What is EDS for me…..

EDS itself is lifelong and incurable, it will ‘flare’ at times but a base level will always be present.

For me that base level has slowly been ‘worsening’ in part due to treatments for symptoms and medications and in part as it is just the nature of my EDS.

Whilst EDS is incurable, some symptoms can be ‘treated’ to lesson their progression and or impact.

I.e physio and OT to help maintain muscle (something which is hard for people with EDS) and maintaining muscle is important to help keep joints and organs in place as my ligaments just give out (and other then surgery there are limited options for ligaments).

Or feeding tubes to help maintain weight and to get adequate nutrition.

Some of my base level everyday symptoms are; chronic pain, gastrointestinal failure, hypoglycaemia, hearing difficulties, hernias and prolapses, subluxations, fibromyalgia and arthritis, drop foot and peripheral neuropathy, bursitis and tendinitis, dysautonomia (dysfunctional autonomic nervous system), fatigue, serotonin syndrome.

This means that I get to be one of the most diverse, intriguing, stubborn, and comical people I know. Life with me is never dull and you never know where the next thing or giggle is going to come from.

From being able to be snuck up on and made jump really easily which get lots of laughs and good times at work, to being able to be really empathetic and understanding to a wide range of people. It is all part of me, and makes me who I am, I am not defined by these but I am moulded by them, the way I view the world is coloured by it and gives me an often unique way of seeing things. My life isn’t always fairyfloss and daisies, neither is yours….. but my life is full!!