Loving wife, great mum, good friend and a success in my career.
“"Life can be hard, life can be cruel but even with Narcolepsy we can have a positive future. Narcolepsy is part of who we are and what makes us stronger"." Jo Smith
Narcolepsy is part of who I am. Fighting Narcoleosy made me stronger.
I was diagnosed with Narcolepsy with Cataplexy at 15 and can't remember a day when I didn't feel tired. I refused to let it stop me living and learnt to recognise my limits. Battling Narcolepsy every day has made me stronger, it is a part of who I am, a loving wife, great mum, good friend and a success in my career.
This is my story: At 3 I was rushed to hospital to have my appendix removed before they burst. Around this time my mother met the "step-father ". Soon after, I recall my first SP/HH. It terrified me and I started bed wetting. For 4 years I was too terrified to leave my room in the dark. My bed wetting was put down to the changes in our lives. I was teased and bullied by my "step-father" for bed wetting, making my shame worse. The "Nightmares" continued.
At 5 I contracted TB then numerous bouts of tonsillitis. My tonsils were removed at 8. After, I recall falling asleep at school. To stay awake and I held pins in my hands and dug my nails in my palm, anything to stay awake. Falling asleep after school gave the step-father a reason to bully me and throw shoes and boots at my head so I hid my sleepiness.
At 12 I went weak at the knees when I laughed. Soon I was having complete muscle loss, falling to the floor with no control. Worried about ridicule from the step-father I told no one. By 14 I was falling sleep every day. I was missing so much of my education and took toilet breaks just to close my eyes. This was MY life and NO-ONE seemed to notice or care? I was no longer afraid of my step father because I had a greater fear -sleep.
At 14 I told my mum who listened but didn't understand until we moved to a refuge. My mum seen my sleepy episodes and my falling down. I couldn't stop the sleep and feared it due to sleep paralysis and hypnagogic hallucinations. I was been physically attacked in my sleep, seeing monsters and shadows being pinning to the bed and been touched and assaulted. I was terrified. I couldn't move, scream or cry for help. I could see, hear, feel and smell. I traumatised and exhausted. On the outside I looked fine, on the inside I was living my own personal hell.
School was a 40 minute bus ride and I fell asleep, missed my stop and left myself vulnerable. My mother now realised something was wrong and took me to a Doctor. At 15, I was referred me to a neurologist. For two weeks I was under the micro scope, questioned by the neurologist and interviewed and questioned by students. I got my diagnosis but there was no cure or treatment for Narcolepsy in the UK I had to live with it. Anti-depressants were prescribed for cataplexy, they helped.
At school I focused on the subjects I needed to get a training course. I using coping mechanisms including napping at lunch time , splashes of cold water to my face, cold eye drops, staying on my feet. I refused to let N/C rule my life or stop me living. I socialised but it took days to recover so I got a job in a bar, the loud and busy atmosphere kept me awake.
At 19 I met my husband and best friend. I was afraid of telling him and before I had chance I fell laughing and hit my head. He was understanding and supportive. When I napped he "mixed up a few tunes". We married and have two wonderful children together. I had my eldest child at 19 and my N improved. I needed two naps and worked these in with my son. I had a good support network. Accidents happened when I burned food or fell asleep running the bath, I started taking baths on a morning, my alert times. I returned to work and lived on coffee, pro-plus and sugar bursts. It was not always easy. In 1996 my mother was killed in horrific circumstances, this did not break me but made me stronger.
At 30 I retrained and Ran a successful Childminding business until I was offered a job with my local children's centre. I now work in Children's Safeguarding services. I'm doing a job I enjoy, helping and supporting children and families. In 2008 I went on medication due to increased fatigue. I started modafinil. I listen to my body and prioritise. I am strong, positive and remind myself of all the good in my life. I am focused on helping my children achieve success in their lives and educating the wider community about Narcolepsy and Cataplexy. "I am not alone"