'What's wrong with her?'

 'What's wrong with her?'

..is something I get asked quite a lot, and it's usually followed by people staring and occasionally pointing at the various tubes I'm attached to. I've been really open about my health for a while now, which has been scary yet so freeing too.

So I wanted to rewind a bit and explain what's actually 'wrong with me'.

I was born with Spina Bifida oculta, this is a fatty tumour growth on my spinal cord. The spinal cord is like the motorway that nerve signals travel down, but because mine has the fatty mass wrapped around these nerves, the signals cannot carry through and work as they should. This means I have lower leg weakness, bladder and bowel incontinence and gut motility issues too. In super simple terms,

Because my legs are weak and numb, it feels like walking on stilts, feeling detached from the bottom part of my legs.
Because my bladder doesn't work, I can't pee so use catheters to drain my bladder and kidneys, without this I'm at risk of renal (kidney) failure.
Because my bowel doesn't work, I regularly get blocked up (quite literally like a blocked drain) and have to carry out bowel washouts to avoid impaction, internal bleeds and blockages..all of these things can land me in hospital immediately and are extremely risky if not managed.
Because my gut struggles to work, I need tube feeds to maximise the nutrition I receive to keep me alive and nourished.

This is all in super simple terms but in a nutshell, that's 'what's wrong with me'💁🏻 Yet despite it all, life is still amazing. I have an amazing team at hospital, wonderful friends and family, so many things I enjoy like visiting schools to raise awareness and of course my favourite things on earth...Daisy my horse. If there's one thing I want to share, it's that you can still have an incredible life with an illness -especially when you #FindAWayNotAnExcuse (as my motto goes.)

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