‘You’re quite a celebrity around here,’ my neurologist says, as mum and I meet him in London for the third time since my superficial siderosis* diagnosis in March 2017.
Surprisingly, for someone who’s found fame for having a rare disease, I’m relieved. It’s taken five years to get diagnosed and specialists are finally noticing my nerve pain, ataxia (lack of coordination and balance), bladder weakness, crippling constipation, increasing deafness and most lately, tinnitus.
MY NEW ‘NORMAL’
I still remember waking up one morning in June 2013 feeling like my left knee was in a vice. It was to become my new ‘normal’ as the sensation gradually spread. Sadly, all the neurosurgeons did was repeat MRI scans on the spinal abnormality they operated on when I was just three years old, then tell me nothing has changed. Everything has changed.
I used to be nicknamed Patsy (like the character from Ab Fab). I was the party girl. But bar-hopping, gigs, festivals and travel are off limits with my new jelly legs. As a 42 year-old single woman, it’s not ideal. I’ve done a lot of soul searching and tried lots of avenues, turning to mentors, retreats, group therapy, naturopaths, homeopaths and even cooking lessons. Self-care has become a priority.
The friends who’ve stuck by me are precious. I have changed a lot and can’t go out much – we’ve all had to adapt. The last time I tried to get to London and back alone for work, two strangers stopped to ask me if I was alright. One said outright, that I looked drunk. I was offended, but later fell over in a pub – sober – in front of my colleagues anyway.
HOW I COPE
Despite all this, I’m trying to keep up with my everyday life. I continue to work full time as an Editorial Manager, but I rely quite heavily on my mum and stepdad for things like shopping, cleaning, and looking after my cute and comforting kitten, Bodhi. I hardly ever take time off sick and can work through a six, seven, or even nine out of ten for pain. I’m saving my sick days for a ten.
As the MRI scans show, my famous spinal cord is certainly one in a million. It’s thinning at the bottom and even splits in two at the top. It’s a miracle that it’s got me this far – guess that’s why I’m a ‘celebrity’ at the hospital – so I’m not giving up on healing it. I’m very into the mind-body connection and using visualisation and meditation to heal. Though I am finding it harder and harder to stay positive – my body feels so broken that it’s not much fun living in it.
Whatever my mood, living with a rare disease is forcing me to make better choices from food to friends and even fashion. Comfortable, stylish clothes are practically as rare as me! I’d like to help others in chronic pain to find them more quickly. That’s the one good thing about this illness – the sense of purpose it’s given me. I only stopped beating myself up when my body hit back.
*A rare disease caused by blood mixing with spinal fluid and getting carried up to the brain where the red cells die off but iron sinks in and has a toxic effect on the nervous system.
I’m a 42-year-old single, writer and editor working in retail. I’m a bit of a quirky, creative person, and am generally always talking about one idea or another – from sensory-friendly fashion to TV scripts and books! I love swimming and spending time with friends, trying new places or brainstorming our next venture over good food and drinks.