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#268874 - 10/09/14 09:35 PM Need a wives perspective
deguzie Offline
Registered Visitor

Registered: 10/08/14
Posts: 2
My husband has AS and has been experiencing pain for about 20 years. We have been married almost 5 and together almost 10. His neck is fused, part of his upper back is fused, I know his hips have adjusted and he's missing a lot of cartilage in his joints. It's painful to walk, he doesn't sleep well and is not taking anything but aleve for the pain. I do forget sometimes how much pain he experiences and that's because he keeps it from me.

Just recently we hit a bump in our marriage and he wants me to decide if I want to stay with him or move on so I can be "happy". It's the hardest thing I've had to hear from him. I've tried to be supportive over the last 10 years and do all I can, but he feels like I'm dying a little every day by not doing the things that make me happy. Our sex life has definitely died down and changed and this is also causing some issues.

Are there other wives out there that have had to face the same issues or can you tell me what you are experiencing with your spouses in the advanced stages of AS? I don't want to leave but I need to know what to expect.

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#268886 - 10/10/14 12:19 PM Re: Need a wives perspective [Re: deguzie]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1607
Loc: MS
He says he thinks you are dying a little every day... is he right? Do you feel trapped? Resentful?

I'm not trying to put you on the spot, and I'm definitely not judging you. Everyone has their breaking point. But you need to honestly evaluate your feelings and expectations.

On the other hand, maybe you are OK with the situation, but he feels guilty and is projecting these feelings onto you.

Either way, is there someone you can talk to about this? A counselor or minister? Would your husband be willing to participate too?

I don't have a spouse with AS, but I do have a spouse who is disabled. He has heart and lung conditions and is not able to exert himself physically. He gets winded if he has to walk more than 20-30 feet, and has to use an electric wheelchair a lot. He also has severe osteoarthritis, which means he's in pain most of the time.

It makes me sad that there are some things that we can never do together. It makes me mad that nothing can be done to improve his situation. Knowing that he will never get better, and will probably get worse, is hard. I've had to come to terms with my feelings and learn to let some things go. I've had to allow myself to grieve the life we will never have, the things we will never do.

Don't discount the grieving process. It's an important part of dealing with a chronic condition. Each of you needs to acknowledge your grief and work through it.

In the end, I'm happy with our life. There are some things I do without him, and he's OK with that. There are some things I don't want to do without him, so we don't get to do them. It's not fair, but it is what it is.
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#268918 - 10/13/14 08:51 AM Re: Need a wives perspective [Re: deguzie]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1607
Loc: MS
You didn't ask for treatment advice for your husband, so I didn't offer any in my previous post, but I can't help but wonder why he isn't on anything besides Aleve. It sounds like he doesn't have his inflammation under control. Has he tried other NSAIDs besides Aleve, and at prescription strength? What about the biologic medicines: Humira, Enbrel, Remicade, etc? DMARDs like Methotrexate, Sulfasalazine, etc? Can any of the joints with lost cartilage be replaced (hips, knees)? Would muscle relaxers help him sleep better?
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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