I’ve been enjoying attending music festivals for about 7 years now, and that is apparently a good enough amount of time to judge how much my disease has progressed over the years. Music festivals are exhausting, especially camping ones. They involve long days of walking, standing, and dancing, typically in heat if the festival takes place in the summer. I mean, the exhaustion I feel after a music festival is one that I feel to my very core. It takes at least a week for my body to fully recover.
Back when I first started attending these events, I didn’t have too many issues with getting through the grueling multi-day festivals. Sure, I tired out, but I wasn’t limited by pain or anything. Going into the festival I just attended in June, I was a little worried about how my body would handle it. The last festival I had been to was 5 years ago, and I’ve had a variety of medical problems arise since then, specifically my joint issues which I knew would cause a problem with me navigating a music festival and its campgrounds for several days on foot. The only way I could think to prepare was to bring my knee brace with me and be sure I was getting my physical therapy exercises in regularly before leaving.
It’s hard to try to do what you love when you can’t do it as easily anymore. One thing I’ve loved to do is shuffle (a type of dancing) to music, especially at concerts and music festivals. Shuffling is a lot on your knees though, and it’s triggered my patellofemoral pain syndrome in my left knee in the past. I might be able to do it for a little, but then I pay for it in knee pain later. This was one thing I was able to do way less of this year.
But I didn’t imagine that simply standing in the crowd and dancing ever so slightly would cause such pain in my hip. On just the second day of the festival, my group and I had spent most of the day at one stage watching back-to-back sets with no breaks in between. We had been standing and dancing in the sun for hours, and I had felt pretty good the whole time.
After dark, during one of my favorite artist’s sets, my hip suddenly started to flare up in pain. I kind of stopped dancing at that point and just stood in the crowd while watching his set, slightly bobbing to the music, but it was impossible to ignore the pain in my hip. I tried to keep my weight off it, but nothing helped. I like to think I’m pretty good at bearing through the pain most of the time, but this was on another level. There was something so heartbreaking to me that I couldn’t get into this set and dance with my group and everyone else in the crowd. I had to sit down.
I told my husband that I needed to sit somewhere for a break, and he immediately broke off from the crowd with me. We were pretty close to the stage so I started to lead the way out of the extensive crowd. As I weaved through other festivalgoers and dodged people sitting on the ground, I saw the faces of everyone vibing to the music, the lights from the stage illuminating their smiles. It made me happy to see how much fun everyone else was having because that’s how I feel at these events, but it also deeply saddened me because I realized that I just can’t do this anymore, not like I used to. I didn’t want to sit on the ground at the back of the venue for this incredible artist’s set. I wanted to be dancing in the crowd with everyone else. And I didn’t want to be in pain.
Still weaving through the crowd, my eyes started to prick with tears as I thought about my limitations now. Years ago, I wouldn’t have had this issue. Without CLOVES and the hip dysplasia it’s caused, I wouldn’t be in this much pain. I knew I would be limited, knew that I was limited, due to my disease, but this sudden realization at that moment as I left this set just felt like a smack in the face.
Once we finally broke free from the throngs of people, I beelined for an empty patch of grass against a closed vendor truck. For one split second, I thought about heading to the medical tent after noticing a chair sitting in there, but I figured sitting down where I could extend my legs would be best. It felt heavenly to finally sit down and sprawl out. As I sat there next to my husband, letting myself shed a few tears, I thought about my new limitations I would have now. I can still do what I love, but I’m just going to need more breaks than usual. We sat there for the entire next set, and my hip pain eventually subsided. By the time the next set came on, I felt refreshed and rejuvenated.
For the rest of the festival, I prioritized sitting down a little more often. My hip pain didn’t go away – I was limping around the festival and campgrounds for a lot of the weekend after that. I just had to walk a little slower.
It wasn’t easy hitting the long-anticipated limitation in the way that I did. I knew it was coming, just not this soon. It’s hard to accept the fact that you can’t do everything you used to at the pace that you used to. But that’s just part of this whole journey. Things change – my body, my rare disease, my pain. I just have to acknowledge this fact and do my best to continue doing what I love as long as I can even if it’s at a slower pace.
PeaceLoveHeal 