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  • leavingsoon2013
    SARAH WHAT'S WRONG WITH YOU? YOU NEED TO SIT EVERYONE DOWN AND TELL THEM HOW YOU ARE DEALING WITH THIS HORRIFIC, FRIGHTENING, CONTROLLING, PAINFULL @#$!z% DISEASE, AND THINGS BETTER START CHANGING AROUND YOUR HOUSE! THIS IS NOT GOING TO GET BETTER.
    YOU TELL THEM THAT ONEDAY THEY ARE GOING TO BE SICK WHO'S GOING TO TAKE CARE OF THEM?
    GET THEM A BOOK OR TAKE THEM ALL TO A GROUP. OR GO LIVE WITH YOUR MOTHER, OR MOVE OUT AND LET THE COMMUNITY AND CHURCH HELP YOU.
    WARM REGARDS
  • SweeTee6
    I  understand, relate, sympathize and empathize. I read the length of the discussion and I  can understand many of the feelings, of being brave but wanting compassion and sympathy while being brave and strong.. I so appreciate this way to communicate with fellow people that will understand me . I need and want this way to vent to an understanding community. I know this reply is late but I was diagnosed last October with ms and just getting into all the activities. I had brain surgery in 2009 to remove a tumor so right now I communicate by typing, texting, email. I also have 2 great kids (9 & 5) & a "husband" so although things and abilities have been taken away from me or changed for me (us) my life is very full and active. I get the keeping silent, cause may feel people won't understand or can't find the right way to explain it so they can understand but the fact is we just an  understanding sympathy even if not understood.
  • improvissation
    SARAH74 wrote:

    I have 3 girls 17,10.12  and a husband, I don't say anything about all of the hundrends of thing I feel constantaly,  I don't think they want to hear  it , perhaps they don't know what to say back, or I'm certain they think most of it is not true or a excuse to be lazy, I just wish I had a better support system.  Not trying to be a downer, thats just how its working out for me, its ok, I am happy for MS connection, I don't feel alone and feel like I have a million friends that knows just what its all about and just what is up, with my silent symptons!



    I can deff relate to this. ;) I hv 3 kids, 18,18,21 .. and it would appear tht my BOYS are much more responsive/receptive to how I feel, than perhaps my Daughter/ my siblings are. First try to undrstnd, Its so hard for a Mom(myslf) to show her(my) ..imperfections.. when for most of her(my) adult life, was completely independent, and thn almost suddenly, Was Not.. Being divorced and working a full and part time job, and raising them on my own ( and all tht it entails), it would have seemed to them, and others, that there wasnt much Mom Couldnt do.. except pee standing up.lol  (well, tht parts Not true, i just cnt really aim or hit my target..lmao.). And, in my childrens eyes, I was the anchor, the go to, the healer.. of Any situation. Even divorce. I cannot begin to tell you what an exhausting effort it has been this last decade and more, just not knwing wht was wrng w/me. And again, the kids had no real idea tht I had any ailments at all. I kept all of my weaknesses/pain to myself, so as NOT to scare my children,ultimately.
    Until 2yrs ago.. whn I had announced my dx. And, since MS is an invisible disease, i dnt think my immediate family undrstnds exactly whts going on. (w/exception to my boys. thy WANT to undrstnd this.)  All other family members dnt believe me, or choose not to see it, because thy dont SEE the problem. Ive tried talking and even given them copies of my dx, along w/papers frm recent visits to the ER. These papers gave the simplest explanation of the disease "MS", and still it seems not to be accepted, or deffinately undrstood, by so many family members. Im not so sure how to make it any clearer to those whom can't  undrstnd this, whether by choice or by ignorance.
    I see my problem now being the fact tht if I dwell on it, i become frustrated, which could lead to anger, which is an emotion tht can be found to be spontaneiously out of control, at times(w/MS), and this.. can only make me sicker. So... it would seem i just have to let it roll, and hope tht thy will seek the knowledge to undrstnd wht its like to live with MS. its not pity i ask for... just an undrstnding. And if You know a way to get it accross to others easily enough, i would appreciate any input you may be willing to give. Thank You.    Stay strong. W/Gods blessing. <3 

    G
  • devongibson
    I know your post was over a year ago, and i pray things have changed for the better for you by now.

    I understand what u say and how you feel.  I have gotten to the point of trying not to say/complain or whatever you choose to call it, about any thing i deal with inside.  I really dont have anyone to talk w/ about this disease besides an aunt who lives over 750 miles away... so i just write alot, cry alot, get depressed it seems more often than not, but in the end, i still have to find a way to hold it all together for the 3 children we have 2 being under 2, and the other in the teen years. I work full time and don't have an outlet.

    Well, i just found this site and ive been dealing with M.S for years.  I hope to visit often.

    God bless
  • Bretta
    SARAH74 wrote:

    I have 3 girls 17,10.12  and a husband, I don't say anything about all of the hundrends of thing I feel constantaly,  I don't think they want to hear  it , perhaps they don't know what to say back, or I'm certain they think most of it is not true or a excuse to be lazy, I just wish I had a better support system.  Not trying to be a downer, thats just how its working out for me, its ok, I am happy for MS connection, I don't feel alone and feel like I have a million friends that knows just what its all about and just what is up, with my silent symptons!

    I have a husband who never even mentions the words MS. I am convinced he cannot  deal with it.  I do not have even one family member (siblings) that even asks how I am doing. I feel totally alone in dealing with the disease. In trying to understand the lack of concern from everyone, I write it off as they just don't understand.

  • Bretta
    I have a husband who won't discuss MS and a family (6 siblings) who don't even ask me how I am.  It gets lonely!!  I have to assume they are totally unaware of what I go through because I can't bear to think they don't care. Must admit sometimes I want to scream "Do you even believe I have this disease?!?!?"
  • itistonyb
    SARAH74 wrote:

    I have 3 girls 17,10.12  and a husband, I don't say anything about all of the hundrends of thing I feel constantaly,  I don't think they want to hear  it , perhaps they don't know what to say back, or I'm certain they think most of it is not true or a excuse to be lazy, I just wish I had a better support system.  Not trying to be a downer, thats just how its working out for me, its ok, I am happy for MS connection, I don't feel alone and feel like I have a million friends that knows just what its all about and just what is up, with my silent symptons!



  • itistonyb
    I have alot of cognitive issues. And NUMBNESS and pain in my thigh. Im so scared and have suicidal anxiety. Cant function in daily life. Please help me.
  • katvilc
    Hi dscarlet, I have hightened sense of smell, I can smell things no one else in the room can smell sometimes, what smells slight to some smells extremely loud to me. I have even experienced certain smells creating vertigo, has that ever happened to you, it's pretty weird. I pray for your health and wellness. stay encouraged.
  • katvilc
    Hi Rachael, sometimes people distance themselve when they have fears about what they don't completely understand, maybe you should talk with your boyfriend, to find out if there is something or someone creating distance between you.
  • rosernmom

    Hi. I feel the same way. I get upset when the people in my life seem to "forget about how much I am hurting". Their lives go on as normal and I feel trapped with my symptoms!

     

  • jen-tattooz
    SARAH74 wrote:

    I have 3 girls 17,10.12  and a husband, I don't say anything about all of the hundrends of thing I feel constantaly,  I don't think they want to hear  it , perhaps they don't know what to say back, or I'm certain they think most of it is not true or a excuse to be lazy, I just wish I had a better support system.  Not trying to be a downer, thats just how its working out for me, its ok, I am happy for MS connection, I don't feel alone and feel like I have a million friends that knows just what its all about and just what is up, with my silent symptons!



  • sherihorton676
    Hi I am going through the same thing I have a 12,11 year old at hone and the 12 year old calls me lazy! But I always try and make sure she has a meal cook for them! I do my best but my body hurts and goes numb! Head always hurting bad. I do my best and that is all anyone can do. So no it is just not you. Oh and my kids dad said that he hopes I complain to my doctors as much as I do to him so I am done complaining to him I will just save it for the therapist!
  • plooky1625

    I feel the same way.  I was urged to move to be closer to friends and family, but now they feel that I am just should get ajob and stop being a downer.  These are supposed to be my best friends, but when I need support and a place to vent, the people I am supposed to tell anything to, refuse to listen.

  • antoinettef

    SARAH74 wrote:

    I have 3 girls 17,10.12  and a husband, I don't say anything about all of the hundrends of thing I feel constantaly,  I don't think they want to hear  it , perhaps they don't know what to say back, or I'm certain they think most of it is not true or a excuse to be lazy, I just wish I had a better support system.  Not trying to be a downer, thats just how its working out for me, its ok, I am happy for MS connection, I don't feel alone and feel like I have a million friends that knows just what its all about and just what is up, with my silent symptons!


    I undertand this completely....I was diagnosed in 94 and my husband of 40 yrs wasn't with me.  I came home and told him and typical of me I put it out of my mind.  Troughout this 10 yrs I have not said a word..because that woud have made it real.  I had falls..my foot seems to go numb in an instant and the feeling of someone shooting my with rubber bands but when I get those symptoms I forge on..nothing is going to control me.

    But a few months ago I lost my voice for 6 weeks...I ignored it as I always do but when it came back my voice was robotic and I can no longer write..so anyone can read it..heck I can't even remember what I wrote. I avoid numbers...

    It seems like my brain and my voice have no relationship.  I am slower but my mouth wants to speed it up..it is so frustrating.  We knew it was time to go to the Drs.  I had another MRI done and it shows the damage done but there was only one bright light.  He sent me to speech therapy..but I could tell that she she felt this was a case of 'use' and not cognition. My husband and I talk all the time..and I can't control this one. 

    Anyway I missed my point..LOL..I was the one covering as a need of my own..he wasn't not caring about it..afterall he didn't want to believe it either. When he saw for himsef the pics of my brain. It became a real problem. 

    Share it with your family!

    BTW..does anyone have a speech problem?  Would you share it with me..I have decided to get educated...finally!  It only took ten years..but I need more tools.  I realize now that  'mind over matter' will not always work...and that took until I was 70!!!

    Nice to meet all of you..it is so nice to finally talk about it!!!

  • coraveronica
    I isolate myself because of that, don’t do it…it is more painful at the end. Look for articles that explain in medical terms what you are going through and ask your Mom to read it.
  • Lloyd
    This was a big one with me when I was first dx and even a year later. If I had family or friends over they would say lets go to the mall, I had to try to explain over and over again. Finally I took my wife and dayghter to one of those MS sponsored meetings at a hotel and them hearing the Dr explain Ms and they evenness asked questions. On the way home they both apologies for past actions, I explained I didn't need them to be sorry just understanding. Every once in a while it still happens with someone.
  • diona
    Sorry you have to deal with this.  I too have to deal with my husbands sensitivity to sounds/stimuli.  I know it is real because of how it makes him act if there is too much of it around.  If your mother is not willing to work with you in dealing with these sensitivities then you should just tell her you will not be able to visit unless she can respect your needs for noise/stimuli reduction.  While it may not be easy to understand, your requesting it from her should be enough for her to want to help.  I have to step up to the challenge with three children around. 
  • Cordelia
    tiara, there is nothing you can say or do for people, friends and or family to understand MS. You have to pick your battles with them because its so draining dealing with negitivity and doubting people.
    suggestions: You can try to hand them pamphlets on MS or call them on their bad behavior it all depends on where your line of tolerance is and how much you can take. YOU might want to talk to an counselor to help YOU with them...then pull them into being counseled... 
    Whatever it's worth I am sorry that you dont have the support or understanding that you need.
  • shpc
    I have experienced just about everything that everyone here has talked about. It was getting to the point where my cognitive problems, depression, anxiety, mood swings, and debilitating fatigue were literally driving me insane, especially trying to hold it all in. So, I did what most people probably don't initially enjoy (but now appreciate): I talked about it. I talked about it ad nauseum, to anyone who would listen. I started with the husband. If he tried to blame something else for why I accidentally left a pot of food burning on the stovetop, or had to leave the room to find a quiet space, I would sit and explain it to him, several times if necessary, using any and every analogy I could explore. I would MAKE him understand why I felt the way I did. It was difficult at times. He reared against me, often continuously telling me that he "got it"; but I realized that he didn't get it until he started to tear up because It hurt him so badly to know the truth. Then I went to the family. They wanted to tell me how great I looked. So I told them thank you, but I feel like absolute crap inside. I am depressed, lonely, and scared. They were shocked, to say the least to hear this from a person who looked quite good actually, but also relieved to know the truth. Then came the friends. True, they want to listen more than others. I'm not sure why. Maybe friends can separate themselves more from the "reality" of MS, so it isn't quite as scary as it is for those closest to us (spouses, children,parents, etc). So, I am not sure if this will work for others. But the best part of it, is that it's like having a free psychologist -- you are able to vent to others, release that built up anger and frustration, and figure things out by talking (I believe that's what we all do anyway with a therapist-- at least that's what I do. I sit there and talk and seem to figure it out all on my own). I hope someone will find this useful. It can be scary and confusing at first, but it's quite liberating to feel like you can let it all out. What are we here for if we cant be free to express ourselves? Best of luck to you all and thanks for the great topic.

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