Living with FND as a festival performer.

I went to a festival last weekend called Equinox Festival. A lovely small festival in Grimsby.

This is the second festival Iv been to all summer & my what an experience it was!
I want to share with you my experience, as for me, this was a festival experience with a difference. Yes it was amazing in many ways but damn it was a challenge at times!

Summertime for me is usually full of fun & mischief. My favourite time of year. I get to do loads of outdoor family activities and also have lots of fun with friends going to festivals, performing and having a laugh, usually in a field in the sunshine. What's not to love?
I'v been taking time out from performing this year which was a decision I didn't make lightly but was forced to do so after being diagnosed with Functional Neurological Disorder earlier. My social life came to a complete stand still for months and Iv been slowly tying to gain it back as part of the 'self help' I'v been doing.

My friend & business partner suggested we applied to do walkabout at Equinox and I was apprehensive but thought, hey lets push myself and give this a whirl but only agree to do things I was capable of.
So together, we co organised a troupe of performers to do walkabout dressed in carnival costumes. We agreed to do a few hours on the Saturday for free entry to the fest. Fabulous!

This was the first festival I’ve done any performing at all summer. A big difference to the usual 4/5 I perform at most summers. I’d been missing it loads and have felt a big chunk out of my life has been missing since becoming unwell. Not being able to fulfil my passion for entertaining makes me quite sad.

My usual festival voluntary work involves dancing on a podium high up but that is a no go for me nowadays, what with my balance and vision problems. Or parading through the streets as a samba dancer. Something else I don't have the energy to comit to anymore.

The lead up to the festival went well. The organising went as smoothly as could have and tbh It was nice to have a distraction away from my general daily worries. Also It gave me something to look forward to. Which is something that makes me love working in this industry because it gives me a zest for life. I love the costume prep. Styling others and wearing amazing costumes is something I love so very much. All the same, I was quite nervous about being able to cope with the whole pressure of doing well and making sure everybody and everything was in place. But we did fab. I was proud of everybody. We had a wonderful reaction from the crowds of people and it was fun to get dolled up as a samba carnival dancer and go around site tickling people with feather dusters! ;) I felt like me again! :D

After a few hours of going around site dancing and playing silly games like limbo. I felt a little overwhelmed and tired so had a good rest before heading back to the top of site.. We joined LittleMiss Tree, our friend Scarlet who does a fab interactive walkabout act where she pushes a tree around on a trolly and people can write messages on a card then attach it to the branches.

Together, we found a spot to be stationary inbetween two of the stages where there were people passing. Everything was calm but then I had a drop attack where my legs gave up on me followed by body spasms, so I sat beside the tree in hope nobody could see me having a funny turn. I didn’t want any attention drawn towards me or a fuss made of me. After all I find it quite embarrassing.

It lasted for a few minutes and then I was able to stand again. But the tics carried on. I became quite emotional and got the fear of being seen this way, so I explained to my mum and friends that I wanted to get out of there, so they guided me back to camp supporting me all the way so I didn’t fall. This was all too much for me. I had a massive melt down. I couldn’t contain my tears and cried my eyes out explaining how much this was for me to handle. I was just so upset that I couldn’t do what I used to do without my body giving up on me! I think the reality of it all hit me.

"I just want to be me again!" I sobbed.

As much as I try to force myself into unnerving situations to try overcome my fears, I’m not the same old Layla anymore.  And this was a lot to get my head around. Going from having fun doing what I love, to an emotional wreck unable to walk properly, just totally threw me. After months of holding it down and not getting emotional about any of it. I think it just suddenly hit me and it all came flooding out. There of all places.

My friends were wonderful and wouldn’t leave me. They gave me love, support, cuddles and comfort. I’m very lucky to have some beautifuly caring people around me.

I decided I needed to get all of my costume off and get my normal clothes back on. I wanted to blend into the background so I didn’t draw any more attention to myself in case I had another funny turn. I drank loads of water and rested and my mates cheered me up, then we went back into the festival and I had a great time for the rest of the evening. Cheered up by dancing to my favourite music drum n bass with my mates. 

I spent most of the weekend fine. I made sure I slept each night and drank lots of water and ate a decent meal each day. These things are vital for me to stay in good health. As lack of sleep and not enough food or drink are just some of the triggers.

One thing I’ve learned is that strobe lights also trigger my symptoms.

On the friday night, I walked into the psy trance tent to look for friends and withn an instance it triggered an attack. The sounds and lighting were far too much for me so I avoided going back to that area.

On the Sunday of the festival I was having a lie down in my cosy tent, when I had another seizure. Again, my friends were nearby and took care of me until it passed.

Most of the weekend, I had a wonderful time surrounded by lovely people, and good vibes. The festival is full of beautiful, friendly people dressed up in vibrant clothes. There was a great selection of styles of music and amazing decor. The site was only small which was great for me. There was a small selection of stalls and food. I made loads of new friends and spent time with some of my best friends. I laughed lots and it was just what I needed. I spent most of the weekend in fancy dress which felt good to bring my wild side out again. I danced more than I'd danced in ages. But I avoided the places where there were triggers and wore ear plugs when needed. Spending time in a field with my favourite people listening to my favourite music is some of the best therapy.. It fills my heart with love & happiness. I feel like I am at peace and can be 'me'. Away from the stresses of life. Away from the hectic hustle and bustle of the city life. The daily chores & the repetitive daily routines. Festival life is my happy place. It felt good to be there with my friends & family.

Music highlights for me were seeing Dub Pistols, Inner Terrestrials, Unknown Ear & Nicky Blackmarket. Just some of the great acts on the lineup. I missed lots of acts because I spent most morning until aftermoon chilling & making up for all the dancing I did at nightime. One thing I like about FND is even though it makes you unable to walk properly, you can dance! Its mad. But I like it. Dancing is my passion. My one true Love. My Therapy.

On the Monday after the festival had finished, we woke up to beautiful sunshine. It was glorious. The wind had calmed down and we enjoyed some music whilst packing down and prepared to leave. We planned to go to the beach on route home as it was only 10 minutes away from the festi site. Before leaving, we went to say goodbye to our friends who were staying on site longer as they were taking one of the stages down. I didn’t want to leave them. I felt so happy but I was missing my son and looked forward to going home to him.

I went to the toilet before heading back to the car and had a serious phone call from my rental officer explaining about universal credit coming into action soon and we had a small discussion about rent. He was quite nice but this was the last conversation I needed at end of a great weekend. Soon after, I was walking alone across the field just getting close to our vehicles, when I felt my legs start to go. I proceeded to walk towards Shaun at the bus when my knees buckled. I stood back up then they felt weaker and weaker. I started to collapse when Shaun ran over to me. I was crouched on the floor by this stage, unable to stand. He suggested we sat down, but I wanted to try get to the bus. But my legs completely lost control and I could no longer hold my weight. So I agreed to sit down, there wasn’t anything else I could do; my ass was on the floor anyway. We sat there a moment, and then within seconds I had a full blown non epileptic seizure on the floor. My mum and scarlet came over to comfort me and brought me water. I was able to talk for the first part but I remember struggling to get many words out and I was having full body spasms, I also kept seizing up. It would alternate between the two. My head would move into different positions and I was shaking around all over the place. I couldn’t see at all. My vision always goes completely cloudy but also with double vision. This seemed to go on for ages. Possibly 5 minutes. I’m not certain. I do remember mum saying I'll film you to get a record of it. This was the worst seizure I'd had in weeks. And the worst my friends had seen me. I felt uncomfortable that there were vehicles of people close by who may have seen me in this way. But I also felt comforted that it happened where Shaun could see me rather than on my own where not of my mates were but only strangers. That would have done my head in and probably made me worse through the anxiety & embarrassment of it all.

After a while I was able to sit upright & see again, but I felt out of it. Mum drove the car over to me so I didn’t have to walk over to it. Whenever I tried to stand, my legs felt like a dead weight and couldn't even lift myself up from the ground. Then Shaun, Paddy and mum lifted my weight to assist me into the car. They got me to the door but I seized up. I couldn’t even help them get me in. I lost all control. This all became too much. My pride took over and I became emotional.  I felt a huge sense of low mood and lethargy. I went from being in a fantastic mood to feeling really down. Yet again my body ruined my day. I hated people seeing me this way. It is one of the worst things about it all.

As we drove to Cleethorpes beach, I sat in the passenger seat in a daze and feeling extremely tired, in pain and confused. Once there I couldn’t stand up so I sat there for a while, while the others discussed where to park up. I had another attack where my body just seized up and locked into the most unusual position. I think you call it a dissociative seizure. Once that ended I was able to sit forward and strap myself in again.

Off we went to another spot right opposite the beach, where the pier was and some shops. I used a walking stick to help me walk across to the shops. Where we planned to get fish & chips. Once again my body was having jerks/tics and my legs were giving way. More drop attacks. Great. The stick helped hold my weight which was good but I felt so uncomfortable. I didnt want to go anywhere else and risk having another full blown seizure in front of all the strangers around. So I spent the whole time sat in scarlet’s bus in pain. I watched the others go to the shops, arcades & down to the beach with the dog. They took it in turns to stay with me so I wasn’t alone. I never even went onto the beach. How boring and dissatisfying. I had been wanting to walk on the sand and dip my toes in the sea. But it was quite cold so I wasn’t too upset. To be honest I really didnt fancy getting stuck on the beach whilst having a siezure while the tide was coming in rapidly. That would have been heaps of fun!

After eating some fish, chips and peas, I felt a little better and was able to stand and walk again. I forced myself to cross the road to sit on some steps and managed to get a nice view of the sea. Which to be honest wasn’t the prettiest of beaches but was lush to hear the sound of the sea and smell the sea air. Here was my view from the bus.. Not exactly the most idylic way to end the weekend but not the worst either ;)