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  • Kelly_A_
    thank you Bkboo I am so glad I found this site its so nice having people to talk to who knowhow and what im feeling. I actually told my husband he should come on here and look for other spouses or significant others he can talk to and help him through this. I know this is my disease but i know it will affect my family too. I still haven't let it all sink in that my life is forever changed but i know it has. the hardest part for me is the limitations I already have and knowing that they will get worse but not knowing when..  
  • Bkboo
    Kelly, dont wait for the MS and assume it will get worse. I know its scary, I wake up with fear about what the heck I will do and what if this or that?! Its crazy making, but I have to tajke care of me...stretch, relax etc..to counter the stress. Also you dont know that the MS will get worse, remain the same or even get better. You just dont know. This disease is baffling and hard to figure out. I know dealing with loved ones and wanting them to get it can be frustrating. But I also know i am hypersensitive about it and needed so much their understanding. It made me feel so alone. I get what I can from them and go to people who have it and get support.  But no one could possibly get what we are going through unless you have it and actually experience it. Family and loved ones care and love you...understanding this disease is confusing to me. I have to take in a day at a time even an hour at a time. Hang in there!
  • Bkboo
    sharon46, 20 yrs so yes its thrown me for a loop and defintely ticked me off! my shoulders are in my neck for pete sake but I am going to go and write whats positive and journal.
  • Bkboo
    I have also had people say its age and they experience it too..My doctor says people say it to try and relate but they dont get it. And that I can  tell them times 50 or 100 and thats what I dealt with....its not just age I say and let it go. I have to remember I have to take care of me and not stress trying to get them to hear me and understand, when theyt cant.
  • Bkboo
    i have a difficult time understanding MS so I dont expect they will understand so I just take care of myself...regardless what they say. I choose not to try and make them understand because i think how could they if I dont understand.....I try to accept
  • Pharmdog
    Bkboo wrote: i have a difficult time understanding MS so I dont expect they will understand so I just take care of myself...regardless what they say. I choose not to try and make them understand because i think how could they if I dont understand.....I try to accept


    Bkboo,

    From the standpoint of a husband and caregiver of someone with MS, your comments about the loss of friends and family as well as your refusal to explain the MS, and your feelings, is painful and of great concern to me.

    First, those of us who don’t have MS may seem a little slow on the uptake; but if they are your friends, and close family, they will WANT to know and understand what you are going through.  Your refusal to even try to explain hurts them as much as it is hurting you.

    How is it hurting you?  The anger, pain, (and yes) depression, over your MS and what it is doing to you, is normal.  The best way to get over them, and beat them, is with the help and support of family and friends; and the best way to get their help and support is to take them into your world and help them understand.  And maybe, just maybe, helping them to understand will help you understand.

    As someone who has been through PTSD and the associated depression and sleep deprivation, here is something else you may want to consider: It may NOT be the diagnosis of MS that is chasing away your support; it may be you lashing out at them from your anger and depression.  If that was to blunt, (I was never known for sugar coating things, a combat medic usually does not have that luxury), I apologize up front.

    PD
  • maria1
    I always thought I was a gazelle, now I see I am a turtle. Moral: reality is what we see or our experience is not in alignment with reality. Accepting ms and the changes it makes to our mind and body is our new and never ending challenge. Who am I? Like the shorefront I am ever changing. Sometimes my mind has me stuck in the past as who I was yesterday. "Normal"people live in a stagnant universe. We are always in a new environment. Every day is a new universe to us. Once the mind realizes that everything is new and different it then can adapt with ease. Message to subconscious: all is new and different, every day and every moment, do not expect the world of the same, it will make you insane. Like the stranger in a strange world, suprise, expect nothing and you will have a better day, expect the same and you will experience disappointment. Keep doing whatever you do to maintain your self esteem. Rest before you get tired, and when you are tired, open your eyes and enjoy what they see around them. We are lucky, we get to have time to smell the roses. See what the 'normal' are missing. think happy thoughts and giggle.
  • grama5559
    Bkboo - I had symptoms for 17 years before being diagnosed 2 years ago. At time of diagnosis my entire left side of my body went numb and stayed that way for 3 days, also was having trouble finding right words to get out and equilibrium problems. They did a baseline congnitive test at time of diagnosis. It was a battery of test administered my a neurophsycologist. For months my co-workers and my boss and Drs. that I work for have complained that I cannot multitask anymore and that my memory and attention span is not good. I am close to loosing my job and am very scared. I once again was given the battery of test for cognitive problems and the results showed that my cognition has greatly declined and was advised to apply for SSDI. But to expect to be turned down several times because it is cognition and not physical! Am stressing over what to do. I understand that people just don't get it that MS can cause cognition problems.
  • eacoomes
    i was just told that I have MS May of 2013 so this is very new for me. No major meds yet.  feeling all of those feelings, somedays i dont even want to get out of bed.  My husband and I dont have children still trying to figure out if children are for us NOW. 
    Any help?
  • hopeforjoy11
    My prayers go out to you I know what it is like not to be diagonosed for years. I hope you were treated during the 12 years Systoms go away but not MS. My continued treatment has stopped the leasions,but I too have problems remebering. I sit down and  take deep breathing exercises to calm down. Please talk to youd doctor about what you can do
  • jscruggszoo
    Laws are made to limit money spent on every person. Unfortubnately, only "physical" disabilities are recognized as disabling by our uninformed government. You really have to play their game and emphasize the physical difficulties you have mentioned here...along with doctor correlation.

    Yes, positive thinking is important, but both having MS and many of the medicines designed to treat it cause depression.

    Exercise on a stationary bike seems to help a lot with depression and feeling less than worthy.

    You're allowed to feel blue sometimes...

    Much love sent your way from a fellow MSer with 17 years of history (relapsing-remitting)
  • msandreaw
    I totally understand your feelings as some days I feel like I am literally losing my mind. I get angry when someone says you look good, because I have not felt good in a year.I have nerve pain in my back that I have not been able to get relief....I feel like I am a trooper and push through what needs to get done but I do it with pain, numbness and a mind that goes totally blank!  My husband says relax ,don't worry about things getting done, I say " If I quit living I start dying" so I continue doing what needs to get done.
  • Chachi22
    i know how you feel i cant except it either i have fibro  ms coccyx is shot i had a pain pump put in its taking to long to set it right im trying to do puzzles and read i can hardly walk the pain is unreal i had to give my dog to my son the memory is bad idont remember what people say and the repeating is bad people mad so i write things down that might help you i have note books all over the house ihave to take a notebook with me to doctors i know its bad you could do it i have secondary progressive you gotta do what you can do and rest i hoe you dont work i struggle every day think about what you can do and rest chachi22
  • tdebottis

    Diagnosed 16yrs ago....living well for the most part. Several relapses, several treatments later....still struggle. A lot of support around me but do they truly understand ? So many emotions , trying to stay strong for everyone else....But what about me ? Living in silence it seems to keep everyone around me OK.....

  • tdebottis

    <p> Diagnosed 16yrs ago....living well for the most part. Several relapses, several treatments later....still struggle. A lot of support around me but do they truly understand ? So many emotions , trying to stay strong for everyone else....But what about me ? Living in silence it seems to keep everyone around me OK.....</p>

  • Avatar
    I was in copaxone for year and a half, and I have the auto injector, the key for the injection is that you need to relax at the time of the injection, Thanks God since I found this wonderful natural product, I no longer injected more.Its called Peak Performance Brain Health, the scientists who made this excellent natural product are located in Idaho Falls. I recommend strongly specially to improve your health and have more energy.This great supplement will help relieve pain.
  • tnigro70
    I was like you were I had symtoms for a year or so then the attacks went away for 5 years. This year the attacks came on and symtoms stayed permanent ly. I was just now recently diagnosed, and have to accept the diseases is here to stay. I stay positive and reinvent ed myself so I can live to the fullest