Everyday at work and in the community, people (coworkers, clients and strangers) ask me "How are you doing?" I reply with a "I'm Ok, how are you today?" To be completely honest, I'm sick of telling people I'm ok when I'm really not. First, I don't want to disclose my illness to people I don't know; second, I know they don't really care how I am doing, it is simply something you ask to be polite and third it's frustrating. My husband's parents are from Poland and in their culture, when you ask someone how they are doing, they expect a meaningful response to the question with honesty because that is one difference between European culture and American culture. I'm having a difficult day today and my pain level is high. I feel like I have cement in my joints and my muscles feel heavy/weak. I've made several phone calls today at work and am obligated to ask the question, how are you doing? Does anyone ever get frustrated with having to give a cookie-cutter, one size fits all response? The only people I can be honest with are my husband, my mom and stepdad and my counselor. I have a feeling that this is irritating me so much today because I'm in a lot of pain.
I don't work anymore but, yes I agree with the normal response it is basically a blah statement. If I am having a dizzy day, I tell them or "I am out of bed & dressed THIS is a good day" or " I am a little achey today" For your work just stick to the normal & everyone else is up for grabs! WOOO HOOO
Sara, I understand your frustration. It is hard to feel like we do with fibro and have to say we’re ok because a cultural convention dictates we must. We are not alone with our frustration. People with other chronic illnesses and those dealing with loss, along with people coping with any number of problems feel the same way about having to say they are fine when they are not. I cope with it now by just accepting that it is just an odd thing about our culture and by reminding myself that in spite of all the pain, exhaustion and the all of the other problems I face everyday with fibro, on some level I truly am ok. I am alive and coping with fibro and so are you and that is more than ok. It is amazing. Your body does not feel ok, but you are much more than ok. You are working and living your life with fibro which is awesome in the true sense of the word. I hope this helps.
It is awesome and it is not (working with fibro)--many days I do come home in tears and completely spent. I work in a very competitive work environment and I feel that my life has been cut short because of my illness. I don't say much to anyone. I provided a letter to my boss and then she tried to cut my hours. Hr overruled thank God, but I don't feel like I fit in at work very well because I can't talk about wonderful weekend adventures, traveling, skiing, boating etc...In fact I spend most o my weekend recuperating.
This does lead to depression on many levels. I do not mean to be a wet blanket but this illness is a thorn in my side, a cross to bear, and I have come to resent it. THERE, that's how I really feel. At work, I say "I'm great, how about you?", lol
Social conventions can be a b&%$# for a lack of a better word! It is such a nuisance having to pretend that you are good and that you are feeling well and having a super duper day because that is what people want you to say. A specialist over here in Iceland had a great article in one of the newspapers where he says that fibro is just as important as a coronary. As despite both those sicknesses are none tangible they are still real. He posted this picture along the article, some of you have probably seen it online but I am still wanting to post it for those who haven't. This picture really fits in regards to the fact that all the bruises can be hid with clothing, just the same as our pain is hidden and unvisuable.
I must say that having a workplace that understands your plight and assist you is wonderful. I am one of those lucky ones that have a great boss and co-workers. They rarely ask me how I am doing but rather ask questions like "is it one of those days?" or "you seem to be having a good day, or is that just a front".
I understand you totally. When I worked (of all places a GP's office) I was repeatedly asked the same thing. Towards the end before I left I felt in pretty rough shape. Some day I just wanted to reply "Well how do I look" or scream "i feel like crap". However my reply changed from"Good, how are you?" to usually "Not so bad today" or "I've had better days." I too didn't want to say good when I wasn't. I guess I hoped others would understand too that I wasn't up to par myself without having to go into details.
I say, " I’m hanging in there, how about you?" in the most cheerful voice I can muster. I’m not lying, and I’m not giving information I don’t want to say and they don’t want to hear.
After a family outing yesterday, my head was about ready to pop. Of the twelve people attending a BBQ only a handful are working. One woman kept telling me about all the healthy foods that I should be cooking after work. I tried to say that after work I am done for. And she would say "Oh no, this is simple, mix this blend that, slice it dice it, bake it, freeze it". My head was spinning. And she is home on disability. Not that I have anything against that but I would expect a little bit o' empathy. Strangely, my blood sugar has been high and all of the family had had much curiousity about that.
Even my insurance company called about the high blood sugar, when I told her that I also had UCTD and FM she was like 'Oh well", ie that's no big deal. So you kind of have to put it in perspective and laugh.
Another great answer is "Never been better", ppl usually get that one.
Denise said:
I say, " I'm hanging in there, how about you?" in the most cheerful voice I can muster. I'm not lying, and I'm not giving information I don't want to say and they don't want to hear.
Mary, thank you for the uplifting words and reminders that I am doing OK and I am making it through every, single day : )
Sara
Mary said:
Sara, I understand your frustration. It is hard to feel like we do with fibro and have to say we're ok because a cultural convention dictates we must. We are not alone with our frustration. People with other chronic illnesses and those dealing with loss, along with people coping with any number of problems feel the same way about having to say they are fine when they are not. I cope with it now by just accepting that it is just an odd thing about our culture and by reminding myself that in spite of all the pain, exhaustion and the all of the other problems I face everyday with fibro, on some level I truly am ok. I am alive and coping with fibro and so are you and that is more than ok. It is amazing. Your body does not feel ok, but you are much more than ok. You are working and living your life with fibro which is awesome in the true sense of the word. I hope this helps.
I can definitely relate to how you are feeling. It is difficult to hear everyone at work talk about how great their weekend was with the adventures they were able to pursue, while a lot of our weekends are spent recovering from the long work week and preparing for the next so we aren't completely exhausted. I, when I can, try to focus on the little things that I accomplished : ) Even if that be a load of laundry and sitting out in the sunshine for an hour. I don't enjoy hiking, skiing or things like that because I usually end of overdoing it and paying for it the next few days.
Hang in there and I will do the same : )
Hugs,
Sara
jannytheresa said:
It is awesome and it is not (working with fibro)--many days I do come home in tears and completely spent. I work in a very competitive work environment and I feel that my life has been cut short because of my illness. I don't say much to anyone. I provided a letter to my boss and then she tried to cut my hours. Hr overruled thank God, but I don't feel like I fit in at work very well because I can't talk about wonderful weekend adventures, traveling, skiing, boating etc...In fact I spend most o my weekend recuperating.
This does lead to depression on many levels. I do not mean to be a wet blanket but this illness is a thorn in my side, a cross to bear, and I have come to resent it. THERE, that's how I really feel. At work, I say "I'm great, how about you?", lol
That picture is wonderful in describing how we feel, even though people can't physically "see" our illness. I'm going to save that picture.
Thanks,
Sara
Hildur said:
Social conventions can be a b&%$# for a lack of a better word! It is such a nuisance having to pretend that you are good and that you are feeling well and having a super duper day because that is what people want you to say. A specialist over here in Iceland had a great article in one of the newspapers where he says that fibro is just as important as a coronary. As despite both those sicknesses are none tangible they are still real. He posted this picture along the article, some of you have probably seen it online but I am still wanting to post it for those who haven't. This picture really fits in regards to the fact that all the bruises can be hid with clothing, just the same as our pain is hidden and unvisuable.
I must say that having a workplace that understands your plight and assist you is wonderful. I am one of those lucky ones that have a great boss and co-workers. They rarely ask me how I am doing but rather ask questions like "is it one of those days?" or "you seem to be having a good day, or is that just a front".
Thank you, I'm doing better. Some days are more difficult than others, as you know.
Hugs,
Sara
steph323 said:
Sara
I understand you totally. When I worked (of all places a GP's office) I was repeatedly asked the same thing. Towards the end before I left I felt in pretty rough shape. Some day I just wanted to reply "Well how do I look" or scream "i feel like crap". However my reply changed from"Good, how are you?" to usually "Not so bad today" or "I've had better days." I too didn't want to say good when I wasn't. I guess I hoped others would understand too that I wasn't up to par myself without having to go into details.
I don't work anymore but, yes I agree with the normal response it is basically a blah statement. If I am having a dizzy day, I tell them or "I am out of bed & dressed THIS is a good day" or " I am a little achey today" For your work just stick to the normal & everyone else is up for grabs! WOOO HOOO
I say, " I'm hanging in there, how about you?" in the most cheerful voice I can muster. I'm not lying, and I'm not giving information I don't want to say and they don't want to hear.
sarah: so true....I have to exaggerate about what I did over the weekend; every minute detail....Like, Oh, I went to a huge celebration and saw my sister for dinner (was like 1 1/2 hrs), shopped, and watched a great movie...terrific weekend!
Do have to laugh a bit--we should create some great tales together about what we have done....all the boring minutia explained...."folded six towels and three blouses, six pairs of socks....." THEN I washed my hair with Pantene and CONDITIONED it...Had a fantastic time....have to be a little silly some times....
SaraZ553 said:
Hi jannytheresa,
I can definitely relate to how you are feeling. It is difficult to hear everyone at work talk about how great their weekend was with the adventures they were able to pursue, while a lot of our weekends are spent recovering from the long work week and preparing for the next so we aren't completely exhausted. I, when I can, try to focus on the little things that I accomplished : ) Even if that be a load of laundry and sitting out in the sunshine for an hour. I don't enjoy hiking, skiing or things like that because I usually end of overdoing it and paying for it the next few days.
Hang in there and I will do the same : )
Hugs,
Sara
jannytheresa said:
It is awesome and it is not (working with fibro)--many days I do come home in tears and completely spent. I work in a very competitive work environment and I feel that my life has been cut short because of my illness. I don't say much to anyone. I provided a letter to my boss and then she tried to cut my hours. Hr overruled thank God, but I don't feel like I fit in at work very well because I can't talk about wonderful weekend adventures, traveling, skiing, boating etc...In fact I spend most o my weekend recuperating.
This does lead to depression on many levels. I do not mean to be a wet blanket but this illness is a thorn in my side, a cross to bear, and I have come to resent it. THERE, that's how I really feel. At work, I say "I'm great, how about you?", lol
Haha, this made me smile : ) It is a struggle having to cope with the reality of what our weekend is versus what we want to tell people versus what we really wish our weekends were like.
It is hard…I don’t like lying but telling the truth…then people will say you a Debbie downer…it’s hard I have kids and I’m either in pain or tired…so to see others doing stuff with there kids make me sad…
I used to feel that I was short changing my son. Now he is 21 and still at home and I do think that my being ill impacted him. He's not in any trouble and he's very kind--I think one o the key emotions that we all feel is guilt and also regret.
It's pretty difficult and I think we should all plan a date and time and let out one big universal SCREAM!!!
You set the date and time and I'll let everyone person with fibro know (kind of like the candle in the window, but instead a giant scream or howl).
