May 26, 2025 – Evening
I saved up all my energy today to shower this afternoon, giving me some time for those deep thoughts that only seem to come when you’re standing under warm water. Today’s shower thoughts were heavy ones. I’m actively saying goodbye to the life I used to have and trying to embrace and be okay with the life I have now.
But honestly? It’s hard. Really, really hard.
The Life I Used To Live
I used to be able to work 12-hour days and still have energy left over to grocery shop, clean the house, and do laundry. All in the same day. I was a productivity machine, checking things off my to-do list like it was a competitive sport.
My days look so completely different now. My energy level lets me do one main event per day, and sometimes even that feels like I’m pushing it. Today’s main event was a shower. That’s it. And I had to plan for it and rest up beforehand.
I don’t even know the person that I have become.
The Small Losses That Add Up
I used to have long hair, and I absolutely loved it. I don’t like having short hair. Honestly, I think it looks terrible on me. But I cut it recently because I just don’t have the energy to deal with having long hair anymore. The washing, the drying, the styling, it became this insurmountable task that would wipe me out for hours.
I have moments when I look around my house and desperately want to clean and organize, and put things away. The desire is there, the motivation is there. But then reality hits. I don’t have the energy to just get up and do that anymore. The spirit is willing, but the body has other plans.
Living Within New Limits
Everything requires planning now. Every single thing. I have to strategically think about my limited energy reserves and high pain levels before making any decision. Should I shower today or save my energy for that phone call I need to make? Can I handle a trip to the store, or do I need to ask someone else to pick up what I need, or have it delivered?
It’s like living life with a constantly dying phone battery, except you can’t just plug yourself into a wall charger and be back to 100% in an hour.
The Path Less Understood
This journey of chronic illness is one that’s difficult to explain to people who haven’t walked it themselves. It’s grieving your old self while trying to build a relationship with your new reality. It’s finding ways to feel productive and valuable when your definition of accomplishment has completely changed.
Some days, taking a shower IS the accomplishment. Some days, making it through without crying is a victory. Some days, finding a moment of gratitude despite everything is the biggest win of all.
A Message for the Healthy World
So if you’re someone who knows someone with a chronic illness, please give them a hug the next time you see them. We’re walking a path that’s completely different from everyone else’s, and it’s an extremely difficult one.
We’re not the same people we used to be, and we’re still figuring out who we’re becoming. That takes tremendous courage, even when it doesn’t look like much from the outside.
Sometimes the bravest thing we do is simply keep going, one limited-energy day at a time.
The dogs are snoring. I’m signing off. See you tomorrow. 💜
