Messages in Kindness

Since going public with my condition and no longer trying to hide or avoid it, I’ve noticed it comes up in conversation a lot.

I was at a concert recently where I befriended a pair of friends who I happened to be standing next to while we waited for the show to start. This night was no exception to my observation as it came up once again while talking to my new friend Taylah.

She initially asked me how the lights at the show would affect me which is a standard question I get whenever somebody finds out I’m epileptic.
This isn’t the part of our conversation that stood out to me as I explained the effects photosensitive triggers have on me.

She then asked if I had anything along the lines of a medical ID on me.
I explained that I have a medical ID on my phone but it wasn’t until later that this moment stood out to me.
It was a kind and caring gesture that meant she knew where to access my medical emergency information should she need it later in the night.

It was a question that friends I’ve known for years haven’t even thought to ask about. To most of my friends reading this now knowing of my medical ID on my phone is new information that they’re only finding now.

It’s not just the question that stands out to me though; it was the way she asked. She was kind and the tone she used didn’t make me feel any different to her, or anybody else in the venue, as a person. Although I know it’s typically an accident unnoticed by the person making it, I’m often singled out by people speaking to me about my epilepsy.

A lot of people are inconsiderate about the questions and comments they make towards people with epilepsy while others are careful and thoughtful with what they say yet they often speak with the same tone and attitude as each other.

I grew up with my mum telling me that “it’s not necessarily what you
say, it’s how you say it” and that’s exactly the problem in this situation.
Rather than asking a question such as ‘do you have a medical ID on you in case something goes wrong?’ in a manner that they would ask somebody ‘do you want a drink of water before you go out and play a game of soccer?’ people tend to ask the questions, such as the first example, in a manner that makes the person they’re asking feel like they are different.

I know it’s not intentional but it makes you feel very self-conscious, you feel like you stand out in the crowd and are different to everybody else despite statistics saying that there would be many epileptics in the same room as you.
A lot of this comes down to the fact that being epileptic increases your chances of developing anxiety, which is something I’ll talk about another day, so I’m sure if you’re reading this and have experience with anxiety you’ve probably noticed certain things that I’ve mentioned. You’ve probably noticed anxiety symptoms that I’ve mentioned and can relate what I’m saying back to certain experiences of your own in different situations.
If anything that just enforces that people with epilepsy are still the same as
the average person you meet they just experience the same things you do in
different situations that you mightn’t have experienced yourself.

I’m not sure if it was intentional or if it came naturally to her but when Taylah asked about my medical ID she asked so nonchalantly, as if she were asking what my favourite colour is, and I was extremely comfortable talking to her about everything because of that.

The next part of our conversation about my epilepsy stood out to me immediately and involved a message that I know I have to share with anybody else going through their own journey with epilepsy.

Taylah asked if I was scared about the night and how I’d react to the lighting and what not.
It was a question that made me think, I had to think about my answer and how much I wanted to share in response. Maybe I shared too much for what Taylah was expecting, who knows, but I was comfortable talking to her.

I was honest.

The truth is I was scared, a lot of things scare me in regards to my epilepsy, and the anxiety because of epilepsy that I mentioned above is really never any help.
The lighting used that night could have had no effect on me, it could’ve had some small effect on me as it usually does or it could’ve been the night where, ‘the straw broke the camel’s back’ and, I had a photosensitive triggered seizure. There’s no way to tell how my body will react until it’s already reacting.
When I go to a concert, no matter how big or how small, I’m taking a risk and challenging my body. That will never change and it will never be any less scary or risky.
Something I was too young to truly understand until recently is how it’s also scary for my mum to drop me off at a venue knowing those risks.
I’m sure you can tell by this point that going to a concert is truly all kinds of scary for more than just me and that’s not even the half of it.

However as I was thinking of what to say to Taylah I remembered something that I was only told in February of this year.

I told Taylah that it is scary and it never gets easier but one of my neurologists told me that “if you can’t live and enjoy your life freely then I’m not doing my job to help you manage your epilepsy so you can enjoy life properly and something needs to be changed”.

I was diagnosed with epilepsy in 2011 but I was only told that in 2017. It’s a very strong and true statement that would’ve helped a lot had it been pointed out to me sooner. That message has stayed with me ever since and it’s a message I’d like to share with others.
It’s empowering to people with epilepsy, a reminder that they can still enjoy life, and it’s a reminder to friends and family members not to unnecessarily take away independence from somebody with epilepsy.

Taylah seemed to approve of the answer I gave to her question and the conversation moved on to the excitement we shared for the show that was about to begin.

Taylah never made me feel abnormal while or after we were talking about my condition and I’m extremely thankful for that.
Taylah if you’re reading this, that night was unbelievably amazing and fun and your kindness was the cherry on top of a lactose free sundae. I hope others can learn from your small but significant act of kindness.

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.