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.
Since my allergy to peroxide made itself known (read more about it here) my hairdresser has had to bleach my roots in foils extremely carefully, ensuring none of the compound has the potential to touch my scalp. This takes aaages, but thankfully my hairdresser is extremely patient, and we’ve even become friends from spending so much time together. Needless to say this is when we tend to have a quality girlie catch-up.
Prior to my appointment I also do a patch test with each individual coloured dye – even if I’ve used it before. I generally find Manic Panic to be the kindest on my hair and scalp.
After the bleach my hair is usually dyed in crazy-coloured streaks, which means yet more foils. Since I like a trim too, this becomes a lengthy process, resulting in almost a day at the salon.
Well, I don’t know about you, but between work and kids I don’t have a day to devote to my hair – especially if I want the colour to last. Add in a chronic illness which means I’m not great at being upright for any length of time, I’ve had to come up with an alternative system to speed up the process.
Sarmistha from Styleovercoffee was sweet enough to comment on one of my posts, and from there I discovered her blog and Instagram.
Needless to say, Sarmistha’s my kinda girl, blending pattern or print with a certain style sensibility. Take this image, for example: yellow and pink being one of my favourite colour combinations (the other is pink and orange). I also love the way she’s chosen a bright blue tarp as her background, which makes for an atmospheric image! Clearly not only a talented lady but a resourceful one too: I ❤