How bad it hurts!

Good for you LIindilu, being as independent as you can be...I admire you for that so much, as I know how difficult and challenging ataxia is, and imagine MSA is more so!!! Sounds as though your husband has much respect and love for you and you for him. You have a very positive attitude and thats half the battle! Hugs to you... ;o)

Hi Butterfly,

I'm really sorry that your having to deal with all these emotions with this and your ataxia at the same time! I think there are probobly a few issues going on with you and him. I hear that you both are a bit frearful about your life changing and don't know where that will lead which is not unfounded for either of you. I think the advise of the other's is right when they talk about conceling. If he won't go with you I think someone can help you out talking with you and getting a game plan down for you. I think if you present a strong feeling of a matter of fact with him before you go somewhere and let your needs be known he has a choice to work with you or not. Sometimes someone close to us (I'm thinking of myself and my hubby too) feel better if they aren't depended on so much and we can control a little what happens to us and that includes our future.

Having ataxia I've found out that ataxia can weither your body away fast if we let it. If we stop continuing to work on keeping what we have or even being hopeful that we can get part of our body stronger to help us out. I see a diffrence in my relationship to the better because I'm choosing to take a little more charge of my feelings and thoughts and not relying on him so much.Emotionaly I'm getting stronger and stronger(I pray for more strength) so if he acts up it doesn't bother me anymore (most of the time anyway :0) ) I reaize that he gets so overwhelmed by what I can't do along with all his other duty's he needs to get done. Well, I now focus on what I can do and work on making that even better. I think he see's that (not that I do it for him to see it either). Somehow not caring about that comes thru. I also pray for God to give me more strength to not be offended before I know I need it. I believe he helps me when I go through it. The other thing I do is (under my breath so he doesn't hear me) I say, God help him, change me! (meaning since I believe that everyone has a God or a higher power. I even say God take care of him and help change the way I feel about this cituation. Time has taught me that I now know I can't do without God. When I trust God Joy comes! :0)

Thanks to you all who replied. It's nice to know you all care. I know he cares, he is probably just scared. I think it must be really scary for him to see me go through this. It is very, very hard for me too, but I am sure it effects him also to see me go through this.

I know how you feel sometimes. My husband is very good but I often shed tears over something my daughter said.

When I think of all the sacrifices I made for her.Yet she is always the one who thinks about my needs and she is actually very good to me.

My husband was appalled when he read your post.

I think what hurts is that some don't recognise it as as a disease.

How can I explain why I hang onto door frames and can't walk though them; it seems potty to the other person but some one with ataxia understands. Keep your chin up and put your mental health first. The emotional part of this disease is possibly the worst.We need understanding not criticism.