Aa
VENT!!! But You look So Good
I went to a dear friend's daughter's wedding tonight. It was a beautiful out side wedding that looked like it came out of a bridal magazine. I am so happy for the bride and groom !!!
My complaint is from those who don't understand MS at all and it wore heavily on my nerves. In fact, It took 2 glasses of champagne to calm me down :-)
I'm sorry to *itch but I got soooo tired this evening of hearing "O, you look SO GOOD!". Well, I don't FEEL so good. My ribs hurt bilaterally, I have bone pain in my right leg and spasms in my left. I was so tired I almost feel asleep during the reception. The temp was a muggy 85 degrees as a rain storm had just moved through to cool things down.We got a tour of the newly renovated house and I almost fell 3 times. Thank goodness for my DH walking behind me! My neuro ordered IV steroids which I have held off for about 4 days but am slowly changing my mind...
On the way home home, I was asked why did I take my cane inside? It certainly wasn't for sympathy because I look too good for that. It was if my DH was embarrassed by my cane then I 'd say some education is in order. I know he doesn't realize how difficult it is to navigate uneven terrain , especially in the dark or the loss of proprioception but no matter what I was insulted!
Sorry for the vent but I know someone here would understand! I know my DH , as good as he is, still needs some education but I just need to *itch to someone who would understand.
Thanks for listening and understanding!
Ren
My complaint is from those who don't understand MS at all and it wore heavily on my nerves. In fact, It took 2 glasses of champagne to calm me down :-)
I'm sorry to *itch but I got soooo tired this evening of hearing "O, you look SO GOOD!". Well, I don't FEEL so good. My ribs hurt bilaterally, I have bone pain in my right leg and spasms in my left. I was so tired I almost feel asleep during the reception. The temp was a muggy 85 degrees as a rain storm had just moved through to cool things down.We got a tour of the newly renovated house and I almost fell 3 times. Thank goodness for my DH walking behind me! My neuro ordered IV steroids which I have held off for about 4 days but am slowly changing my mind...
On the way home home, I was asked why did I take my cane inside? It certainly wasn't for sympathy because I look too good for that. It was if my DH was embarrassed by my cane then I 'd say some education is in order. I know he doesn't realize how difficult it is to navigate uneven terrain , especially in the dark or the loss of proprioception but no matter what I was insulted!
Sorry for the vent but I know someone here would understand! I know my DH , as good as he is, still needs some education but I just need to *itch to someone who would understand.
Thanks for listening and understanding!
Ren
Looking good is not the same as feeling good. Perhaps you did look good which is why people commented, it is not fair for them to be expected to know how you feel, only that you may look good or bad. You should take it as a compliment :-)
Oh, Ren, I can SO identify!!
I get it from family members, co-workers, even other MSers. I know they haven't the foggiest freaking idea how I feel, they never will know, and I just want to crawl into a cave. But I'm so danged polite! I say "thank you" and even sometimes I'll add "but I feel like cr@p". I'm trying to let all that go. Just petty cr@p.
Luckily, my DH is supportive and asks me "do you want your stick?" when he knows we'll do a lot of walking. He's better in public than at home. I just have to remember he can't read my mind, and I'm learning to ask for help.
I get it from family members, co-workers, even other MSers. I know they haven't the foggiest freaking idea how I feel, they never will know, and I just want to crawl into a cave. But I'm so danged polite! I say "thank you" and even sometimes I'll add "but I feel like cr@p". I'm trying to let all that go. Just petty cr@p.
Luckily, my DH is supportive and asks me "do you want your stick?" when he knows we'll do a lot of walking. He's better in public than at home. I just have to remember he can't read my mind, and I'm learning to ask for help.
Billy Crystal used to do some kind of character act in which he said "I would rather look good than feel good." Firstly, I never found the routine funny, but regardless, I found that statement utterly innane. Nevertheless, our society puts such an emphasis on appearance that most of us probably overestimate its worth. It seems to be entirely possible that someone would feel that way.
I have to agree that most people have no understanding of MS whatsoever, or have inklings, but little factual information from which they might draw conclusions or around which they could form reasonable expectations. This is not often categorically their fault; it is the nature of mankind to be myopic and insensitive.
I remember when my mother was determined to be most likely suffering from early-onset Alzheimer's Disease (it can be diagnosed conclusively only through autopsy, or at least that was true in 1973). No one, not a single person with whom I came in contact for a long time thereafter, had ever heard of the disease, much less understood its implications. Many expressed concern, but only in a general, seemingly superficial way. I dont think many wanted to know that my pre- and early-teenage sisters were changing their mother's diapers, or that we'd more than once had to call the authorities in the middle of the night when we discovered that she'd gotten up and left the house in a housecoat in winter.
What can we do about it? I don't know. Educating those willing to learn will be helpful, but often people aren't willing to learn until they realize that they have failed to do so on some particular point. Perhaps we need to let those who matter to us know what it means to us, not only for our own sake, but for theirs, as well. Doing so with the proper balance of tact and candor can be a daunting task, obviously. I suggest beginning with prayer.
I have to agree that most people have no understanding of MS whatsoever, or have inklings, but little factual information from which they might draw conclusions or around which they could form reasonable expectations. This is not often categorically their fault; it is the nature of mankind to be myopic and insensitive.
I remember when my mother was determined to be most likely suffering from early-onset Alzheimer's Disease (it can be diagnosed conclusively only through autopsy, or at least that was true in 1973). No one, not a single person with whom I came in contact for a long time thereafter, had ever heard of the disease, much less understood its implications. Many expressed concern, but only in a general, seemingly superficial way. I dont think many wanted to know that my pre- and early-teenage sisters were changing their mother's diapers, or that we'd more than once had to call the authorities in the middle of the night when we discovered that she'd gotten up and left the house in a housecoat in winter.
What can we do about it? I don't know. Educating those willing to learn will be helpful, but often people aren't willing to learn until they realize that they have failed to do so on some particular point. Perhaps we need to let those who matter to us know what it means to us, not only for our own sake, but for theirs, as well. Doing so with the proper balance of tact and candor can be a daunting task, obviously. I suggest beginning with prayer.
Ren,
You are more than welcome to *itch. We all have the right to. That is what is so amazing about this forum, everyone really sympathizes.
I know people mean it as a compliment whent they say that "you look so good", they really don't mean to make you/us feel bad, it is just that they don't know what is going on, on the inside of us. People really need to be educated.
As far a you DH being embarrassed, tell him that this is for your own safety and would rather be seen with a cane than to fall all over the place. Maybe you are right and he needs to be better educated.
Maybe have your doctor explain to him exactly what is going on. They mean well, they just don't understand the whole picture. I know mine sometimes thinks I use it as an excuse not to do something, but if he would just take the time to learn he would understand.
He doesn't like to read so I found videos on you tube and he has been watching them and I have to admit that he has really done a complete turn around. Maybe this is an option?
Anyway, hope that venting made you feel better, I know it makes me feel better and all the support makes feeling better that much easier.
Take Care
Paula
You are more than welcome to *itch. We all have the right to. That is what is so amazing about this forum, everyone really sympathizes.
I know people mean it as a compliment whent they say that "you look so good", they really don't mean to make you/us feel bad, it is just that they don't know what is going on, on the inside of us. People really need to be educated.
As far a you DH being embarrassed, tell him that this is for your own safety and would rather be seen with a cane than to fall all over the place. Maybe you are right and he needs to be better educated.
Maybe have your doctor explain to him exactly what is going on. They mean well, they just don't understand the whole picture. I know mine sometimes thinks I use it as an excuse not to do something, but if he would just take the time to learn he would understand.
He doesn't like to read so I found videos on you tube and he has been watching them and I have to admit that he has really done a complete turn around. Maybe this is an option?
Anyway, hope that venting made you feel better, I know it makes me feel better and all the support makes feeling better that much easier.
Take Care
Paula
Yeah I was at a party with Polly and I got all that. People saying why do you go to a doctor at all.
I did go to the bathroom with my DH holding Polly and it was hard not to fall in the crowd.
It does not matter what others think. I know I need Polly or crutches most days and am not ashamed of it. Most people just do not understand what MS is.
Alex
I did go to the bathroom with my DH holding Polly and it was hard not to fall in the crowd.
It does not matter what others think. I know I need Polly or crutches most days and am not ashamed of it. Most people just do not understand what MS is.
Alex
For all of you who have heard this too many times, I can understand your emotional reactions to the comment. Chalk it up to people caring, but not having the insight or social skills to respond appropriately.
It reminds me of reading comments from students when a classmate dies "I never knew him/her, but saw him/her in the hallway and always thought he/she was a nice person." DUH? A lot of comfort to loved ones from that.
I did like Heather's response to these types of comments. "I have gotten to the stage that when I hear that phrase, "Oh, you are looking so well." I now say, "thank you for your nice comment, but I sure wish I felt as well as I looked. Each day is a struggle for me." And I leave it at that. Most of the time, they just stand there with their mouth open, not knowing what to say. "
Heather is being open and honest with what she says and opens the door for the other person to respond appropriately. Her response is also not cruel or meant to put the other person on the spot; if they don't know what to say, it is due to their lack of understanding and social skills.
That's my take on things.
It reminds me of reading comments from students when a classmate dies "I never knew him/her, but saw him/her in the hallway and always thought he/she was a nice person." DUH? A lot of comfort to loved ones from that.
I did like Heather's response to these types of comments. "I have gotten to the stage that when I hear that phrase, "Oh, you are looking so well." I now say, "thank you for your nice comment, but I sure wish I felt as well as I looked. Each day is a struggle for me." And I leave it at that. Most of the time, they just stand there with their mouth open, not knowing what to say. "
Heather is being open and honest with what she says and opens the door for the other person to respond appropriately. Her response is also not cruel or meant to put the other person on the spot; if they don't know what to say, it is due to their lack of understanding and social skills.
That's my take on things.
To All:
Thank you for letting me "itch and giving me the support only this forum can provide!!!
DH did mean well and it is HIS embarrassment that ticked me off the most. He made several comments during the evening that I "shouldn't have brought it, he could have done everything for me" .
Yes, the sentiment is nice and I certainly appreciate his support as I know others here aren't so fortunate. But, next time I will pull out the rollator and then he really feel embarrassed!
Hugs to each and everyone of you!
Ren
Thank you for letting me "itch and giving me the support only this forum can provide!!!
DH did mean well and it is HIS embarrassment that ticked me off the most. He made several comments during the evening that I "shouldn't have brought it, he could have done everything for me" .
Yes, the sentiment is nice and I certainly appreciate his support as I know others here aren't so fortunate. But, next time I will pull out the rollator and then he really feel embarrassed!
Hugs to each and everyone of you!
Ren
I think every one else here has said most there is to say on this subject, but I will tell you a recent incident in my life.
I now take 2 hours to get ready for work instead of the 20 minutes it took some 7 years ago. After spending a really difficult morning a few weeks ago getting ready for work, donning my sunglasses because my eyes were quite bad that day, I walked into work using my new designer switch stick to lean on and prevent me from walking like a drunk. I cursed the fact I even had to get there as I felt so cra* that day. ...................
The first colleague I met was a guy who is a lot younger than me, in fact he was once a student of mine. He stopped as I moved towards him and with a big grin on his face declared "wow, Pat you look so good you want to take care they don't take your parking badge off you". I didn't know whether to laugh or cry, I know he meant it as a compliment, he is such a nice young man, but it felt like a slap in the face.
My reply was something about - they can take the permit if they take the MS too, which kinda spoilt his moment.
Sending hugs and you know you can vent to me we have done so many times.
Pat x
I now take 2 hours to get ready for work instead of the 20 minutes it took some 7 years ago. After spending a really difficult morning a few weeks ago getting ready for work, donning my sunglasses because my eyes were quite bad that day, I walked into work using my new designer switch stick to lean on and prevent me from walking like a drunk. I cursed the fact I even had to get there as I felt so cra* that day. ...................
The first colleague I met was a guy who is a lot younger than me, in fact he was once a student of mine. He stopped as I moved towards him and with a big grin on his face declared "wow, Pat you look so good you want to take care they don't take your parking badge off you". I didn't know whether to laugh or cry, I know he meant it as a compliment, he is such a nice young man, but it felt like a slap in the face.
My reply was something about - they can take the permit if they take the MS too, which kinda spoilt his moment.
Sending hugs and you know you can vent to me we have done so many times.
Pat x
I agree; nobody really but all of us understand this disease.
A few years back, when I went to the Mellen Center, sitting in the waiting room, a woman with MS, who was using a cane, said to me, "You have MS, but you look so good."
I was floored... This was coming from someone who had MS.....
At the time, it was very disheartening to me because I was being told by all the doctors, of course, I did not have MS, so it was upsetting this lady was telling me this.
Sometimes I get a little snippy with my hubby because he is always asking me how I am feeling...and then I feel bad after the fact.
We all have to vent, that is for sure, and that is why we are all here together to do so...
Hugs...
terri
A few years back, when I went to the Mellen Center, sitting in the waiting room, a woman with MS, who was using a cane, said to me, "You have MS, but you look so good."
I was floored... This was coming from someone who had MS.....
At the time, it was very disheartening to me because I was being told by all the doctors, of course, I did not have MS, so it was upsetting this lady was telling me this.
Sometimes I get a little snippy with my hubby because he is always asking me how I am feeling...and then I feel bad after the fact.
We all have to vent, that is for sure, and that is why we are all here together to do so...
Hugs...
terri
ah, i totally feel for you.
truly, from what i've learned so far, this must be one of the hardest things to communicate about this disease. the majority of symptoms one is suffering from are essentially "silent" to the rest of the world.
a few members even of my family have had a hard time coming around to the fact that anything is wrong with me at all, which really hurt from quite some time.
i wish you all the best and definately understand how you are feeling, despite how good you are looking!
we believe in you!!!! (and feel for you)
xo michelle
truly, from what i've learned so far, this must be one of the hardest things to communicate about this disease. the majority of symptoms one is suffering from are essentially "silent" to the rest of the world.
a few members even of my family have had a hard time coming around to the fact that anything is wrong with me at all, which really hurt from quite some time.
i wish you all the best and definately understand how you are feeling, despite how good you are looking!
we believe in you!!!! (and feel for you)
xo michelle
I have gotten to the stage that when I hear that phrase, "Oh, you are looking so well." I now say, "thank you for your nice comment, but I sure wish I felt as well as I looked. Each day is a struggle for me." And I leave it at that. Most of the time, they just stand there with their mouth open, not knowing what to say.
Ren, as far as your DH, I know you love him but it's time to say to him, "Look dear, I pray to God that nothing like this ever happens to you. If it did, I would insist you use your cane so you didn't fall and break something, like a leg." If he would be embarrassed by you using your cane, that's exactly what I would tell him. I am glad that he was there to support you with a strong arm at the wedding.
Ren, sweetheart, I've known you so long, that I have tears rolling down my face. I weep for you, because I know how hard you are trying to beat this D**N thing. As we all are.
Sometimes it's just so hard to even walk through a grocery store. Especially the Super Stores. It won't be long for me, before I am going to have to swallow hard and get in one of the electric carts. I have no choice if I want to get everything on my list.
I send all my love to you, Ren-Ren. Don't forget to have that talk with hubby. At least you are trying your darndest to TRY and walk. And I really DO hope that nothing like this ever happens to your husband. Not so easy to put the shoe on the other foot, DH. You wouldn't make it one day without your cane if you felt like your precious wife day in and day out.
Sorry to pick on your hubby, Ren-Ren. Now I am venting. It took me back to the time that I laid on the couch in so much pain, I was practically screaming. My now ex husband, walks in the door and says, "why don't you go the h*ll upstairs and stop your whining."
Now that he's my ex, he's the one that is crying for the horrible way he treated me. I am serious. He's apologized to me at least a hundred times. We are now friends for the sake of ourselves and our children and grandchildren.
Okay, enough of slapping your DH around. It's not fair to you. I am just angry for you cause I love you. I hope you know that.
Big hugs and lots of sisterly love. Take care of yourself and maybe rethink those steroids.
Heather
Ren, as far as your DH, I know you love him but it's time to say to him, "Look dear, I pray to God that nothing like this ever happens to you. If it did, I would insist you use your cane so you didn't fall and break something, like a leg." If he would be embarrassed by you using your cane, that's exactly what I would tell him. I am glad that he was there to support you with a strong arm at the wedding.
Ren, sweetheart, I've known you so long, that I have tears rolling down my face. I weep for you, because I know how hard you are trying to beat this D**N thing. As we all are.
Sometimes it's just so hard to even walk through a grocery store. Especially the Super Stores. It won't be long for me, before I am going to have to swallow hard and get in one of the electric carts. I have no choice if I want to get everything on my list.
I send all my love to you, Ren-Ren. Don't forget to have that talk with hubby. At least you are trying your darndest to TRY and walk. And I really DO hope that nothing like this ever happens to your husband. Not so easy to put the shoe on the other foot, DH. You wouldn't make it one day without your cane if you felt like your precious wife day in and day out.
Sorry to pick on your hubby, Ren-Ren. Now I am venting. It took me back to the time that I laid on the couch in so much pain, I was practically screaming. My now ex husband, walks in the door and says, "why don't you go the h*ll upstairs and stop your whining."
Now that he's my ex, he's the one that is crying for the horrible way he treated me. I am serious. He's apologized to me at least a hundred times. We are now friends for the sake of ourselves and our children and grandchildren.
Okay, enough of slapping your DH around. It's not fair to you. I am just angry for you cause I love you. I hope you know that.
Big hugs and lots of sisterly love. Take care of yourself and maybe rethink those steroids.
Heather
I'm up in the middle of the night for the third night in a row, so time to check in here.
I wonder how an MS patient is *supposed* to look. Maybe all ashen and gaunt, with big hollow eyes, like one of Dr. House's patients, who will die in the next 15 minutes unless....
People do mean well, and that's what's so maddening about their comments. But it's like "Let me know if there's anything I can do," one of those expressions that basically are meaningless. Sort of a conversation-filler or smoother-over. Maybe the thinking (if there is any) is "This is awkward but I'll do my social duty so I can change the subject."
Since we can't allow ourselves a snappy comeback, even if we've heard the "so good" thing a hundred times, I guess the only thing to do is to come here and vent. And since we really can't bop our significant others on the head, we have this virtual room where we can say whatever we want. What a relief.
ess
I wonder how an MS patient is *supposed* to look. Maybe all ashen and gaunt, with big hollow eyes, like one of Dr. House's patients, who will die in the next 15 minutes unless....
People do mean well, and that's what's so maddening about their comments. But it's like "Let me know if there's anything I can do," one of those expressions that basically are meaningless. Sort of a conversation-filler or smoother-over. Maybe the thinking (if there is any) is "This is awkward but I'll do my social duty so I can change the subject."
Since we can't allow ourselves a snappy comeback, even if we've heard the "so good" thing a hundred times, I guess the only thing to do is to come here and vent. And since we really can't bop our significant others on the head, we have this virtual room where we can say whatever we want. What a relief.
ess
COMMUNITY LEADER
My DH use to be like that, sort of thick and not thinking but now i'm long past the stage of "oh you look so good" and more into the invisible she looks bad invalid stage (gulp, sad but true) DH has become the overprotective, dont let her do anything incase she does xxxxx and i'd rather we could go back to the forgetting somethings wrong with me stage lol.
Now if i could just learn to stop moving, I could get away with it until i fall over lol DH is always holding me and i get in trouble for not having my walking stick. Now if i hear one more time "put that down, I dont want you doing anything" i think i'll scream!!!!!!!!!!!!!!!
Now if i could just try and explain the balance needed between whats in his head and reality life would be sweet!!
Cheers.....JJ
PS just hit him with it and he'll soon learn lol
Now if i could just learn to stop moving, I could get away with it until i fall over lol DH is always holding me and i get in trouble for not having my walking stick. Now if i hear one more time "put that down, I dont want you doing anything" i think i'll scream!!!!!!!!!!!!!!!
Now if i could just try and explain the balance needed between whats in his head and reality life would be sweet!!
Cheers.....JJ
PS just hit him with it and he'll soon learn lol
I can completely understand this idiotic statement. I get very tired of the question "How are you feeeeeeling?" I feel like they are treating me like I only have days to live. it irritates me. I don't always feel soo fabulous, but I am not going to list off every ache and pain. They have no concept.
I constantly am put in a postion to calm people down about this disease. They all know of someone who died from complications from this disease. I wan't to scream "I am fine for now!!!"
I like what Sumandeveii replied. My husband is opposite. He is always trying to get me to bring my cane, hold onto him all the time. I dont' always want to lean on him. I need to be independent. So thats my rant for tonight. Sorry! :-)
I constantly am put in a postion to calm people down about this disease. They all know of someone who died from complications from this disease. I wan't to scream "I am fine for now!!!"
I like what Sumandeveii replied. My husband is opposite. He is always trying to get me to bring my cane, hold onto him all the time. I dont' always want to lean on him. I need to be independent. So thats my rant for tonight. Sorry! :-)
I would be tempted to have a nice long discussion with him. I would tell him I understand how hard it is for him (He will love that). Then go on to explain how you had worried you would embarrass him at the wedding by falling down and making a scene. Then I would further the conversation with "So next time I will rent a wheelchair. Both of us will feel more secure and I won't have to worry about falling and embarrassing you".
Bet that would open a converation....
Bet that would open a converation....
JemmAus:
Yes, DH is usually used for Dear Hubby but I SO like your version for those idiots who have treated their ex-wives terribly. Very Good substitution!!! Glad you understand my frustration.
Erin:
Thanks for the pat on the back I really needed it and I knew someone here would feel the same as I did! Thanks.
Ren
Yes, DH is usually used for Dear Hubby but I SO like your version for those idiots who have treated their ex-wives terribly. Very Good substitution!!! Glad you understand my frustration.
Erin:
Thanks for the pat on the back I really needed it and I knew someone here would feel the same as I did! Thanks.
Ren
Ren,
You can "itch" hear any time and know that we are with you!!!
I'm sorry that you had one of those days. I HATE it when I hear the but you look so good line. I really need to work on taking it as a compliment but it gets my hackles up like whomever says it really wants to say sure your sick, you like fine to me!
I hope that tomorrow is a better day and I think that you have earned some me time for keeping your chin up and not letting that be the thing that makes you snap. Boy that would have been a lovely end to the day, lol.
Take care - thinking of you
Hugs,
Erin :)
You can "itch" hear any time and know that we are with you!!!
I'm sorry that you had one of those days. I HATE it when I hear the but you look so good line. I really need to work on taking it as a compliment but it gets my hackles up like whomever says it really wants to say sure your sick, you like fine to me!
I hope that tomorrow is a better day and I think that you have earned some me time for keeping your chin up and not letting that be the thing that makes you snap. Boy that would have been a lovely end to the day, lol.
Take care - thinking of you
Hugs,
Erin :)
You know the other day I felt like cra* but HAd to go out, so thought, blow it, and stood infront of the bathroom mirror applying make up and doing my hair for an age.
later when I went shopping for food somone asked why I ahd a walking stick, I said MS, they said, Oh, but you LOOK SO GOOD! And I said, well I feel like crap, so I tart myself up to make me feel better emotionally.
I actually saw a youtube clip about it - MS being a really good reason to spend more time in the vanity department because there's not much else you can do.......
PS what is a "DH"? Your husband? Mine is an ex, so DH would stand for D*ck Head LOL
later when I went shopping for food somone asked why I ahd a walking stick, I said MS, they said, Oh, but you LOOK SO GOOD! And I said, well I feel like crap, so I tart myself up to make me feel better emotionally.
I actually saw a youtube clip about it - MS being a really good reason to spend more time in the vanity department because there's not much else you can do.......
PS what is a "DH"? Your husband? Mine is an ex, so DH would stand for D*ck Head LOL
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