Surviving festival season with fibromyalgia

It’s 1:30am and I’m sitting in a damp field. Around me are thousands of people, jumping and dancing to the music I can hear loudly from a far-away stage. From my spot on the ground I can see nothing through the darkness but a sea of skinny jeans, every where I look. I watch each leg intently, prepared to protect myself when they walk towards me, stumbling and tumbling in the darkness. I don’t know the band on stage. I mean, I’ve heard them before but in this moment, in this disconnected moment where everyone is so alive, I don’t know them. I’m sore, I’m cold and I’m wondering why I keep coming to music festivals.

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Fast forward to the next night. It’s 8pm and the sun is setting on a truly glorious day in Portugal, which I have mainly spent lying in the sunshine and eating bread and cheese. I’m back in the same field with the same people who have come back for more of the same sounds except that this time, I am one of them. My hips are swaying, I have a 1960’s swing in my step and Brian Wilson is playing the hits of the Beach Boys. Over-excited and bursting with joy I make a space for myself in the crowd and, sangria in one hand and camera phone in the other, I dance for an hour and take snapshots of this once-in-a-lifetime moment. There are so many incredible hits and there is so much love that I didn’t realise I had for Pet Sounds. This moment is amazing. This moment where I am stood, in a field, dancing and singing my heart out.

I quickly have a word with myself. Remember this feeling, Sarah. Remember how good it can feel.

I dance into the early hours. Sure, there is more sitting on the ground in a sea of skinny jeans because let’s face it, I’m not superwoman. But as people in our group start to leave I shout to R beaming, “I DON’T WANT TO GO! I FEEL WELL! I *NEVER* FEEL WELL!” And so we stay, and I get to enjoy this rare moment of health. It’s like an out of body experience, I feel light and it’s wonderful.

We sit on one of the benches and people-watch for a while, drinking sangria and eating crepes at 2am. I try to remember the last time I didn’t feel any pain in any part of my body. I can’t, but it doesn’t really matter. What matters is that it’s happening now and, on reflection, I really should have taken a damn photo.

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On my third day at the festival there was more dancing, albeit a significantly smaller amount. There were more ecstatic moments and there were more moments of sitting on the ground hoping not to be stepped on. There was a bit of disappointment as I had to sit through songs I love, there was a lot of laughter and delicious food, and there was some sitting on a hill browsing Facebook whilst other people partied to a band I didn’t care about.

These are my festival moments. They’re the same highs and lows I remember from last year and the year before. And now, after three years of practice, I finally feel like I’ve got this festival survival business down. Here are my top three tips.

#1: The smaller the better 

Big festivals are great; there’s an abundance of choice and something to suit your every mood. But ultimately, they’re an overwhelming display of things just out of reach. Pick a small festival where you can stand in the centre and see the stages, the food and the toilets. If it’s in sight, it’s in reach. You can do it.

#2: Know yourself and trust yourself

You know you better than anyone, so trust yourself and be bold. If everyone is going to Glastonbury and you know you can’t do it, don’t do it. If camping in the rain is too difficult (or, quite frankly, unappealing) then go to a city festival in the sunshine. Wear layers, leave early, drink less, drink more, lie at the back, dance at the front, wheel your way to viewing platforms, throw your walking stick in the air… handle it however you need to handle it and do whatever you need to enjoy it. Know yourself, trust yourself and take care of yourself.

#3: It can’t be perfect 

It can’t be perfect, and it won’t be. There will be moments where you sit on the ground at 1am as your friends dance next to you and drunk people fall over you. Those are not the highlights. The highlights are swaying in the sunshine to songs that warm your heart and, ultimately, warm your bones, joints and muscles too. Those moments give you energy. They’re the moments that make you feel well and, as chronic pain patients know, that feeling doesn’t come around very often.

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