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| Pizza is my go to when I am too ill to put a meal together - I have had a rough time with the FND / migraine the last 2 and 1/2 weeks. |
***TRIGGER WARNING*** Medical and other Trauma, symptoms and seizures in the video and post.
This… may be a long one and may be broken up over several posts. I will likely be doing more TikToks on it too.
For those who are new here, I have several medical issues, such as Chronic Fatigue Syndrome, Fibromyalgia, Otosclerosis, Migraines, Autism & ADHD. I also have a condition known as Functional Neurological Disorder, which was previously known as Disassociative Disorder, and also a type of Conversion Disorder. Unfortunately due to outdated information and the general disdain that can come towards disabled people, it is often touted incorrectly as a “its all in your head” mental health issue, rather than what it is, a complex, neurological, psychological, physiological condition.
I learnt a lot about the condition from www.neurosymptoms.org.
At the time of writing this I have had FND for about 25 years. I am seeing a neurologist in June to get a proper assessment and diagnosis, and hopefully the correct treatment plan to help manage and hopefully improve my symptoms.
I also can pinpoint its cause as trauma from the abusive relationship I had with Chris. My first symptom in hindsight I realise now was the functional tremor I developed in my right hand, I noticed my hand was shaking one day when I was helping my Dad when he worked at a company called Baltic Pine, I was sorting out leaflets into trays on shelves and I saw my hand was shaking. I was in my early 20’s at the time, and I had been in a relationship with Chris since I was 18 - and through some drama already in that time. When I saw a GP about it I was diagnosed with benign essential tremor, and over time it progressed to my left hand to a lesser degree. I then also developed the tremor in my upper body, and head, but it would be on and off. I had no idea until more recently that the tremor was part of the FND which would later come on as my first paralysis episode, whilst I cannot remember exactly when, it was likely around when I was 24. I remember it clearly (despite being disassociated) as. I was coming down the ladder from the loft in our 1st floor flat in Northampton, We had the loft boarded out with a PC computer up their along with other stuff, and as. I hit the 2nd or 3rd rung from the floor, my legs suddenly gave out out of nowhere and I collapsed unable to move, I guess for around 5-10 minutes. I felt very strange and then I got up feeling disoriented.
I honestly don’t know if I went to the doctors about it right after, or not, and I don’t remember if I told Chris right away as he was out when it happened, I may have forgot about it. All I do know is that over time they started happening more and more, and I recall, as I used to cycle to work and the gym, and into town a lot, that one time as I was on my way back my legs suddenly gave out and I couldn’t cycle anymore. The weird thing was whilst I couldn’t push my legs to pedal, I could still walk although I was only able to do so slowly and had to walk a fair way back home pushing my bike.
When I did see doctors about it they didn’t know what it was, and the first time I ended up in A&E it was after I had a vigorous sex session one night and I remember feeling this weird “pop” sensation in my head and I couldn’t talk or move for a few minutes after. I felt so strange and in hindsight now I am more “energy aware” I do feel like it may have been my kundalini energy frying my nervous system - having sex with someone who was inherently abusive I can only imagine really messed with my body in more ways than one.
It settled down and we went to sleep. The following morning I was on the bus on the way to work when suddenly my left side went weak, including my face. I was trying not to panic but I figured it couldn’t be a stroke as I was able to get up to get off the bus. I still wasn’t able to move my arm though after 10 minutes so I got off at the hospital and walked over. I think I must’ve text or called Chris to join me at the hospital, and the doctors did a CT scan - which came up clear. I told them about the sex session the night before thinking that was what triggered it, and (quite unprofessionally) the doctor said to Chris, “if she’s okay, good on ya mate!” (Because apparently inducing stroke like symptoms from a hard sex session is supposed to be something to proud of?!)
A lot of my memories are jumbled or fragmented although I do remember a lot of specific incidents, over the years. One time I was in A&E and a lovely doctor was trying to help and suggested something called Hyperkalemic Periodic Paralysis - a fault on the salt channels in the muscles that can cause paralysis attacks. This type was related specifically to potassium and having a sensitivity to it. After a while I managed to get referred to Oxford hospital for what I thought was going to be a potassium test but they instead did other tests that weren’t related to what I had asked for. It turned out to be a waste of time and a very rude nurse when I had a paralysis episode in my legs told me to “Just get up and walk” in response to it.
I did however get referred to a Period Paralysis specialist in London and I ended up going by myself, meeting the doctor, and having an episode whilst there. However he was able to determine it wasn’t PP due to the way my limbs were when in the episode. He held my arm up and it stayed up! With PP my limbs would have been floppy and fallen. I was confused as hell, and was back to the drawing board whilst over the years my attacks got more severe and more frequent for longer until I had to stop working. I was met with a lot cruel skepticism from so called professionals, accused of faking it and worse not receiving the answers or care I needed to stop it progressing. I was getting more and more fatigued between episodes and longer and harder to recover from them fully. I had also developed pain and soreness and was also diagnosed by a GP with fibromyalgia in my 20’s whilst all this was going on.
There is more to come and I will talk more about these things in my videos too, I share to raise awareness and for my own therapeutic purposes as I still haven’t gotten the support needed to deal with my chronic illnesses, disabilities and the impact it has had on my life, as I had to adjust to a new reality…
I will be back for more blog posts on this soon as well, but for now I bid thee good night, and thanks for sticking with me if you are still reading!
Spangalactic Hugs
Bex
