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  • triara
    I have a mom, a nurse no less, who just doesn''t "get" that cognitive impairment is real.  Whether its not being able to focus and cook with noise and other people around or difficulty in dealing with too much stimuli.  It's a "mental block" or being silly.  After having her falsetto-mimic my request for being left to work in the kitchen alone back at me, I am seriously reconsidering my visits over there.  I have been there after she has surgery and helped out till she was fit again.  She has many good qualities, but this one thing grates on me.  Anyone else have problems like this?  How do you cope? 
  • Sukie
    Hey im new 2 this site, but ive had MS for 11yrs now:( I know exactly what ur going through, my mother-in-law thought i would lie about some of the things i would go through, numbness on left side , 2 double to no vision on the same side, cant deal with some things when theres 2 much noise or ppl etc... ( just some of the things i have been thru) I believe shes just now realizing that im not a lyer, bc some1 @ her chruchs sister has MS & has had some of the same relapses I v had:(  Some ppl have no empathy towards what we go through, Im even starting 2 think my fiance is getting sick of my relapses, all I do & can do is pray:)  I never really spoke 2 any1 that has gone through some of the things i have been through, so God Bless mama... Its not ur problem, its theirs:)
  • bjbecker43

    I think it is very sad that our own family doesn't believe us until someone else's relative has the same issues.

  • Smiley68
    After reading this post, I get the double vision, or tunnel vision in my case, lose focus when there is to much noise, and when I get the tunnel vision, I get a numbness on that same side of my face. I've only been diagnosed as having multiple types of severe migraines, including ocular (as described above). Am I not being diagnosed properly, or am I reading too much into this?
  • polishprincess757
    I have exhausted myself with explaining my every symptom to my not supportive family. I have nothing to prove to them or anyone for that matter. I've just got the worst news of my life. I have MS. And I'll be damned to feel any lower then I already do knowing that my body is now rapidly deteriorating and somebody feels that I or anyone would make this up? Smh, I have also had my Dr tell me that I wasn't feeling the symptoms that I have been complaining about for the past year and a half. Until he got the MRI's. Needless to say his ignorance made me look elsewhere for proper treatment.
  • mksmike
    Yea everyone thinks If they don't see any symptons that there is nothing wrong with u.
    For me the summer is the worst. The fatigue is so bad at work it's hard to even walk. I wear a cooling vest and it helps a little but it's still bad. MS fatigue is 10 times as worse than normal fatigue
  • glbran
    WOW! I have for the last ten years stayed hidden. I am afraid to do mostly everything. I tell no one how I feel or what is hurting me today. I always believed it was in my head. I know for me, telling my wife what is hurting is a waste. I am the happiest when I am left to myself. Then I don't have to explain why I am the way I am. 
  • dustyme
    Recently the opposite happened to me: was trying to tell grp of women how hard it is on me being exposed to excessive heat for very long. Under her breath one of the women said she knew 2 or 3 other ppl who had MS and they didn't have trouble with the heat!  After I got over the hurt n upset I had to wonder if these other folks she knows with MS just have quit talking about their symptoms with her because they too found her to be unsympathetic. Rest of the grp was hardly any better, was left feeling I was speaking in tongues! Lol. I do not participate in this grp any more. You are right - it is their problem, and I hope they find ways to deal with it which make them grow. I'll continue looking for support while I lean on the Lord. Who also does not want me hanging around where I am belittled, disbelieved, denied or demeaned.
  • DSLewis
    I have the same problem, and it's usually with my husband. My mother doesn't want to hear that much about my MS either, because it depresses her. I have to laugh if off, though often it isn't very funny!
    But yes, I have the same issues with focus, and too much stimuli.
  • catbeast

    I know exactly what you mean.  People just don't get it or care to get it.  I was Diagnosed 2005 and then they would say very few people with MS have cognitive imparement now it is recognised as a major symptom of MS.  Too much noise going on really gets to me and I cant think.  Many blessings to you. CB x

  • blairmalloy
    My husband didn't acknowledge my symptoms until I was finally diagnosed. My MIL and all inlaws don't acknowledge that I have any health issues what so ever and think I am faking everything. Lovely right?!?
  • mrsprater83
    My mother in law actually said that she was "disappointed" that I was letting MS get the best of me. At the time she said that I had probably been diagnosed for 5 months? Some people just don't get it.
  • mrsprater83
    My mother in law actually said that she was "disappointed" that I was letting MS get the best of me. At the time she said that I had probably been diagnosed for 5 months? Some people just don't get it.
  • AllinMyHead
    It is good that you recognize the invisible symptoms.  It took me years to identify and accept them as symptoms of MS and not just that I wasn't putting in enough effort.  I have never thought that I had limitations based on ability, just that I prioritized and some things weren't a priority to me.  In the past, I never said, "I can't"...today I have to face the fact that there are some things I just can't do.  Since I look "normal" no one really understands what Igo through each day.  Even my neurologist says that if it weren't for the diagnostic scans, he wouldn't know I have MS.  I am sure he meant this as encouragement, but it made me question if these invisible symptoms are real.  I don't understand it, so I don't expect others to understand it either.  It is nice when others show some sort of empathy by being quiet, asking if they can help, smiling when I'm not, ... I have to get my head around this first and then I can choose how best to respond to others.
     
  • AllinMyHead
    It is good that you recognize the invisible symptoms.  It took me years to identify and accept them as symptoms of MS and not just that I wasn't putting in enough effort.  I have never thought that I had limitations based on ability, just that I prioritized and some things weren't a priority to me.  In the past, I never said, "I can't"...today I have to face the fact that there are some things I just can't do.  Since I look "normal" no one really understands what Igo through each day.  Even my neurologist says that if it weren't for the diagnostic scans, he wouldn't know I have MS.  I am sure he meant this as encouragement, but it made me question if these invisible symptoms are real.  I don't understand it, so I don't expect others to understand it either.  It is nice when others show some sort of empathy by being quiet, asking if they can help, smiling when I'm not, ... I have to get my head around this first and then I can choose how best to respond to others.
     
  • leski1002
    I'm often left feeling as though i have to defend myself to everyone in my life almost haven't to convince them that this invisible illness called multiple sclerosis is real! I had my first attack at age 15 and went through torture with battering of tests. It took 10 yrs before i was diagnosed, I feel closure knowing I'm not crazy like everyone thought. However now I'm alone with no support. My family days their here for me but that's just an act. I've been made to feel like a burden and feeling such hopelessness. I'm losing myself, does anyone have any advice for me?
  • yobassoongirl
    While I am very happy to hear the statement...."Wow, you look great", from some people.....I often internalize it as, "Wow....you look great....but you have MS...I thought it would be noticable" I often reply, not always....Great....but I feel like crap! This is mostly from people from work.....! I kinda feel that they are "doubting" my diagnosis, to justify their "crappy" treatment of me for the last few years. I have only had one apology for the doubt and bad treatment, while all along I knew that there was something wrong!  I still don't feel like I will be accepted and treated like a person with MS, who is trying, harder than heck, when I go back to work next week. Quite truthfully....I am scared!!! See...it is always the outside that matters....not what is going on inside! I wish people could spend one day in my shoes and experience how I feel......
  • 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?  

     

     

     

     

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