what's the deal??????
 

I guess that what I have is techinically a movement disorder - Shy-Drager's - and I handled it well for a long time but I'm having a hard time right now dealing with all of the uncertainties of it. For instance, the hardest part for me at this time is the inconvenience of passing out so very often - sometimes as often as 3 to 8 times daily every day with no warning. It has done quite a number on me physically as well as emotionally. My social life has taken a total nosedive because, as I said before, so many of my friends took a hike. And I've found that lately I've completely shut myself off from all the others. I very rarely talk to anyone because my head and mouth don't coordinate and I end up saying totally stupid things a lot of the time, or feel that I do. It's very hard for my husband to deal with because he's seen such a big change. I try so hard to put on a good front for him but he's the one who sees me pass out most often and, for the last couple of month, I've had pretty bad seizures along with it. The odd thing is, I don't remember anything about it later and he tells me what's happened. He works during the day and I'm home alone to deal with it myself for about 10 hours everyday. I don't usually go anywhere because I wouldn't dare embarrass him or myself by doing this in public. I mean, I've done it in public before and it's humiliating.....at this point I just want to die ASAP - or sooner. His family no longer has anything to do with me because they say that I should be stronger and just stop it. Of course, that's what they said about one of his uncles who had MS and finally died from it - he was weak and lazy and could "get over it" if he really wanted to.....So much for support. I know that some of my friends really want to be a part of it all, along with my priest but I just want out of the whole thing and, if I could die, it would be the happiest time of my life. My neurologist has already said that there's nothing more to be done and described what is to follow....not anything that I really want to experience. He really doesn't act too happy to see me and I haven't seen him in about 10 months. I don't see the point of going there if there's nothing that can be done.....kind of a lost cause. I feel as if I'm at the end of my rope and haven't decided that it's worth tying the knot in the end of it yet. At this point death just seems very, very welcome - especially since I'm told that it's coming anyway. Why not hurry it along??? Is everyone else on here in constant pain and, if so, what do you do? How do you deal with it? I'm already on tons of pain meds, including fentanyl and percocet.....it's just not getting it anymore. Don't you just get tired?

Keep going
 

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. :hug:

dizzie lizzy...thanks so much!
 

:hug:[/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]

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. :hugI'm glad you're feeling better. I do know that sometimes you just need to let it out and this is the perfect place for that! Glad I could help too. It is inevitable that we'll have low times. I am so glad to have this place as a resource. I can't even imagine dealing with this only having access to people in my local area who I happen to already know!

Reach out any time- and if you want to PM me too.

Fight the good fight. :hug:

Hi Chick and Lizzy
 

It's not common to meet people with or talking about Shy Drager's. I would like to know if either of you have had adrenal function test as part of your assessments? Were the results normal?
Hope you are still around, I will check in again
Nick