Monday, April 16, 2012

Feeling down today...

Still not feeling very good.. But, I have heard that this is to be expected within this period of the medicine schedule. Feeling worse for a while is worth feeling better for a longer time, I guess. Hopefully anywhere between a 3-10 day span, I will get as much nasty, bad, yucky CF junk out so that I can feel better than I have been in a long time. I just want to get back and do what I was enjoying doing within the first week (like getting out of the house, and going to work, and shopping, and crafting). But- I just have to feel worse before I can feel better right now. Although it's hard not to get discouraged, I still have faith that I can feel better, and that it will happen. Hopefully sometime soon.

Most of the things I have been feeling (sick-wise) are being short of breath, lack of energy, sleepy, and just all around tired. I will say that am not back to breathing and coughing like I was before starting. I can absolutely tell a change in how I am breathing, how deep I am breathing, and how I don't have my breath catch because of a cough or crackle. And while all of this is how I am now, I shake my head at how different things could have been.

I can feel how bad my lungs are now, though. Like when I try to take a deep breath, yes it is deeper than it used to be, but- I still feel like I could breathe in more. Deeper. Kind of like I used to could be able to breathe years ago. It seems like so long ago, but then again it doesn't. I get really sad when I think about it. And mad. And frustrated with myself. And life. And CF. Then I think of how unfair CF really is, and that makes me even more sad, and mad, and frustrated. I think of how just 5 short/long years ago, I could run and have no problems at all. I could play a full basketball game and not even feel short of breath. I could keep up with everyone else and I could breathe, and I had muscle, and I could do difficult things with no problems!

And then within the span of a month, I am where I am now. I can't even think about running because I get tired. I can barely SIT and WATCH a basketball game without feeling like I can't breathe well. I am back down to the lowest weight I have been since before high school. I can't do simple things like doing laundry without being so short of breath and having to sit down. It's stupid and it's unfair and it's frustrating and it's aggravating and it's.... just not fair. Yeah, I know "life isn't fair"... yeah I kind of got that. But until something like this happens to you, you just can't tell me that. Because obviously I know.

CF is stupid and I hate it. Not because of how it effects me now, but how it completely just.... broke me. I'm broken. I don't know if I can ever be fixed like I was, either.


And it's not fair.

I just want to feel better. Like I was. I am praying for that. I am so ready to say I feel good again. Not "okay" or "fine" or "eh" or "hanging in there". I want to be able to say "good" for once.

2 comments:

  1. Hello, I found your blog as we are always scouring the net for info on Kalydeco (desperately trying to get it for my hubby here in Australia without any luck so far). From everything I've read, it gets much worse before it gets better, no doubt there is some horrible stuff that your body is eliminating. Hopefully next week you will feel much better. Keep it up and best wishes :) Mandy

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  2. So sorry that you are feeling bad. Don't give up though because sometimes you don't know if its all part of the process. You have been sick for a long time. I'd imagine its going to take some time for your body to start adjusting to this new chemical process that has started occurring since taking the new drug.

    You'll be feeling better soon. Try to stay positive.

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