A Bad Day

Most days I manage to forget about having cystic fibrosis. It’s not something I can totally ignore (for one thing, my daily treatments are a constant reminder) but I can usually go through the day feeling like a normal 26 year old.

Yesterday wasn’t one of those days.

You see, on Saturday I came down with a cold. It started with a sore throat, sneezing, watery eyes, you know the deal. And by yesterday it had moved into my chest. Also typical.

Except for a person with CF, it sucks a little bit more.

As I’ve mentioned before, because my body doesn’t process chloride correctly, my mucus is thick and sticky. My daily treatments help me get rid of the gunk in my lungs, otherwise it can trap bacteria and cause dangerous, damaging infections.

It also makes my normal cough much worse, much more productive, and generally more exhausting.

After a full day of hacking away I had a meltdown.

It’s days like these that really get to me. As hard as I try to live my life with a positive attitude, sometimes the fears creep in. So I’m learning to let myself have my moments of “woe as me.”

I’ll be honest, I’m scared as hell. Days like yesterday remind me what this disease is doing to my body. And how quickly I can go from healthy to hospital.

I’m also angry. I honestly do believe things happen for a reason, that having CF is part of why I was put on this earth. But I still get mad. It still seems incredibly unfair. And that question still makes its way into my head: Why me?

But I’m not telling you this because I want pity.

One of the things I constantly battle with, especially recently, is how little people see in terms of what living with cystic fibrosis is like.

I look normal, I sound normal (minus that pesky cough), I act normal. And because of that it’s hard to understand how serious this disease is.

There are only a handful of people who see what I go through on a daily basis. And even fewer are around when I’m having a day like yesterday.

It can be frustrating. And again, not because I want people to feel sorry for me, I just want people to understand what it’s like to live with this disease. Having CF is part of who I am. It doesn’t define me, but by appreciating what having CF is like, you understand me better. And isn’t that what everyone wants, to be understood?

That’s why I started a group in college. That’s why I started this blog. To raise awareness.

I can’t say it enough: The more you understand a disease, and the people affected by it, the more inclined you are to help.

Which is why I want to talk about the days when I don’t feel strong, when doubt creeps in, when the tears come. It’s an important part of what having cystic fibrosis means.  

So last night I cried. I spoke about the things I normally keep tight inside. Things like death, loss of lung function, the frightening what ifs. And then I made a plan. I reminded myself of the developments being made with new drugs, and hopefully a cure. And I decided to make tomorrow a better day.

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10 thoughts on “A Bad Day

  1. I’m so sorry you are feeling this way and going through this. I am inspired by you, your blog and your mission to educate those about CF. Stay healthy & positive & keep blogging – because we love it! xo

  2. I’m glad you are so open! It hopefully feels better to get these things out and off your chest. I hope you feel better and have a relaxing night followed by a smile in the morning 🙂 xo

  3. I’m so sorry you’ve had a rough few days. If you’ve ever read my blog, you know I totally agree with you on NEEDING to sometimes stray from the “positive attitude” thing. Having emotion is real and okay. This is a scary disease, and while sometimes we can hide from it…it always ends up finding us. When it does, it brings the reality right back in focus. I have felt the way you have described so very much in my lifetime. Just know you’re not alone in those thoughts/feelings…

    Lots of Love!
    xoxo
    Stacey

  4. Thank you for sharing. I want to say I’m sorry, but I won’t. Because it seems like you don’t want our sorries, you want our comprehension. I’d want the same thing.

    I can’t begin to imagine what you go through on a daily basis, but I will try.

    And I hope that they find better treatments/a cure.

  5. I think that is healthy to have those down times. I think it would be NOT normal if you never had those times.

    Hoping you start feeling better ASAP (both physically and mentally).

  6. I appreciate you sharing your story! I believe that just one’s strength of will can get them through the toughest times! It’s ok to have good and bad days and to share them all with us 🙂

  7. I’ll share with you what I tell Ashley when she has these sorts of moments:

    You are fundamentally different from probably every single person you interact with on a daily basis. Comparing your life with their lives will bring you nothing but dissatisfaction, fear, pain and distress. You’re better off not bothering with that behavior.

    I hope you’re feeling better by now – physically and mentally. And thanks for be honest enough to show the downside.

  8. Hi Katharine,

    I agree with you–it’s important to share the hard things, and then maybe people will understand better. On that note–would you be interested in trying out some healing qigong with me? I could do it where you live or you could come here to my place. Just to try it out to see if it’s beneficial.

    Take care,
    Pamela

  9. Kat, you are so brave, and so very strong.
    You will always have these times when you feel badly about your situation because, honestly, it’s not fair.
    Your sharing your thoughts and sadness really is helpful for others out there who don’t understand. We need to understand, and appreciate your telling us.
    I too hope they find a cure. You deserve it.

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