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We all have something that makes us shine – something that no matter how low we are feeling, puts a smile on our face. Whether that’s playing music, immersing ourselves in nature, writing, photography, creating artwork… But in this chaotic world we live in, these moments of pleasure are often set aside and forgotten, and living with chronic illness creates additional barriers.

We don’t place enough value on these acts which at times may seem frivolous or unproductive. But these very acts are what make life worth living.

Music makes me feel alive

Image description: Drawing of someone standing on stage with a guitar. Image text: Sometimes music is the only medicine the heart and soul need. Image credit: tinybuddha.com

I woke up this morning after a particularly vivid dream. I have spoken about my vivid dreams before – about how my subconscious mind seems to over compensate for the limitations placed on my ‘real life’ by my disabled body. I run, dance, sing, – all the things I’m unable to in reality.

In this dream I was on stage singing and playing guitar. I was having a ball – so happy and excited. The song I was singing I had written myself in the dream, and it was called “Music makes my soul shine”. Now, I couldn’t tell you anything more about the song – not the melody or the lyrics, but it was about finding the time to do the things that make us glow – the things that bring us to life. The things that increase our vitality and energy – things that make us feel alive, that give us purpose.

We have all watched our favourite musicians come alive on stage – they seem to radiate light (God I miss live music). This energy transforms venues and creates an overwhelming excitement that grows in audiences. Everyone comes away invigorated and buzzing. This is what I experienced in my dream.

Recently I have been watching James Bay’s Live Lessons over on Instagram. He’s been taking time out over the Covid-19 lockdown to teach his fans to play his songs on guitar. Listening to James play his music, and excitedly talk about, and teach these songs has been an absolute pleasure, and it’s reignited my love of music.

Image description: a screenshot from James Bay’s Instagram feed

I have always adored music, it’s been a big part of my life – especially live music. Going to gigs has always been a passion. I used to be the first person to get up and dance in pubs, clubs and at gigs (and even weddings) – singing at the top of my voice. I’ve even been known to do a bit of karaoke. True story: I once sang on stage in a bar in Las Vegas. I also danced on a bar in Vegas but that’s a whole other story for another time.

Sadly, becoming so ill put a stop to this regular ritual. And my hypersensitivity to sound meant I had to take a step back from all music, even listening to my favourite bands from the comfort of my own home.

Music is my therapy

Rediscovering music has led me to a realisation: Music is my therapy – it always has been, I just lost it for a while. There have been many times when music has saved my life. Listening to my favourite bands during bouts of depression, and connecting to people through a shared love of music has been a lifeline over the years. And socialising through music, playing, singing, dancing.. they all make my soul shine. There has been a huge gaping hole that I need to fill again, for the sake of my mental health.

Image description: a collage of various photos of myself with friends in pubs, clubs and gigs.

Writing has partially filled that gap. It has allowed me to express myself creatively, given me a voice and an outlet to work through my emotions. But I desperately need music back in my life.

As a kid I took guitar lessons. I loved playing the guitar, and singing along, but I was so self-conscious about not being very good and about making mistakes. Without the confidence to practice out of fear of being mocked, I gave up. I really regret this and I want to start learning the guitar again. I care less now about what people think, and my fear of failure has diminished over the years. But now I have another obstacle – my health.

I don’t know if I’m going to be well enough to play guitar. I don’t know if I can adapt the way I play to allow myself to do so from my bed – but I’m bloody well going to try. Yep, I have ordered a guitar – just a little classical one. I’m not going to put any pressure on myself, I’m just going to see what happens. And if I find I’m not well enough to play right now, I will have a guitar in the house for when the time is right.

In the meantime I have started listening to music again, and singing along. I have to limit my exposure because noise causes me pain, and singing is exhausting. But I’m loving it, and sometimes you have to say ‘fuck it!’ and do it anyway. 

I will not let chronic illness take away my happiness

Near the end of my MEwishes campaign I published a wish of my own following some frustrating emotions and unwanted realisations about the restrictions chronic illness places on my life:

Image description: Selfie of a woman (me) with a shaved head, lying in bed. Image text: see below quote.

“I have so much drive and ambition – so much I want to achieve in life. But I live in a body that isn’t able. I wish people understood how frustrating and soul destroying it is not to be able to follow your passions, and fulfil your dreams. I constantly have to hold back and some days this realisation is too much to bear.”

But I am determined not to let my chronic ill-health dictate all of my life’s narrative. I have to be realistic – there is a lot I’m simply unable to do because of my disabilities, but I will not let ME/CFS take away my happiness and my sparkle.

Enjoy the process of learning and growing

This post has been a bit of a ramble without any real direction, but I guess what I’m trying to say is: don’t forget about the things that bring you pleasure – please try to find time for them. And try to set aside the fears we all have about failing – enjoy the process of learning and growing. Perfection isn’t real and you don’t have to be good at something to enjoy it.

Pick up that paint brush, dance around the room, write what’s on your mind, take lots of photos, immerse yourself in nature, pitch that idea to a magazine, record that podcast, learn a new instrument, sing that song…

If, like me, your spoons are limited I have written a post full of low energy creative hobby ideas, with some beautiful examples from my readers.

Chronic illness can put a halt to our many goals and ambitions – our passions are often left unfulfilled. Although we may have to down scale our dreams, we can still find ways to pursue these acts of pleasure – and discover ways to make our soul shine.

If you haven’t yet discovered the delight that is James Bay’s Live Lessons please head over and have a listen. You don’t need to be a guitar player to enjoy them. Take care x

I’m always on the lookout for new (or “new to me”) music. Please comment below with your favourite songs or artists. Thank you.