Tuesday, November 11, 2008

Another rough one

We just had another rough discussion...He actually said the words "I am dying."  I don't know what is going on with his body; what is happening that he isn't telling me.  He did say that his lungs hurt.  He has been bleeding off and on as well.  I think that he is feeling the progression of the disease and scared.  It is so hard to be so intimately affected by this but at the same time to be clueless.  I mean I have been through ups and downs with this for 10 years.  I recognize the difference in coughs and other signs that something is veering off course, but I don't know what it is like to struggle to breathe.  I don't know what is like to have pain grip my lungs.  

With this there are the two sides, the physical and the emotional.  He is going through a lot of both right now and I am watching, unable to do anything.  And at the same time I am struggling myself.  Today when it was just one of those days when I was tired of everything being so difficult.  He has been especially short and cranky--probably a product of not feeling well and also trying to deal with it mentally, and there are days when I just feel like I am at the end of my rope with that, and today was one of those days.  Does that make me a bad person?  A bad wife? 


Sara and Dustin said...

I am keeping you guys in my thoughts. You are so strong!!!!

Elizabeth said...

I don't think getting impatient with/sick of all the stress of illness makes you a bad person or a bad wife. You have your own stresses related to day to day stuff and worry about your partner, plus you are the vessel to receive a lot of stress from your partner and that is really hard. I also don't think it's unusual to feel angry or impatient or get scared when you think about your partner having a fatal disease, which is what CF is. Have you asked G why this is all coming out in this way now? What is prompting it? If he's been in denial about CF for most of his life then maybe he would really benefit from counseling to help him work through some of this stuff. People also always advise counseling for the spouse and couples counseling, sort of a yours, mine and ours approach is how I’ve seen it written about. We haven't done that (yet, it is likely in our future); however, Will has had lots of therapy and I think it has helped him name and process his emotions. For me this is especially hard when Will doesn’t “seem” sick; at those times I just have to take deep breaths and focus on it as a request for help (however in-articulately made). This is not easy. I had a friend recently tell me something very powerful: it’s helpful to recognize that nothing, no feeling, is permanent. That’s true for the downs, but it is just as true for the ups. Things always change. If I can help in any way, please let me know. If you want a day off feel free to come down to Oly-land, we're basically underwater with all this rain, but it's still a nice place.

Elizabeth said...

Hi -- just a note to let you know I'm thinking of you guys tonight and hoping you're having a better time of it.

CowTown said...

This sounds like a very rough time, for both of you!

I wish I could say something to help Lisa, but I don't really know.

Big big hugs to both of you!

Will said...

It can't be bad or unusual to feel stress, anger, and frustration at both the illness and the person who has it. The only thing that could be labelled bad or good (if you choose to) is how one acts on those feelings. Regularly separating the illness from the person is helpful. Things that are hard to deal with, from my point of view, are a partner who withdraws, or starts to feel nothing, who prepares for and experiences one's death before it happens, who goes off and does his or her own thing and is never there. The other hard thing is the growth of resentment and a desire to be 'paid back' somehow, emotionally, if things get better. It's hard for both of you and leaves you both in an untenable position if a transplant succeeds. Both things create situations that become impossible to live with together, as a couple. You can avoid making a bad situation worse, But even so, you'll both suffer. It's unavoidable.

In a way, the suffering is a good sign, a sign that you're engaged and coping. When you don't have these feelings you write about, then you'll have to wonder why and what's going on.