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‘FND challenges me every moment of the day’

You approach the hospital, welcomed by the warm red bricks and grand façade. Staff walk purposefully to and fro across the square, files in their hands, ID cards around their necks. Ambulances and taxis pull up alongside you, dropping off patients, helping them in. You step up towards the entrance. A lady passes you by. She’s in a wheelchair. You enter reception. A friendly face at the desk gives you a wide smile as you rub gel into your hands. Away from the buzz of the square, it’s quiet, the ceiling high, the wood dark and glossy.A man is leaving the gym with his physiotherapist. He’s walking with crutches and his legs tremble. His back is twisting in awkward spasm. You walk down the corridor, long and straight. Footsteps rush past, urgent, hard working. Others are painfully slow and laboured. A girl is on the floor. Her body is thrashing in convulsions. A nurse calmly talks to her. What’s wrong? Does she have MS, Parkinson’s or epilepsy? Perhaps. Or perhaps it’s something else. Could it be FND?

Functional Neurological Disorder. I’d never heard of it either. Not until I found myself in the Hughlings Jackson ward, my body broken, my mind elsewhere. Debilitating symptoms wreaked havoc in my body. Seizures, spasms, paralysis, pain, fatigue, bladder dysfunction, the list went on and on. I felt confused and afraid as overwhelming emotions coursed through me, my mind detaching, my body fighting. I lost my home, my work, my friends, my independence and the ability to do the most basic of tasks. Life as I knew it seemed to dissolve around me.

But my diagnosis meant I was finally able to receive specialist treatment. Guided by a wonderful team of cognitive behavioural therapists, occupational and physiotherapists, I gained greater understanding of my mind, my body and my world. I began to untangle my symptoms and started to spot warning signs and triggers. I learnt grounding techniques to keep myself present, my mind and body connected. I worked on automatic movements in everyday activities, refocusing my mind-body connections and reducing physical tension. I started to understand how my thoughts, feelings and symptoms were interconnected, and how I could break the cycles that maintained and exacerbated my difficulties. I developed my daily routine, establishing my baseline and pacing types of activities using charts and scales to maintain balance in my day. I started to set weekly goals − a habit that has become invaluable. I continue to piece together my jigsaw puzzle, even though I don’t know what the final picture will look like. There’s currently no cure for FND, but this approach can increase quality of life and reduce suffering.

To me, FND seems to be a black hole in neurology. Despite it being as distressing and disabling as MS, Parkinson’s and epilepsy, it is so often neglected and misunderstood. It takes a brave neurologist to diagnose and treat the condition. I still feel incredibly lucky to have found one, even though it took 16 years and a medical crisis to reach that point. FND challenges me every moment of every day, but with specialist input, my toolbox of techniques, and plenty of determination and motivation, there’s hope. My continued work with The National’s team has meant I am once again embarking on independent living and creating a new life for myself.  To be able to take charge of my own symptom management and to gain understanding as to how and why my mind and body disconnect, has been empowering.

To give something back, I’ve been supporting The National Brain Appeal. I sell my crochet work to raise money for the hospital that helps me so much. While the charity does fantastic work to help improve the lives of those with neurological issues, increasing the understanding of the condition is vital. That’s why I’m so pleased to share my personal experiences in this blog and play a small part in highlighting FND.

To find out more specialist information on FND, visit fndhope.org.

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Laura Tivendale, 32, from Essex, patient and supporter

Posted on April 13, 2015 7:45 am
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