Hey I am Nicola and I have been living with FND since 2017. I was a primary school teacher with a very busy life. I had pain in my hip and was walking with a limp, I just thought I hit against a student’s desk. The pain worsened so I went to my GP, who ran tests and sent me for physio. I was there not even 5 minutes and she said it is definitely neurological and referred me for tests with a neurologist. After test and tests I was referred to a specialist neurologist team in London who diagnosed me with FND.
Then two months later my life changed over night as, I woke up feeling weird and not quite right. I traveled to work and then I ended up collapsing in the street and hit my head against concrete. I woke up surrounded by incredible people, who looked after me before the ambulance came. I was taken to hospital and things worsened from then on. I experienced more episodes of stroke like episodes where I lost complete control of my entire body. I was unable to move, talk, feel. These episodes always resulted in a hospitalisation and me feeling scared and frustrated at my body. I experienced seizures which again resulted in hospitalisation and medication. I had experienced full body tremors which were painful. My gait worsened after each episode and resulted in me needing more help from my amazing mum and needing physio to learn how to walk again. I suffer daily with pain and fatigue.
I am extremely fortunate to have had been helped and supported both by my incredible family and local teams which have been amazing therapists who have worked hard with me to get me back on my feet. I then again was fortunate to have had an opportunity to join a FND inpatient program at the National hospital for Neurology and Neuroscience. The program was absolutely incredible the team were so amazing and had a clear plan. With there support and guidance of the multi disciplinary approach after 4 weeks I was able to walk independently, get myself washed and dressed, cook, clean, go out on public transport. I left there filled with so much pride and confidence. I left with so many tools and a different approach. I was symptom free for a few months just odd days but would bounce back fast. I used graded goals when tackling tasks when leaving hospital so really helped.
I have been seizure free for 2 years now such an achievement. Unfortunately when the COVID -19 pandemic hit I relapsed and began to experience symptoms. I have been using the techniques I have been taught and taking each day as it comes. I have been focusing on other things as a distraction. I have been going out for walks along the beach with my family, joined adaptive dance and yoga classes, took up sewing, started a course, joined in with FND zoom sessions. It has lifted my spirits and the incredible support from my family, friends, therapy team and other FND Warriors you all give me the strength to keep fighting and to keep smiling.
By Nicola, Cumbria