Wake up!

You start opening your eyes, it's hard they seem stuck like your brain and body are not awkening together, but you know the day is starting, you have to get out of the bed, body is hurting from all the seizure activity happening in your sleep, nocturnal epileptic seizures and taking that Emgency medication last night because of the clustered seizures you really did not want to do but knew if you did not things could go very bad..

Then you remember that feeling you get when that time of the day appears, the curtains shut, dinner has come and gone, it gets darker and darker and before you know, it’s time for those 9 o’clock meds, the meds you have to prepare yourself for because you know soon you will feel tired and become unaware what is going on but ignoring that time is coming, that time that always comes every day and before you know it, its 10 o’clock meds, time to take those 10 o’clock sleeping tablets, time to take more pill to help with your sleep and seizure activity.

An hour passes you’re not asleep another hour passes and you know now it’s time to go to that room and turn everything off, switch that mind off and get under those covers. You look in the mirror and you say to yourself in a deep breath “Not again, not again, not again" a small complex partial seizure happenss you grab and hold on like you do all the time till the small seizure passes, relaxing yourself during and not panicking so the seizure dose not get worse.

Nighttime you turn that light off, close those eyes, it takes a while, but next thing you know you wake up half way through the night jerking like crazy, heart palpitations so fast you feel it coming out of your chest, repeating words such as “fuck, fuck, fuck”, then you close your eyes again because of the tiredness you are unable to fight but then again you wake early hours of the morning same feeling, same panic, same jerks and same beats again its “fuck, fuck, fuck”.

You close your eyes again but next thing you see, wake up with those horrid jerks again and again, its morning now, so you get up and you take those 9am meds and again and start the day with a much needed caffeine boost.

You walk to that mirror where the mirror tells you the truth, looking at yourself dry skin, dry hair, dark circle under eyes, you go to get breakfast but emotions are too much so you run into a room alone and you cry, cry it out, and cry out the pain. You stop the tears and you get on with your day, laughing and joking with everyone else the circle repeats every day until one day your outside laughing and joking with everyone, but next thing you drop your gone tonic clonic seisure happens and all you remember is Eco’s of names and waking up after another one, another seizure, you think to yourself

"oh not again when will this stop".

All you think is sleep is the scariest place for someone who’s illness is a link to sleep, you want to give up but you can’t because you know giving up isn’t an option, you know in time it will get better again like it did before because you know surviving is all you know Untill the day he comes around my darling son and changes everything making all the seizures less hard to deal with because you have been given a beautiful gift and when you look at him you see beauty in the world and think to yourself with a smile of joy.

"I can do this because of him and because I have been given a chance to be a mum, when I thought it was impossible it became possible, once I started to believe this is it , this is happening."

You know it won't be easy but you know you can do it because your his mummy and that unconditional love, is the love that keeps you going, keeps you showing up for him time and time again.

Most importantly you know these most precious young years of his life are not forever and ever so important to what will shape him into the person he becomes, so you enjoy and embrace it even when you are ill because that feeling of being his mummy there is no other feeling like it.

Author note-"This piece reflects the reality of living with Epilpsy and the nightly cycle of fear, fatigue as well as survival for those fighting invisible battles - "You my darling readers are not alone, this is a part of my lived experience."

This was a piece I wrote during the pandemic and what was happening, I'm sure there are many others out there with this condition.

My next piece of this material is what happens when you become a mum and how the epilepsy changed for the better after getting really bad, bed bound bad, to finally having some control again and the body and mind going through the after affects of becoming a mum with drug resident epilepsy, powerful and reachable to a lot of my audience please keep on the look out.