I had a pulmonary appointment this week, and my FEV1 was 47% again. I was hoping the number had bumped back up (I had been in the low 50s for quite some time previously). But I have to say, for the first time, I felt unfazed by it. That’s big news. I think it has something to do with sharing that number on my blog earlier and letting go of some of the secrecy? pride? shame? worry? that went along with it. I finally was able to see it and then shrug it off. Thanks for the free therapy, readers!
I did voice some confusion about this lower number to my doctor saying I haven’t noticed a change that would account for the drop. And really, even at 47, I feel like I lead a fairly normal life. I mean there are daily challenges. And there are moments that are bad. But overall, I’m living well.
He confirmed that FEV1 is only part of the story (Mom was right!). He said that one of the mysteries of CF is that sometimes patients with high FEV1s, like in the 70s or 80s, struggle as much or more than those with moderate numbers like mine. He stressed the importance of keeping other body systems healthy so the body can efficiently use the oxygen that the lungs are supplying, even if the lungs aren’t functioning at 100%. Apparently my body has become pretty efficient in that way.
I used be a very active person and I still desire to live that way. I wish to have the energy to walk everywhere and bike and run. I’d like to take fitness classes and mow the lawn and do projects around the house. I’d like to chase Lucas without stopping to catch my breath. I wish he didn’t have to say, “Mommy needs a ‘yittle’ rest.”
In the past I would always get in trouble with my husband because I’d start something and go full steam ahead until it was done. Forget eating, sleeping or taking breaks. I would get something in my head and get this fierce determination to do it no matter what. (Once I carried/pushed/pulled a couch and an easy chair up the basement stairs and outside onto our porch by myself because we had forgotten to carry them up together, and Jaime was already at work. Good Will was coming to get them. I was definitely NOT going to reschedule the pickup). In my mind I’m still that person but my body has given me a cease and desist order on that type of living. It is an adjustment physically and emotionally to have more limitations. There are some things 47 can’t do.
But there are many things 47 CAN do! Here are a few of my favorites:
- Carrying Lucas in the backpack. I recently carried him 3/4 of a mile to the bus stop and then later carried him back home. I did feel it the next day (he’s a pretty solid boy at 35 lbs). But we both enjoy the closeness of it, so I carry on (no pun intended 🙂 ).
- Walking while pushing Lucas in the stroller. The three park circuit we do in our neighborhood is nearly a two mile walk, and we do that anytime we’re at home and the weather is nice. The longest stretch is 3/4 of a mile and there are “rests” in between (if you count climbing the play structures and playing chase on the tennis courts as rest).
- Making a home for my boys. This is not to say I keep the house perfectly clean and organized because since Lucas arrived it is less clean and organized than I’d like. And Jaime helps a ton, I certainly don’t do it on my own. But somehow food is made, dishes are done, there are clean clothes to wear, and we’re all happy and comfortable here.
- Tutoring part time. I love tutoring and am so grateful I can do it a few hours per week. It’s a different way to use my mind and my students add a lot of joy to my life. Plus, I get to sit still while I tutor. Taking care of Lucas rarely affords me that luxury!
- Spending time out and about. Lucas and I have several scheduled activities per week including a few classes, a playgroup, and two set lunch dates at Daddy’s office. When I have the energy, we like to spend our free time out as well. We enjoy riding the city bus, going to the library, visiting museums and petting zoos, and hanging out with friends.
I do miss the activeness of my past. I would like to see a higher FEV1 number. But I still have a lot of determination, and I know that armed with God’s strength I can make the most of the life he has given me. I’m so very grateful for all 47 can do!