This is what is left....but I am ANGRY I feel rage

I have two main sxs left...I know it is not much but both effect me so bad that I am housebound. I have crazy inner electric feeling every minute nonstop 24/7 my brain cant handle input when I am outside as a result of that I get horrible feeling in my head as pressure or cotton head and my vision gets super weird. Like blurry to wide sight to strong colour or just grey. Too big too small objects. Trees looks really weird. I can see everything super sharp.  the sky looks really weird. When I am.outside my brain cant handle it at all I get desoriented like I dont know where I am but I do...My dog looks scary...

This is whats left from over 100 sxs but this is too much I cant cope with this it stops me from living. I was so close to the goal this make me fail...Damn I am angry angry angry

Does anyone else share this few sxs left that stop you from go out? Stops your life...

I understand exactly how you mean. Everything feels overwhelming and strange. Sometimes I get the feeling that everything is moving.

Others say we need to be outdoors more, and among other people. "Then you become stronger". But it has the opposite effect. All movements and sounds only create discomfort in our sensitive nervous system.

Do you have problems with weakness? I can hardly go to the bathroom.

I understand exactly how you mean. Everything feels overwhelming and strange. Sometimes I get the feeling that everything is moving.

Others say we need to be outdoors more, and among other people. "Then you become stronger". But it has the opposite effect. All movements and sounds only create discomfort in our sensitive nervous system.

 

Do you have problems with weakness? I can hardly go to the bathroom.

 

No not much. Some days. I walk with my dog several times every day. I have too. Fatigue is there on and off but my gait is awful. My legs feels weird. Now is it AWFUL I wanna scream of fear anger terror and torture. Its hard to wanna live like this but I dont wanna die either. I hate my life...

I can deal with all my symptoms except my inner tremor crap hellish torture...a never ending story. I am sick of this

I'm sorry Sundanceshaman that you are going through this. I feel your rage. My phone broke and I waited nearly a month to get it fixed because of being housebound and tripped-out (a little like you've described.) When I finally went to the Apple store it was a total sensory onslaught. My eyesight did very much what you've described above. I felt like I was spinning. I could only hear conversations far away but the ones closest to me were silent. I too feel robbed of my life. I don't know how much longer this will go on. I stay within these four walls trying to get better; understanding that I will probably get better more quickly if I venture out but when I do it only makes me exhausted.  I wish I had some answers because lingering in this limbo is getting kind of old.

I hope you are better soon. You're not alone. I don't know if that helps, but you aren't alone.

I'm sorry Sundanceshaman that you are going through this. I feel your rage. My phone broke and I waited nearly a month to get it fixed because of being housebound and tripped-out (a little like you've described.) When I finally went to the Apple store it was a total sensory onslaught. My eyesight did very much what you've described above. I felt like I was spinning. I could only hear conversations far away but the ones closest to me were silent. I too feel robbed of my life. I don't know how much longer this will go on. I stay within these four walls trying to get better; understanding that I will probably get better more quickly if I venture out but when I do it only makes me exhausted.  I wish I had some answers because lingering in this limbo is getting kind of old.

 

I hope you are better soon. You're not alone. I don't know if that helps, but you aren't alone.

Thank you Bluelady. It helps little to know when it is pitch black that I am not unique in this hellish state. I was out 4 times yesterday. I am supposed to travel to Thailand in 45 days and I sure need to push myself more. Tomorrow I have to go to another town to do some tests of my nerves in my body. They are freaking out like me. I know this is bws but my doc who is a neuro doc is very stubborn and say this is not bws this is a brain illness not mental..well tests will be normal.gaaahhh

That is so awesome that you are going to Thailand!

I have yet to find a doctor that knows much if anything about bws. But at least your doc is taking you seriously. That's a start. I hope your trip is a good one (the one to Thailand).