We took my mobility scooter to Brighton Racecourse for an Orbital gig, and…WOW!
In recognition of Invisible Disabilities Week and Invisible Illnesses Week this coming week, I thought I’d share with you my own story about living with chronic illness. I wrote it in May this year as part of ME Awareness Month here in the UK.
If you’re not sure what ME is, you can read more about it here.
This is the hidden side of ME – and of me.
ME exists: it’s an invisible illness that’s disabling and isolating, no matter how sociable you are or how many friends you have to help when times are tough (and I love you all – thank you for your support).
It’s not just ‘tiredness’ – if only it were that simple! – it’s constant, chronic pain, pea-soup brainfog and nausea, and exhaustion so draining that you can’t lift your toothbrush to your mouth or brush your hair, let alone leave the house.
I’m lucky in that these days I’m no longer bedridden for weeks/ months, nor challenged like some ME sufferers who are so weak they struggle to swallow or speak. My friend’s cousin Sophia was so sick and weak she actually died of ME.
In the past, a glimpse of sunlight through the curtains, and any unexpected noise translated into acute physical pain for me. It was agony, and left me in continuous pain even today – albeit on a lesser scale.
I felt nauseous for two years constant, and my periods stopped. My whole system went into freefall and for a few years it was absolute hell.