Allow Me to Explain…

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.

6 Replies to “Allow Me to Explain…”

  1. YES!!! You hit this one right on the head! I don’t have RA but I do have systemic lupus and fibromyalgia so our lives sound similar. It’s so hard to explain to somebody that we have no idea how we will feel from one day to the next. Today i might be able to do the dishes and play with the dogs but tomorrow night be a “couch day”. We just never know! For me, that’s one of the hardest things about having a chronic physical illness….not being able to make and keep plans because i don’t know if my body will allow it. Thank you for your posts!

    1. Thank you so much for reading and for sharing your experiences. One of the things that I am trying to be a lot better about is being more open about my hard days. I used to think that if I posted “hospital selfies” that people would think that I was looking for pity, but, like anything else, it’s all about context. So I’m trying to be frank (and even funny!) about my hospital experiences and share them more on social media to give people a window into what our world is like. So one day I might post a race picture and the next time it might be an infusion day picture! I’m hoping that if more of us can become more open in our journeys, maybe we can change the tide of understanding to work in our favor more! Either way, I’m going to keep fighting the good fight for our chronic community! Cheers!

  2. What an excellent post, Anna! You’ve nailed this one. That said, I deeply admire your determination and perseverance in the face of such disabling pain. You’re my hero! 😉

    1. Thank you so much, Leslie! I’m such a big fan of your writing and the insights you share on this #ChronicLife of ours, and that means so much coming from you! Sending you big (gentle) hugs and hope that you get to enjoy a beautiful fall weekend! XXOO

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