Where the hell have I been?

It is so weird to realise that the last time I published a blog was in May. I was so convinced I'd be posting every week, but I suppose life happens and often, major life events kind of get in the way. But I do agree with my partner, my family and my friends when they say I need to get back into regular writing.
So sitting here at 9am with a cigarette and a Dr Pepper Zero, I decided my free day was the time to start again with this entry.

I got a 2 in 1 laptop / tablet when I was in Brighton for Christmas. The main idea is to use it for university but I've realised it's the perfect size to take around with me and blog or write poetry wherever I am, and currently that's going to be my bed for a little while.

Shortly after my last blog post at the end of May, I had a neurology appointment for suspected epilepsy. Luckily, no significant epileptic activity was found in my brain scans. Which is awesome. However, I was given a diagnosis of functional neurological disorder. I love medical sciences and in my spare time I enjoy studying about rare diseases and disorders and increasing my mental dictionary of medical terms, practices and treatments. I suppose this started when I took biology at high school, but definitely increased when I became sick with myalgic encephalomyelitis at 16. Learning about diseases, disorders and disabilities helped me to feel not so alone, engage with and meet other people with similar conditions, and at one point was a subject I wanted to pursue at university. I digress, but the point I'm making is that I'd never heard of functional neurological disorder and I was upset. When my neurologist used words and phrases like psychogenic, psychiatric and emotional trauma to describe how some doctors and specialists view FND, I was distraught. I walked out of the appointment in tears, phoned Nick and bawled to him about how everyone would think I was faking it, or that it's all in my head and just part of my mental illnesses.

In reality, functional neurological disorder is a serious and very genuine condition. In a normally functioning brain, signals are sent and received to enable you to perform motor tasks such as walking, talking and eating. In the brain of a person with FND, these signals are disrupted, mixed up, and don't work as they should. Signals can not be sent and received in the proper way and so functional symptoms develop, which can be any number of motor and sensory issues as well as cognitive symptoms such as impaired thinking, brain fog, inability to find words and recall the names of objects, people and places. In addition to these, a symptom that a large number of FND sufferers encounter is seizure activity and seizure-like episodes. You may be conscious or unconscious during these seizures, able to speak or temporarily mute, able to move or paralysed - almost any type of seizure activity you can imagine. Personally, my seizures generally resemble focal or temporal lobe epileptic seizures, without the epileptic activity. Instead, as mentioned before, my brain can't process the signals it's supposed to be sending and receiving, and my body's functions essentially shut down. During a seizure, I have trouble interpreting what people are saying, it feels sort of like they're speaking in a language I don't understand. My body will shake, similarly to an epileptic seizure, though it's more severe on the right hand side of my body. I will occasionally lose consciousness, although recently I have stayed conscious throughout. I'm not actually sure which is more terrifying. After a seizure, I lose my ability to speak properly for anything from 5 minutes to the next few hours. In all honesty, the best way to describe it is that I sound like I've had no sleep and then gone and got drunk. I slur, but I also stammer and have a lot of difficulty getting out the words I want to say, because my brain has essentially forgotten how to make me speak. FND is honestly so draining.

It's taken me over a week to write this, and I have multiple half written or completed but unpublished blog posts just sitting in the editor. I've been in and out of hospital, I've been mentally and physically drained. But I’m determined to get back to writing frequently, as it does really help me. It’s almost a form of therapy for me and provides a means of catharsis. Don’t get me wrong; my mental health issues are still very much there when I’m blogging. But sitting down, blaring music and just writing does help to quieten the tics, intrusive thoughts and just general sadness.

I’m not entirely sure what the point of this post was. I suppose it was half to speak about FND, and have to just explain where I’ve been and get back into the swing of writing again.

If you’ve read this far, thank you.

xo