Seeking a Permanent [CF] Vacation

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Every now and then I get in a funk. It happens. A big bowl of ice cream, maybe a glass of wine (who’s kidding, ALWAYS wine), and mind-numbing TV (Real Housewives of Anything, amiright?) and I’m back to my non-funky self.

But a couple weeks ago a funk settled in that I just couldn’t shake. I tried all the normal fixes: mint chocolate chip ice cream, lazing around on the couch, a couple few glasses of Cupcake Pinot Grigio. Heck, I even watched numerous episodes of Keeping Up with the Kardashians.

Still, the funk lingered.

I had plenty of moments where it seemed to have disappeared… only for it to show up a few hours later.

Here’s the thing: there is no vacation from CF.

Feeling drained? Skip your workout. Need a mental health day? Take a day off from work. Feel like grabbing lunch with a friend instead of cleaning? Do it. Want to forget making dinner and go out with your husband? I don’t blame you.

Want CF to leave you alone for a couple days? Sorry, kid. No can do.

That takes its toll. Physically. Mentally. Emotionally.

Especially emotionally.

There were days these past two weeks where all I could do was come home and cry. As if trying to keep it together for eight hours at work was all I had in me. Thankfully, I have a super understanding husband who knows that letting me cry (and running to the store for ice cream) is exactly what I need.

But still, it was frustrating. Not being able to get myself out of that hole made me feel a little nuts. I just wanted to know WHY I was feeling that way. And I wanted to get back to feeling like myself. Not this mopey, lazy, sit-on-the-couch-and-do-nothing, sad sack version.

Maybe this is all a lesson in not always needing a reason. I have a life-threatening illness and sometimes that, THAT is enough to warrant a two-week funk.

As much as this funk has finally lifted, I still don’t feel quite okay. I think part of it is that I’m more involved in the CF community than I’ve ever been. Don’t get me wrong, I love it. It’s a kind of support and understanding that is irreplaceable. But damn is it hard. To hear of other CFers struggling, being listed for transplant, not making it. This disease is not for the faint of heart, and sometimes I wonder if I’m really cut out for what the future holds.

Maybe it’s naive or weak or… I don’t know. But I can’t go there. I’m afraid that if I think too much about what could happen that I’ll never be able to escape the inevitable terror that would set in.

So instead I turn to ice cream and wine and tears. And when that doesn’t work I write. I talk to my husband. I go to yoga and acupuncture. And I hope. I hope that advancements will continue to be made. That fewer people will die waiting for lung transplants. That a cure will be found. And that all of us CFers will one day be able to take a permanent vacation from CF.


5 thoughts on “Seeking a Permanent [CF] Vacation

  1. I love you always. It is so hard being a mom and not having tricks up my proverbial sleeve to “make it all better.” I want to just say, “there, there…things will get better tomorrow,” and I know, on the surface they will. And there is nothing I can do to change what is. And in those moments, what is sucks. And what IS, is all we ever have, so we have to learn to accept it and know that we will do all we can to make the most of every moment – for each one is a gift. You are a gift to me as I watch you take on this heavy mantle and bear it. That is all any of us can do with our burdens is to bear them. And all of us, your friends, your family, the CFF, your doctors, are here to help you do that. You are my hero!

  2. Katharine as always you have my love and support. I can’t say I know what you are going through but I can say that I am always here for you even if you just need a hug and a shoulder to cry on. You are an inspiration to everyone with how you deal with everyday life and your illness. You are a very strong woman!!! Sometimes we just need to have a pity party for ourselves and we all understand that so have your party and we will all be here for you during it and after it!!!

  3. Well, that just plain ol’ SUCKS. Is there someone you could talk to about all of this. It sounds like your feelings are pretty normal for what you’re dealing with, but that doesn’t mean that you should have to be stuck with the bad feelings.

  4. k,
    I wish there was something I could do to make you feel better. That is what is difficult as someone without CF because there is nothing immediate we can do to fix it and I can’t even pretend to know what it feels like. I follow you on Instagram and you follow me too. I post a lot of pictures of my boyfriend who passed away in November from CF. I can’t stop it. I miss him too much.

    It’s been the worse trying to live life happily without him. I’m miserable all the time. But even with all the pain, anger, and confusion I have now, I would not take back loving him and knowing the love that he gave me.

    It was once in a lifetime type of love and I feel so blessed to have known it. (And the truth is–I still feel it.)

    I’m sure it’s heartbreaking to see people in pain (with cf or not) and also be one of them. In my case I can say to you honestly and whole heartedly that loving my boyfriend was painful but it was too full of love to regret it.

    Always remember you are not a burden. Know that your love outweighs it all. And that it’s okay to not be okay.

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