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

Ironically, I'm listening to Heartbeat Loud as I write this.

It's not really an unusual thing for me to be in hospital. I've been admitted for severe dehydration, constant infections, myalgic encephalomyelitis flare-ups, a strange type of liver disease, an exploded appendix and mental health issues. Those who know me well know I have a bit of a dodgy relationship with my health. However, last night was a first with being told by a health adviser that I needed to be seen for my heart in an emergency facility within the next 60 minutes. Having turned down an ambulance, I got up from the sofa and gathered my things; phone charger, mobile phone itself, bank card and some taxi fare, and Nick and I made our way to the hospital. Luckily, and similarly to my hometown, we live a mere 5 minutes from the emergency department.
I'm well aware at this point that NHS hospitals are incredibly underfunded, stretched and crowded through no fault of their own, hence taking the essentials to last me the next day or two should I have needed it. Upon arriving and seeing the walls adorned with 'average wait time 3 hours' whiteboards, I have to say I wasn't thrilled about my impending stay. Taking my pulse on my iPhone as I sat down, Nick gave me a kind 'be careful' as he noticed my pulse was climbing again.
I should probably explain. My heart rate has been massively increasing at random intervals of late, bouncing up to around 140 each time I stand up, causing me to feel it in my ears and in my neck. It got bad yesterday, and I almost passed out just standing up to grab my drink. (Thank god I didn't grab my drink, or I'd be dealing with coke zero and glass everywhere and that sounds way too stressful to handle.)
So there I was sitting in the waiting room. Two young girls with sick bowls probably didn't help my heart rate as my emetophobia was kicking in, but I just kind of assumed it couldn't get much faster. I was called in pretty quickly, within 15 or so minutes, by a young nurse with a huge smile on his face. This was nice, a bit of a change from the majority of triage nurses I've seen. Sitting down, I started explaining what was going on with my ticker, and in response he put a pulse oximeter on my finger, promptly grabbed my septum piercing and pulled. "Does this hurt?" That was an odd one, but made me laugh nonetheless. The pulse oximeter started reading my heart rate and Nick's face kind of said it all, as the display was angled towards him and not me. I could hear the beeps though, and they were pretty fast to say the least. Sounded like the drumline of an Andy C remix on speed. Irregular too. The nurse turned to me, asking me if it happened all the time or just on occasions. "Only really when I stand up. Or walk around. But sometimes when I'm doing nothing too, but that's rare." He laughed. "It's just high because I'm here!" Again, this made me laugh. Which made my heart rate shoot up higher. Damn amusing nurse.
He referred me for an emergency echocardiogram after disconnecting me, and I found out that my heart rate had been bouncing at almost every interval between 60 and 190bpm. Scary, but I was comforted by the thought that should anything happen, I am literally in the best place for it.

The next hour and a half were spent sitting in the waiting room, taking regular heart rate readings and trying to find which was the most comfortable position on a chair that creaked and threatened to break every time you put so much as a jacket on it. Side note, it's to sit forward with your elbows on your knees, but that's a bit irrelevant. After a wait, I was called through to see a doctor who sat me down on a bed, took my glasses off, checked my eyes. Then asked twice if I had taken any drugs. No, I just naturally look like this, I promise! After a short conversation about my symptoms and checking my ECG results, he concluded I have a lovely little heart condition called supraventricular tachycardia, or SVT. And what he believes is the beginning of postural orthostatic tachycardia syndrome, too, but that one's almost to be expected with my myalgic encephalomyelitis. He explained that SVT is a condition characterised by arrhythmia and extremely high heart rates, sometimes up to 250bpm. That really is an Andy C remix on speed. It's caused by what is essentially faulty electrical signals in your heart, and is normally managed by medications or a heart surgery. That sounds scary and more painful than I'd like, so let's try the medications.

I was discharged and sent home as there's nothing emergency departments can do for supraventricular tachycardia unless your heart rate is not coming down from, say, 200bpm. It's now my job to get in with my GP and organise starting some heart medicines. Yummy!
Of course, with obsessive compulsive disorder, I've been researching each and every little thing about this condition. Not necessarily a bad thing. I'm not scared per se, just a little surprised that I have a heart condition I didn't really have any idea about before. And anxious to start medications, as beta-blockers made me feel so unwell last time I took them for something completely unrelated. If it's going to stop my actual drum and bass heart from sporadically going for a sprint though, probably going to be worth it.

I am not affiliated with any of the charities listed below, but as will be a regular feature of my blog, I have listed some charities and information pages regarding the issues talked about in this blog post and issues related to them.

Have a great bank holiday Monday evening, I'm off to await my Amazon package, make a roast dinner and cry about how I have to reduce my caffeine intake. 😅😅

• Supraventricular Tachycardia on NHS choices - supraventricular tachycardia information on NHS choices
• Supraventricular Tachycardia on the British Heart Foundation website - supraventricular tachycardia in young people - BHF
• Arrhythmia Allience UK - heartrhythmalliance.org
• Supraventricular Tachycardia on the Children's Heart Federation website - Supraventricular Tachycardia in children - CHF

xo

Motivational Speaking?

I’ve never blogged in the conventional sense before. I’ve had a tumblr account and thought I was a ‘blogger’, reposting pictures and text on subjects I’m passionate about, but even through my adoration of writing I’ve surprisingly never produced my own written content. 

A year ago, an elderly woman at a bus stop in Brighton told me I should become a motivational speaker. Through my own experiences I had completely changed her mind on a subject you normally wouldn’t converse with bus stop strangers over, but it had come up in conversation somehow. I don’t remember how, it was over a year ago. I remember the topic of conversation though and how her argument changed over the course of the discussion, but that’s another story for another day. I pondered her advice for a while and came to the conclusion that motivational speaking would scare me, whilst in an ideal world I’d love to do it. I would love to open even one mind in a crowd of one or two hundred high school students, but that would rely on me getting up onto the stage first or merely standing in front of them which is, at this current point in time, a terrifying concept. I suppose blogging is the first step towards potentially becoming a speaker, the reason being that I can gauge responses to my words and the topics I’m keen to talk about and identify whether or not I should actually do it, should I prove to be a terrible writer. Which is a large possibility. 

You don’t know until you try!