A couple of years ago, I was diagnosed with a fairly rare autoimmune disease called polymyalgia rheumatica. PMR is an inflammatory disease characterized by muscle pain, stiffness, and fatigue. It mostly affected my upper body, and it was worse in the mornings, or after long periods of inactivity. For weeks, I couldn’t raise my arms high enough to wash my hair. I couldn’t dress myself. Laying in bed was torture, because the pressure on my elbows and shoulders was unbearable. Sitting up caused pain in my hips. The only way I was remotely comfortable was standing and I was too exhausted to do that for long.
Luckily, PMR’s symptoms are unique and my doctor made the diagnosis fairly quickly. I was referred to a rheumatologist, where I found out that the only known effective treatment was a drug that cost all of $3.00. I started taking the miracle pill called prednisone. Within days the pain was manageable and, for most of a year, I was okay. Not good, but good enough. Because of the potential for serious side effects from the prednisone, I had monthly bloodwork. The PMR wasn’t going to kill me, but the prednisone tried to. I ended up with steroid induced diabetes that was out of control and I had to stop taking that drug. The doctor then prescribed two immunosuppressants but they didn’t agree with my liver or kidneys. Then along came Covid and who wants to be on immunosuppressant drugs during a pandemic?
The good news is that my disease is now in partial remission, although I’m not sure the fatigue will ever go away. I still have mild symptoms but they are tolerable. When I left my rheumatologist’s office the last time, he gave me the best advice I think I’ve ever had from a doctor and I want to share it with you. He said, “I know it hurts, but don’t stop moving. The best thing you can do for yourself is to just move.”
So, I’m trying. One step became two, two became four, etc. I’ve added 5000 steps to my day which is huge for me. I walk my dog when the weather is decent. I park far away from entrances to stores. If I find myself with a minute, or two, while cooking, I walk around the kitchen. If I’m reading or quilting, I set a timer for thirty minutes, then I get up and walk around my house. I go up and down the stairs each time. I can make a continuous loop through the downstairs and I walk it 10 times before I go back to whatever I was doing.
It’s funny that my dog will follow me around each time for the first two or three laps. Then he sits down and watches me. He looks at me like I’m crazy. I tell him that it’s okay. I’m just trying to take a few steps beyond normal!