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Epilepsy - it's not what you think

Created:

20 December 2018

My name is Hayley and I'm a 36 year old secondary school teacher from Essex. I was diagnosed with Juvenile Myclonic Epilepsy about 20 years ago. I've been able to live a pretty normal life since my diagnosis which has included having two children, completing a degree and teaching qualifications.

In the last six months I've had some seizure activity for the first time in 9 years which is currently being investigated. As I am not able to work at the moment and wanted something to keep me busy I started writing a blog about my epilepsy. It's also become a great way for me to be able to share with people what is going on in my life right now if they aren't sure which questions to ask.

Below is the first blog post of my blog, 'Fits and Starts - the trials and tribulations of living with epilepsy'.

The Journey Begins

Thanks for joining me!

The original reason I started this blog was to occupy myself; I’m currently signed off work and have been for over three months. The novelty of binge-watching Netflix has worn off and as the winter weather has drawn in non-purposeful exercise (read long walks on my own) has lost it’s appeal somewhat.

I’d spent some time ruminating about content and decided attempting to write something formal about the challenges I’m currently facing and how they came to be would be constructive and also potentially cathartic. I’m required to keep handwritten journal notes anyway as part of my therapy so this also serves as a means of me putting them into some kind of coherent order.

About my epilepsy

I suffer from a condition called Juvenile Myclonic Epilepsy; it affects about 1 in every 1000 people and is a chronic condition (this means I’ll have it for life). It doesn’t necessarily mean you have full blown epileptic seizures in the way most people understand them (jerking, unconsciousness and foaming at the mouth), although in my case I do. It’s also rarely triggered by flashing lights. I was diagnosed when I was about 17 and for the last twenty years it’s varied between having very little impact on my life right through to being a total game-changer.

I don’t intend the content of my posts to be doom and gloom, I have plenty of black humour and embarrassing anecdotes to share. They probably weren’t that funny at the time but with hindsight I can laugh about them. One of my strongest personality traits (which the medication hasn’t managed to quash yet) is that I’m unerringly honest and I hope this is reflected in my future entries.

Pending feedback, I’m kind of hoping it might help those around me understand a bit more about what is happening to me; about why I’ve all but disappeared from daily life, why I’m not at work and why the version of me you are familiar with doesn’t seem to be around at the moment. I can only speak for my own experiences but I suppose there is a possibility it might also offer support and empathy to others dealing with long term and ‘hidden’ health conditions. 

My only marketable product is prescription drugs and since the pharmaceutical industry makes $1.05 TRILLION a year (see, I’ve even done some research) AND I will probably spend a fair amount of time moaning about the myriad side-effects of various different potent drug cocktails I’m not exactly their best advert! 

Searching for answers

Finally, at the risk of sounding extremely corny, I have found the work of an American neurologist called Lisa Genova very helpful. She has written a series of fictional books from the point of view of ordinary people diagnosed with life-changing neurological conditions and does a really good job (I’m not sure whether it’s through collecting actual patient feedback) of conveying, through their live stories, how they feel and how these conditions impact not only the patient but those around them. One of her books was recently made into a film called ‘Still Alice‘ which I would recommend you watch if you don’t fancy the books.

For me, the only downside of engaging with her work is that, at a time when I myself have been (and still am) searching for answers and diagnoses I have a tendency to empathise a little too much with her character’s plight (read become a Grade A hypochondriac). Still Alice was the first of her books which I read and despite having very little in common with the central character (who has early onset Alzheimer’s) symptomatically, other than a condition which affects the brain, by the time I was a few chapters into the book I had 100% convinced myself this is what I was suffering from.

As any good method actor will know, I further confirmed this home grown diagnosis (with the aid of Dr. Google) when, a few days later, our weekly food shop arrived missing half the items I was convinced I ordered. Despite reassurances from those around me that I have a lot on my plate and everyone forgets things once in a while, I was unshakable in my conviction for a good few days that I too had developed Alzheimer’s disease, I consequently spent quite a few hours sunken into a tearful puddle lamenting the progressive loss of my cognitive functions based on a work of fiction!

Never rely on Google for a diagnosis...

I think this probably serves as a compliment to the quality of her writing and also a reflection of the fact that I have way too much time on my hands for unqualified medical research and self-analysis! Despite this, I have yet to be fully deterred and have thus far failed to heed the advice of medical professionals that no good can come from using the internet to investigate health complaints.

Anyway, in terms of an introduction, I think I have shared all I need to. I’ve tried to keep things roughly chronological in subsequent posts so the developing plot line makes sense to the reader and so I can add further posts if anything changes. Please read on and if you have any questions, please go ahead and ask.

"Good company in a journey makes the way seem shorter" - Izaak Walton

More information

You can read the rest of Hayley's blog here: https://fitsandstarts.home.blog/

The views expressed here are those of the author and not necessarily those of Epilepsy Society.