This summer has not felt like much of a summer. There have been a few hot days but they’re usually followed by a week of rain and 60 degree weather. Most nights I still have to pull up the extra blanket that I leave folded at the end of the bed just to stay warm. Last year it was hot and sunny for such long stretches it became uncomfortable. 

Although I loved it, as I’d SO much rather be hot than cold. Still, this summer has been pretty disappointing.

Scott and I celebrated our first wedding anniversary on Sunday. We both assumed it would rain as it was in the forecast and because it had rained on the day we got engaged, the day we got married, and through most of our honeymoon. But surprisingly, it turned out to be a really nice day. Sunny and warm with a nice breeze. We didn’t make any huge plans, instead we did what we do most Sundays: ran errands, got groceries, cleaned the house, and because it was nice out we did laundry and hung it on the line to dry, mowed the lawn, and put up gutters. Not what most people would chose to do on the anniversary. But somehow it was exactly what we wanted to be doing to celebrate the last year of our lives together.

It got me thinking about what all this hard work really means to me. It would have been easy for us to say we deserve a day to do nothing but instead the weather was nice and we were both feeling healthy and strong and so working hard yesterday wasn’t an obligation, it was a privilege. Right now I have a few friends (and know of several others) with CF who are in the hospital, also working incredibly hard, not because they want to be there but because they have to be. People have said to me in the past when I’ve been admitted, that it must be nice to not have to do anything for a few weeks and to just “rest.” 

But as anyone who’s spent weeks at a time in the hospital knows, that couldn’t be further from the reality of it. Day to day maintenance with CF is exhausting and time consuming but you get breaks to do all the other stuff in your life. Being in the hospital is the marathon of CF care. It brings you to your breaking point both mentally and physically and then asks even more of you.

CF is not a fair-weather disease. It's there, rain or shine. It can come out of nowhere and ruin all your plans. So when it’s sunny and you’re feeling good you have to make the most of it. The maintenance part of CF happens when you’re on your best days, when you think for a second, I could just skip a treatment, but those are the times when you should push even harder, not because you absolutely have to, but because you have the privilege of making that choice. Just like we did yesterday when the sun was out, we took advantage of our luck and did everything we could, not knowing what tomorrow could bring.

I kept thinking of those friends of mine who are in the hospital now, eager to feel better, to get their new lungs, to feel normal again, to go home, to go back to work, to do household chores, to buy and cook their own food. All the things I've felt when I’ve been in their place.

Being able to stand in the sun yesterday while carefully placing the clothespins on the line to dry our clothes that we wore all week to work, I felt really lucky that in that moment I was strong enough to do just that. It was a small thing, to be home, celebrating our anniversary in a seemingly insignificant way but it felt really huge in comparison. I know one day I’ll be back there, in that marathon again, but today I am here, working hard, even on my day off.

 

                                                                                        Help Others Live STRONGER and LONGER- 

   

 

Erin Evans is 33 years old and has cystic fibrosis. She is the program coordinator for the Cystic Fibrosis Lifestyle Foundation and lives in Vermont with her husband (Scott) and their dog. She can be contacted at erin@cflf.org with questions or to volunteer to write a blog for the CFLF.

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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