Opening Up Honestly & Very Vulnerably About Living With Functional Neurological Disorder.(FND)


I have lived with multiple number of health complexities for many years – some of these are medically diagnosed but there are many symptoms that have left me free falling into a state of despair. This despair left me spiralling out of control physically, mentally and emotionally to a dark place, where seriously no one ever wants to go. I was ready to quit trying in every regard of life because health had deteriorated, I was struggling with being paralysed down my right side, I was having limb weakness, bodily jerks & twitches, dizziness, blackouts & many falls and of course I was struggling daily with my diagnosed medical issues. Luckily a hospital stay found a couple of new specialist doctors and they determined that these unexplained symptoms were what is referred to as ‘Functional Neurological Disorder’- FND. It allowed me to begin thinking and breathing a positive path again even though this only new neurological finding is still relatively new to medical research, there was findings of why my body is doing this. 

 I’m still facing the medically unexplained, due to FND having not that much information about it or its treatments, but it’s a diagnosis and that’s a start and purely and simply, I kind of knew deep within my soul that theses symptoms that I live with was not going to be a nice tidy diagnosis to live with or to be able to explain.

But the aim of this post is to raise awareness for myself and explore the possibility of connecting with others globally that have this disorder bringing connection and support.   
So how is ‘Functional Neurological Disorder’ explained;

 
I have so much gratitude for  my specialist neurologist for testing, testing and researching my symptoms and being able to determine, there is a problem within my functioning neurological system. The neurologist was completely open about how little they know about this area of health BUT reinforced that they know it is NOT, “all in the mind” which was beautifully cleansing for my anxiety, as I’ve been attacked and bullied by many telling me that there was nothing wrong and I am just crazy. For the first time ever, with these symptoms a medical professional was discussing a diagnosis and actually given me somewhere to go for all the questions that I have squished within me about what’s going on. The neurologist suggested getting familiar with http://www.neurosymptoms.org and  I can’t say how helpful this website has been and will be! Finally I was having a conversation with a medical specialist who was showing me compassion, empathy and understanding and I wonder why my other specialists could not be like this. Since having these conversations, I have had very positive and reassuring discussions with my GP, as well as my  neuro-physio and occupational therapist to making living more accessibly normal.
So going forward…..my inner voice still niggles a little about what if they are missing something serious, however,  it is becoming more clear to me that the ‘functional’ tag is probably going to be my tag for these symptoms at least and to be honest it comes with a sense of relief. A relief that these tortuous years of chasing explanation for these final unexplained symptoms might be behind me and everything that comes with each appointment – NOW, I can focus on managing what i live with.

It is taking a guts to write and even more guts to publish this post, because I still fear lots about being so open about this disorder because of the stigma given to these chronically invisible and very complex health challenges given by so many in the community.  But through being open, honest and very vulnerable, I hope to open up communication for others that are struggling with this disorder too. I want to increase awareness so that more research can be done with the hope that maybe medical evidence will have more answers for the people that live with functioning neurological symptoms but till then , I will work with my physio , occupational and psychological team on exercises to help my body rebuild.

If you are reading this today and your neurologist has discussed FND as a cause for your medical issues, send me a message and let’s connect and walk together supporting one another and raising much more awareness and assistance.

💋

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