next »

[rchill]

My husband has had health issues of some sort since about nine months after we began dating. The first crisis was a misdiagnosed case of pneumonia that resulted in steroid use...when he stopped the steroids pan-sinusitis occurred. We spent the next three years (got married during this time) trying to get him off steroids and clear up the infection. He came close to dying a couple of times. As this problem was resolving....there was a mild heart attack, and stent surgery. We finally get him over this and he was feeling great....then came the cancer diagnosis. Major surgery, chemo and radiation followed. I was in the last stages of grad school and had to pull out for about five months during the surgery and treatment - he got so sick so fast that he could not take care of himself and could not be left alone. We were not close to family and did not have a lot of close friends, so it was basically just the two of us. I had a great advisor, and he kept me on his grant and in the lab. It became clear that life was forever changed, and the future we had hoped for was not going to happen. I jumped back into my research and began to look for a job.....postdoc was now not possible....I needed to become the major breadwinner and fast. I did find a TT job in a small SLAC not far from my  husband's family (we were not sure if he would ultimately make it, so being close to his family was important). It has been a slow recovery and he will never be "what he was". This has been really hard for him to cope with...the surgery left him physically changed and it has taken time (we are three years post cancer and ten years since we met) for him to come to terms with this. The reason I tell you this is to say I understand the mourning for the lost life...but realistically it is gone and you both need to figure out how to make the life you now have good. Lovingly talk, talk, talk. Work to understand each other....be sure to begin the conversations with how you feel and not with "you do this or that". Even when things were at their worst, I knew my husband loved me, and so I never took his anger at all the loss personally. I tried to understand how I would feel if my life had been taken away as his was. How would I feel if I could not do what I used to be able to do...if I no longer looked the same, and hated looking in the mirror. We have come a long way....life is good. It is quiet living in rural America. But I find such healing for both of us in our little life and my gardens and birds. It is not what we planned, but we still have each other, and my husband is finding a new "normal". Hang in there and hang onto each other.

[post_functional]

You know the Spoon Theory, right? Does he? http://www.butyoudontlooksick.com/ (which also has articles for spouses)

I think a condo actually sounds like something that could potentially make a huge positive difference by "saving spoons" for the two of you.

That said.... I went through some periods of time when I was pretty much bedridden. My husband and I still were able to keep up our relationship because we would watch TV together while I lay in bed or on the couch, and we would talk about TV and books and internet message boards and current events and whatever.

Your husband sounds like a good guy.

The thing that concerns me most about OP's story is the designation "CFS-like".  Is it CFS or isn't it?  What's the actual health status; how is it being assessed; is it currently being treated?  Is it being neglected?  If it's being untreated or subtreated, wouldn't optimizing the treatment be Plan A before talking about ultimatums and divorce?  I may be wrong, but I'm suspicious that optimal treatment has not yet occurred.  I realize that with CFS there is the vicious circle that (as with illnesses like depression) the person who needs the treatment is apt to resist it because of the illness.  All the more reason for my suspicions.  

One other thing.  My wife and I both have had chronic illnesses and sometimes we alternate between who is the caretaker and who is cared for.  You mentioned having RA.  Perhaps one thing you might offer to your husband is the opportunity for him to be the caretaker.  He may be experiencing his own vicious circle where he feels dependent, and then depressed because of it, causing an emotional compounding of the CFS.  Perhaps an entreaty to him that you need his support, even if just emotional support, in coping with your RA, it may help him feel needed.

[prytania3]

You are being held hostage. You are a prisoner.

[alleyoxenfree]

OP, I know you say you are not moving immediately.  But when you do, you might consider finding a house that has an in-law unit, attached somewhere quiet like at the garage, then consider renting to someone, like a nursing student, who would be a partial caretaker for you both - someone to run errands, help out with housework, and so forth.

I've never heard of spoon theory until now, but it's an apt metaphor.  Unless you love to cut the grass or cook for each other, reserve your energy for watching TV together or sitting and reading together, and let others do the heavy lifting.

[mdwlark]

If you haven't spelled out your feelings and frustrations clearly to him, you need to.  If you only hint at your frustration, you probably are being even more subtle than you think and it is not coming across.  What is he doing in the basement?  Is he sleeping, doing rehab stretches and exercises, or playing computer games and chatting on the internet?  It sounds like what you are saying is he has enough energy to do the things he wants, and being with you isn't one of them.  It should be the top priority, and much of the time it doesn't seem to even be on his list.  That says a lot.  I'm glad he is coming around for the birthday.  You may have a disease that is as disabling or even more disabling than he does, but you are handling it beter.  Maybe if someone could objectively measure pain and fatigue, he has nothing over on you.  We don't have a clear picture of how disabled he is.  There may be someone here who has his disorder or has a loved one with it who can give more specific information if you care to share that. 

[msparticularity]

OP, in many ways you seem to have shared my life. I, too, have a spouse with a long-term disabling condition that is "CFIDS-like" and I, too, have RA--although mine is of more recent origin. My own experience, combined with many conversations with people in similar situations, indicates that no one in our place is ever going to get a marriage "back"--at least not the one that used to be. I think all or most long-term marriages have to be pretty fundamentally rebuilt periodically anyway, and for those of us with major illnesses, it can trigger an additional crisis.

My honest thought is that you are going to have to mourn the loss of the marriage that you had before, and let go of the hope that you'll ever get it back. (This is, truly, like a knife in the heart, so I'm not kidding about the mourning.) At the same time, you might begin to open yourself to other possibilities with this person. At the moment, it doesn't look like he's very open to you, but it also may be that he's not able to deal with your need/wish that he be the way he was before. And, being a guy, he's avoiding it rather than talking it through. :) (Yeah, I know, gross stereotyping here!)

Best of luck to you! No matter what happens, I'm afraid it will not be an easy or smooth experience for either of you, really. At the same time, growth can and will happen, and that can be amazing too.

[spork]

You are being held hostage. You are a prisoner.

For at least the last the last 6 months: 

http://chronicle.com/forums/index.php/topic,65152.msg1454133.html#msg1454133

[macaroon]

Daisyaday - have you gone to a couples counselor yet?  I think the two of you might really benefit from this.

Here's the situation as I see it - You are lonely and unhappy.  Your husband is ill and spends too much time in the basement for your tastes.  You've been struggling with this for a while, and you are no closer to a solution.   It's time go to some helpful 3rd party for advice.  Employee Assistance often will give you a few free visits, and, since it sounds like nobody did anything unforgivable, it might be all you need. 

Is he avoiding you and the marriage down there, or is he just trying to cope with his illness?  Does he even know that you want more from him?  Do YOU even know what "more" you want?  Is there something you could be doing to make things easier on him, but perhaps he's afraid to tell you because he thinks you're unhappy?

I mentioned on your other thread that he might be better off if you were divorced because he might then qualify for medicaid.  If he truly does want to check out of the marriage, a divorce might help him with his medical care.

[daisyaday]

Thank you for the advice everyone. I really mean that.  We (and I) are doing much better.  To answer one question: he is in the basement a lot to deal with the illness. I don't believe he is retreating from our marriage for retreating's sake.

We reconnected on my birthday at dinner this month and he has come out of a multi-week flare, allowing me to see the real him again (so wonderful). I have done some things that are helping my own mental health, including decluttering around the house and I have available to me the name of lady who cleans houses at a very good rate should I decide to call her. Freshening up my environment at home and getting out in the sun has helped.

I think I was nearing my breaking point when I made my original post. Venting here and with a good friend who understands helped so much. I don't feel like I have enough "spoons" (energy) for counseling right now, but am in a better place. I also think that after six years on the same antidepressant, my body had adjusted to it. I spoke with my doctor and we upped the low dose just a bit. I think this is helping.

Thank you again. Thank you for being there and just hearing me out and validating my feelings.

Daisy