Six years ago, I was diagnosed with FND.
At that time, it was still called Conversion Disorder. I’m not much for labels, but in the ER that day, I accepted it fully. I have been ‘sickly’ for most of my adolescent and adult life and had to resign from work. This was after I ended up working for about two weeks a month and spending the rest of my time recovering. At this stage, chronic pain and fatigue together with other complications took up most of my energy.
So when I experienced the paralysis for the first time, it was from my neck down. Fearing that it might be a stroke, the ambulance services rushed me to the closest hospital.
Once in the ER, the doctor ruled out all possibilities including a stroke and infection. His professional opinion at the time was that it could be a neurological disorder. A neurologist was called to confirm the diagnosis. I was also assured by the nurse that this condition is very real. For the first time in a long time, I felt understood. I was then referred to a psychiatrist at the same hospital, whom I had to see the next day. By the time I left the ER that evening, my legs were still paralysed.
My visit with the psychiatrist proved wise. She was knowledgeable and took down an extensive medical, psychological, and family history of me and how it affected my behavioural patterns. As we spoke, I started to experience speechlessness, tremors and catatonic episodes, which continued at home after my visit with her. It was clear that my FND is as a result of Chronic PTSD (C-PTSD), depression and an underlying anxiety disorder because of my long-term childhood abuse and neglect. In order for her to perform a more meticulous examination, I was admitted to a mental health clinic on a 21 day programme.
This was necessary because my symptoms prior to admission worsened. The catatonia became longer, the tremors and muscle spasms kicked in and I started having seizures. At the clinic, we had various mental health talks and activities together with creative release sessions and tension releasing massaging. My psychiatrist saw me once a day, where she reviewed my progress after psychotherapy, medications and any other required supplements (Vitamin D in particular). An EEG was also done, which came back normal. A psychologist helped me with establishing coping mechanisms. She also prepared me for what to do at home after being discharged. Arrangements were then made to see a trauma counsellor who specialises in EMDR (Eye Movement Desensitisation and Reprocessing).
EMDR is especially helpful in treating patients with C-PTSD and PTSD in general. From this point onwards, 2016 into 2017, my symptoms had varying degrees of severity and duration. It was hard on myself, my husband and my kids. It’s very difficult to find specialists with experience in FND. Therefore our GP took over the medication monitoring while the psychotherapy and EMDR were covered by my trauma counsellor.
For most of my journey, I have had to (and still do) draw on my own strength to find the relevant resources in the times I need it most.
Recovery for me meant I first had to address my C-PTSD and the childhood traumas. It was hard and draining work. This reduced my FND symptoms tremendously. I can now identify and process the triggers associated with an FND episode.
What EMDR did for me is:
Since 2016, new information on FND and the functioning of the brain-mind dynamic slowly filtered through on the Internet. YouTube became my ally, and when I first heard of the concept of neuroplasticity, a big storm cloud uncloaked from my shoulders! No more doom-and-gloom. It gave me the opportunity to search for my own answers and the possibility to live and feel alive again.
The work by Dr Peter Levine (trauma releasing exercises) and the book by Dr Bessel van der Kolk, The Body Keeps the Score, helped me to listen to my body and to develop a keen knowing of what I need, and when I need it. The knowledge about developing new neural pathways drove me to unpack all my board games and puzzles. Little by little, I could extend my mental faculties and slowly regain better functioning (processing language, building connections, spark creativity etc.). Coincidently, my husband and I started re-watching our favourite sci-fi shows, Star Trek: The Next Generation and Voyager in particular. In an odd way, the series and characters allowed me to find the language to describe my trauma and experiences to my family. It provided me with new ways of viewing my trauma because I could identify with the trials and tribulations of certain characters, as they overcame their ordeals and setbacks.
In terms of improving my physical strength and exercises, housework seems to be doing it for me. It is my gauge to monitor myself and become aware of my limitations. To compartmentalise the work into doable chunks or like I prefer to call it, Galactic Quadrants. Getting the balance just right is the trick, without suffering a huge crash and a longer resting period.
Where do I find myself today?
I can manage well on my own, with occasional psychotherapy sessions. I still zone out from time to time, but I am able to bring myself back to the present. Performing two tasks at the same time sometimes causes my brain to malfunction. For example, I cannot clean my house and listen intently to someone talking to me whilst cleaning.
Other activities include taking up creative projects, engage in energy healing practices and Qigong.
Finding Dr Jon Stone’s FND work on YouTube and the Neurosymptoms FND App serve as confirmation to what I have experienced, felt in my body or thought about. I found validation, compassion, acceptance and a great understanding of the subject. My family can now better understand me in my darkest hour when I tell them I’m ok, while having a blank, distant or painful episode. It’s normally: “How can you say you’re fine when you have pain at a score of 10?” And I’m going in my head: “Ok, I’m feeling “xyz” which was triggered by “abc” so therefore I should do “def” soothing exercise.”
A message that stood out clearly for me is to pace myself on the very good days, try to do some activity on the bad days and rest enough to avoid a huge crash. I hope my story can help others in their journey. Thank you so much for your support Dr Stone and colleagues.
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