Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Just fed up....

Sorry to read your post Scotty, family is one place you hope that you can turn to for support when dealing with AS. We have not been in your shoes as of late, but also do like the advice to not act too quickly.

If communication is not the best between the two of you, can you seek some family counseling?

Best to you Scotty and your family that all turns out well.

Tim

Scotty, this AS takes so much from us. I know I'm not saying anything you don't already know. Now is the time to really dig down deep for strength ... for your kids, for you, for your wife.

I'm with the others who suggest you get couples counselling. She obviously doesn't understand what you are experiencing. By the same token, you need to understand how she's feeling too. Perhaps, with counselling, you can help each other understand by talking in a neutral space. Perhaps, you can find a way to make it work better.

I don't know that you want to hear this right now, but AS has not only stolen your life. It's stealing your wife's, too, by stealing away the man she loves and married. Often, as the person living with a chronic illness, it is difficult for us to see the effect our illness has on the people we love and count on. She has become the sole/main breadwinner for the family, which is probably not what she counted on. And although she has watched you struggle for all these years, I have a feeling that she doesn't want to acknowledge fully the toll AS has truly taken on you. That would be admitting that you are truly changed by the disease and that she must take time to get to know the man you are becoming. Which she probably feels too tired to do at the end of the day.

Maybe the kids can help out more? I think (correct me if I'm wrong) they're probably at an age when that is not unreasonable. Maybe you can put together a reasonable weekly schedule for everything that needs doing? I've found that if I'm in a really bad way, I work for 15 minutes and then rest for 15 minutes - all day if necessary. No, not everything gets done, but some stuff does. Enough that there's a difference at the end of the day. Have you shared the Spoon Theory with her? It's an awesome way to explain what it's like to live with AS.

First and foremost, my friend, you two need couples counselling (as well as individual done concurrently). With kids involved, you have to be willing to fight that much harder before you give up on the marriage. Sorry, but they deserve to have both their parents and they deserve to know that both their parents are fighting to keep things together. If you two give up on the marriage now, all they will learn is:

1. When your spouse is struggling, it's OK to give up on him/her.
2. Marriage vows are for breaking when things get tough.
3. They are not worth fighting for (because even tho this really has nothing to do with them, kids always think it does).
4. Love is disposable.

Scotty, you are an awesome human being, a wonderful man, who's been kicked in the head way more than is reasonable and because you married her, I have to think that your wife is probably very similar. I know you feel like you've done nothing but fight for your life these past few years, but this fight, for your kids and marriage, is another that is worth it.

Love and hugs,

I ca always rely on you Kat for enlightenment. Thank you. We have done the counselling thing twice already maybe the third time is a charm. Who knows....

Scotty...

Sweetie, I hope you didn't feel preached at or anything. Just saying what I think. I'm sorry if I upset you in any way.

Many hugs,

I feel for ya bro, believe me I do. I went through the same for many years. Now after being divorced for the past two years I don't know what's worse. That's something only you would know.
PM me if ya wanna talk,
Steve.

Oh no Kat..You didn't upset me at all. I enjoy your point of view always. You've been so good to me last couple of years when I'm in need. Thank You Kat!!

Scotty...

Hugs,

Scotty,

been there as well. It's not easy especially with children.

Hang on in and do not do anything without thinking it through first.

I know we get used to pushing to the limit all the time, but unless someone has been a top athlete or had some major trauma or disease they will not have any idea.

It split me up with my wife, and a similar thing later with my de facto partner. ( i did do alot around the house and the kids and worked a lot of overtime ) It's fixed now but it took along time > 5 years.


Dave

I hope things work out okay for you. It is hard when one person works and the other stays home for the person who works to not get resentful. Even if she is trying to be understanding, it's easy when you're tired from working to think that the person staying home has it so easy. I have stayed at home before while my husband worked, so I know how you feel. Everyone tells you things to do and expects everything to be perfect because they think you have nothing to do. It's not a lot of fun and when you are hurting it's really hard. If she is open to counseling to work through her feelings of resentment/fear/anger there may be hope.

Sorry Scotty, I really am. I don't understand why those of us with AS have to endure the emotional pain, which to me is sometimes worse, when a spouse really doesn't get it. I too wish there was this magic button.
Cindy