Giving Myself Grace and the 3 Seasons of Life with CF
Today I walked three miles.
I feel almost silly writing that down, but for today it is an accomplishment. I’m in my re-building season right now and three miles is progress.
A couple of weeks ago I had sinus surgery. This is a fairly common surgery in general, but especially for people with Cystic Fibrosis.
Somehow I always forget how hard it is to recover from a surgery. The first few days I understand but I spent a good week and a half feeling tired and foggy and achy. So of course the moment that I started to feel better I overdid it.
I always do this.
My mom’s voice is forever in my head saying “patience is a virtue” – the mantra she followed me around with my entire childhood. Cognitively I get it. Somehow I can never quite convince my body to sit still though.
Patience.
Patience with myself is so hard. In this particular part of my CF cycle, it is particularly hard because I want to get back to “healthy.” But I take a deep breath and try to give myself some grace.
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The Season of Life with Cystic Fibrosis
I think of my life with Cystic Fibrosis in terms of seasons. Healthy season. Sick season. And the Rebuilding season. They need better names – but cycle after cycle of these seasons are my life.
Healthy Season
I am going to work hard to not put healthy in quotes every time I write it here, but obviously someone with Cystic Fibrosis isn’t healthy.
It wasn’t until I was about 20 year old that I realized that not everyone feels congested every day of their life. Not everyone has a headache at some point during the day every day. That not everyone coughs, has drainage, stomach issues and a host of other mildly irritating symptoms every day.
It’s a bit embarrassing that it took me that long to figure out, but see here’s the thing: I don’t know any different so it never dawned on me that there are people that wake up in the morning feeling great.
Anyways, Healthy Erin is great. I like healthy Erin.
Healthy Erin has energy. She goes to the gym or for a run every morning. She is organized, smart, patient(ish), and active. She writes stories. She writes blog posts. She plays with her kids and plans creative things for them to do. She loves spending time with her husband and has amazing friends.
Sure there are daily meds and frequent doctor appointments and obsessive attention to the amount of water I’m drinking, but that’s all doable and worth it to feel good.
When I’m healthy I truly love my life.
But then I get sick.
Sick Season
The sick season sucks. I usually start with denial, especially because it almost always arrives overnight and when I have zero time to pay attention to it.
I trudge through the early sick season thinking that maybe just maybe my body will miraculously figure out where that immune system button is and turn it on.
I slow down.
I walk more than I run.
I start to forget things or feel overwhelmed.
I do less writing. I take less photos.
Until I sort of chug, chug, chug to a stop.
And then I sit. And I sleep. And I watch more shows on AmazonPrimeVideo and Netflix than is probably healthy.
This lasts however long it lasts. I’ve learned that there is no rushing it and for the most part I have come to accept it, aside from some underlying guilt for whatever I’m missing and pushing onto my husband’s plate.
But eventually I emerge.
Re-Building Season
As much as I hate the sick season and as much as I feel relief and gratitude every time I start to feel better, the re-building season is rough.
In my world there isn’t “sick” and “healthy.” There is also a middle world. This part of the cycle is where I feel close to better. Feeling completely normal and healthy though takes time. If I rush it I get worse and upset and usually sick again.
I have to start slow at the gym and build back up.
I have to gather all the emails, notices, and papers I missed while I was foggy and get organized again.
I have to catch up with friends and figure out what happened in the world while I was in my streaming comma.
I have to be careful about what I eat to avoid my body freaking out.
I have to take a lot of slow, deep breaths and remind myself that this is just a season.
But slowly, day by day I build back to “healthy.”
GET YOUR OWN DEEP BREATHS SHIRT
Today
Today I went to the gym. I walked on the treadmill for 60 minutes. Next week I’ll maybe try a little running.
Today I wrote and edited a story. It’s not great, but my lovely critique group partners will give me their honest, helpful thoughts and I’ll make it better next week.
Today I have already had 52 ounces of water…and it’s 10:19 am.
Today I’ll assign myself a break at around 1:00 to give myself an hour to rest before I pick up the kids.
Today I get to pick the movie for our family movie night and I’ll read my kids books before they go to bed. I’m thinking the new Vanderbeekers book.
And tomorrow I’ll get up and push myself a little more towards normal.
I know from experience, countless cycles of these seasons, that I’ll feel good again and when I do I’ll make the most of it.
And that’s really the most important thing I’m learning.
I can’t control when the seasons come and go, but I can make the most of the healthy days when they’re here. Until then I will give myself grace.
