Monday, July 19, 2010

You feel like WHAT?

The other day, in the mist of another conversation, Ronnie made the statement, "I know I am carefree and happy, but many days I don't feel great." We continued our actual conversation (what is was about is irrelevant to the story, so I will not bore you...perhaps I'll save that for another Mandi Monday?) but that statement resonated with me.

Now, some of you might be thinking, "DUH!" And I get that that does seem like a "DUH" moment. But for me, the statement didn't sit with me as a "DUH" this time. I "get" CF in general. I get that CF can make you feel bad. I work with CF 40 hours a week and live with it "around" the house 168 hours a week. I feel like I have one of the best handles on CF as a non-CFer because I just see, hear and talk about it what feels like most of the time.

But his statement all of a sudden made me realize I maybe didn't get it as much as I thought I did. I guess I didn't know how it REALLY made people feel, and on top of that, I realized that I really didn't get how Ronnie feels. Ronnie is ALWAYS carefree and happy. I wish that was an exaggeration, but it's not. It's hard to find Ronnie having an emotionally "off" day. As I've said many times before, he's my steady-eddy. So it was hard to imagine that he may actually be feeling bad from time to time. Somehow I knew that people with CF can feel bad, but I guess I thought Ronnie was the exception to the rule.

After letting these words run around in my head for several hours I decided to just ask..."So what do you feel like if you don't feel good?" I'm sure he was a little blind-sided, since I was asking a follow-up question hours after a statement made in the midst of another conversation. "Uhh," he looked at me, initially puzzled where my question came from. "what do you feel like? What do your lungs feel like when you don't feel good." I repeated again. "They feel heavy. Sometimes with shooting pains across them or sometimes it feels like I'm being stabbed. Like right now I feel like I'm being stabbed here and here," he said as he pointed to two places on his lungs. That rocked my world. I guess in all of my talking about CF, I never stopped long enough to get some real details. I must say, I got a little choked up. "I don't like that you feel like that." Ronnie quickly jumped back to his usual self, "well it's not all the time." "I have learned how to not focus on it." "I only really think about it when I think or talk about it." "I don't want you thinking that I feel really bad all the time." "I don't like talking about it because then I think about it and when I really think about it, I can feel pretty bad."

With that, I took my cue and figured I'd stop asking a ton of questions but just said, "Well I like knowing how you feel. I don't like not getting it. I don't like not understanding or being able to feel what you feel. So can you tell me how you're really feeling sometimes so I can kinda get it?" And with a smile and a few kisses (EWWW, lovey dovey newlyweds, I know I know) that was that.

The point of my story? There is none...which Ronnie will tell you is the case with most of my stories. I feel a little silly that in 2.5 years I never thought to ask what it REALLY feels like.

Comments (8)

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You aren't the only one. My husband tries his best to understand what he can. But the problem is that he is NEVER sick. Like honestly we have been together for 4 1/2 years and he has been sick ONE time. And he knows that I have my days where I just can't. But he just doesn't ask what it REALLY feels like. Bless his heart he trys to understand, but he just can't b/c he doesn't even really know what being sick feels like.

But he understands when I need him and THAT is what matters. He will step up and cook, clean, tend to the kiddos, and let me sleep till I need it and that really means alot to me.

Its good that you are taking the time to really know what it feels like. I honestly don't think ANY cfer wakes up feeling good every single day. I know I can feel great one day and miserable the next.
I think it is sweet that you really want to understand what a cystic is going through. I guess it is just comforting. My husband hasn't asked that question but he is always thier for me! He understandes that I am not always my best and when I am not he is there to be his best. I love him very much, and we just had our first wedding anniversary!!! yay!!
Ronnie is so lucky to have you. Congrats on being newlyweds! Best wishes!
michelle m's avatar

michelle m · 770 weeks ago

i think its so sweet and great that u want to know that much mandi, and i agree with the person before me. my husband getting what and when i cant handle is the biggest thing. now since my pfts have fallen below 30%, i would have to say that it really is most of the time i feel pretty awful but though thats different to ronnie (and 8 years ago for me when my pfts were 70-80) i think the same principle applies. imagine u cut your finger pretty deep while chopping veggies one morning. u would notice it alot at first but if , say , youvgot into a really good show on tv u would stop noticing as much quickly. probably u would think about it more in thecommercial break..etc i think cf is like that and things have to be newly or excessively bad for us to REALLY notice
Jamie Purchase's avatar

Jamie Purchase · 770 weeks ago

I really commend you Mandi for want to know and understand how Ronnie feels, although I think you may never completely understand because I firmly believe only Cystics can and even then most of us have complete different experiences then others. But just you being there and wanting to really makes a difference. My husband try's to understand, and does his best and even today I feel CF crappy and he always ask if there's anything he can do for me and that is comforting. Although I feel only Cystics and understand how we feel, I also think we can't understand completely how our loved one's feel having to watch us fight this awful disease. So there may never be complete understanding of what the each of those people are going through, just being there for each other helps.
I do the same, when people ask I am doing, I give the boring "Fine" , "OK" or "good I guess" if I get sick of fine and ok. You just kind of get used to those sharp pains daily, or here an there. Or the headahces from coughin too hard. No one really knows if I'm uncomfortable unless they can tell by the way I am breathing. Basically, these things don't phase me unless its intense enough to make me cry or call the Doctor____When my husband asks how i am feeling and I give him the "fine" or "ok" he always ask "just ok?" I just tell him "I dont feel like crap, but I dont feel awesome" but when I am feeling pretty good or not to shabby I always let it be known :)__
Great conversation starter, Mandi. Kristin asked me last night how my lungs feel. I said that they feel like they're made out of that plasticy-rubber material from the health class dummy in elementary school that you could take the organs out of. Not much give or take in the way of elasticity.

I get those stabbing pains, too, and she is none the wiser.

Another interesting thing that I realized last night when she asked me how I felt was that getting healthier has made it harder to tell when I'm having a good or bad day because my usual point of reference is gone. I've been feeling better for 3-4 months now, so if I'm having a bad lung day, is it really a bad lung day or just not tops? Hard to tell. Crap, this part should be going on my site, but nothing wrong with expanding these thoughts later today, eh?

Thanks for getting the gears turning and the word out.
I agree with my cysters and fibros that commented before me....it is hard to explain exactly how you are feeling but you know that person that loves you is concerned and there for you when you are feeling like crap. My husband asks & gives me the same question back if I say "ok"...."just ok?" He is a nurse so needs every detail...I try to give him the details he needs to know its just one of those "cystic" days for me. He & I have been married almost 16 yrs & together for almost 21 yrs. From day one he has always asked how I'm feeling & what can he do, if anything, to make me feel better. I usually just need a hug & kiss & I'm all good. Us cystics are very blessed to have these special people in our lives & Ronnie is no exception....you are an amazing person Mandi & keep asking....reminds us every so often you're still there with us & aware of how we are doing...esp when life gets so chaotic & busy with the daily routines.
Christine S. 's avatar

Christine S. · 751 weeks ago

I totally understand how you feel Mandi. I didn't really know how they felt until I married Adam. He tells me that when he starts feeling super bad it feels like he is drowning. It makes me sad to think that he feels that way but I immediately ask him what we can do so he doesn't feel that way. Anyway..I didn't really have a point to my comment. But I really enjoyed reading this!

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