My Ordinary Day
The alarm goes off. Feet swing over the side of the bed—just like everyone else. But before I stand, I pause. I check in with my legs, ask them quietly if they’re going to hold me steady today. Most days they say yes. Some days they hesitate. Either way, I stand, because the day is waiting. Then an early morning 1 hour walk with my neighbor - some days slower than others, but always an hour. I pull on whatever clothes I have set out the night before, but always make sure to wear the good stability shoes. I am now using a walking stick for insurance on the walks.
A few minutes sitting under the fan to cool off then off to the bathroom to shower. If I feel strong, I stand. If I feel wobbly, I use the chair. Either way, I take the shower because it’s my way of saying: I’m still here, I’m still showing up. On good days, I even wash my hair, and there’s a small joy in that too.
Getting dressed happens mostly sitting down now. I remember when I could balance, even at 80, slipping on underwear and pants without touching a wall. If you can still do that, treasure it. Celebrate the ordinary movements, because one day they may not be ordinary anymore.
Water before coffee—always. Then the French press, and the quiet pleasure of watching it brew. I still stare at the timer, hoping it will move faster, because coffee is more than coffee. It’s comfort. It’s a promise that the day is starting.
On treatment or doctor days, I gently wake my husband. He’s my driver, my partner, my steady hand when I wobble. While he showers, I make the bed—because even something as simple as smoothing the covers can feel like order in a body that doesn’t always follow orders.
In the kitchen, I unload the dishwasher, glance at the dinner plan, and smile if I actually remembered to thaw something. Then off we go, Tesla and chauffeur, to whatever the day requires: PT, hyperbaric oxygen, blood draws, or specialists. It’s not glamorous, but it’s life, and I’m grateful for the hands that help me get there. They told me to save money to travel after retirement - I did not know it would be all to healthcare facilities in my own time and slightly outside of it.
Back home, oatmeal. A quiet rhythm. Laundry on Thursdays and Sundays—we tag team, the two of us, like we’ve done with life for decades. At 10 a.m., blood pressure check. Meds tucked between water and coffee. Little rituals that keep me grounded.
Some days are lighter, and those are my treasures. Music in the background, jigsaw puzzle pieces on the dining table. We finish one about every two days. It’s not about the puzzles themselves—it’s about the focus, the satisfaction of finding where a piece belongs, the reminder that small things add up. and the companionship of my husband and I teasing each other about covering up where the other is trying to work.
Once a week, I meet a friend for coffee. We talk, we laugh, sometimes we pretend everything is okay. Those hours lift me in ways no doctor visit can.
The month is full: doctors, PT, massages, a haircut, volunteer work, book club, HOA tasks, painting. It sounds busy, and it is, but it keeps me feeling connected—to people, to purpose, to myself. It is so tempting to quit all that and just give in to the desire to stop trying so hard to outrun this disease, but I never give in - just not what I do
By 9 p.m., I am in bed. By 5 a.m., I am up again. The days aren’t perfect. They’re not effortless. But they are mine. And even with Inclusion Body Myositis, I try to fill them with small victories, quiet joys, and the people and routines that hold me steady when my body doesn’t.
And maybe that’s the real lesson here: no matter what life hands us, there is value in the ordinary. The glass of water. The clean sheets. The laughter with a friend. The puzzle piece that finally clicks. They matter. They’re worth noticing. And if you’re walking your own hard road, I hope you can spot those little victories in your day too—because they’re there, waiting to steady you. Don’t get so caught up in “keeping” what you have that you forget to enjoy what you are trying to keep. Find pleasure in what you can still do!!
If you have other events or tricks to stay motivated, share them in the comments because we all need good ideas we can use.
“All we have to decide is what to do with the time that is given us.”
We have a bookshop store HERE where you can find books Linda has read or that look helpful for folks dealing with chronic diseases of various kinds. You may see links to those books in the text of our blog posts. We do get a small financial reward if you purchase a book through the shop, but the price to you is the same. It also helps support independent booksellers. Thanks!
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
