Sleepless Brain, Sleepless Nights
Last updated: June 2022
Having epilepsy, it is so important that we listen to our bodies and ensure that we are getting enough rest. Easier said than done – without a doubt for many. Especially as a single parent. You're always on the go.
I have learned to change my bedtime routines to ensure proper sleep. But sometimes, there are just those nights that we can wake up and not fall back asleep. Interestingly enough, though, I do my best thinking and have the most clarity when all is silent in the world. So as much as I love these opportunities of waking up at 2 a.m., I pay the price the next day of exhaustion.
Can't sleep with epilepsy
For many, falling back asleep is easy. For me, it is not. My brain is on fire – at war – each side battling the other. I can feel it happening and am only a witness to it. I have no control over calming it down. So much electricity and activity happening. While the world is silent, quiet, my brain has a mind of its own. It decides my "quiet."
This is really hard to explain to those who don't have epilepsy. When I share my experience, I am often advised on what to do, what not to do – not understanding that we have no control over our brain activity. It controls us. It doesn't define us – but it controls the craziness within our brain. This is just one of the battles we face having epilepsy.
It is 2 a.m. and I am desperately trying to sleep but my brain refuses to shut down. Try to understand this, as crazy as it sounds, my brain activity is very HIGH – like firecrackers going off – but yet, I have so much clarity at the same time. Explaining this seems crazy, even as I write this. I get it. But you must live it to understand it.
The electricity of my sleepless epileptic brain
In order to survive, you accept things you cannot control. This is something I cannot control. I can manage it, but I can't control it. So, in accepting these moments from time to time, I have begun dictating into my phone all the clarity that I gain during these moments of high electricity, all the things I want to accomplish, all the ideas that I want to incorporate to make a difference for our epileptic community.
This is my only option, as first thing in the morning, I won't remember ANYTHING. Welcome to having epilepsy. Memory loss.
What is so fascinating about my epileptic brain is that only because the world is all quiet – not a peep to be heard, just the feeling of the activity of my brain – am I able to think with clarity.
Misfiring brain in in noisy places
If my brain activity is in full gear during a normal day when surrounded by others who are loud, or at events/parties where there is a lot of conversing – I can’t think straight at all – I must quietly observe. And sometimes, if too many people are talking at me at any given moment, I will "shhhh" them. My brain can't handle several people talking over each other at me.
Parties bring pure exhaustion for me, even though I still attend and enjoy a great event or get together, I must be aware and listen to my brain. Not to mention, having epilepsy, you are sensitive to those around you – not wanting anyone to worry or feel uncomfortable. We have a unique relationship – my brain and me.
In the eye of a stranger, you would never know I have epilepsy. Only to know me is to know that I do. I am incredibly fortunate that I have only had two tonic-clonic seizures during my lifetime.
Figuring out how to manage my epilepsy
When it comes to medication, I've learned to listen to my body. And I will challenge anyone who isn’t making sense to me. I challenged my former medical team who really didn't understand epilepsy, they only knew to hand out dosages of medication that they've always prescribed. I had to fight, research, experiment, and find the right managed care for myself. Happily, I've been able to.
I am a big believer in patient advocacy – never give in until you find a win-win. This looks different for everyone who has epilepsy. You're not crazy, you're not insane, you're not less than anyone else. Find a way that keeps you happy and motivates you to live your best life.
Allowing epilepsy to define me is not an option – I live a normal and healthy life, just more aware of how to manage those moments that my brain decides to take over. I've learned to recognize these moments.
But my story and my brain are just that: mine. Don't give in to comparing your story to someone else, thinking their way is the only way. There is a way for everyone. Seek it and you shall find it. Much love to my epileptic community – you are amazing!
Since being diagnosed with epilepsy, has your memory been impacted?