After getting a probable diagnosis of Cerebral Palsy, Rhiann became a keen blogger, documenting her life and experiences with a neurological disorder. This is her story.
1) Introduce yourself – Who are you, where are you from and a bit about yourself.
My name is Rhiann, and I am 32 living in Pontypridd, in the South Wales Valleys with both my parents. After graduating in 2008 I have a BSc in Psychology from the University of Glamorgan (now the University of South Wales).
Due to my keen interest in psychology, and how the brain works, I love psychological dramas. I love watching Criminal Minds, as well as true crime stuff, recently binge-watching Confessions of a Killer: The Ted Bundy Tapes.
My health has left me unable to work, but I have since become a keen blogger, writing and documenting about life with a neurological disorder. I love writing my blog and utilising social media as a means of raising awareness. I am always looking for new ways to expand my writing portfolio. As well as writing I am an avid bookworm and can regularly be found with a book in my hand! Jodi Picoult is my favourite author, having devoured all of the books she has written. I am also a fan of the classics like Jane Austen. I am a film and TV buff, and when I am experiencing bad days, I can be found binge-watching my favourite TV programme or watching one of the movies in my collection.
2) What illness/condition/disability do you have? What symptoms did you experience and when did your symptoms start?
My medical problems have been found to be incredibly complex, baffling many doctors and adding to the long wait for a diagnosis. I was given a probable diagnosis of Cerebral Palsy as a result of an injury at birth. However this is difficult to corroborate as it was so long ago. Another doctor diagnosed a long-standing brain stem lesion as well as a Functional Neurological Disorder.
Functional Neurological Disorder is not a structural abnormality of the brain so cannot be seen on an MRI. It is a problem with the functioning of the nervous system which hampers the brain’s ability to send and receive messages correctly. This leads to a myriad of different symptoms. I also suffer from a vestibular disorder which affects the functioning of my balance system.
These symptoms impact every part of Rhiann’s life
All this has had a tremendous impact on my life; leaving no part of my life untouched. As a result of the neurological issues, I experience a great deal of pain in my legs. This is constant and debilitating. I also encounter a constant trembling feeling in my legs, an incredible shaking feeling as though they are going to collapse, which they often do. Due to this, falls, and my legs unexpectedly giving way, is a regular occurrence in my life. I’m not always able to get straight back up afterwards which means I’m not able to go out alone. I’m either accompanied by my parents or my carer when out.
The vestibular issues have resulted in a permanent feeling of dizziness. This leads to a perpetual state where my world feels entirely off balance. It has also led to frequent episodes of vertigo, and visual disturbances such as double vision.
As well as the physical symptoms, the mental and emotional impact has been just as damaging. Not being able to go out alone has led to feelings of loneliness and isolation, resulting in depression. The unpredictable nature of the symptoms, never knowing when they are next going to strike can also lead to feelings of anxiety, and many ‘what if’ scenarios that go around in your mind.
3) What was it like getting a diagnosis? Were doctors good/bad? Were you taken seriously? Did it take a long time?
Getting a diagnosis was a relief. It felt like a badge of validation for everything that I had been experiencing for a long time. It was also a relief as the journey toward a definitive diagnosis had been incredibly long and tedious, being referred continuously to different medical specialities, sometimes more than once. The process was frustrating, as many doctors kept putting the cause of the symptoms as anxiety. Still, I found the doctors were sympathetic despite being narrow-minded and solely focused on psychological issues. I was diagnosed during an appointment with a specialist in London and was impressed by their professionalism, understanding, compassion and the time they took to see me during the consultation.
4) Had you heard of your illness/condition/disability before you were diagnosed?
Despite having studied the brain a lot during my university studies, I had no clue or understanding of Functional Neurological Disorder.
There are many unknowns regarding the disorder and my prognosis.
5) How did you feel when you were told your diagnosis?
It was bittersweet, to be honest. In a way, there was a great deal of relief as finally I had a name for what I was experiencing. But, it also came with the realisation that what I was living with was for life which is a scary and sobering thought.
6) What treatment did you have? Were there any problems? Did it help?
I have tried many treatments over the years. CBT for example, although it helped with lessening the anxiety, it didn’t help with the physical symptoms I was experiencing such as the dizziness and trembling in the legs. To strengthen my muscles in legs, I have tried neurophysiotherapy which helped for a short time but they have since deteriorated again.
I am on medication to help with the pain and spasms in my legs, but they only help to ease the severity of them. Often with neurological disorders such as these, it’s about controlling and learning to live with the symptoms rather than curing them.
7) Did family/friends/colleagues take it seriously? Did they support you?
In the beginning, after the doctors diagnosed it as anxiety, my parents always told me to ‘calm down’ when the dizziness and vertigo became severe. This often caused me to panic, especially as I didn’t know what was happening to me and mainly because I was so young when it started. Since my symptoms began to deteriorate after graduating university, my parents have been massively supportive, always helping me in any way they can.
There is a small fraction of my family who I feel don’t understand which can be upsetting. I often fail to be invited to events, which can be upsetting as I’m isolated enough and my only real and meaningful friendships are with those I’ve made online. My Mum’s side of the family has been supportive too.
8) How does your illness/condition/disability affect your life?
Pain has now become a constant in my life. It’s like a kidnapper, enforcing you into a dark, dingy cage, with you as it’s innocent captor. It isolates you, robbing you of your already fragile independence. Pain is all-consuming, leaving no aspect of your life untouched. It has become the most influential voice in my life, stopping me from doing things I want to do and forcing me to stay at home when I wish I were out.
The falls, and the constant trembling in the legs, as well as the other physical symptoms such as dizziness and vertigo, have affected my confidence and self-belief. It can make me anxious and uncomfortable when going out as I am aware that my legs could give out at any moment. It’s unpredictable nature, and the fact that these episodes happen with no warning, make the ‘what if’ scenarios stronger.
I am unable to walk far because of the pain, weakness and trembling in the legs which have further limited my independence. All of this can often build up and I am prone to episodes of low mood and depression.
9) What is something you wish people knew about it?
I wish that people could understand that Functional Neurological Disorder is not in our heads. Yes, there is a psychological component, but like with a lot of medical conditions stress, anxiety and depression exacerbate symptoms.
10) Anything else you’d like to share about it or your experience?
Although living with a neurological disorder has severely limited my life, it has not ended my life.
In my personal experience, buildings with high ceilings exacerbate the dizziness and vertigo.
After my symptoms worsened and impacted my life more and more, I thought I would never travel outside of the UK again. But with time, and after building my confidence, I tried cruising and fell in love and have seen some incredible scenery. My favourite being the Norwegian Fjords.
Diagnosis is not the end of the story; it’s the beginning of a whole new one!
To learn more about Rhiann’s story check out her blog www.brainlesionandme.com
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