Wednesday, June 24, 2009

CF and Relationships

I have said it many times, but I will say it again. CF sucks. I have been trying to work my way back to "normal" after the last few months of hosptial stays and drama. It has been hard and I am not there yet. But I am getting there. One thing that has occured to me is how much CF has hijacked our lives for the past few months. Literally and figuratively. The literal is obvious, but the other is more subtle. It invades the relationship that I have with my husband. Life stops become out about "us" or about our dreams or even life, and it become CF-focused. All of our energy--physcially, mentally, emotionally, spiritually--goes toward fighting through the current crisis and then preparing for the next. We stop becoming Gess and Lisa, husband and wife, people...and start becoming patient and caregiver (for lack of a better word).

I have always hated the word caregiver (or even worse, caretaker). I don't know why, but it has such a negative connotation to me. A caregiver is a worker in a nursing home. Not a 30-something wife. Not the attorney who worked her way through school so that she could get out of the horrible home situation. Not the woman that had dreams of doing great things. Not me. But, over the past few months, that is what I have become--in a loose sense of course. While I am not doing everything for Gess, especially now, I felt a definite shift in our relationship and our roles. And it makes me uneasy.

I suppose I knew that this time would come eventually...I mean, CF is a progressive disease. But Gess always insisted that it wouldn't be that way, that he is different and will stay healthy for a long time. And I wanted to believe him, so in a way I did. I certainly didn't think that this time would come so soon. He is only 32. Of course, it is not that bad yet. He still works. He is very independent. He is very capable. But during the course of the drama of the last few months, I did sense this subtle shift. And it scares me.

I think that it scares him too. We have talks about how he wants to protect me and things that he wants to do so that I don't have to take care of him. Silly things, like moving in with his dad or divorcing me so that I won't be responsible for his medical bills. When he talks about these things, nothing that I say can make him stop. No logic can override the emotion that he is experiencing at the time. So, after a while I just listen. Listen, and feel my heart break a little more each time.

I can't imagine what is feels like for him to feel his independence slipping. I am sure that he sees the toll everything is taking on me and he feels guilty. My naturual inclination is to try to hide it. But of course, there is only so much that you can hide. I cry in my room instead of near him. I try not to talk about "negative" things. But, it is still there. I wear the stress on my face. You can see the sadness in my eyes. My eyes always deceive me. And I know that he sees it.

So, here we are. Each hurting and scared and helpless. We see the pain that the other is experiencing, but cannot do anything. We just coexist.

As he is feeling better, I see that things are shifting back some, but I can't help but wonder how much damage these time do to us. I wonder how much of myself has been lost, absorbed by this disease and what is has done and what it will be.

Of course there are no answers, and I am not really looking for one. I just have to get up each day and try to do my best. To look for the little things, those moments between us. To enjoy the moments that we do have and make it a point to try to find them. I know that Gess loves me and he knows that I love him, and some days that will just have to be enough.

13 comments:

CowTown said...

Thanks for being so open. I don't know what to say, other then I'm sorry you're both going through all this.

I guess all you can do is do your best as you said, and love eachother every day.

Amy said...

I'm sorry Lisa. I wish I had some good words to throw at you. Thank you for sharing this side of the CF equation. It really helps us CFers know what it's like for you all. You deserve a ton of credit!!!!!!

Hugs and love!!!!!!!!!!!

jordysmom said...

((((((((hugs))))))))

Stacey

RunSickboyRun.com said...

Hey Lisa,

I know how frustrating CF can be for the loved ones of CFers. I'm sure watching your husband endure pain or lose any sense of control is not an easy thing to do. Just know that us CFers often feed off of our support systems and can reflect the attitude given off by them. You are doing an amazing job and I just wanted to encourage you to keep it up.

Here is a post I wrote about Relationships and CF recently if you are interested: http://runsickboyrun.blogspot.com/2009/06/relationships-and-cf.html

Have a great day!

Ronnie

CFsteph said...

My husband and I are going through the same exact thing except the roles are reversed, I am the one with CF.

I always thought I would be healthier for longer too. MY decline hit me fast. Neither of us had time to prepare.

Tina said...

Oh Lisa I truly understand what you are going through. It's awful, there are no two ways about it, it is just plain awful. Looking back on the last couple of years I can see how Shawn and I became shadows. We lived in that stress upon stress upon stress for some hard years and sometimes I wanted to just give up and go to sleep forever. Maybe because I was so very tired but mostly because the pain of watching Shawn suffer was killing me. I did not want to mourn him anymore I wanted something to end. O.K. so that wasn't very uplifting but my point was....look at us today. Who would have thought then that today my life would be so different, so happy. I don't know what the future holds for any of us but I do know that love has a power stronger than you can imagine. Hold on to it. Hang in there and be gentle with yourself.

Kristen said...

I am so sorry. Like others said, thank you for being so open.

NoExcuses said...

hugs to you!!!!!

Cystic Gal said...

Thanks for this writing. The subject alone pulled me in because I am battling with some major CF and Relationship issues . . . feeling that CF sucks me right out of relationships as they begin.

Love to you,
CG

Katey said...

I'm so sorry! I know it's got to be tough on the both of you! I haven't had a true relationship yet, and I wonder what it will be like. I do know that I'm sure he really appreciates your support though (more than you think or that he expresses). And he loves you! Try to hang in there and stick together...that's really important! Be open and honest with each other! He's found a lucky girl! I'm praying that God will work with your relationship and restore it to what it used to be (or at least partly)!

niki36 said...

I am sorry for what you are going through, but I thank you for being so honest and posting about this.

My husband and I have only been together for 3 years and haven't had to deal with too much of this yet. I do understand how CF takes away and I always feel like a burden when I can't do everything we'd like or if I need him to take care of me. It is hard giving up your independence, even if it is just a little at a time.

I wish you both the best and will keep you in my prayers.

Nicole

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