Loved ones watching the dragon take over

[Guest guest]

Hi everyone-

I was reading the posting about their spouse having Stills and how they are

having such a hard time in their marriage. I feel for you. My hubby isn't the

" best " supporter but he does try. Like all the other spouse he just wants me to

get better. Well so do we. But not going to happen. I sometime think how hard

it would be to be the one not sick and watching the love of my life, my family

member, my friend be so sick and I can't do a dam thing. I would feel helpless,

hopeless, like I am sure most of you do. I can say I would be understanding,

but would I " really " understand and be patient with the ups and downs? The

cancelled plans? The complaining? The crabbyness? Not that we " stilligans "

like all that, because of course we don't. But to feel fine and looking forward

to something and then have it shot down at the last minute. Sucky, I know. I

do it all the time to my family. And they, to me are the most understanding. I

have never heard anything negative

and they never try to push me. But I do sometimes hear the disappointment in

their voices. Thats when I get so mad at the Dragon, because he/she is trying

to take my family down with me. I know being a spouse, not just a family member

is even harder. You see everything we go through, hear it all, etc... You get

the crabbyness more and the complaining more. I know I definitely give it to my

hubby more then family and friends. Because I don't see my family everyday, so

they aren't hearing it and seeing it day in and day out. I am not a complainer,

as it might sound. But I know that we all need to vent sometimes and our

spouses are our soft spot to land.

When I was first diagnosed my hubby and I were newly married and I told him I

would completely understood if he wanted to walk. I know that that is easier

said then done, but I seriously thought that. Why should we both have to

suffer?? Neither one of us signed up for this, but I HAVE to live with it he

doesn't. It wasn't easy in our case because we have a son. I think that if we

didn't have Bryce, our son, we wouldn't have lasted this long. That is sad to

say, because it isn't like we are staying together for our child, but he has

definitely helped ground us.

It was good to hear the other side. It is hard when you aren't feeling well and

in pain all day to " really " think that this disease effects everyone. I

sometimes get into my selfish mode, why me...me..meee. I get quiet, you know,

just irritated at the whole dam thing. I can't just complain and be in pain and

be miserable because he doesn't understand why I am acting like that. He thinks

that I am just in a bad mood. UH NO I have been having a bad day for the past 5

years. I am just showing it today. But I can understand where he is coming

from. I, too, would just want my loved one to feel better. Take the " magic "

cure pill and go back to living a " NORMAL " life. Is there such a thing?? I

forget. (smile)

But I wanted to say thank you for posting your personal stories about the

problems you are facing with being a spouse to someone who has Stills, it not

only gets you your answers and some advise but it helps us " the ones with

Stills " to understand the other side a little bit more. Hang in there and just

do the best that you can. All of you are very strong and special, having to

watch your loved ones deal with the dragon and having to sit back and watch it

take over our lifes.

Thanks for all the support. Keep posting. Stay strong and smile:)

Love and Support,

Keri in CA