Quote:
Originally Posted by dizzie lizzy
I am so sorry to hear your despair. While I am still searching for a Dx on some levels I absolutely know how you feel. There is no way of knowing yet for me whether I am going to end up having something totally easy to fix or if I am going to dissolve into a writhing mess. I'm having a particularly hard day today too. I can't get my brain and my muscles to speak the same language today. Every little movement is a struggle. On Sunday, I had "an episode" and it was really embarrassing. I was at rehearsal for a show (I used to be an actor full time but now I amswer phones for a living b/c I can't physically audition) and I was briefing the hosts for a mock interview they were going to do with me about my non-profit. I had been fine and then I got up to walk to the stage and my knees buckled on every step. Of course, they don't know what's going on with me (although the director does) so the host asks me what I did to my leg. Having to explain that my leg is fine, it's my brain that's not ok was hard enough, but then I start to explain my non-profit and as I am talking I can feel myself losing control over my tongue and I know I am starting to slur. Then the words start to get harder and harder to find and I know I am either going to hit a wall of wordlessness or I am going to say something that doesn't make any sense. It was mortifying to have to tell the director that I can't have to talk right now. He was very supportive but I knew that nobody else understood what was going on. It happens at work and I can hear people talking about how they are tired of all this stuff and assuming that when my knees buckle or I am too dizzy to put mail in the mailslots that somehow I am being "overly dramatic" as if I would put it on just to get this unwanted attention anyway. While I don't have exactly the same problems I do understand how you feel. My life is running at about 30% from normal and I have no guarantee that I will not decline further.
I try to have the attitude that I am not going to allow myself to be any more miserable than my body requires me to be. So I cling to my friends who are supportive. I go out with them and my fiance. I do as much as I can and I plan for my illness to get in the way and screw me up. I always have someone with me when I do hard things just in case. I'm not saying it's easy or that you should be able to be in that place. I'm not saying you just need to get over it- because I understand that isn't possible. But maybe you should call your friends who want to be there for you and talk to them about your pain and what's become hard for you. Let them in on it and let them be there to support you in living to the fullest your body will let you. It is the only way to fight it. I am a fighter - always have been- probably always will be.
Anyway, I hope my words have brought you some comfort on some level. Please don't give up. If you want to chat today, PM me. |
[/QUOTE]Thank you so much for answering. You're right; I do feel better today. I guess it was just one of those nights last night. I'm not usually a negative person but sometimes it's hard to find something positive to say or think - especially when you can't think to begin with - ha! I'm sorry to hear about your troubles, too. It's that odd that hearing of someone's troubles seems to make our own seem mild??? Or at least less important for awhile? Actually, although you could have never known it from last night, I am a fighter, too. I have had to fight all my life, in one way or another and, even though my doc is not encouraging, I DON'T intend to lose something like this. I kind of think that our bodies are made to heal themselves and I believe that it will, somehow. Positive attitudes can do wonders - remember that! If I have to do this, and you helped me, then you have to, too. :hug[QUOTE]