As February comes to an end, March begins and I embark on my third annual month long Epilepsy Awareness campaign in the lead up to Purple Day. March is always my busiest month of the year now however, I wish to take a moment to flashback to some very special Februarys in a two part blog series with this being the second.
This one starts with a bit of a jump back to late December 2017 before I take you back to mid February of 2018.
After the events of my last post I was invited to Epilepsy Queensland Inc.’s Annual General Meeting and Awards Night as a nominee. On this night they had a panel of speakers including the amazing Dr. Sasha Dionisio. As he spoke about specific kinds of epilepsy and how he treats them with ways that were previously unknown to doctors in Australia he struck a chord with my mum and me. What he described for a lot of his speech matched a lot of what we knew of me and taught us both so much information about my own case. My treatment at the time was nothing short of negligence when that negligent team had already said themselves that I needed urgent testing done but had not organised anything. Knowing this and seeing how well educated and passionate for patient care Sasha is my mum was introduced to him in hopes he’d take my case on. Immediately he too knew I needed better treatment and the aforementioned urgent testing.
By February 11th 2018 I was admitted for a Video EEG that was to last at least a week but may last longer if needed. Please click here for a much better explanation of a VEEG than what I’m about to give you. This meant I was admitted to a hospital where I was hooked up to countless (very itchy) wires on my head that monitored my brain wave activity while a heart rate monitor was hooked up to my toe until I’d roll over in my sleep and it fell off. All of this was also being constantly monitored via a video camera and microphone in what they definitely heard me call the “big brother room”. This sounds a little creepy to some but it was really to help them get the most information possible to help me. Some people say or make certain noises and movements before, during or after a seizure that can indicate where in the brain the seizure came from. The more information the better so I promise the big brother room is actually incredible and so are the people in it.
Here’s where I’ll remind you that for as long as I’ve had epilepsy, if not longer, I’ve also had what the doctors were calling an “un-diagnosable neurological disorder”. I always hated this name and soon you’ll see why.
During my stay we did everything possible to trigger episodes and every time I had a seizure or the other episodes we were trying to diagnose my mum or I had to press a button that sat by my bed. Every time I pressed this button it sounded a really scary alarm noise throughout the ward and alerted the big brother team to come check on me. I’d then have to do a neurological exam. Most of the time, after what we now know were non-epileptic events, it would go a little like this;
“Renée, do you know where you are?” a doctor would ask with urgency while others would start checking my obs, writing stuff down and what not.
Of course I won’t necessarily name the hospital on here but I gave them the name they needed to hear while trying to keep my voice calm. If I started freaking out that wouldn’t help anybody, much less me.
“What is this item called?” the doctor would ask as he holds up a fake egg.
“An egg.” I’d answer the question. It might seem a bit obvious but after a seizure I could call that an apple. It happens.
“What colour is it?” the questions would continue. At this point the cheekiness inside me would poke out.
“Could be called cream or beige but I think eggshell seems like the obvious one to lock in Matt.” I couldn’t help it and thankfully everyone would chuckle.
At one point I was asked the colour of a fake capsicum that was red, orange and yellow. We were all a little stumped when I asked if I could only give one colour for that item. Again we all laughed.
I thought I had a quiet week during that admission and I was worried we weren’t going to get the answers we were searching for just yet. Maybe I’d have to stay another week but I was prepared to do whatever it took. The doctors however believe that was an alarmingly busy week. I choose to ignore the concern about the rate of activity for that week because it was exactly what we needed.
All the information sent to the big brother room came back with more information about my epilepsy and a new official diagnosis.
Sasha came into my room, sat down and told me to start recording using the audio recording app on my phone because “I’m about to give you a lot of information and your mum is going to remember at least 70% and you’re going to remember about 20%.”
Why do I remember that as part of my 20%? Because in that moment I knew we had the answers we’d been searching for, for years on end, and I felt validated by a doctor for the first time along my journey. I’ve known my memory has become unusually shocking during my journey and for him to walk in and tell me what he said meant he was going to tell me what I needed to hear and it wasn’t “all in my head”. It’s all in my brain but it’s not imagined. At this point I had to try my best to hold back the tears and remain calm.
He went on the explain that in his work here he usually comes across people who have epilepsy or people who have been told they have epilepsy but actually have Functional Neurological Disorder (FND). Lucky me, I have both.
He explained the extra information they had found regarding my epilepsy but I don’t think my mum or I were focused on that at this point. We were too hooked on the fact that we had an answer. I have FND. At some point in his explanation of FND the conversation had to be halted.
“Please stop crying. I’m going to leave here and they [the big brother team] are going to make fun of me for being a bully and making more patients cry.” He explained with a light heartedness to his voice.
“It’s a good crying. We’re just relieved that somebody listened and is telling us it’s not all in our heads for the first time in years.” We promised.
“They don’t care, they’ll still tease me.” He replied making us all laugh as tears continued to stream down mine and my mums’ faces.
But it was true; we felt instant relief after being told we were being understood. From there I was referred to the hospital’s FND department and was given the choice to stay under Sasha for my epilepsy. It was hardly even a decision; of course I stayed with Sasha.
It’s now been a year since I got the diagnosis that changed my life. I was able to look back at the majority of my life and have all the confusing puzzle pieces fall together, I understood me better. I now understand my body better which means I know what it needs better. I’m working hard with my FND team and my Epilepsy team to get both conditions under better control. They both work together to give me the best care possible. I also have a new found hope of all the things I can do once my situation is even just slightly better under control.
Thank you to a life changing year to the big brother room, my current epilepsy team and my FND team.
Thank you Sasha for listening when my mum first approached you, for giving me the opportunity to find my answers and for giving me the name to the disorder I always said was “definitely diagnosable. We just don’t have all the information needed for a diagnosis yet, that doesn’t make it un-diagnosable.” You proved me right on so many levels and I owe so much gratitude to you. You’ve also given me the education and treatment I’ve always deserved with my epilepsy but never received. For that I’m grateful again.
Thank you to the big brother team for being the big brother team. You were all so kind. You tried to make me laugh as much as possible and to ease my nerves especially when that alarm or the triggers scared me. You worked so hard around the clock. You never got mad at me whenever I accidentally touched something (like my laptop) that sent the brainwave monitor into a frenzy. You’re such a large part of why I have my answers, I’d be at square one without you. You also signed my purple pledge to support my awareness campaign last year. You’ve shown me support on so many levels. Thank you so much.
Thank you to my current epilepsy team for taking on the random girl from the middle of nowhere. Thank you for being so accessible, if somethings going on at home and my appointment isn’t for ages, I know I can always get hold of Peter or someone on my team and get the necessary help. Thank you for always listening. Thank you for being so willing to do what it takes to get what I need to better my life with epilepsy.
Thank you to my FND team for the past year. While one answer seems to lead to so many more questions every time you always do your best to get me all the answers. You listen, you care and you validate my whole experience with FND. I’ve still got work to do especially to reach my future goals but I know you’re working just as hard to get me there. You’ve changed my life. Thank you endlessly.
And of course what’s a round of thank you’s without a massive thank you for my mum. For driving me to yet another appointment, for staying by side for yet another hospital stay and for never giving up on me or the answers I deserved. I could never ask for a better mum or advocate.