It’s Day 3 of RA Blog Week, and we’ve been tasked with explaining our RA to an individual or group of our choice. Given that I’ve been living with this disease for more than 20 years, this should be a lot easier than it is…
But if there’s one thing I find myself explaining over and over again it’s this: that my symptoms and pain levels, and consequently my ability level, vary wildly from day-to-day.
In the last few months, I can’t count how many times I’ve written this sentence in blog posts, Facebook posts, Instagram posts, Tweets and Twitter chats. What’s worse is that sometimes I feel like I’m the one compounding the confusion surrounding understanding my RA.
It was almost a year ago that I decided it was time for a big change: I had finally acknowledged to myself that my unhealthy lifestyle choices were not only affecting my weight and body image, but also my joints, heart, and arthritis as a whole. This was a hard thing to admit to myself: to know that I was holding myself back from feeling better. So I cleaned out the fridge, started meal prepping, cut back on going to the bar with co-workers, started walking Penny every day and slowly began adding strength training to my routine.
I shared a lot of my fitness journey on Instagram, but, like many people, I didn’t share the hardest parts. Maybe I did myself a disservice by editing those out? Maybe I should’ve shown my wrists in splints after swinging kettlebells… Or my shoulders wrapped in heating pads after lifting… Or my knees iced after just walking the dog… Or the days I never made it out of bed, let alone worked out. Maybe I missed an opportunity to show people how difficult it can be to try to get back into shape and be healthier while also managing RA, Pericarditis and bilateral hip replacements (x6).
I guess what I’m really trying to explain is this: just because I choose to swing kettlebells and lift weights and jump rope and do yoga and walk and hike and run does not mean that my RA isn’t serious. That it isn’t active. That I don’t wake up in pain every morning. That it doesn’t affect my life and my ability to do the things I love every single day.
Last month I ran a 5K with my sister-in-law and her boyfriend. I was coming around the last turn, and, with a quarter mile to go, I could feel my lower back give out… And then my hips… And then my knees. In a split second, I stumbled and almost went down.The world slowed to a halt around me. I could hear my breathing over the music in my headphones. The tunnel vision set in. All I could see was the finish line: I was going to run across it. I didn’t care if I collapsed on the other side. I’d just battled 3 miles of unexpected hills in 90-degree weather under the noon sun. I was so close.
For the next two days, I couldn’t walk. I cried getting on and off the toilet. I thought maybe it would have to be my last race ever.
That’s the thing about RA – you never know what it will take from you next. For some, it’s the ability to work or to attend school. For others, it may be our ability to have children or be active and hands-on parents. As it progresses it may even rob of us our ability to walk.
Today I can still walk. Yesterday I even ran. As for tomorrow, I have no idea what that looks like yet.