Search Discussions

Main Content

  • echobird
    Ok so I've been dealing with the loss of use of my legs. I've tried ampyra it was working for awhile then slowly just stopped working. Now I'm on the generic brand myelin. But I do force myself when I feel good and I end up in the same boat way worse. Some days are OK then I end up forcing myself to be up too long. My issue is OCD I believe. Also the belief that if I can't get better then I will just keep going down hill. I so much want to be able to walk and do things for myself but everyone thinks I don't.
    the one walker I use the most has a seat on it. But I do try and use this other walker that has the raised handles. The problem is that when I try to get around and walk I get spastic really bad.
    But ether way I end up with the spasms by the afternoon. It usually is after my back starts hurting too much I believe. But it could be that is coincidence. Ether way I've been going down hill but it doesn't matter. And my nephew pointed out that if it's not about me I get upset. But I feel like he's wrong yet he's right in some ways maybe. It's that I do need the help and that's his job. But on the other hand it's been tough and hard at times. And he's got his own problems to deal with I know. But at the same time there's a lot I can't do on my own. And I feel like everyone just makes light of it. When I do try I end up getting worse off or hurting myself or falling out or getting spastic and falling.
    Also I feel like the more stressed I get over everything the worse I get. Has anyone else experienced this? Does stressing and obsessing end up making your MS worse? If so have any of you found ways to cope with it ways to get out of this rut? I don't really have a clue as to how to cope anymore. And I still think that my stress has made matters worse. And I'm sick and tired of being like this.
     Now I tried to get my caregiver to take me to a therapist several times but still won't do it. I really think because I feel like everyone just wants to control me. And manipulate me and box me into a corner and get me into trouble.
  • dkw
    hey echo:)
    it sounds like you are in a place alot of us have been. it seems that you are in the position of having to make some Very difficult decisions about what you can and can No longer control with your body. there is a point in this progressive disease that life no longer works by Past rules of cause and effect. when you do this, it should do that. you exercise, you get stronger. your new view shows you in your new body, if you do, you could be down a couple days. Very confusing. and, add on, of course, that no One around can see or understand the true change in these processes. tough stuff. hold on, as maria might advise, breath. 
    and, if it helps at all, you are not alone. 
  • dkw
    Well, breathe, that is! Maria would have spelled it right! 
  • maria1
    Losing the use of the legs is a tough nut to swallow, and then there is the maybe, maybe it is stress tensing all the muscles making things worse, and wishing the family was the 'Father Knows Best" breed best of the bunch and having to face that they are not. You can not fix them, you can only fix yourself, and happiness comes from within, you can not find it outside yourself.

    And then there is the denial, things arent so bad, they are family and i love them, love has nothing to do with it. 

    How many issues will disappear if you disappear the family, what need are they fulfilling, self flagellation, suffering as a requisite for being alive, popycock. Time for you to choose, s  t or get off the pot, hanging on the fence is not being alive, so, do you want to die sooner or later? Are you happy with what you got? Do you really really really want things to get better? Take responsibility for your life, for your happiness, for your wellbeing, or do you want to forever be a child at the effect of others controlling your life? You are an adult, fix the worst first, have you seen the surgeon, you still have not answered the question? This is the last time I will support your well being, you have now the right to stand alone and choose what is good for you or rot with what you got. It aint easy making a choice, nobody said it was, but the life you are leading sucks by any standard, third world included. Please do something about it. maria
  • dkw
    I know this hit close to home. C’m on girl you are stronger than all of this. it ebbs and flows. we are greater than the parts. 
  • maria1
    dkw, only when we rise above them, Being a victim is a poor excuse for any adult, it serves children well because they can not fight back they are totally dependent, adults have choices.
  • dkw
    Sry Maria. As children we were told to accept. As adults, we know we dont have to. I dont know you, but I love you. 
  • maria1
    No reason to apologize, communication works to clarify thoughts. I forgave my family and am free. The child in me still experiences the pains but they were not any smarter than me, the only difference was my generation had birth control, giggle.
  • MS_Navigators
    Hi there, have you considered working with a therapist from home?  There are online counseling resources that can provide services over live chat, text messages, video chatting, email, etc. HelpPRO is a nationwide resource used by the Society if you may want to explore this: https://www.helppro.com/