I never thought I would openly speak or even post about this, but I get questions from people on a weekly basis if I make a rare appearance outside my home. Most people are shocked to see the deconditioning of my mobility, being unable to walk unaided 95% of the time at the age of 23, and make a variety of assumptions that are incorrect!
I spent a long time trying to fight against my neurological issues and chronic pain, and pretending I could just push on out of fear of how people would perceive me. To struggle continuously with countless trips and falls, often collapsing due to weakness, and lose sensation in the right side of my body affecting mainly my leg and like it doesn’t belong to me due to loss of sensation, is terrifying and leaves you very vulnerable. You become fearful that you going to fall in public and what people will think. I also have memory loss issues which is very embarrassing and has made me very isolated. I can’t enjoy the things I used to and this is all because I have a condition called Functional Neurological Disorder (FND).
The brain of a patient with FND is structurally normal, but the nervous system doesn’t function correctly and can occur anywhere in the central nervous system. Following a car accident two and a half years ago, and multiple work injuries to my spine, I have been left needing to use a stick to walk. I have been battling this debilitating condition for too long that it has taken a lot from me, my work and my friends, but I am on the road to recovery! I have a fantastic Neurologist who is extremely knowledgeable on this condition and others in the same field, and understands the severity and complexity it can require to treat. It’s not just a matter of giving a person with FND six sessions of physiotherapy or psychology services and then sending them on there way! This is why so many FND suffers can be in remission and then relapse once they go back home, or deteriorate further. I myself have been in remission twice and both times relapsed and my symptoms got more serious, leaving me unable to do the simplest of tasks for myself without being in extreme pain, and causing a fall or injury.
It’s not all doom and gloom now that I have my diagnosis confirmed and I have a Neurologist who is willing to help. I’m determined to get me back on track, get my life back to the old me and the way I used to be!! But for right now I Am Me! I am working on music and writing songs as I’m a keen musician, and want to provide a platform for awareness. Singing is my biggest freedom and escape from my pain and condition, and l that have big dreams. I will not let FND stop me. I’m coping the best I can and I don’t expect everyone to understand, and that’s perfectly fine. I am aware of the medical facts about my disability and I am not afraid of the stigma anymore! I just hope that anyone else out there that’s going through a condition like FND knows that they are not alone and truly believe we Stand Together Stand Strong!! #FND #Hope #Survivor #IAmMe
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