It is 9 pm. My deadline for this column is in 12 hours. Some people would call this procrastination. I call it practice. I’ve been writing several columns in my head for the past three days. I decided not to worry about it and instead enjoy the last glorious days of my husband’s leave from work. This is the first weekend I’ve been home since the beginning of March when my mom had her lung transplant. Today was the first day I’ve had entirely to myself in the same length of time.
Last night as Jonny packed for a weeklong training exercise, I wrote a to-do list for today. I planned to start out strong by going back to the gym, then come home and prepare some healthy meals for a couple of days. Next, I was going to make some belated Father’s Day cards for my dad and father-in-law. After that, I’d clean up the absolute nightmare that is our guest room/office and then focus on my business goals. I was going to work on an online class, upload and start editing the photos I took over the past six months, write this column …
There are so many things that need doing, and I should have the energy because all I’ve been doing for six months is sitting around in hospital rooms, sorting pills and watching basketball (go Warriors). Right? Wrong.
I did go to the gym today, and I fed myself, but that is about it. I finished reading my book, but I had to stop and nap two times in the course of the two chapters I had left. I stayed in bed for three hours in the middle of the afternoon trying to persuade myself to get up and do just one thing on the list.
I am not my mom’s primary caregiver. Within 24 hours of “the call,” my dad Ed, my Aunt Shari from Alaska, and I were all on duty. My Uncle Scott in Sacramento was at the hospital before any of us that day and lived close enough to help out if needed. There has been a backup for the backup for the backup caregiver this whole time. We all wanted to be involved so that we could provide different kinds of support to my mom, as well as prevent caregiver burnout.
I am so thankful that we could share the responsibilities in the difficult early days. I can’t speak for the others, but being able to split our attention allowed me enough space and time to not get overwhelmed. I was able to take off for an afternoon to see a friend or spend the mornings writing or take a walk. I had enough me-time to not get super grumpy, and when I was caring for mom I was able to be present for her. I was just busy enough all the time that I rarely felt the fatigue from the mental exercise that’s been going on in the background all along.
Now, on my first full day alone in three months, responsible only to myself and my futile little to-do list, all I could do was nothing.
I know that I have a lot to process and that it’s going to be hard to knit my new self into what feels like an old, sort of unfamiliar life. I know this is tiring work, but I would be lying if I said I wasn’t a little disappointed with today. I came back to Washington state feeling like I had all the energy in the world and finally the time to put it to use. I have lots of goals that need to be reached and for the first time in years, no fear holding me back. Yet, the first opportunity I had to put my nose to the grindstone, I could hardly get on my feet.
Like everything else in this journey, fatigue will come in waves. Some days I will be full of energy and gratitude; some, grief and pain. Other days, maybe I’ll just stay in bed. I will have to honor each type of day as they come. Feeling wiped out and upset sometimes is part of the process, and those feelings shouldn’t be ignored. Most days, though, I hope I will have balance and motivation to make the most of this life.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.