The people who "denied" my illness were my parents and my son. My husband was always immensely supportive over our 40 year marriage. But my husband died 4 l/2 years ago, so i am alone. I reach out to church people, even though their support is not as complete as my husband's. At least I have people I can talk to, who have problems too. A lot of people in our church are sick one way or another.

I find life is, in general, one big tear drop, with a few minutes here and there where the tears dry up. And I have to face that's what it is. Counseling is good but there will always be tears remaining, nearly every day.

This runs so contrary to the "smile and the world smiles with you" advice I grew up with, the "grin and bear it" advice, and especially the advice that we can always achieve happiness if we just take the right attitude. There may be a place deep inside us where happiness CAN be achieved in spite of the odds, but it is not easily found nor easily maintained. I have learned how to be calm and hopeful, but not how to be happy with the circumstances in which we (not just I, but the big WE) find ourselves.

I'd like to "beat" these peeps about the head and shoulders, who
have the nerve to say stupid things like this to us...GRRRRRRRR

Even my Neuro once said, when I whined about having to give
up driving., "Well, we all do what we have to do."

Classic Neuro-talk? (not all are that way)

Yes, it is hard, but please remember, this MonSter has come along and ***** up your future plans too. While I have a lot of sympathy for the situation your husband finds himself in, I have even more for you.

I hope that both of you can come to terms with this - there are some great ideas on here and it's only by approaching it honestly and gently that you will reach this acceptance and understanding - and it takes a lot of time.

(((( Mariel ))))

Well said Lynn and well worth taking to heart cd.

Sally: I think that people say those sorts of things because they lack the personal experience/insight and are at a loss for something more compassionate to say. Recently, when he said something similar to me, I think that I shocked my GI surgeon by bringing it into a perspective that he could better understand.

"That may be true, but imagine yourself waking up one fine morning in pain, only to find that you have suffered a stroke and that you can no longer think or see clearly and can not feel your spastic arms & hands; much less use them.
Your career, 12+ years of education, your independance and your future plans...all down the tubes. Would it make you feel better to have someone say to you in the midst of your physical and emotional suffering, "Despite even the best efforts, everyone's body deteriorates in some way over time?"

I remain hopeful that he'll remember that the next time he feels the need to spout off that sort of "wisdom."

With love, Erika

Oh yes, Mariel, I meant to say to you as well that I am sorry about the rubbish that was said to you.

Funny isn't it? I have lost people I thought were my closest friends over this? I haven't morphed into some kind of monster, and I certainly don't think I am any less of a person because I may have less physical ability in some way or another.

I had lost my dear Mum when I was diagnosed, but my Dad certainly couldn't cope with the prospect of my diagnosis. I think he blamed himself and didn't know what to do or what to say about it. He died shortly after, so there was never a resolution.

People cope in so many different ways - and often the people who have the most to cope with, cope the best.

I think I already posted almost the same thing I am about to say on somebody else's thread a year or two ago, but FWIW, here is my male perspective on why so many male spouses have trouble dealing with a wife who is Dxed with MS. As has been said, guys are "fixers" but more than that, society beats into us from an early age to help women, to care for the women that we love, and most importantly, to protect them. By the time most men are grown (if they are raised right), it is next to instinctual to do things like open doors, give up a seat on a bus, etc. for women. When we are in relationships, we want to fix any problem and protect you from any harm.

That is why MS in a spouse is so hard on most guys. We can't "fix" the problem...there is no cure...so it makes a guy feel kind of helpless watching the woman they love deal with something that they can't fix. And then there is the harm. When he sees you overwhelmed or in pain, or unable to do something, it feels like failure to him. Because he has let harm come to you and he can't fix it. For a guy who always had your back and who never let harm come to you, seeing what MS does can just be really hard. He may shy away from dealing with it because it can make him feel like he has failed somehow...or that he feels helpless knowing you are hurting and he can't fix it.

I am not saying any of that to justify how he has reacted as right. I just say it so maybe you can understand part of why he might be feeling what he is feeling. If it has progressed to where it is causing fights and interfering with intimacy, you really ought to try to get him to counseling with you. Any disease like MS is hard enough by itself, neither of you needs the stress of relationship strife stacked on top of it to deal with. Just understand that he is suffering too when he sees you hurting and in pain. He may hide his feelings (most of us do), but he is probably scared of losing his best friend too, and probably even more scared of having to watch it happen slowly in front of his eyes, while he is helpless to do anything about it.

Good luck to both of you, and keep talking here. This is a great place with wonderfully supportive people.

Thanks so much TX, You are a gentleman among gentlemen!!!

Super post Batman. And yes, I agree with Sally. You are a gentleman among gentlemen .
Thanks for sharing your insight.

With love, Erika

Aaaahhhh Batman...

That was lovely, and you are a man after my husband's heart. He has been my rock, my support and my champion. Sure, it hasn't always been super easy, but pretty much as you have described.

I think half the women on the forum are in love with you after your post..... and the other half want to be your mum.

Lyn