FND Awareness Day UK | 25th March 2022 | Jody’s Story

Hi, I’m Jody I am 18 years old and this is my FND story 

I Just passed my Level 3 in childcare and education and had just started my first job at a nursery. Then one day in July 2021 I came back from doing a long shift at work, and I went to the shops with my mates to get some bits as it was my mum’s birthday that day. On the way back I started feeling tired and dizzy. The last thing I remember seeing was a bright street light shining at me before collapsing, and by luck my friend caught me in his arms and sat me up against a wall. I then started banging my head against it and lost all control of my body. It was horrible what started off as a normal day was the start of something terrible instead. 

After that I started having seizures more often, until it got to a point of having them everyday and having to deal with all types of symptoms such as; seizures, temporary paralysis, nerve and muscle pain, tiredness and it affecting my senses like my eyesight and hearing before having a seizure. I was rushed to hospital 6 times but unfortunately the doctors and nurses couldn’t do anything as none of us knew what was causing it. 

On the 7th visit the hospital kept me in overnight, and a neurologist came to see me and diagnosed me with having FND ‘dissociative seizures’, and said that is no medication she can give to me and could have it for life. 

From that moment my life changed, and all my goals and dreams seemed impossible and out of reach. I remember coming home from hospital that day in summer and seeing all my friends going out and having a laugh. Except this time I wasn’t coming with them. I felt broken but also had mixed emotions as it just did not seem real at first. As time went on I had go on long term sick leave for months, and was having between 5-18 seizures a day. I soon got a wheelchair, which had to be pink of course, but what hits me the most is how much it affects my mental health as it feels like I have more bad days then good sometimes. 

At 18 years of age I’ve always imagined me going to nightclubs, out with friends and enjoying life. It has taken a lot of time for me to adjust to what my life has become. As time went on I became seizure free for a bit, and even went back to work part-time, but then had an FND relapse early this year and still trying to get back on my feet again. On the positive side I have recently seen my neurologist and working out a care plan for myself. 

After 610 seizures since July 2021 I have had 19 seizure-free days this month, which is the longest I have ever gone seizure-free

I feel happier in myself and have signed up to support groups to learn more about my illness and the different ways to help the seizures. Most of all I would like to thank my mum and dad who I wouldn’t be were I am without them today and lastly my brothers and friends who always take the time to check up on me when I am in hospital I love you all

Written by Jody, London