Wednesday, October 28, 2009

go back jack and do it again

edited 10-28-09 - 9:22pm whilst awaiting infusion

I have the time to address some of the topics that came up from the hubsand post.

But first, I shall toot my own horn. This morning I: infused two meds, vested, nebulized, fed aand changed a baby, dressed a toddler in a fairy costume (and got her to brush her hair), went to the grocery store with both children, put awat groceries and started laundry. woot.

No one better call me lazy. I do think I feel better though. I am still a bit SOB, but my energy (minus my lack of sleep, which will hit soon, I'm sure) seems a bit higher. Maybe it is mental, maybe it is just the need to get things accomplished, maybe it is the abx...who knows.

On to matrimony:

I showed my husband all the comments yesterday(I think there are like 17 of them! so cool!) and asked him to read them. His gracious reply was, "I don't feel like getting on the computer right now." humph. Seriously though, your comments brought a few issues to light for me.

1)The lack of interest, whether it be from fear or ignorance or what have you, makes me feel unloved and unimportant. I can't seem to get him to get that, but I need to recognize it and I need him to recognize it too.

2) Compassion and understanding are not the same. I have long thought my husband lacked compassion. Chalk it up to his upbringing. That is not the same as not understainding. I can expect him to educate himself and to try to understand the dymanics of CF, but I can't expect him to truly be able to put himself on my shoes. Right now he is failing at both a bit, but we can work on the one, the other not so much.

3) My husband takes care of me in a physical sense. He got up at 5 to help with my first infusion, he changes the oil in my car, he does laundry if I ask, takes care of the house (outside and mr-fix-it stuff, mainly)....emotionally, he is not as strong. He doesn't know what to do when I cry, doesn't know how to handle when I try to explain my expectations for him emotionally, and honestly, has no idea how to handle the emotional (or physical) demands of CF.

4) My husband DOES think I complain a lot. But the thing is, he and I have different definitions of complaining. I think complaining is sending your soup back because it doesn't have enough cheese on it, or whining about weather and things you have no control over. I don't think complaining is saying, "I have so much to do tomorrow, I have to do a and b and c and by d and f for ghij and k." So that ne we might be at a standstill...

5) It is Ok to be tired and to take time for myself to do what I need to do with CF. With or without a husband, I will have CF, and for that my health has to be first. I want to be here for my kids and my husband and family, and I can only do that by taking care of me, even if I have to do it alone.

6) Another comment came in today while I was having my PICC fixed (see below) with reagrds to my husband's diabetes. I do take the time to inform myself on diabetes, to a point. I read a book about it when we first met and he started insulin (he is type 1 but was misdiagnosed as type II in the Navy). I share any new info I learn about it (though it usually comes from CFRDers, still, diabetes, diabetes), I make his lab appointments and doc appointments - so yeah, I am involved. I have not joined a diabetes support group or website or anything like we cystics have, but I know more about diabetes than I think he knows about CF. Part of this is just because we are not created the same. I was brought up reading and asking questions, he was not. I have to learn eveyrthing I can about a new thing, while he is content with just knowing what he needs to know or what "authorites" tell him. I don't think one way is necesarily better than the other and certainly I waited years to allow myself to learn details about CF, my own disease! but it is a different way of coping, and as with the aforementioned physical/emotional divide, this is another way we are soooo different.


BAH. I have to go back to infusion. something is wrong with this PICC. I can ~feel~ it in my body, if that sounds wierd, I know, but there is pressure in my chest and my heart keeps beating really hard. so much for easy.

PICC fixed. I hope.

2 comments:

Sandy said...

Wow! I can't believe you did all of those things with a PICC in one arm and bruises on the other! Very impressive!

I guess I am pretty lucky because I think my husband gets it. As I move towards transplant, it's often a topic of conversation between us. However, I can see that some of my friends and family don't get it yet. My CF has been a non-issue until now. I am trying to be really honest with them and encourage their questions. That would be my advice- to continue to be really open and honest about how you feel.

NoExcuses said...

Hey girl. First thing's first: you are NOT lazy. Super woman, in fact.

Secondly, have you ever read the book Men Are From Mars, Women Are From Venus? If you have, maybe you can give it another look over.

Not to butt in too much, but when you said that you and your hubby have different definitions of complaining, it make me remember that book. Because as you said, men and woman communicate so differently.

Men want to fix things. So when they hear us women say something that we aren't happy about, they try to fix. And with CF, it's incredibly frustration cuz they can't fix it. And this is frustrating to them at best, and more likely they see themselves as a downright failure (makes no logical sense to women, but this is just how it is).

So sometimes, not being involved (aka your hubby not being engaged in learning about CF, helping you emotionally) is a coping skill - it's way too painful to fully understand all the crap you go through cuz really, he's useless in his own mind because he can't fix it. So why even try?

You feel neglected, unloved, not understood. He feels like he's trying to save his own manhood and purpose in life.

OK, if this all sounds ridiculous I'm sorry. As women this can sound absurd initially if you haven't read the book.

Unless he's completely narcicistic (I'm not just throwing around that work... I mean clinically narcicistic) chances are what's truely going on is just his coping with the sitaution.

Ask him, if you get a chance, how you having CF and seeing you on IV's makes him feel. Dig deep - not in a pushy way, but in a "I want to understand way."

I bet you'll hear comments like hopelessness, anger (at himself & the disease), failure, fear, etc.

Men just want to protect their wives and make them happy. With CF, so often they just can't and it shakes them to the core.

Take care :)