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