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

Hello there,

I think it changes us all a bit differently and the degree to which we have AS. So a hard question to answer... your husband will probably identify with different answers, but not all.

Tim

Jeane, I very much agree with Kat. As a man who has been struggling with this misserable disease for almost 40 years, I'll tell you that you can never know how very important you are to Marty. Your attitude toward the AS monster will either enable or disable Marty. That seems like a heavy burden to be placed on your shoulders, but I believe it with all my heart. That burden is and will be made easily bearable by love.

Both you and Marty are fortunate that you have the wonderful attitude you have. In a lot of ways you remind me of my Lovely Wife, who has been there for me all these many years. Of course there were times we both were depressed, angry, and exhausted as a result of fighting the AS Monster. But I always knew that she meant her vow, "... in sickness and in health...", 100%

You need to answer your own question because AS is going to, and has changed you too.

Dean

Wow, Kat.... As ever, you've given me some food for thought. I do sometimes find myself struggling with crankiness, and need to work on some ways of dealing with that.
Steve too. Summed up oh so well.
Thank you for sharing.

Wait, as you said somewhere in this thread, answers from all around the world.... This thought came to mind: KickAS, more than the sum of our parts.

Dean,

You are so right. I've been thinking about my own answer. Funny how the tears keep coming each time I swear I've got myself together enough to try to answer it again.

When we said our vows 25 years ago, we said those vows to God, not just to eachother, with the knowledge that they would NEVER be broken. But, I really thought the "in sickness and in health" part would come in our late 60's or 70's. Little did we know that he had been symtomatic for 6 years already.

I have learned just how much I depend on Marty. He 'fills my heart with gladness, takes away all my sadness, eases my troubles that's what he does.' So when he retreats to the barn, it hurts. I pull back and distance myself from him. But that doesn't fulfill my vows, does it? Being on this site has taught me that he isn't abandoning me. Instead these are the times when he needs a long, lingering hug followed by plenty of alone time for him in the barn. I can't make anything personally. It isn't meant that way to start with.

Our dreams for the furure will have to be amended. Do we plan for disablity now instead of for retirement? I still pray that he will go into another remission period. Those ten years were good ones. I refuse to let AS divide us. What God gave us in this marriage was a good thing. I don't want to lose it. I love him too much.

Thank you everyone for helping me sort through everthing. Your candidness has been instrumental.

May God grant you with His peace.


Jeanne

Hi Jeanne,

Other than turning into a crispy fossil, it has changed me to not being able to do everything I used to enjoy doing. I was another athletic type, now I can't even clip my own toenails.

One way it has changed me mentally, is that I am way more considerate of the environment, and much more supportive for other people's health problems. I always was, but it has increased 10 times over.

During my teenage years, I used to get angry alot. Not like a maniac or anything, but I used to get angry about having AS, and used to tend to think everything happened to me because of having AS. For example if a friend didn't want to include me in just hanging out with other friends, I would think it was because of the AS. I still do grrr. lol. Anyways, I'm alot more laid back now.

Also, during my younger AS life, I used to believe I deserved AS for some reason or another, and it went on for years. Lots of negative things happened in my life that got me thinking that way. Not a pretty picture back then.

Stay away from becoming overstressed. I think this is what damaged me *mentally* for good. During a period of time (in my 30's) where everything was going wrong (including AS), I fell nose first into a very dark area of anxiety and depression. Ever since then I haven't been feeling like myself, starting at about 8 or 9 years ago I suppose. I'm always sick, very sick it feels like, even though I'm physically not. I feel things that normal people don't understand and probably won't ever feel. This hasn't changed me as a person though, I won't let it. I'm slowly making progress, and it has been great progress, but it still seems like it's a long way back out of the hole.

Take care,
James

Hello James,

Depression has stalked me since kindergarten. I always have to be aware of the path it wants me to take and run the other way. It is so easy to fall into that hole and yet it takes soooooo long to crawl out of it.

Jeanne

Well Jeanne,

This is something I'm just beginning to learn about myself. For the past four years, I have also been in a flare, if you will, and my marriage has suffered. My wife would exclaim in exasperation, "You aren't the man I married" which would only serve to further annoy me.

I couldn't see or accept the fact that I was changing but it is true. Chronic pain wears away at your mind and spirit. There are some who seem capable of remaining positive and cheery despite crippling and relentless pain but I am certainly not one of them. It works slowly and perhaps only those around us can see it? Things like irritability, frustration, easily annoyed, snapping at loved ones. The tendency to withdraw both socially and on a personal basis as well are also hallmarks.

After searching for four years, I finally found something that works and I'm rather glad of it. Medicinal marijuana has proven to be the trick for me. My wife now gets giddy and says, "There's the man I married" quite often.

I got my haircut yesterday and my barber told me that the change in my demeanor was like night and day between now and the last time he'd cut my hair (like two months ago or more...I was getting rather shabby). Hearing this from someone outside of my family really hit me. I wasn't aware of it but I had become quite an A-hole, it seems.

Essentially, what it comes down to is this...people suffering with chronic pain are often not very happy about it. Getting on his case will only make it worse.

Perhaps the best option is for your husband to try to remember that just because there is a pain in his AS doesn't give him the right to be a pain in the AS. If there were something for him to focus on other than his own suffering, he would be more pleasant to be around.

Don't give up hope, when he finds something that works you'll re-discover the man you married too.

Chris

You got a handbook?

I knew I got ripped off!

Chris

I didn't notice this trend in you, when we met Chris. You must have been on your best behaviour. So now I'm really curious to meet the man who's become so mellow.

A number of years ago I went through a black depression - really a living hell that I thought I'd never get out of. I wouldn't go for treatment for a long time, thought I could fix it myself - you know, the old pull yourself up by your bootstraps thing. Eventually I got help, although it took more than a year to bring me back to a reasonably healthy emotional state.

This physical pain pales in comparison to that black hole. I didn't want to live then - now I just want to live more. I regret all the things I can't do - hike, camp, canoe, pick up my baby granddaughter without help. I just feel like fighting tooth and nail to get as many of them back as possible. The disease hit me with full force shortly after I started an MBA program - no way was I going to let it make me give up.

What changed me was my mental illness (which I'm thankfully recovered from although I still take a very low dose of antidepressant). I see life as very precious, with or without pain, although I'd prefer the without version.