Even after 31 years with CF I still catch myself getting into those ruts when I’m sick. You wonder what you’re doing all this for, if it’s not going to keep you healthy. And it always seems to happen at the time when you least expect it. I had been feeling really good, and it was finally warm enough to get outside. I’d been running everyday and feeling really healthy and positive. And then BOOM. I went for a run one afternoon and when I got home I felt like I had no energy at all. Even taking a shower felt too extraneous.

I didn’t really think too much of it and just told myself I’d pushed myself too hard that day and was just exhausted from the usual things. The next day though, I woke up feeling worse, and had a fever, and was coughing, and was achy, and, and, and… I knew what was happening, all the signs were there. I was sick.

It’s always been a hard thing for me to not get really down when I’m sick. I don’t see myself as “sick”, until I am and then that’s all I can think about. Being sick means resting and taking it easy which leads to thinking about how unfair all of it is. How is it that I can spend so much time and energy taking care of myself and still end up here? You start to think it’s all for nothing. You start to think, what’s the point? Vicki had a good way of putting it in her last blog, that you want CF to be like a math equation, so that if you do this, plus this, it will equal this. But CF is not like that. Sometimes it feels like your hard work is paying off but sometimes it just doesn’t add up and you end up sick and questioning all of it.

One of my favorite parts of my job is getting to interact (be it over the phone) with other people with CF. Nine times out of ten when they realize I have CF there’s almost this immediate understanding between us. If it was anyone else I was calling I’m sure I would get the usual “you don’t sound too good” or “you must have what’s going around”. I don’t have to worry about these things when I’m talking to people like myself who understand that “what’s going around” is always going around. Since I work from home, even when I’m sick I’m able to do some kind of work and not get behind, which includes conference calls and phone calls to recipients, except this time along with feeling awful, I also sounded awful. For a few days I lost my voice completely, and for at least a week I just sounded really, really sick. Not only did it make work difficult but losing the ability to connect with friends and family over the phone while I was feeling so bad, was incredibly hard. Sometimes all you need to feel better is a friendly voice on the other end of the line, reminding you that it's all going to be okay.

A few years ago I trained for my first (and so far, only) century ride (100 miles on a bike). It was probably the most challenging thing I’ve done physically. Which, when I think back on it now, still amazes me. Maybe I could do it now with enough training, but I was in better shape then, and mentally I wasn’t intimated by it. The thing I learned about riding those 100 miles (50 of them in the pouring rain) was that hard work does pay off, in spurts. After a steep climb where your legs and lungs are burning and you don’t feel like you’re even moving, you get to the top of a hill and you see the view and what’s ahead, and then get to just let go, and fly down the hill. The thing you can count on (usually) when you go up one hill, is that eventually you will get to do down another, and the freedom and joy that downhill brings, makes all the hard work worth it. When I was climbing those steep hills I would remind myself what was at the top, and it would keep me going.

CF, and a lot of other aspects of life, are the same. You work really hard at something, hoping that it’ll pay off, and sometimes it will, but the thought that “if I do this… then this will happen” really doesn’t work in real life. You can study hard for that test, but still not pass. You can be a really good person and still have bad things happen to you. You can work hard for that promotion but still not get it. It doesn't always add up, no matter how badly you feel you deserve it.

There will be peaks and valleys and up hill climbs that feel like they’ll never end, but every now and then you’ll get to feel like you’re on top of the world. The key is enjoying those moments when you’re at the top looking down, seeing your future, all the hills that you’re going to come to, the stops along the way you’ll have to make, and being able to enjoy the ride down to whatever’s next and allowing yourself to feel free and so, so alive.

Erin Evans is a 31 year old adult with CF. She is also the program coordinator for the Cystic Fibrosis Lifestyle Foundation, and has volunteered and worked for the CFLF for the last eight years. Currently she lives in Central Vermont, and can be contacted at erin@cflf.org.

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