have the disease. He also admitted he just wants me doing things and gives me a hard time about it because he is actually too lazy to do it, then he started laughing. I wanted to smack the hell out of him.
my thought on this after having had Fibro for nearly 8 years is that if possible people with fibro should live alone, with no strings attached whatsoever. I don't mean that we shouldn't have a life at all, no. But wouldn't it be much better for all of us to live by ourselves, quietly, with no witnesses to see how bad you are feeling, no one to nag to (what for anyway?). Ideally, have a nice job and be financially independent, and then some real good friends that you can see only whenever you can, a nice easy apartment, no obligations. Loneliness is better than having people around you (like husbands, in-laws, etc) who will doubt you, and loneliness is better sometimes than making this gigantic efforts to please people around you, because the truth also is that our condition is not so fun to others !!
tutti fruti, I totally agree this mess is no fun to live with. There is other stuff in life that is also no fun to live with, like a man who has to see on paper his wife's illness instead of believing her. I do think it does a world of good to get a break and give a break (i.e., go to a hotel for a few days).
Personally, I hate myself for having so little guts these days, and some days I fear my husband's acceptance will one day enable to me to be an invalid. There is a fine line between caring enough about someone to push them and caring enough to accept them and a fine line between resting and giving up--in the middle is where all the fights happen--fights with others and fights with ourselves.
Driving to that hospital instead of home that weekend and the trip to the hotel later did a lot for us, partly because I had the reports to show I had reasons for feeling lousy, that I wasn't "crazy" for being nauseas (now I don't need reports--then, I did). The hotel just gave us both a needed break from something that was just plain hard to accept. That's why I say, neveragain, that they just don't understand YET. Although, I'm not sure extended family will ever understand anything. We've fantasized about moving like you. I don't know about you, but I just stink at setting boundaries. It's either all in or all out.
No, it's not something you should think would be a dream come true. Living by yourself, your illness, your going to give in to it so bad, becoming anti-social with the rest of the world, even your family, I've already been there, did it like for 2 years, back at the beginning, and my daughter & son stayed with dad after our divorce. But your life will become your hell. You will lose any fight you have in you. There's nothing you have to do but lay in bed, and that is all you'll end up doing. And I think it'll make you feel worse, not better. I think that we need to push ourselves, not overdoing it, but to an extent, at least attempting to try to live a normal life. A person needs to be moving around or getting exercise, if you don't, your body is just going to wither away. Don't put yourself in that situation where your illness is allowed to take over your body and your life. It is not a good thing.
I agree tutti. fibro people should live alone, not to the point of isolation though, this way you can LIVE YOUR life at YOUR pace, and not have to answer to others! I am lucky, I have an understanding man, BUTTTTTTT, when he wants to go out to dinner, or somewhere,,, and I dont feel up to it, he doesnt complain and says ok .. BUT then I feel GUILTY that I am holding him back, ....and the cycle begins again...
Did it with my family, now doing it again.. stress and guilt builds up inside and makes it worse.. How many times I need to say NO, and I dont... """ sad""" because I care and want to help out family..
its very hard being selfish for myself, when I never did that before,, im slowingggggggg learning to say NO, and boy do I get the crap from my family... HMMM whats up my butt.....
live alone, no problems, go where you want to go, cook when YOU want, single people can have a social life too..
I think it's really really important to surround yourself with people that DO understand or if they don't understand are willing to be there to support you in whatever shape or form you need. Not many people that I know understand only those who have something similair or know someone with this or something similair. I have to admit I'm not sure whether I would have been particularly sympathetic to someone with FM myself before my accident - I've always been a believer in working through pain........with this you can't and it's soooooo difficult to explain - I think because I was so get up and go before that people can see the difference in me by how I live my life - and even in with severe pain I'll hobble for a walk as I know if I don't my muscles will slowly stop working and then I'll be in REAL trouble - it's really tough but boy do I appreciate my good/better days now.............
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thesweetlife
Last edited by thesweetlife; 04-10-2010 at 08:41 AM.
Re: No one understands 
