My Epilepsy
Living with epilepsy….. yep it isn’t fun.
This is really just a short intro I guess to my epilepsy story.
I have been living with epilepsy for quite a while now so I felt like I wanted to share my story and my journey from when I first was diagnosed with epilepsy to now.
My story of how it began
So for me my journey of visits to the hospital began at aged 7 when we discovered I had a benign brain tumour growing in my head. My development growing up as a kid really just wasn’t at the same normal pace and ability of like the average kid and as I grew older other small symptom suggested to my parents something was wrong and we eventually discovered my benign brain tumour.
Luckily they were able to operate on it and remove it though and they were able to give us the good news that there was no cancer or any need for further treatment really now that the tumour was all removed and gradually I was able to get back to normal(ish).
However about 4 years ago the aftermath of the brain tumour had led to my brain now having to deal with epilepsy.
My epilepsy
With my epilepsy I don’t collapse or go unconscious like many people think I may do when I tell them I have epilepsy. For me I guess there are kind of three stages to how my brain reacts to its freak out of a seizure/epilepsy activity:
Full seizure - I rarely have a full on like seizure but when I do I become very dizzy and unable to understand what anyone is saying because the most damaged part of my brain is the part that processes language. I can’t make sense of what someone is saying and if I try to say something it literally makes no sense. I mean I’ve on many occasions called the person I’m with the wrong name or said the weirdest things. As well as this I often end up being sick/throwing up while having the seizure which is always pretty disgusting to say the least hehe. I have only had to be sent once to hospital to stay there for a few days after a seizure. Normally the seizure only lasts like between 10-30 minutes.
My ‘dying moments’ - ok firstly just to clarify i’m not actually dying in these moment they just weirdly became known as my ‘dying moments’ because it basically best describes them because when they happen it feels like my body is panicking because its dying. Weird I know but its like hard to explain the weird feeling it gives me of like feeling scared and anxious inside my body and like my body is shutting down but also like panicking at the same time. These moments used to occur like for a few seconds like once a day but now its seems to be that like once a month for about 3 days i have many of these moments like all day. One doctor told me that its very likely that my mind would worry about having a seizure so I regularly find myself being generally worried about my epilepsy but also these ‘dying moments’ increase my feeling of anxiousness too.
Small moments of not understanding language - so basically epilepsy effects my ability to make sense when I talk or for me to make sense of what someone is saying so most days at least once for a few seconds someone may say something and I just can not understand what there saying. It literally makes no sense to me what there saying and if I try to talk I literally make no sense.
Where my epilepsy is at now
Right now it just seems like a constant puzzle of trying to figure out how to solve my epilepsy.
Tbh its like I have a ‘broken brain’ coz that’s literally what it seems like. Its as if its broken given that its just not functioning like your normal healthy brain!
I know i’m fortunate given the kind of epilepsy I have meaning I rarely find myself in hospital after a seizure and I don’t really go unconscious.
But at the end of the day epilepsy does suck.. it sucks not having control of your brain. It sucks not knowing when you might have a seizure and even just the little things such as having to be popping pills every morning and night kind of sucks to.
But i’m learning to live with it. Learning that this is the brain I’ve been given and this is the brain that wether its broken or not its mine.
Lucy xo
