Fear Of The Restless

Ever had one of those nights where you toss and turn? You’re up and down? You take forever to fall asleep but you wake up countless amounts of times throughout the night? You know those restless nights? Maybe you just went to bed late for whatever reason but had to get up early the next day? I’m pretty sure everybody has those nights.

Those nights are, of course, usually followed by a day that just seems to drag on. You struggle to focus throughout the day, too busy daydreaming about how comfy your bed would feel in that moment and how you’ll just go to bed early tonight to make up for it. It’s a day that’s annoyingly filled with fatigue driven yawns but easily fixed with a good night sleep the next night. No worries about it, right?

I often wish it were that easy for me.

Everybody, even those who don’t have epilepsy, have a seizure threshold. Those with epilepsy have lower thresholds to those without. Certain things lower the threshold which can lead to having a seizure which means people with epilepsy have to be careful and try to avoid lowering it.

Unfortunately sometimes you just can’t avoid certain things, such as restless nights. Sudden change in sleep routine and fatigue can lower the seizure threshold for many but as everybody knows some nights are apparently just not meant for sleeping or sometimes you just can’t help that you’ve got to go to bed later than you had planned.

I’m actually having one of those days today where I deal with the aftermath of not getting enough sleep and, ironically enough; days like this are truly tiring in their own way.

Days like today almost leave me on edge knowing that I’m automatically at a higher risk of having a seizure. On top of the general risk of sudden change in sleep routine or fatigue, they both can add new risks to other things. Playing video games, stare at phone or computer screens for extended amounts of time, watching certain movies/shows/videos, drinking alcohol, etc. suddenly become a lot more dangerous with an increased chance of having a seizure.

I can’t just trudge along through the day; I have to be aware of what’s going on with my body and surroundings. Am I feeling okay? Is this just tiredness or is it something more than that? Have I been staring at my laptop screen writing this post for too long? Will my friends get mad if I have to cancel playing video games tonight and go to bed early? I was meant to be meeting somebody for drinks, should I reconsider that? If I were to have a seizure now, how dangerous would the area I’m currently sitting in be? Is there anybody around who would see me, who would help or who would know what to do? It is a rather public area; if I have a seizure here would today also be the day where somebody tries to stick their debit card in my mouth?

(Just for future reference, never stick anything in somebody’s mouth during or after a seizure, just roll them onto their side when the seizure is over and they’ll be okay.)

I spend my day yawning from exhaustion while constantly being on high alert for my safety which only adds to the exhaustion.

By the late afternoon I’m more than ready to crawl into bed and sleep for 8 weeks. Unfortunately I don’t get to do that. I have a tendency to have seizures in my sleep and at this point I’m still at an increased risk of having a seizure so I’m still stuck in the same tiring high alert mode I’ve been in all day.

As if this isn’t already stressful enough there’s this thing called ‘Sudden Unexpected Death in Epilepsy’ a.k.a. SUDEP that I have to worry about. People with epilepsy are most at risk if they have tonic-clonic seizures during sleep, which is exactly what I have a tendency for. At this stage there’s no known way of avoiding or preventing SUDEP but that doesn’t make it any easier or less stressful.

So while my body is craving a damn good night of sleep my mind is asking 1000 questions again. Am I safe? What dangers are there? My bedside table comes up rather high and has rather sharp corners and edges; what if I hit my head on those? There’s definitely nobody around to see this or to help if I need help so what’s going to happen? I really don’t need any other epilepsy related injuries but what if I fall out of my bed? Are my sheets and blankets a danger? What if I get caught in my sheets or blankets and they restrict my movement during the seizure? What if this is the night where SUDEP gets me? What if I all of this stress keeps me up and then I don’t get enough sleep which just keeps this cycle going and puts me in even more risk?

Do you think it’s easy to get the sleep you really need once those thoughts enter your mind? (The answer is no by the way.)

I have to try really hard to get rid of these thoughts and try really hard to get enough sleep while hoping I just sleep through the night this time. The last thing I want is to not get enough sleep and have another day filled with an even worse and riskier sleepless aftermath.

Eventually I usually tire myself out with the stress of it all enough to just fall asleep or maybe I just pass out from exhaustion. I’m really not sure but if I get enough sleep it doesn’t bother me.

If I don’t have to spend the next day full of the fear of restless nights then I get to feel a sense of relief, even if it’s only momentarily.

If you’re reading this and you have epilepsy, please listen to your doctors if they bring up healthy sleep routines. I know anxiety, medications and so many other factors can give you unhealthy sleeping habits and can make it extremely hard to fix. Maybe you think it’s a bunch of mumbo jumbo but trust me, healthy sleep routines are so important. If you’re trying but struggling to fix your sleep routine, I got there and you will too. If you know you haven’t had enough sleep recently please be kind to yourself and look after yourself.

If you’re reading this and you don’t have epilepsy, please be kind to others around you when they clearly didn’t get a good night rest. Maybe you know somebody with epilepsy and they’re looking pretty tired today, please be patient with them and keep an eye on them. Don’t suffocate them, belittle them or take any independence away just keep an eye out and help them when needed. Knowing somebody is there for you helps a lot. Maybe somebody at work is clearly tired and really struggling today, you don’t necessarily know whether or not they have epilepsy but please still be kind and patient. They could be epileptic or not, you don’t know what they’re going through and they may just need a little pat on the back and support.


5 thoughts on “Fear Of The Restless

  1. Very well written and a real eye opener as to what someone with epilepsy goes through just from a restless nights sleep. Even as your mum I had no idea that these things are constantly in your mind on days like this. Thank you for sharing and keep up the good work.

    Liked by 1 person

  2. I agree with Tracie, this really has opened my eyes into a world that I didn’t understand or even really knew existed. Keep up the great work and I am sure your honest accounts of your own experience will truly help both people with and without epilepsy.

    Liked by 1 person

  3. Renee this is a very insightful piece. I particularly value your advice at the end of your post. So often people don’t know what to do to help. Your tips make this clear.


  4. Beautifully written & very detailed. I feel like I know you more on a personal level after reading this. I really Hope that others out there find this and will read this and know they’re not alone and they become more aware of what other people are going through.. great insight can’t wait to read more.


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