Why does every step I take send daggers of fiery pain shooting through my feet? Why are both of my ankles swollen so badly the bones are no longer visible? Why does everything I put on my feet, including socks, burn as if they’re on fire?

These are just a few of the questions I repeatedly asked myself (and anyone else who would listen) two weeks into our summer tour. Up until mid July and almost halfway through tour I was feeling great. No meds. Normal blood work. I had just celebrated running at a faster pace after a season stuck on a plateau, and I was consistently running six days a week.  Finally I was feeling strong. As we embarked on our adventure, I was happily running at campgrounds and hitting Planet Fitness workouts several times a week. But after two weeks, my feet really started to bother me.

At first I worried I had injured myself, but both feet hurt and the pain moved around. I distinctly remember running with my husband in Nebraska one morning, noticing my feet were sore, but obviously not an acute injury as we ran 5-6 miles. The next day I headed out again, but after a few steps, the stabbing pain throughout both feet reduced me to a slow limp back to the camper. From that point on, every step I took made me wince in pain — for the next 6 weeks!

Little did I know this would be my last run

I love discovering running routes wherever we camp and taking long walks together around the campground at night. Being unable to run (and barely walk) was really frustrating because I had been really looking forward to it.

Then, at a festival we were thrilled to be a part of, not only was I reduced to a limp, both of my feet and ankles blew up like balloons. Nothing I tried alleviated the pain or swelling.  Standing to watch the bands was excruciating. Over the course of the weekend I tried compression socks, ice, heat, ibuprofen, elevating my feet at the end of the night, sitting, walking around barefoot … Nothing helped. The constant pain was like a dark cloud hanging over the whole experience.

Even this didn’t help

My mood started to tank and I began feeling sorry for myself because I had worked so hard all year to improve my health and just when I finally broke through, I was instantly knocked back down again. And I couldn’t run!

After a few days of wallowing in self-pity, convinced the universe was conspiring against me (especially on my birthday as I limped across the campground in the pouring rain then slipped causing my foot to swell even further !)  I forced myself to start looking at my situation objectively.

In retrospect, I had let some unhealthy habits sneak back in. Being on the road disrupted my sleep,  I was sitting for long hours as we drove, followed by long nights of standing at each show. Sure we worked out quite hard most mornings, but then we sat for most of the day. A few days prior to the pain showing up I had spent a lot of time in the heat and sun. Living in an RV meant we had limited space for fresh produce, so eating processed food like cereal and granola bars became more prevalent, and instead of giant salads and fresh stir fries, I was nuking white rice and frozen veggies for dinner almost every night. Instead of starting my day with a giant 60 ounce green smoothie consisting of a pound of kale, frozen bananas, and berries, I would occasionally have a 16 ouncer with a small handful of spinach and frozen fruit. I’m not saying any of what I ate was BAD. It was simply not as nutritious as I had  been eating when I reversed my autoimmune disease in the fall. Any of these things could have triggered a flare of autoimmune or perimenopause symptoms.

On my birthday (yay for 54!) I splurged (or more accurately, my attitude was screw it) mostly because I was so annoyed.  I ate pizza and cake for the first time in almost a year, and as much as I’d like to pretend it didn’t matter, I definitely felt worse after. Again – not that eating those are BAD, they just definitely aren’t helpful in healing. (How I wish that wasn’t true!) 

The pizza was delicious but probably not worth it

For almost a month, I did not run. I couldn’t walk normally. The severity of the pain ebbed and flowed, but was always there and it shifted throughout my feet and ankles. 

Once we arrived home, I prioritized eating tons of fresh vegetables and fruit, walking around barefoot as much as possible, foam rolling my legs and strength exercises for my feet, which I had stopped doing before we left.

My rheumatologist told me it was likely an autoimmune issue, especially because it was in both feet and the pain traveled. Some days it was my tendons, or ankles, or heels, or the top of my feet, then for a few days, the pain left my feet altogether but settled in my calf which became like a rock which was painful to touch. That was weird! 

A course of prednisone reduced the swelling in my feet and thankfully that hasn’t returned. Now I’m back on Plaquenil and an anti-inflammatory. I was resistant at first, but when every step (and eventually even sleep) hurt, I finally gave in.

Back to eating lots of fresh veggies

Thankfully I’ve run a few times over the past two weeks and although my feet hurt, it’s nothing compared to what it was. I can walk normally without pain  distracting me every single step. Of course I did my own research and learned that 70% of people with lupus report pain in their feet as a flare. I also recently read that women in perimenopause complain of similar symptoms which are likely due to reduced estrogen which negatively affects our tendons and joints. Many people in both groups report debilitating foot and ankle pain. So are  my hormones wreaking havoc or is it an autoimmune response? Or both? Once again – the maddening million dollar question!

This has been quite a challenge. It’s so easy for me  to give up completely when things go wrong. Thankfully the lessons I’ve learned over the past few years reminded me it wasn’t the end of the world. Was I going to allow a physical problem to ruin the rest of tour? Was I going to throw in the towel and stop exercising altogether? Is my life over because I can’t run everyday? I decided the answer was no, so I made adjustments, leaned on God and kept pushing forward. I lifted harder and rode the bike. I walked when I could and tried to be grateful for that.

I learned the hard way that I can’t take healthy habits for granted when it’s going well. When I was on a roll and feeling good, I started to slack on the fundamentals. I figured some processed food, sugar, oil, etc. wouldn’t affect me. What’s the big deal? Live a little! Don’t be so uptight! I stopped my foot strengthening exercises along with my daily stretching and rolling. Even though I was still working out in the gym consistently, I wasn’t moving much otherwise. 

Looking back, I see how all of these small things slowly added up. Why wouldn’t my body react? I suppose I had convinced myself that since I was feeling good and had no signs of disease, I could slack. I justified it because honestly, I was sick of eating healthy and I wanted to do whatever I wanted to do. One less than ideal choice led to another, and before I knew it, my choices looked a lot different than when I first healed. I convinced myself  it was no big deal. But the reality is, our choices every day DO matter and eventually they add up.

There’s a fine line between striving to eat and exercise “perfectly” (which is impossible and there’s no such thing) and working hard to avoid a relapse. It’s all a matter of perspective. The truth is (and research shows) that our consistent daily choices affect our physical and mental health, as well as our health span. One pizza isn’t a death sentence or a sign of failure, but it can trigger symptoms or worsen them, and for some of us start a domino effect of unhealthy choices. Some people can get away with it. I’ve learned that right now I can’t. (And in reality it catches up with us one way or another whether we want to believe that or not).

So now I have to decide if cutting out certain foods (processed, sugar, oils etc) and being vigilant about foundational choices is worth it. The pain reminds me that it is. It also reminds me that I’ve overcome this before, and with God‘s help, I can do it again. Here’s to adding more wisdom to my tool box and to yet another exciting comeback.

I finally managed 5 miles!