FND (Functional Neurological Disorder) Awareness Day was this week. Raising the profile of the disorder is so important. It took fifteen years for me to receive a correct diagnosis and specialist treatment to help me self-manage my condition. That was half my lifetime and far too long. Even so, I consider myself fortunate; I have a diagnosis and I have access to a world-class team of medical experts.
Last year I marked the day by writing a feature for The National Brain Appeal. It’s the wonderful charity that supports The National Hospital for Neurology and Neurosurgery, where I receive specialist treatment. As I wrote, I wanted to draw the reader in, giving an idea of how diverse and baffling FND can be in its presentation, before leading into my personal story and the hope that the hospital gave me. You can read it here.
This year I’m sharing extracts from the book I’m writing. Based on journals, it tells my story of diagnosis, neuro-rehabilitation, regaining independence and rebuilding a life stripped bare. It’s a journey of loss, of discovery, of survival and of hope. A journey of learning to live with a condition most doctors haven’t heard of and many who have are afraid to treat. Parts of the book make difficult reading, others are full of joy and wonder. It’s the highs and lows of life, magnified when living with a chronic illness.
Excerpts from ‘Notes on Being Me’ by Laura Tivendale
I feel weird. I’m floating. Am I here? Am I not here? Where am I? Something’s rising inside me. My body’s falling away. I tense. I twitch. I fall. I shake. I’m gone.
I’m back. It’s black. It’s dark. I hear voices. I sense panic. My body shakes. “Laura, Laura, Laura”. I can’t speak. I’m gone.
I’m back. My heart’s racing. My heart’s pounding. My breathing’s fast. I need air. My head hurts. My body aches. I can’t move. I’m hot. I’m sweating. Where am I? What’s happened? What’s wrong? “Laura, Laura, Laura”. I’m gone. I calm. I sleep.
* * *
She swoops in like a guardian angel. She’s confident and quirky. Her nails are painted pink and purple. I can’t take my eyes off them. I like her. She takes her time. She asks me questions. “What happened when you were fourteen, Laura?” She examines my body. “Can you move your index finger from your nose to my finger?” There’s a thoughtful expression on her face as she listens and watches. She treats me as a person. I feel valued and respected. I trust her. “I will help you,” she says, “I understand.”
* * *
I’m under my tree. It’s my favourite hiding place. Not that I can hide here. They watch me for seizures, day and night. I can pretend though. I can look out into the field in front of me. I can gaze up to the sky. I can pretend that the hospital building isn’t behind me. I can pretend that my head isn’t covered in electrodes. I can pretend that the distant chattering voices aren’t of doctors, nurses and patients.
I’m lying in the shade. The grass feels cool and damp beneath me. The sun is warming my skin. The leaves above me rustle gently in the breeze. I look through the trees. I see swallows flying. They are so graceful, so free and at ease. They flutter their wings in a little dance and then effortlessly glide. I see a buzzard. It looks magnificent swooping above me. I’m under my tree. I feel real. I feel alive. I feel me.
* * *
I’m sitting in the meeting room. It’s the room they use for ward round. Today, the patients outnumber the staff. I look at the faces around me. Two men. Six women. We all have FND. Our stories are so different and yet there are unspoken words of understanding.
I immediately felt at home back on the ward. I was reunited with staff in the one place I felt truly understood. My first group session was a strange experience. I sat nervously. It was the first time I’d been in a room with other FND patients. The suffering was palpable. Not just the outward signs of wheelchairs, crutches, muscle spasms and stutters. The room was tense with frustrations, of mistreatment and voices desperate to be heard.
The session was spent looking at our diagnosis; what it meant and the confusing array of terminology that came with it. We were given a symptom checklist. I ticked 31 boxes. I saw the look on the doctor’s face as he glanced at my sheet. We were reassured FND could be diagnosed as well as any other disorder and likewise, uncertainties and misdiagnosis were rare. I was surprised by the feelings of the other members of the group. They felt doubtful, fobbed off and misunderstood. I felt I had a diagnosis that resonated with me and a viable plan of action. It was confusing. I felt choked up. I was forced to think deeper. Once again, I began questioning myself. Was what I believed the truth?
* * *
You can find out more about FND by visiting www.fndhope.org, www.neurosymptoms.org and www.fnddimensions.org.
