Do you ever wonder why certain things happen? Do you just except it and carry on?
Sometimes I think that I was given this condition to challenge me. I try not to feel sorry for myself as I don’t want to become a ‘victim’. I can get angry and frustrated waiting for the day that it all goes away (hopefully!!). Some days I feel almost normal but I know that it’s always there inside me.
The final instalment of my journey to diagnosis started in June 2013. After weeks of tests including Lumbar Puncture, several MRI scans and lots of other delightful intrusions my neurologist felt that he was close to discovering what was wrong.
It was a hot Saturday afternoon in June. I was at home with my eldest son. I was in my bedroom resting. As I went to get up, my head began to pound and I began to experience a burning pins and needles sensation over my head and body. Then my eyes clamped shut and I couldn’t open them. I had to call for my son to help.
He came in to help me on to my bed, then out of nowhere my body flung backwards and I began to convulse violently. My poor boy had to witness this for the first time on his own. He was so amazingly brave, he called for an ambulance and stayed on the phone until the medics arrived. Eventually after convulsing for about 30 mins they managed to ease my symptoms with medication. Unfortunately, the seizures kept coming and once again, I was admitted to my local hospital.
My neurologist was informed and I was sent back to Queens Square for another round of tests.
In August 2013, I was finally diagnosed with Functional Neurological Disorder. My symptoms can vary but I generally live with regular migraines, non epileptic seizures and extreme fatigue. I experience constant pain but I am able to manage day to day on my medication. There is no cure for my condition but there is hope that eventually it will ‘burn out’. There is a detailed explanation on the following website: http://www.neurosymptoms.org/ . This website details all the possible symptoms someone with FND can experience.
FND has been a life changing condition for me and my family. However, I am lucky as I have the great support system around me. Although I have had to cut my work hours, I am still able to work in the job that I love. I try my best to support my children and live a relatively ‘normal’ life.
When I was diagnosed I had a choice to make. I needed to decide whether this illness was going to define me or whether I would choose to fight it all the way. I choose to fight and I hope that my story will help to give strength to others living with a sometimes invisible illness. Over the coming weeks, I plan to share ways that I have adapted my lifestyle in order to function with FND. As I have mentioned before I hope to spread awareness and to help anyone else who might be suffering.
Thanks for taking the time to read my blog. I plan to update in the next few days.