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  • my_shana

    Hi -
    When were you d/x? I was d/x in '92 and I am RRMS - however I am now going through an exacerbation that I just can't come back from. BUT, i'm walking, i'm getting dressed (not yesterday), and just went out to eat with my daughter. However my doctor may admit me tomorrow (i did take a shot this morning) and if i'm no better tomorrow i will be admitted. SO THOSE OF  US WHO STILL ARE WALKING "ARE CURSED WITH THE BUT YOU LOOK SO WELL " . Sadly i don't think this will ever change. But good luck. Please let me know how you are doing.

     

  • bethdost

    SO SICK OF THAT COMMENT   FEEL LIKE I SHOULD CARRY A SIGN....THERE IS NO  I REPEAT  NO CURE     GLAD I LOOK SO GREAT

  • Lissajohnson

    Wow I've been through that with my ex boyfriend.  I still work and at a preschool (yikes) lol  5 days a week and on the weekend I like to sleep in.  But my ex would ask me all the time was I going to sleep the weekend away.  I would tell him I'm tired and no, just need some extra rest.  He looks on disappointed cause he is ready to go.  As I get myself together he realizes I'm slow and he will slow down for me to keep up with him, but I can tell it annoyed him sometimes when he is on a mission. He was good with me in lowlight places though, because he has seem me fall frm it.

    but when I catch a sudden pain he looks concern and say, I forget ur sick because u don't look like it. Really what do sick really look like?  

     

     

     

     

  • dpalazzo
    When someone tells me how good I look, I tell them I wished my brain and insides looked as good as the outside.  They don't understand MS and I am sure they are trying to be kind because they don't know what else to say.  I let them know God is in control and I trust Him completly.
  • beckylc
    I understand. My mother would search for me to tell me about how much pain shes in. After about a year I asked if I could hit her with a brick to let her feel the pain I'm in everyday. She moved out and hasn't talked to me sense.
  • ysteele
    my_shana wrote:

    Hi -
    When were you d/x? I was d/x in '92 and I am RRMS - however I am now going through an exacerbation that I just can't come back from. BUT, i'm walking, i'm getting dressed (not yesterday), and just went out to eat with my daughter. However my doctor may admit me tomorrow (i did take a shot this morning) and if i'm no better tomorrow i will be admitted. SO THOSE OF  US WHO STILL ARE WALKING "ARE CURSED WITH THE BUT YOU LOOK SO WELL " . Sadly i don't think this will ever change. But good luck. Please let me know how you are doing.

     


     
  • pricklybee
    my_shana,
    I've had a neurologist tell me I'm a "poster child" of doing well with MS: same guy who told me I should start antidepressants before my son was born b/c I would have post-partum depression.
    The best response I've heard for the "but you don't look sick" is "wow, and you don't look narrow-minded". Of course, I've not used it b/c I don't want to be mean, but it makes me smile to think of it.
  • slim-chances
    My family's response to my M.S has shown there true colors. I am now dissabled and miss work emensly. I was with the same company for 16 yrs and my ex coworkers must know me more than my own family because they genuinely semester to care and even spend time to visit me if I'm in the hospital. My weight dropped from a healthy 160 to 118 , I am 6 ft tall. I was placed in i.c.u for one week and spent an additional 2 weeks in the hospital for the worst exacerbation I have experienced. My mri shows around 60 lesions on my brain and brain stem, I don't know if this is an average number or not , I'm sure others are much worse off and I allways take ones word to how good or si k they feel. My whole body was shutting down my right leg wouldn't work I kept falling due to balance and vertigo. Swallowing food was near impossible, I took the steroids in the hospital for the maximum time and Baylor in Dallas slowly brought me back to life. The medical team there were great and I owe them my life and know I'm blessed to of received such good care. My wife on the other hand has come to hate me. She actually told me since I have become I'll I have gone from being a good man to a "loser". She makes offhand comments about me not being a mane because I can't perform sexually like I use to. I am completely able to have intercourse I just choose not to , it hurts my body so bad have sex that I would rather not temp the m.s.i had only been out of the hospital for 2 weeks and she expected me to help her cary a couch from our first floor to our second. She knows I'm on a Cain and can't lift a gallon of milk with my right arm , I fall sometimes and put my head in the sheet rock trying to pit on pants days before the couch incadent.She comes home from work every night and gripes at me until she falls asleep mad, even tells me she Hayes me. I told her the next time she does this I am done and we will put the house for sale split our access and go out separate ways. I am 43 and our son is 21 and was home from the a University of Texas and overheard her talking to me in these hateful ways and told her she should know how much this disease has changed me and should never speak this way to me again . She has since bit her tounge I guess but I imagine it will not be long before her hateful ways show back up. I know it must be hard going from having a fully capable spouse to a spouse you can not rely on to travel and do normal married things but good grief it's not like I asked for this. As for my family I would often hear they would talk negatively of my illness so I have nothing to do with most of them and as for my wife the next time I suffer at her verbal abuse will be the last. I truly feel for all of you who have gone through likewise problems and am grateful that we have each other in this M.S community to lean on .some of your stories brought tears to my eyes and all of you are in my prayers . Please know that it is sometimes better to weather the storm alone than to be at the will of hateful people that will never know what it's like to be in a horrible position such of the likes of fighting this god awful disease that takes and takes . M.S is a taking disease and some people are just to self centered to get it.
  • slim-chances
    My family's response to my M.S has shown there true colors. I am now dissabled and miss work emensly. I was with the same company for 16 yrs and my ex coworkers must know me more than my own family because they genuinely semester to care and even spend time to visit me if I'm in the hospital. My weight dropped from a healthy 160 to 118 , I am 6 ft tall. I was placed in i.c.u for one week and spent an additional 2 weeks in the hospital for the worst exacerbation I have experienced. My mri shows around 60 lesions on my brain and brain stem, I don't know if this is an average number or not , I'm sure others are much worse off and I allways take ones word to how good or si k they feel. My whole body was shutting down my right leg wouldn't work I kept falling due to balance and vertigo. Swallowing food was near impossible, I took the steroids in the hospital for the maximum time and Baylor in Dallas slowly brought me back to life. The medical team there were great and I owe them my life and know I'm blessed to of received such good care. My wife on the other hand has come to hate me. She actually told me since I have become I'll I have gone from being a good man to a "loser". She makes offhand comments about me not being a mane because I can't perform sexually like I use to. I am completely able to have intercourse I just choose not to , it hurts my body so bad have sex that I would rather not temp the m.s.i had only been out of the hospital for 2 weeks and she expected me to help her cary a couch from our first floor to our second. She knows I'm on a Cain and can't lift a gallon of milk with my right arm , I fall sometimes and put my head in the sheet rock trying to pit on pants days before the couch incadent.She comes home from work every night and gripes at me until she falls asleep mad, even tells me she Hayes me. I told her the next time she does this I am done and we will put the house for sale split our access and go out separate ways. I am 43 and our son is 21 and was home from the a University of Texas and overheard her talking to me in these hateful ways and told her she should know how much this disease has changed me and should never speak this way to me again . She has since bit her tounge I guess but I imagine it will not be long before her hateful ways show back up. I know it must be hard going from having a fully capable spouse to a spouse you can not rely on to travel and do normal married things but good grief it's not like I asked for this. As for my family I would often hear they would talk negatively of my illness so I have nothing to do with most of them and as for my wife the next time I suffer at her verbal abuse will be the last. I truly feel for all of you who have gone through likewise problems and am grateful that we have each other in this M.S community to lean on .some of your stories brought tears to my eyes and all of you are in my prayers . Please know that it is sometimes better to weather the storm alone than to be at the will of hateful people that will never know what it's like to be in a horrible position such of the likes of fighting this god awful disease that takes and takes . M.S is a taking disease and some people are just to self centered to get it.
  • my_shana
    The name of my support group, back in '93, was called "but you look so well". Over the yrs., unfortunately, that doesn't hold true for alot of us any more.
    It's sad that people will see any one of us park in a handicap parking spot, get out of the car, and get diry looks.
    I know I never, ever judge a book by its cover anymore.
    As far as your mom - shame on her.


  • joynerthedad

     

    My balance issues recently causedme to fall in the bathroom and break my fibula.  Have a 1/2 cast on it until the swelling goes down...and am getting around on crutches.  Ah, now people can see the cast and crutches.  People are being so nice to me.  I am actually finding it quite funny.  Don't get me wrong, this injury is changing how I manage my day but...I am also aware it is temporary and has a healing end point.  I have been laughing to myself...where were these people when my brain stem was causing my eyes to cross a little resulting in double vision?  Guess they couldn't see that one?

     

     

  • Excadet
    my_shana wrote: The name of my support group, back in '93, was called "but you look so well". Over the yrs., unfortunately, that doesn't hold true for alot of us any more.
    It's sad that people will see any one of us park in a handicap parking spot, get out of the car, and get diry looks.
    I know I never, ever judge a book by its cover anymore.
    As far as your mom - shame on her.



     
  • kimberlysj
    I am too focused on my walking to notice if I get looks. I'm just grateful that I can park closer to the store so when the stiffness and fatigue kicks in from shopping I can crash in my car. And I love when someone has left a grocery cart near by that I can use. Definitely helps with ambulation and keeping me looking good! :)
  • kimberlysj
    I am too focused on my walking to notice if I get looks. I'm just grateful that I can park closer to the store so when the stiffness and fatigue kicks in from shopping I can crash in my car. And I love when someone has left a grocery cart near by that I can use. Definitely helps with ambulation and keeping me looking good! :)
  • kaj
    It is so hard to explain to people.....I am in the same boat with my wife......there are days I just don't feel like doing anything.....can't think straight, can't handle confusion, can't find anything.....Hang in there, eventually she will get it. 
  • kaj
    Oh yes, many times I have had this problem.  Lay the law done and educate her with reading material that you can find on the national ms site.  I did this with my close family and friends and it has helped big time!  Best to you.  I too suffer more from cognitive symptoms than just about anything else.  (next in line is tingling in hands and feet)...Best too you
  • CowboysnAngels
    Wow...all of these posts are spot on to my feelings.  When I told my almost 90 year old mother  last week that I have definitely have MS, all she said was, "huh-they said that before".  Then she immediately changes the subject and talks about herself and her ailments.  She lives with us.  My husband is awesome, has dinner ready every night, does everything he can for me.  But it's the listening..no one wants to hear about it...I have friends, but like I've said before, people cannot understand what they cannot see.  You cannot see my legs tingling and heavy; you can see I'm tired, but you don't understand why.  This is why I joined this sight.  To know that I'm not alone, and to know that you ARE listening.  Thank you all~
  • robhall74

    That part about your Mom cracked me up! Mine just talks about how terrible it is for her that I have MS! Right, cause she is the one in pain and can't remember how to do whatever it was she was doing 5 minutes ago. Or wakes up one day with pain and the next without and not knowing how you may or may not feel from day to day. Terrible for her. My favorite is when people all of a sudden talk to you like you are deaf. Cause raising your voice will somehow help my pain or help me remember why I walked in the room. 

    Thanks for sharing,

  • kellykane

    My mum just celebrated her 85th birthday! She complains to me about the pains of becoming old without seeming to realise that I beat her to it.  I try to be appreciative of her age and never condemn any of her comments but it is hard.  I know that if I manage to get to her age I will just be glad to be alive. Unlike yourself my mother doesn't live with us but we stay over at her home in Glasgow regularly because we live on an Island.It's great even reading the responses to your comments and know I am not alone x

     

  • kellykane

    CowboysnAngels wrote: Wow...all of these posts are spot on to my feelings.  When I told my almost 90 year old mother  last week that I have definitely have MS, all she said was, "huh-they said that before".  Then she immediately changes the subject and talks about herself and her ailments.  She lives with us.  My husband is awesome, has dinner ready every night, does everything he can for me.  But it's the listening..no one wants to hear about it...I have friends, but like I've said before, people cannot understand what they cannot see.  You cannot see my legs tingling and heavy; you can see I'm tired, but you don't understand why.  This is why I joined this sight.  To know that I'm not alone, and to know that you ARE listening.  Thank you all~

     

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