I can't get no satisfaction

Dearest readers,

Now is my turn for Q and A. As many of you know, I struggle with my husband understanding CF - and trying to get him involved. He won't go to websites, he doesn't read this blog. So I ask you now, please, post an answer to my question. I might copy and paste some of the answers into an email to my husband, so you don't have to write directly to me, but rather just pontificate on the subject :) (pontificate is a good word, no?)

So, what is the one main thing you would want or expect someone who loves you to know or understand about CF...what do you think or wish people would "get" about this disease. If you read and don't have Cf, maybe what is the one thing you wish you could know or understand about CF?

Honestly friends, I am at my wits end with feeling that I get no compassion around here, so your answers might be able to shed light in ways that I can't.

in your time

For some reason, the comments from this post didn't get emailed to me, so I never realized anyone commented - that, or I have been hitting the bottle waaayyyy too hard at night (possible, but I don't think so).

Anyway, I just thought there were a few good comments on there that I wanted to flesh out here in my writing.

As with my previous post, I have not been feeling too great. I was on orals a few weeks ago. We went to Chicago and when my cousin escorted me to the el platform to visit a friend, I realized that I was really, really winded from walking with her. My friend commented on it when I called to tell him I was on my way. I blamed it on her walking too quickly. But the next day we were going to a Bears game, and I was having a hard time keeping up with my husband. He kept making comments about us missing the first quarter because I was slow. What didn't help was that the baby wanted only me to carry her (and any mom will tell you carrying a toddler in a winter coat is a sucky job) but I could only go a few feet before I had to put her down, cough (with my legs crossed so I wouldn't pee my pants) and then try again. It sucked.

So, as per my above linked post about my husband not"getting" CF these days, on the way home from that trip I commented (apparently more than once - note to self: stop thinking out loud)) that I really wasn't feeling well. What was running through my mind was: why don't I feel well after a round of cipro? Cipro always works. What if I got some nasty bug on the el? I feel crappy. Why was I so out of breath? etc. All I said though was, "I don't feel well." My husband (yes, I love him, really I do, but this was not a shining moment) replied with,"Why don't you stop complaining and do something about it?" I was hurt and angry. What more should I do? I was trying to do something about it! I felt he was insensitive and mean. We got into another "You-don't-get-it" argument.

But here is the thing. Two comments were made in my other post that I have been thinking about. One is that idea that I am coming from denial into an uneasyacceptance of CF. This is so true. I am trying to be proactive, to do the right things to prolong my good health, but I am not at ease with my identitiy as a cystic. I am still fighting it. And much of my battle is inside. My fears and worries have not all surfaced yet becuase in that is a greater admission of acceptance that I am not sure I am ready to share. Which leads to the second comment. The idea that I am reponsible for the image of CF that my husband has. I am the one who put it in his mind in the first place and it is up to me to change it - though I can't expect his vision to change along with mine - he comes at this from a total loss. He knew nothing of CF before me. He has gone along for the ride easily because it has been an easy ride. Somw of my fears and worries have not come to the surface yet. I fear wearing O2 to my kid's school functrions when they get older. I fear my first hospital stay....legitimate fears for a CFers I think, but hard to grasp for someone who is just observing this disease in their rather healthy mate. And I have not shared all of my fears about CF with him...some of them are still deep within me, larger than just the physical manifestations...shame at being imperfect, embarrassment, loathing of pity, afraid of admitting that I'll likely die young.... My husband only knows what I have shared with him and in his POV, why should I worry about those things when they are not part of my present state?

I mentioned to him recently that depending on what my cultures and PFTS showed, I may be in for another round of IVs. I could see on his face saddness, and confusion. I seem just fine to him. He hasn't even noticed me coughing more. He doesn't know this body, he doesn't know CF...all he understands is the present situation. If that means IVs, then he'll be there, helping me along the way. I think maybe that is all I can expect from him right now. He will learn along with me, at his own pace. I'm not sure I can ask for more.

cuz I'm all alone, there's no one here beside me

I've come to the sad realization that my husband does not "get" CF. I truly believe he wants to be supportive, but because he is rather uneducated about Cf, he is failing.

When we met, I did no treatments. I wasn't very interested in Cf. Denial was my middle name. I was probably at a lower lung function than I am now. I was abusing my body in ways I won't mention and just did not have my health very high on my priority list. I think I just mentioned CF in passing once like "oh, I have Cf. It's no big deal. I am not like everyone else who has it." blah blah blah - we already know this story.

But I think that mentality has stuck with him. Last night we argued about me working. I am not against working, though I certianly like NOT working, I just mentioned I was a little scared. That it would be hard to handle treatments and exercise and a full time job and I am afraid of teaching again because I can see in hindsight how often I was sick while I was teaching - I mean schools are GROSS.

My husband told me I was using Cf as a crutch to be lazy, that I was never like this before - that teaching is a cushy job, one that requires little of me and should have no effect on my health. I know in typing this, on a blog read primarily by other CFers, that it is making him sound like a total dick - and he isn't, but he just doesn't know and I don't know how to make him get it.

I was thinking last night that next time I get sick I should just get admitted. that maybe 2 weeks of mom in the hospital would show him where this could be headed. But I don't really want that. I know that day will come soon enough. He doesn't know that that day will come though, and that is the problem.

I feel sort of dejected (rejected). How do you get someone to see something that they just don't/can't see? You can't, obviously.

I am more afraid now than I ever was because right now I truly feel I am alone in this fight.