Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group This disease changes you

Back when I was stil lurking, I read a post to a woman who's husband has AS. The wife needed help coping with the dx and with her husband as he adjusted to the dx. Lon had responded to her and said, "This disease changes you." Those words screamed at me.

Marty's current flare has lasted for about four years. In that time he has changed. But he is a man of very few words as you can see from his posts. I know that trivial things that people argue about irritate him. He has little patience for that kind of talk. But I know there is more.

Could you please explain how this disease changes you. Sometimes I show him different posts from the site and he'll say, "Yeh, that's what it is like."

Thank you in advance for your help.

Jeanne

Hi Jeanne,
Thats a difficult one to answer it affects us all in different ways.It can change your attitude to life, some people like me become very intravert stop talking about the pain and problems there having keeping it all to themselves. You can become reluctant to go out or be around other people.Depression is a big part of AS.Some people can cope better than others.
Any questions please ask.If you would find it easier PM me

Kevin

Here's what I will say on this.

FIrst life hopefully changes all of us bit by bit and sometimes drastically in a short time.

AS has two factors that have changed me and continue to mold me.
First is my more calm and rational mind that acknowledges that I am dealing with this pain and loss of my body as it was on a dialy basis. It makes me (here's comes an oxymoron) extremely intolerant of intolerance and folks who will rage over or dispute trivial matters. If I can deal with folks rationally and warmly with my aches and sub-par body then why can't other folks appreciate all they have and be patient and kindly towards others. If I'm aware of the benefit of being cordial and civil then why is the fool behind me bearig down on me at 80 mph to get home to watch tv. I have a long fuse for folks who are troubled and a short fuse for folks who are trouble and the difference between tthe two is transparent.

Second when the pain is exhausitng my fuse is short just out of frustration or inability to do something simple. I'm not actuall angry I'm just exerting so much effort and concentration to keep focused on the task that an interruption or even something like a conversation feels like and is work to a level that others don't understand

Hello Jeanne
Everything that happens in life changes you, including living with AS. You have to learn to accept and change your attitude (not always an easy task). And you have to learn to stop feeling guilty about things. Your husband could feel he has spoilt your life together in the same way that I feel I spoilt my son's life by passing on this gene.
He sounds depressed - a common side effect of chronic pain.
He has a lot to put up with - pain and frustration, depression and guilt.
I think it might help him cope with his feelings if he came here more often and read how others struggle. This site gives so much support. And when you read what people achieve it is so encouraging.
I hope he starts to feel a little better and that together you build a life that you both enjoy.
He is so lucky to have such a supportive and caring partner.

Exactly!

Oh, I am *so* with you on this one, Steve!!!

Wow.

Does it make any of you nervous that Steve so hit this topic on the head. Very insightful way to go man!
ETTE.
Darrel.

Yep I am with Steve on that one also.

I have a very short fuse with people who are just stupid or pick on small details.

For example this morning taking my daughter to school. There are bike lanes on the sides of the road so in the morning on the school side of the road you cant park there between 7-9am I was running late so when I arrived it was right on 9am. So I parked in the bike lane as it was after the 9am no standing time. The cross walk lady cracked at me and said I couldnt park there bla bla bla. I said excuse me but I can park there after 9am and it is 9am. She was like my watch says it's 8:58am.
Im like WTF 2 mins. My watch says 9am yours says 2mins until 9. Does it realy matter grrrr all the kids are in class already so it is obviously after 9 and no kids should be riding to school now.
I know I shouldnt have snapped but in the big picture does it realy matter.

This is how AS has changed me.
In the past I would have calmly explained to the cross walk lady but now I just about chewed her head off.
I have a very short fuse for this kind of trivial things.

Shhh... Steve doesn't want anyone to know he's so smart. That's why he has Bruno.