Life’s been really wonderful recently. *knocks on wood*
I’m loving my job – both what I’m doing and the amazing people I get to do it with. There are plenty of adventures with friends in the coming months. And Mike and I are planning a big trip later this year. I’m soaking up life’s sweetness and feeling very blessed.
But there’s also a sadness I can’t shake.
The older I get, the harder it is to not become my disease. It’s incredibly important to me to be more than cystic fibrosis, but with each big life event I feel more and more trapped by the hard-to-swallow truths of living with CF.
The big one? Knowing a shortened life – one riddled with scary health obstacles – is a strong possibility.
As people get older, life gets more complicated, no matter who you are. And when you throw in a life-threatening illness, the complications seem to grow exponentially. It’s a daily struggle to live my life outside of my disease – to not let it seep into each moment of my day.
My biggest fear is that it’s changing me. The loneliness… the fear… the what ifs… I’m scared they’re slowly chipping away at who I am.
In many ways, having cystic fibrosis has helped me become who I am. It’s made me better, stronger, more empathetic. And I wouldn’t change any of that. But it’s also made me more fearful, less spontaneous, and always worried.
There’s this HUGE part of my life that very few people are able to understand. With cystic fibrosis, there’s no break, no day off, no vacation. Every single day there are pills to take, treatments to do, neb cups to wash, scary thoughts to try and ignore.
It can be isolating and makes me feel separate from people, like I’m part of this “other” group. So I fall into the habit of pulling away or hiding parts of myself in order to feel more normal.
I know that much of this is just that, how I feel, and not how I’m actually perceived. And that’s a reminder I keep tucked away to pull out at times like this.
I’m sorry I’ve been absent from this space. It was mostly because life’s been keeping me busy with lots of goodness.
And partly because I couldn’t find the words. While I’m still not sure I explained it perfectly, I hope it at least shed some light on the emotional difficulties that can come with chronic illness.
Tonight I’ll make dinner with my husband, have a glass of wine, do my meds (while watching the hot men of “Chicago Fire” because, hello, that makes anything better), and let this sadness rest here for a bit.
As always, thank you for reading and allowing me a moment of therapy.