5 years today...

Looking back on a day that changed my life

By Susan Ronaldson on April 30, 2018

What were you doing five years ago today? I was in a hospital bed wired up to a machine with electrodes attached to my skull! If you’d told me that within a few years my life would have turned around so dramatically that I would be preparing to row the Atlantic, I doubt I would have believed you. But that just shows how we can never really know what – both good and bad- is around the corner.

In 2009 I had an operation to remove a large ovarian cyst (I’ll just leave you with the word melon). As I got back on my feet I started to have times when I would feel a bit funny – not feint, more like my body was shutting itself down. I dismissed it at first as doing too much, but months later these episodes got more frequent and more dramatic. I would start to slur my words and the left side of my body would go numb, with my left hand retreating into a fist and sometimes going visibly blue. I’d partially lose consciousness and my eye lids would flicker uncontrollably. I couldn’t talk and I couldn’t move. And my emotions would go all over the place- sometimes I’d feel sadder than I’d ever felt, and sometimes as high as a kite!!

Susan at the gym
Susan with the toilet

In early 2010 I was diagnosed and started treatment for epilepsy. That involved taking lots of drugs to control the seizures. Only they didn’t work. For 3 more years the seizures continued – sometimes as many as 5 a day – and the drugs were changed and the doses increased. By early 2013 I was a complete wreck. Drugged up to the eyeballs and exhausted from the seizures, I could barely function. I couldn’t really do my job properly and I just felt ill and exhausted all the time. And very, very down.

5 years ago today the machines I was wired to showed that I didn’t in fact have epilepsy at all - but a condition called non-epileptic attack disorder (NEAD). Which is a mental illness. Now that was a weird thing for me to get my head around and reading this you might be thinking all kinds of things. I wasn’t faking the attacks – there was no way I could do the thing with my eyes for a start! They were just as real but they weren’t caused by a fault in the brain, or at least one we understand. NEAD isn’t well understood but it’s thought it is brought on by trauma – in my case presumably the operation.

The diagnosis didn’t mean it went away overnight… I’d still feel the attacks coming on… but now I knew I could stop them. Firstly, I had to create the best conditions for my mental and physical health – so good quality sleep, eating regularly and controlling my stress. I practised mindfulness, meditating every day and when an attack would feel like it was coming, it was mindfulness techniques – principally breathing- that allowed me to head them off. And I’d stop internalising stuff… I may appear quite an emotional and extrovert person now, but that is because I learnt I have to talk and express how I feel rather than hiding it away.

Susan with Caroline and Lisa
Susan trying on the wet weather kit

I’m now fully recovered and the condition is well in the past. I never stop being grateful now that I can drive, climb, travel and hopefully row a great ocean! In fact at 41 I am, touch wood, the healthiest, fittest and happiest I’ve ever been!

One of the things that annoys me most is if people ever imply that having a mental illness makes you weak or lacking in resilience. For me you have to be doubly tough!! It’s not lost on me that I am about to take on a challenge that everyone says is really a mental one. I do feel that when we get to the finish line (and we will!) there will be a big part of me going – see, tell me I lack resilience now!! But actually, however tough this row is, it won’t be the toughest challenge of my life. But it will be a culmination of a journey - a chance to show that no matter how bad things are, there is hope and life can still bring on the extraordinary.

I didn’t get better on my own – I had amazing family and friends supporting me. And Jess, Caroline and I would love your support now. Check out our website at www.statusrow.com

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