Reflection

Depending on where in the world you’re reading this from it’s been 2018 for at least 24 hours now. While everybody celebrates the end of one year and the start of another in their own ways, this year I’d like to reflect on what happened in the last 12 months and what I’d like to happen in the next 12 months.

For me, the first day of 2017 started with no voice and the beginning of a month long case of laryngitis. About a week into the new year I had a seizure which is believed to have been caused by me being so sick while not being on a high enough dosage of the medication I was on at the time. This seizure was possibly one of my most extreme seizures with the after effects being very severe and lasting longer than a month.

I was so out of it after this seizure that when my mum asked me if there was anybody I wanted her to let know about what had happened I told her to tell people who didn’t even know that I had epilepsy.

Before the end of the month I fell down some stairs as I was still quite wobbly on my feet from the seizure and injured my ankle. This injury is complex and still ongoing. This seizure also resulted in my licence being revoked until I could get medical clearance again.

From this point I spent my year taking what felt like one step forward and ten steps back when it came to my physical health.

To say the least, my 2017 clearly didn’t begin on a high note and, of course, I had a lot of negative moments throughout the year as does everybody. With that being said I also had a lot of highs throughout the year.

Halfway through February, while I was still recovering from the seizure I had in January, I went to my mum and said “I have a thing I think I might want to do but I’m really not sure I want to do it or how to do it.”

The next week I stopped hiding my diagnosis and began raising funds and awareness for Epilepsy.

I spent the whole of March fundraising towards a $500 goal and raising awareness around my town. Through this I faced a lot of ignorance, stigma and negativity but I also got to meet the wonderful ladies over at Epilepsy Queensland Inc., meet a lovely family who are also on their own purple adventure, strengthen new and old friendships and I got to educated over 300 people of a town where Epilepsy isn’t talked about. People who have epilepsy or a loved one with epilepsy would approach me while I was campaigning and tell me how much it meant to them to see such a campaign and the positive response it was getting.

This was all such a surreal experience for me as in the lead up to my campaign I had told a friend “this is so daunting, overwhelming & scary. It’s making me so anxious to be doing this. Why did I volunteer to raise awareness about a cause nobody cares about when I haven’t even fully recovered yet?”

By the end of the month I had collected 340 signatures on the Purple Pledge which was a record for Epilepsy Queensland Inc. I also raised $349 through physical and online donations. Both of these were far above what I ever expected to achieve and I’m forever thankful to everybody that played a part in these accomplishments. I look forward to what my 2018 campaign will bring my way.

In June I started this blog in hopes to continue educating people around the world throughout the year. While I have been posting blog entries on my own time, rather than a consistent weekly schedule, it does impact my life more than I expected and I aim to post more this year. When I experience things in life that are impacted by my epilepsy I tend to think about what kind of blog posts I could make from that experience which somewhat forces me to find more positives and messages from that moment. The way this blog can make me see things in a different light has been super beneficial towards me and how I handle things that are thrown my way. Though it has few entries at the moment this blog has also taught family, friends and strangers from around the world more about me, my condition and how it impacts my life which has been great. I’m so excited to continue this throughout 2018.

Some people in my life know that I left high school early and even less people know that I left early because of epilepsy and the impact it was having.

In July I started studying again by beginning a Diploma of Music Industry (Business) online course.

Before I could apply for this diploma I had to take an Australian Core Skills Framework test in Maths and English in June and I needed a minimum of exit level 3 in both fields to be accepted into my course.

Knowing that I left high school early and how epilepsy often affects my cognitive skills I was extremely anxious to take those tests so when I completed both as exit level 5 (the best result possible on an ACSF test) I was ecstatic and incredibly proud of myself.

To be able to say I left high school early but can work at an exit level 5 level in English and Maths and am halfway through a diploma in a field I’m passionate about is an accomplishment that I’m truly proud of.

In October I faced a major fear of mine by flying interstate alone to surprise my friend in Adelaide for her 21st birthday. This adventure was another spur of the moment decision for me as I only started planning and booking flights in October. I flew down myself, got to surprise and hang out with one of my best friends, made new friends, went to a 21st birthday party that involved alcohol despite being in a different state to my main support system should something have gone wrong, made my way around a city I was unfamiliar with all by myself, had fun and flew home by myself. This was such an accomplishment for me and it helped to show myself, and hopefully others, that even with epilepsy I can still go on fun, crazy, spur of the moment adventures by myself and be okay. That spontaneous decision is definitely one of the highlights of 2017 for me.

When I returned home nearly a week later I had a letter from Epilepsy Queensland Inc. waiting for me to inform me that I had been nominated for Epilepsy Queensland Inc.’s Role Model Award for the work I had done throughout 2017. I was shocked and immensely grateful to even be considered for a nomination.

In November, by a chance of fate, I was linked in with a lovely lady from the other side of town who also has epilepsy and was inspired by my work in March to do some fundraising. Inspiring her and being able to help her pull off a successful lamington drive with funds going to Epilepsy Queensland Inc. was such an honour. I don’t often get to see the effect my work has had so it was very touching to see that a purple adventure I went on inspired somebody else to take on their own purple adventure.

In December I went to Brisbane for Epilepsy Queensland Inc.’s Annual Celebration, AGM and Awards night and it was a surreal moment when I was announced as 2017’s recipient of the Role Model award. If I had an epileptic role model growing up maybe I wouldn’t have hidden my diagnosis for so long and I could’ve handled a lot of things regarding my epilepsy very differently so to be nominated for such an award is extremely important to me. I hope I can continue to live up to such a title and help others with epilepsy or their loved ones throughout 2018.

At Epilepsy Queensland Inc.’s Annual Celebration, AGM and Awards night there was also a forum with a group of panellists from different fields speaking about different ways technology can help those with epilepsy and their loved ones. My friend that attended the night with me learnt so much that night but so did my mum and I which was really great and refreshing. That night we were also introduced to an Epileptologist working in Brisbane which has already opened up some new opportunities for 2018 which is really exciting and I hope to make some medical progress this year.

Throughout the year I’ve strengthened friendships, started new friendships, was inspired by others, got to inspire others, explored new independence, made change even if only a small amount, tackled some fears and had people looking out for me which was refreshing.

In 2018 I hope I can relive some of those great moments, experience new adventures, make new friends and continue to strengthen old friendships. I also hope to carry the ambition I found in 2017 into 2018, keep setting goals and working to achieve them, to continue having faith in myself, take more risks and make more spontaneous decisions.

Two points from this blog entry that I hope you take with you into 2018 are that life’s not always good but life’s not always bad either and you should take risks because they can lead to wondrous experiences.

Happy New Year!

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.