My Epilepsy Journey.

If anything comes from this blog, i hope to let others know they aren't alone there are so many of us epilepsy superheros around!

[epilepsyqueen]

When you’ve been seizure free for almost a year and then.... you have a seizure...

[epilepsyqueen]

My diagnosis..

In 2012 i was officially Diagnosed with Idiopathic epilepsy.. 

my epilepsy is unique to me.. I do not know the cause and it is likely i never will, my epilepsy is at the moment drug resistant and what that means is.. they can throw tons of medication at me and none of it will work..

I envy those with epilepsy who know their triggers, who can take medication and it helps...

Instead i battle with not knowing my triggers, i battle with shitty employers who see my epilepsy as something that would make me a bad employee..

I guess epilepsy is like snowflakes really.. each epilepsy diagnoses is unique 

[epilepsyqueen]

Absences....

all my life i have had this problem... we didn’t know it was epilepsy until i had my first seizure..

around age 4 my mother can recall me having issues with my eyes.. not in the normal eyesight sense.. no mine was different.. i would be talking then all of a sudden my eyes would close i would freeze mid sentence and just stutter for ages.. when i was a kid epilepsy was still a very misunderstood thing.. and i’m only 25!

We didn’t know it at the time but that was the start of my epilepsy journey.. and doctors would just turn us away and would say “ah she is only young and it’s probably because she has just started school” 

NO FUCKO.. IF YOU ACTUALLY INVESTIGATED IT YOU WOULD HAVE SEEN ON MRI SCANS MY BRAIN LIGHTS UP LIKE A FUCKING FIREWORKS DISPLAY!!!

[epilepsyqueen]

3... it’s the magic number

so.. i got up for my first week on my new job, thankfully my boss back then understood as her daughter was epileptic... Anywaaay..

I get up for work around 5 - 6am as i had to get a bus to work.. we lived out in the middle of nowhere so the bus ride took ages...

i remember coming out of the bathroom and it was like my whole body froze and went completely stiff.. i was stuck in my body i couldn’t control it, i was a prisoner in my freaking body!! 

When my body went stiff that day that was the first seizure i remembered.. i remembered this horrific feeling of not being able to stop what was happening to me.. i couldn’t even scream for help.. instead my body went stiff and i smashed the back of my head against my desk.. and i was just lay there on the ground and everything went blank...

i don’t remember what happened after that.. 10 years on i still have no idea what happened to me after that..

[epilepsyqueen]

The second seizure..

I remember going to bed... 

then i remember waking up on the floor in pain, confused with two men dressed in green (Ambulance crew) It was dark and when i tried looking at them it looked like their faces where like “tv static and all fuzzy” 

I heard them saying “it’s okay reagan, don’t panic you have had a seizure and we need to check you over okay” and that was it panic overload and i’m lay on the floor sobbing not really comprehending what is going on..

they checked me over and i kept saying my head hurt.. i must of smacked it on my desk again.. 

and that is all i remember, i’ve noticed as the years have gone on my epilepsy has affected my memory.. some things even 10 years on is still blurry.. some days it takes me 3 days to remember how to string a sentence together

Guess that’s the price you pay as a epileptic

[epilepsyqueen]

21st October 2012.. first lot of epilepsy medication! 

I was sleeping for almost a full 48 hours these tablets completely knackered me out! 

[epilepsyqueen]

How it all started...

*Trigger warning - this blog is going into detail about my epilepsy journey*

My journey started when i was in year 9 or 10 of secondary school..

I got up for school one morning walked across our landing to the bathroom.. and that’s when everything went blank..

Next thing i remember is so my vision was like the static on the tv and then everything started focusing, and i could hear this woman and these men on the other side of the bathroom door and they were shouting my name.

They then asked me if i would open the bathroom door so i got up and walked over to the door and tried turning the key and it wouldn’t open so i gave up and was just stood there not quite with it, then i hear “Okay go to the toilet and close the lid sit on top and hug your knees and do not move until i tell you too” so i listened and did exactly what they asked. 

The next thing i remember is these two men dressed in green where in the bathroom and the door was on the floor (The Ambulance men kicked the door down to get me out) 

They moved the door out of the room and while they did that i sat there hugging my knees and started looking around, i quickly noticed there was blood everywhere.. I had busted my face pretty bad and had a fractured nose.. and that’s all i remember - i would have been taken to hospital or seen a GP but i don’t have any memory of it.