I am taking part in the Brainathlon to raise money for Brain Research UK, Brain Tumour Research and Epilepsy Research UK, as there are so many unknown factors which are associated with Epilepsy, and because so many lives have been interrupted without any answers available as to why!   

So it seems a little strange to be signing up to this event for myself, which i know many people will probably question because of what i have done in the past.......🤷🏻‍♀️

Why would someone go from running a very long way for the hell of it, time after time, to entering this event and asking for money to do it.........if you stop reading now, happy days, move on, not an issue, and no offence taken, however if you want to know why and give me a quid for doing so.......here is my story......*note*, not my sob story.......😝

So in September 2019, i’d had a bit of a shitty year to say the least, and on a sunny Sunday morning, i had driven to Coed Y Brenin, in Snowdonia to run with friends from the Pen Llyn, and take part in a filming day for the Pen Llyn Ultras film, for Race Director Huw, no i didn’t get lead role!

I knew i was feeling crappy but had felt that way many times, for 2 years previously, and my GP had on several occasions told me i was fine, probably tired and needed some rest, so off i went. ⛰

I had a great day, felt like rubbish but had cake with my friends and a great giggle whilst running around the trails.

I drove home, feeling questionably safe and then spoke to my friend in the evening, who happens to be a very clever Doctor, and has a medical degree in brains, as you do! Quite quickly our girly conversation about wine and dogs changed and became quite serious to the point where she insisted i made an appointment with a neurologist as she was concerned i was suffering from a condition which could be quite serious. She is quite persuasive and bugged me a lot until i made the appointment, and I’m not afraid to name names, because that conversation with Jess that day, changed my life and probably (not definitely) for the better. 😘

On September 23rd 2019, i was offically diagnosed with Epilepsy, and the rest is pretty much a blur. I was stopped from driving for 12 months, first world problems i know......but if you know where i live in the arse end of nowhere, on my own, you will understand the significance of being able to drive!

My whole life came to a stand still over night, and i was even unable to do my job which involved driving, i actually had to recruit against my own role........for my own business. For the record, i was not entitled to any financial help with travel, and was told to get a different job by the local authority. To this day i have not been assigned an Epilespy Nurse and sadly it is not an option when you own the business you work at to get another job, travelling there on a bus that does not exist, and be responsible for 10 other salaries.

I am lucky, and i happen to have paid for BUPA medical insurance since i left my previous job in 2010, so I was immediately put onto anti epileptic drugs (AED’s), and sent for several MRI scans as my seizures were so frequent (clusters of around 20-25 seizures for 24-36 hours, once every month), which concerned the Neurologist as he was worried i had a brain pathology as they were so frequent and had come on without any obvious reason or cause.

THANKFULLY, i do not have any significant pathologies to my brain, such as a tumour or lesion, i just happen to have Epilepsy, and my seizures appear to be triggered by female hormones, which means i will probably never be seizure free, they are however cyclical and i can predict when i will be poorly and manage my life around them. Boom! 🍾

My drugs initially took the edge off the seizures for about 3 months and i thought everything was solved and happy days, sadly that was short lived and it would appear that i am actually drug resistant and so my seizures will never really be under control, unless they just go away on their own one day. Apparently that may happen?!?!?

I currently have Temporal Lobe Epliespy, and it is localised, i suffer with focal seizures and although i feel really, really shit at times, i am ok, i can just about function on my worst days to allow me to go to work, and i can now use my discretion as to when i can drive, as i have never lost awareness in 3 years of having seizures. This is the DVLA’s conditional decision, which has been signed off by my neurologist. Sadly, i am not seizure free, so my ability to drive is limited BUT it’s lockdown, it’s not exactly a big deal. For me, the main issue is the week after my seizures, I AM USELESS, i feel like crap, my brain is crap and i am pretty much just best left alone as i am a liability at best. Thankfully i have a great bunch of people around me, to cover my special needs. 🤯

Prior to 23rd September 2019, i knew nothing about Epilepsy, i just thought having seizures meant that people fell to floor and shook.........this is so far from fact that i actually can’t believe that i was so naive. It’s actually embarrassing! The reality is so far from dropping to the floor and shaking, and more like the fact that it has taken me over an hour to write this post and make it legible and coherent, as my main issues involve cognition and the ability to use my senses and language skills correctly. As a geek, this is pretty disheartening at best! 🤓

Epilepsy Awareness is so minimal and the research capacity into Epilepsy is so low, the data on medication and condition management is barely existent and people are left undiagnosed, people including myself, a reasonably intelligent, supported and functional person! I spent 35 years not knowing i was Epileptic. How is that even a thing?!?! I had been to my GP 4 times and explained my exact symptoms and she thought i was tired and stressed. If my friend had not had a degree in neurology, i may still be undiagnosed now, and probably being mistreated for mental health issues rather than Epilepsy, a common error made.

So, the reason why i have entered this event.......it will give me a reason to walk out of my door and run, when i can’t drive, (totally pushing my mindset boundaries) it will hopefully raise some money for 3 really under funded charities, but more than that, i would like to think that it will encourage some people to google “Epilepsy” and have a read.

Guaranteed you will learn A LOT, and who knows you may even be able to tell someone one day to go and see a Neurologist because you think they have some dodgy symptoms.......because the symptoms of Epilepsy are so unknown and under rated, that even GP’s don’t always pick up on them and Epilepsy actually causes the death of 1 in 1000 people who suffer from the condition.

It’s not all how it looks on Holby City, so have a look, and if you want to sponsor me £1 to walk 10 miles, run 15 miles and climb 1.2 miles of steps, back to back on 19th April, hit me with it. I will be there whether i have seizures or not.......(literally expected that day..........🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️).............i need to raise £100 who want’s to start the ball rolling????

Thanks for reading...........training starts tomorrow......honest!!!!! 😴