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  • MS_Navigators
    Many MS symptoms, such as pain, fatigue and cognitive challenges, are not visible to the people around us. This can make it really difficult for them to understand what we're going through. How do you explain invisible symptoms to people who don't have MS? Have you found any tricks for helping them understand how invisible symptoms impact your life?
  • oldhippie
    Well this is a new one fore me posting to a discussio of the mputh; but here it goes. I am still working this side of things, I have tried to tell people but really don't think they get it I always telling them what is happening but times I can't say the words. You see I am fighting the same battle from two ends, yes I suffer with PPMS but at the same time I learning to deal with a TBI I suffered over three years ago in a car accident and this has really slowed me down, by the way for any one dosn't what a TBI is is a (Traumatic-Brain-Injury) and with both of these working against me it has become vary hard on me.
  • kdmathison
    I'm so sorry you are going through so much. Keep hanging i there. It sounds like you are a strong person.
  • maria1
    I wanted family to understand what I was going through, but gave up when I announced I had ms and one of my relatives said, "oh no you dont!'  

    After a time  I got it! It was not about them understanding, it was about me understanding. Once I realized I was speaking to myself  it was easy not to care or pay any attention to them.

    That freed me, to take care of myself, learning to say I am unable to do that..... no matter how hard they begged.
  • debra70
    I can hard for me to multi task. I tell others it is like learning to walk and chew gum at the same time





    maria1 wrote: I wanted family to understand what I was going through, but gave up when I announced I had ms and one of my relatives said, "oh no you dont!'  

    After a time  I got it! It was not about them understanding, it was about me understanding. Once I realized I was speaking to myself  it was easy not to care or pay any attention to them.

    That freed me, to take care of myself, learning to say I am unable to do that..... no matter how hard they begged.

     
  • joannec592
    It's taken me years to understand that, and I still feel guilty at 76! I guess my Catholic upbringing doesn't help. Best wishes.
  • katty85

    Cognitive challenges and fatigue are what effect me daily. I never knew I was exhibiting symptoms years before I was diagnosed. I thought becoming clumsy and forgetful were just signs of getting closer to 30. I thought my fatigue was me being lazy because that's what my husband or mom would tell me. My symptoms cost me my career because I forgot something so simple. I didn't know at the time that multitasking is no longer in the cards for me. Had I known months earlier, I would have slowed down! After 6 months of being unemployed i've attempted to get back into my field (even as part time) but I can't seem to get through an interview. I've even tried for different jobs not in my line of work and I can't remember anything. "Name a time when..." "Can you tell me when..." No, I can't because I don't freaking remember!!! My mind is so blank! So horribly blank that I can't even hold normal conversations with people. People tell you they understand until they're frustrated by something you do. Then they're not so understanding. "How could you forget?" "Why can't you come visit?" "Why is the house a mess?" "What do you do all day?" "Oh, you don't want to talk to me. I guess you're mad at me." Some days I am so fatigued I can't get off the couch. I've tried exercise and even 10 minute walks can put me out for a week. I'm trying to see if I can see a cognitive therapist but they're either booked up or don't take insurance and I cannot afford out of pocket. I feel like a broken record sometimes and I just yell "IT'S THE FREAKING MS. I CAN'T HELP MYSELF!!!" Then I feel guilty because I feel like i'm making excuses all the time. None of this helps my Bipolar Disorder either. Just makes my mood swings so much worse. I just want to go back to a time when my brain functioned normally.

  • beaurylancambria
    It is nearly impossible to explain to someone else, when it makes no sense to you and your living it! My MS symptoms come and go. When its good, its great. When its bad, its awful. I think because we are constantly asked how we are feeling, I almost always just say " Im fine" either because I know they wont understand or they really dont care. Saturday night I went to my neices wedding. I was feeling good and danced all night. It was the first time in a very long time, that I had felt that good. When we left the wedding, I told my husband " I will never be able to convince anyone in my family that I am sick." He smiled and said " True fact! "
  • tnigro70
    I'm right beside you there! It is very hard to get people to understand any invisible symptoms. I have struggled more so than ever the last month with memory issues that it's hard to even explain to my doctor. I have had slurred speech at least 3 week s out of the month and can get very fatigued after excersise. The memory issues are the most scary for me because at times I forget my grand daughter name. So sad.
  • jruleiv
    Hi Katty85, I just want to say that I totally understand what you are feeling and I very much sympathize with your situation. I suffer a few of the things you are talking about. The biggest one in everyone thinking I was lazy. I would get so fatigued and over do it that after my shift I would throw up on the way home or after I got there. All while having an aweful headache from the fatigue. At the time, I didn't know what I had. I also, struggle with bipolar. I have hurt people I care about. If you can, give them literature on our disease or take them to appointments so they can see and listen for themselves. In my case, it helped. Surround yourself with great people. True friends! At this point in our lives we don't need the stress of trying to convince someone what we live with. Best of luck. We are all just looking for someone to talk to about our disease. Not convince. If you would like to talk outside of this, my email is jruleiv@yahoo.com. I would love to talk to you!
  • momof2teens
    I dont know how long or short anyone has had MS.. and as it is written, no 2 are the same... what an unstatment!!! Ive had MS for 29 years... When I was first diagnosised  it seemed like "Oooo the newest disease out there lets figute it out together" as per my family... at the time.... Life continued  Maried, gave birth 2 times...devoted  to my family...and I learned to deal and fight this from a positive point of view...and I do still... for the most part,,,,I was wonder woman...got involved in PTA, teaching religion, actually had a social life...
    NOT anymore.....when I had been experiencing something new, I'd always think it was something other then MS....I was wrong...more times than I care to remember this has been the case. 
    Invisible symptoms....is a simple term that is used... until it is written that it IS PART OF MS...
    At this point in my life, my 20yr old and 17yr old daughters don't understand anything that Im going thru, regardless of any efforts over the years of my trying to explaint and educate them....As you can see, I can write (type) out my words... teenagers dont have time to read anything unless its on their phones.....
    To go back to when I WAS functioning normally would be great.... memories is what I have now.
  • hopeforjoy11
    Please do not give up. When I first showed signs of MS in my mid fifties they said the blurry eyes and other problems were my age. Pleas check with your local hospital or this site the National MS society tfor HELP> You need to get help with expenses if needed or a focus group that you can take your problems out. I wish you luck
  • kdmathison
    I just want to let you know you're not alone. I experience many of same symptoms.

    I have Bipolare Disorder as well. MS and Bipolar don't mnix well at atll. It's a vicious cycle.

    If you can't work, have you thought aobut disability.

    If you want to chat, let me know. I'm very new to this site.
     
  • debra70
    katty85 wrote:

    Cognitive challenges and fatigue are what effect me daily. I never knew I was exhibiting symptoms years before I was diagnosed. I thought becoming clumsy and forgetful were just signs of getting closer to 30. I thought my fatigue was me being lazy because that's what my husband or mom would tell me. My symptoms cost me my career because I forgot something so simple. I didn't know at the time that multitasking is no longer in the cards for me. Had I known months earlier, I would have slowed down! After 6 months of being unemployed i've attempted to get back into my field (even as part time) but I can't seem to get through an interview. I've even tried for different jobs not in my line of work and I can't remember anything. "Name a time when..." "Can you tell me when..." No, I can't because I don't freaking remember!!! My mind is so blank! So horribly blank that I can't even hold normal conversations with people. People tell you they understand until they're frustrated by something you do. Then they're not so understanding. "How could you forget?" "Why can't you come visit?" "Why is the house a mess?" "What do you do all day?" "Oh, you don't want to talk to me. I guess you're mad at me." Some days I am so fatigued I can't get off the couch. I've tried exercise and even 10 minute walks can put me out for a week. I'm trying to see if I can see a cognitive therapist but they're either booked up or don't take insurance and I cannot afford out of pocket. I feel like a broken record sometimes and I just yell "IT'S THE FREAKING MS. I CAN'T HELP MYSELF!!!" Then I feel guilty because I feel like i'm making excuses all the time. None of this helps my Bipolar Disorder either. Just makes my mood swings so much worse. I just want to go back to a time when my brain functioned normally.


     
  • AnnMarieP
    I'm so sorry.  I resonate with some of what you are experiencing.  Have you thought about trying for Social Security, either SSI or SSDI depending on your previous work history?  They are better now about recognizing MS, and it might give you a platform from which to try to rebuild.
    You are in my thoughts.  AP
  • jlw1200
    I don't think anyone can ever understand the fatigue. It's not just an exhaustion because you worked too much in a day or in a week. It's not because you didn't sleep well one night. It's not because you're so depressed you just mentally don't want to get out of bed. 

    Its so so much more than that. You're weak, and then you have to fight your own body to stay awake with the little energy you have.

    A couple months ago during one of my fits I would fall asleep just from doing simple tasks. I couldn't keep myself awake just to eat. My sister and mom would always have to move my plate of food so I didn't drop it or lay my head in it. Driving is difficult-especially long distances. 

    Even my neuro hasn't really understood the extremities of it. All they did was prescribe me Wellbutrin. 
     
  • methiamel
    I can relate to what you are going through since I'm going through it as well.. You can have lots of rest but still feel overwhelmingly drained. As for me, my body will feel so heavy, even sitting down seems to take so much of effort. Hang in there. This phase will pass. I have to believe it myself that it will. ;0) 
  • oldhippie
    So I put a repose on here late yesterday, looked back at it just now and saw what I didn't say. So let me finch it, fatigue comes at me like a steamroller everyday about noon or so just when I really have to get started, and with it comes the headaches some days more then others. That is always right when some one is in my face for not doing something they thought I should have done.
      Trying to explain why and actually thinking that they will understand what you are telling them is not a reality, first off I have a vary hard time thinking of the words, then I can't seem to get the words to come out of my mouth in a way that at times sounds like english so in turn I tend to just not say anything.
      And so in turn I find that because I can't get them to listen to what I am trying to say, I find that they don't and never will understand what it is that I am living with(MS and TBI) together attacking my brain and nervous system all day everyday is becoming a challenge for me that I fight everyday and feel I am losing the battle.
  • maria1
    Hey Frank, When that happens to me I later write it down and present it to my partner. Remember the other day when you were upset and i could not find the words, well, this is what I could not say................ and sometimes it is two pages long.

    Just because you can not say it now doesnt mean it is gone forever. Remember, getting stuff out of the head is what is important, dont stuff up the brain with things you want to say and dont say, that will only build regret. Also, date what you write so you can look back and see your progress, because  the more you communicate the better you will feel. Sharing struggles teaches all of us.
  • xjahr
    No one understands except for those of us who have it. You don't get it until you get it. Tell us on here, we'll listen & we understand.