It has been more than SEVEN months since I have had IV antibiotics for my cystic fibrosis.
I know I say this every time another month passes, but I used to have to do them every 2.5 to 3 months. So this is a BIG deal.
But it's not like I thought it would be. I thought I'd have more energy and be SUPER CARLA! Able to do many crafts and babysit and dance and socialize all in one week! And able to organize and keep her house clean! And she now does the dishes and laundry too!
Except that's not what this is like at all. And it confuses me.
I should be super excited that I have gone this long without a hospital stay or doing home IVs. I haven't had to risk losing more of my hearing or doing more damage to my liver and kidneys. Those are very positive. I haven't gotten so sick where I can barely breathe and barely move. I enjoy that. But again, I'm confused because I thought this would be different.
I still sleep a lot. More than most people. More than most sick people. I feel I sleep more than I should need to and more than any of my friends with CF or fibro or anything (I know this isn't true, but it is what it seems like to me).
I know I have more 'good days' this way - with the lungs that don't crap out on me as often. But I think I was hoping they'd all be 'good days.' And they aren't. I thought I would recover faster if I wear myself out. And I don't. I thought I could walk farther and longer without getting tired. And I can't. Somewhere in my mind I think I was wishing for the ability to run and skip and dance. But that hasn't happened. Dancing is still taxing and hard to do - but I love it, so I try to do it as much as I can (which isn't much).
I think I thought I'd be more normal. But I'm not. My lungs are still scarred, they just don't get as sick as often. My body is still fighting. And I'm still tired.
But at least I'm sleeping in MY bed and not a hospital bed.
Excuse the dust, my inability to be polite showed up - Last week the girls an I visited Disneyland to celebrate Marlo’s ninth birthday (this whole thing happened NINE YEARS AGO) and yes, while I was very busy s...
2 days ago