Lupus and Exercise: Fitting it in and Making it Routine

At the end of last summer, my dad spent close to a month at Johns Hopkins, recovering and rehabilitating from brain surgery due to his Glioblastoma diagnosis just 6 weeks earlier.

It was a crazy time - my sister, my mom and I spent most days in Baltimore. Some nights we stayed over in a hotel; other days we simply went up early and returned late, taking on the hour and 15 min commute each way. Home and work fell by the wayside (Johnny thankfully picked up much of the slack at home), but it was hard to find time for anything, including exercise. 

But I knew I needed to make time. As my dad worked diligently and waited patiently for his mind and body to start cooperating,  I desperately needed a way to keep mine in check and on track, too.

Exercise has always provided me with an outlet. A physical, as well as a mental workout - a break to do, to breathe, to relax. It gives me a chance to check in with myself, see how I'm feeling, notice what parts are working well, and which ones aren't.  Over the years, my workouts have ebbed and flowed, mostly in response to my disease activity. Some days, all I could muster was a walk to our mailbox at the end of our driveway. But it was something. And my body and mind latched on to that something as healing, effort, hope. I also noticed changes in my body. Maybe my feet (usually clad in slippers) weren't as swollen as they were the day before, or my fingers weren't as tender. Some days, I could wrap my hand around the mail, rather than just tucking it under my arm because of the pain. I noted these little differences - both good and bad - that kept me in touch and in tune with my body.

So back in that hospital room, I searched for ways to do just that. It quickly became clear that the 12 floors of the hospital provided the space I needed to accomplish my workout.

I made a pinky promise with myself that I would use the stairs every day. My dad was on the 12th floor for most of the time, so I would usually get in 12 flights twice a day, often 2 more if I visited the food court or cafeteria on the 2nd floor. It was so cathartic. So reassuring. So constructive. There were so many things out of my control regarding my dad and cancer. It was wonderful to have one thing that I could dictate and manage.


I learned to wear the right shoes (I snapped a pic of me in step action one day), and pick the best time to do my steps (not right before my nap time, and not after a shift change!) I don't know if my dad ever knew what I was doing. I honestly can't remember if I told him.  But I do know that as a guy who did physical activity every single day of this life, he would have understood and approved. In theory, he would have wanted to join me.

So I encourage you to find time to do a little, breathe a little, and relax a little each day. It does not have to be major. Stretching counts. Five jumping jacks do, too. Whatever movement is right for you, do it! (And don't be surprised if you can do a little more each day. Or a little less. Keep track, and you'll have fodder for your next doctor's appointment!)

Note - before undertaking any strenuous exercise,  consider checking with your doctor. Safety first!

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