My Mantra: “Just breathe.”
Hi there! I’m Krystina, originally from Liverpool, and I now live in a little coastal village in the UK. I’m a musician, research nerd, audio junkie, teacher, cat lover, all around crafter, and I live with chronic pain.
I love music, animals, polka dots, spooky things, notation, cats, bonfires, making anything from felt, and musical instruments, many, many, musical instruments.
I have Trigeminal Neuropathy , a condition which affects the nerves in my face and head. It causes burning, aching, and electric shock pain, allodynia, and paresthesia. Lots of factors contribute to triggering my pain; speaking, laughing, singing, brushing my teeth, eating, and temperature. Along with this I have chronic migraines and occipital migraines. It’s hard to tell, but on average I have about two a week, that last three or four days each – go figure, huh?
I worked as a professional vocalist for several years until the pain got too much, and now me and music? We’re on a break.
I started to find joy in other things, my friend and I, a fellow Spoonie, started a little craft business called Little Rockit where we make bespoke beautiful things! I found so much joy in writing, and creating things in a different way.
I started my own blog in 2012 to find others with my condition, and to provide support as I couldn’t find any information online. Over the three years I didn’t find a soul, weird no?
Blogging is an especially easy format for me, and allows me to share what I want to say, at a time when I am unable. Things are up in the air for me right now, I can’t work at the moment, and various ailments, not in the least my condition, have prevented me from continuing with musical projects.
I find it very difficult not to laugh, smile at others, and indeed have a good chat. However as these simple gestures become increasingly difficult, I fear that others may not understand that, I am smiling, I am laughing, and I am listening.
Now, the Spoonie community is growing bigger than ever. We are making contact with others, raising awareness, and inspiring research with our words.
We may have invisible illnesses, but our voices can be very much heard!
That’s why I am super excited to be part of the wonderful team at Migraine Mantras, to help spread the word, and support others living with chronic pain.