Originally Posted by Cricket183

I apologize this is so long but I have so many thoughts and questions going through my mind. I'm not sure how to say/ask what I want to say/ask but my husband and I (mainly me) are struggling with the caregiver/disabled roles and I don't want it to ruin our marriage (23 wonderful years last month!!). Let me start by saying I in no way want to offend anyone who is a caregiver or make light of what you go through on a daily basis. I want to further understand it because the man I love with all my heart is going through it and I don't know how to help him (us). I have RSD/CRPS, Sjogren's Syndrome, and Palindromic Rheumatism (a form of RA). Up until 5 years ago I was a healthy wife and mother of two teenage boys (now in their early 20's). I was working full-time as a RN on an oncology unit and serving in the church alongside my husband in numerous ministries (he is the Minister of Music at our church) while taking care of the family, house, pets, and so on. Life was full, busy and very happy. Then within a very short period of time our lives changed forever due to my health. Life suddenly became a whirlwind of doctor's appointments, hospitalizations, surgeries, tests, medications, medical bills and diseases. At first the RSD/CRPS just affected my right arm and shoulder and I was able to continue working and do most things with minimal assistance. But as time progressed the RSD/CRPS spread and in March 2008 I was forced to leave work and go on full disability. The RSD/CRPS now affects both arms and shoulders, rib cage on both sides, chest wall, and my spine. It also affects my stomach and heart. And the Sjogrens and rheumatism have difficulties of their own. 95% of everything I use to take care now falls on my husband's shoulders. In addition to working full-time in ministry (which is way more than a 9 to 5/40 hour work week) he has to care for the house, the boys (who are fairly self-sufficient but still need advice and guidance--my oldest is 22 and a senior in college living at home and my youngest is 20 and suffers from chronic daily migraines and requires frequent trips out of town for dr. apts), and me. He seldom complains but I know it has to be a tremendous burden on him. If I could in anyway pick up some of the slack for him I would in a heart beat. Then there are the financial pressures. We went from making a pretty good income to living on his pay as a minister (which is meager at best) and my SSDI (which doesn't come anywhere close to what I was making as a RN). Praise God--He has provided for everything we need and we haven't been without a meal yet but the medical bills keep coming and more than once my husband has considered leaving full-time ministry (which I don't want for him) or getting a second job. More stress he doesn't need. I worry that over time my husband will resent me--not on purpose--but subconsciously. There is nothing I did to cause this nor anything I can do to change it and we both know that but I still worry that over time all the added stress and pressures will wear him down. And try as I might I can't help but feel like it is my fault that he is having to go through all of this. I don't want to be a burden to him. Does this make sense to anyone?? So, how can I help him through this?? I try to encourage him to keep an outlet. He is an avid cyclist and rides his bike almost daily. He is sometimes gone for hours at a time, especially on Saturdays when he can take a long ride and it's just him, his bike, and the open rode. It's also great exercise which I know helps with stress reduction. We use to ride together and I miss it so much!!! I also miss sharing in many of the ministries we use to do together at church and I am no longer able to do. I feel like I am becoming less and less a part of his life. How do I stay involved when I can't get out of the house for weeks at a time? Last year he went on a mission trip to the Ukraine and of course I could not go. I missed him terribly while he was gone but I grieved that I wasn't a part of it. I can feel us slipping apart and I hate it. Another area we are slipping apart is in the bedroom. We have always had a healthy sex life but the frequency has gone way down. Although we have found ways to adapt and make it where sex itself is not painful (the majority of the time) I often have increased pain for days--sometimes up to a week--afterwards. As much as I still find him desirable, I'd be lying if I said I looked forward to the pain after. Much in the same way he doesn't want to hurt me. The result is his needs are not being met. It's not like our relationship is all about the physical or anything but that is a very important part to him. I don't know if any of you have read the Five Love Languages by Gary Chapman or not but it talks about the way we show/receive love. My husband's love language is physical touch. When the physical part of our relationship is lacking he feels alone and unloved. That is the last thing I want him to feel and yet it is in direct conflict with this monster of a disease I have. So what do I do? He is such an honorable man he would never cheat on me but I almost feel like I am tempting him to it in a way. I'm not purposely withholding from him but we tend to avoid those things that cause pain. So what do I do? He'd be so much better off without me but neither one of us want that. So how do we do this? Does it get easier/better as time goes on and you adjust to the new roles life has handed you? I'll be the first to admit I am not dealing with all of this very well. I am hoping that some of you that have been through this can help me...give me advice. You all probably think I am a mental case but I really just want to get through this with our marriage intact and hopefully stronger.
Cricket