#1in10Challenge – Day 10

*This post may be triggering to some, please take care.*

Epilepsy and mental health go hand in hand to some degree.

You have to stay on top of your mental health to stay on top of your epilepsy and you have to stay on top of your epilepsy to stay on top of your mental health.

The majority of people with epilepsy (PWE) will experience anxiety and/or depression. I have experience in both anxiety and depression, and I know how hard they are to deal with alone let alone on top of having epilepsy.

I know that when my epilepsy was at it’s worst so was my mental health and my poor mental health caused more seizures. At my worst I experienced suicidal ideation, considering how many tablets from my cocktail of medications I take it would take to stop the pain, and I cried out about wanting to end it all so many times.

In reality what I wanted to end was the pain and the suffering from what I was experiencing, not my life, but I knew no different as a teen or young adult suffering through life changing events but expected to keep up with an abled life with minimal support.

I was lost and didn’t know where to turn. Epilepsy has stigma in itself but so do mental health issues, so I didn’t want to ask for help and face more problems from doing so. All I wanted was to hide and end it all.

There were plenty of instances where I could call my paediatrician neglectful but surprisingly she saw my anxiety and kept suggesting I get mental help through the psychology department but I always refused and denied that I was suffering. Part of her reasoning to push me into psychology was because my FND at the time was undiagnosed and she believed my symptoms were all in my head, but she did see my need for help with anxiety. I was better at hiding my depression though.

I suffered in silence for years until one day I broke. I hit rock bottom.

I couldn’t even voice my suffering verbally, I had to write a letter to my mum begging for help. I’ll never forget that night.

Thankfully my mum opened her arms to me instantly and made sure I got the help I needed. Ever since she’s made sure I’ve only ever gotten adequate care. It’s been a rocky path of balancing my mental health with my other health conditions but I’m thankful I spoke out.

I’m far from perfect or cured but having my psych team involved has helped me tremendously. I now get enough sleep at the right times which lowers the risk of triggering anything, I can take public transport without a panic attack most days and I actually know what it’s like to be a PWE and still experience moments of happiness.

Please be patient with PWE as we do experience these hardships and help us find the path to help as it really is helpful and is worth every bit of hard work.

#1in10Challenge – Day 9

Injuries are a natural occurrence when it comes to many types of seizures.

Education about this is key as people who know or think they know seizure first aid may expect there to be no injuries if the first aid is administered correctly. They may even blame themselves for doing something wrong if an injury is acquired.

Another area where education is key is with doctors.

While they are under obligation to report domestic abuse where they believe they see it, they have to be aware that multiple injuries and trips to the emergency department are normal for people living with epilepsy.

I once broke my shoulder from a seizure. Okay I broke it more than once but on this instance it was different.

I was refused care until my mum left the room.

The doctor took my shirt off, dealing great pain to me.

She started grilling me and insisting my mum was abusing me no matter how much I dismissed her comments.

I know she couldn’t see any further evidence of abuse on my torso because there was no abuse.

She had me so distressed that I screamed at her to get out while in crocodile tears.

She left the room, leaving the curtain wide open and me unable to get my shirt back on because of the pain of the broken shoulder. She left me, a minor at the time, half naked for everyone to see in a public hospital.

All it would’ve taken is one quick squizz of my chart to see that I’m epileptic and my injuries would’ve made sense especially when paired with no further evidence of abuse and my defence. But she pushed and pushed and ignored my diagnosis as though it didn’t exist and now I’m left with traumatic memory that comes forward every time I have to visit the emergency department.

We have epilepsy. We hurt and we break. That’s part of the diagnosis. People need to be aware of that so they know it’s not their fault and so they don’t traumatise more patients. So that we get the support and treatment that we need.

#1in10Challenge – Day 8

Over the years I’ve not only witnessed my own family dealing with a loved one having epilepsy, but I’ve had to privilege to witness other families coping with the same or similar situation.

Some families cope better than others, that much is surely obvious.

While some rally around their loved one and visit during every hospital trip, some become more distant and may never step foot in a hospital or even view their loved one during postictal phase.

Some go out of their way to learn seizure specific first aid and some will argue they already know what to do or know that there’s nothing to do after a seizure.

Some families become divided with some members fully supporting their loved one and others picking fights with others among the family.

As I’ve witnessed this, I’ve also witnessed the origins of these behaviours.

Sometimes what can seem like positive and supportive behaviours are actually toxic and overbearing. While some behaviours may seem distant and cold it actually just comes from a place of fear and not knowing what to do.

I share this as to say, please be cautious when making assumptions and comments based on what you have or have not seen. You may see great support while your loved one may feel trapped. You may see lack of support while your loved one feels fine as is. Maybe, instead, ask how you can be of better support yourself.

#1in10Challenge – Day 7

While it’s no secret, some of you may not know that I’m an early school leaver. I don’t regret this action because my school was not accessible or helpful therefore my mental health would’ve continued down a dark and dangerous path had I stayed.

I know one day I will go back to studying and I will have the aids necessary to do so. Why’s this? For some reason, while the exact amount of help is dependant on the school, tertiary education has more help on offer if you know to ask for it than primary and secondary education. Key phrase being if you know to ask for it, but at least it’s there.

Continuously my mum and I begged my high school for help, even if they just sent through my assignments and I worked on them in hospital. They’d refuse or ignore us then on the rare day I could make it to school I’d be asked where my late assignment was. When the class went on and I had no idea what anybody was talking about I was left behind without concern. But of course, when I was caught not understanding, or not focusing due to my medication, I was the one who got in trouble and was punished.

I was expected to keep up with my work and curriculum without being given any aid.

Our students need the help they ask for, whether that be something as simple as emailing what pages to read in their textbook while in bed or something more hands on like an in-class aid that helps take necessary notes and makes sure the student is following along.

Essentially, they need the same aids the best tertiary schools offer.

This shouldn’t even be a needed conversation anymore. If higher education can recognise that there are sick and disabled students who need further aid to keep up in their classes, why have the education facilities that come first not recognised and accepted this yet?

#1in10Challege – Day 6

I’m proud to be a grassroots ambassador for EQI.

Growing up with epilepsy I didn’t see ambassadors other than Wally Lewis and he was a famous adult while I was just a kid. Don’t get me wrong, I still loved him as the king and it was kinda cool that we both had epilepsy. His book helped my mum with understanding epilepsy but his book wasn’t relatable enough for me.

As I got older and followed sport more intensely, I found myself paying close attention to parasports. This lead to me finding one of my favourite athletes who just so happens to also have epilepsy, but again it was somebody I shared something with but there was no connection. Just another person I watch on TV.

Part of what I try to do as an ambassador is reach out and connect with people from all over. I try to be available and accessible to all who want an ambassador they can connect with.

For some, watching somebody they can see part of themselves on TV is more than enough for them. For some, they don’t mind if their ambassador is significantly older than them. But for most, they just want to connect with somebody like them around their age and that doesn’t have to be through face to face conversation. The zoom crew is a perfect example of being able to connect despite not being face to face. My blog and book series also offer a form of connection.

So thank you to EQI for helping me do something I find very important.

#1in10Challenge – Day 5

Epilepsy and self confidence aren’t best friends. Epilepsy scares you and puts you on edge by itself but the medications to help aren’t any better at times and only worsen the situation.

How can millions of people feel comfortable and confident in themselves when this is the case.

I missed a lot of school from being in hospital and having bad health days but it was such a struggle to push myself to go to school on the “good” days because I was so self-conscious. I was constantly worried about people staring at me because I had so much unexplained time off, my medication made my acne worse which isn’t good around judgemental teens, I was slowly dying at one point and didn’t look like the hottest girls in my cohort and, of course the most common insecurity of all, I was terrified of having a seizure in front of somebody while at school.

This was all so draining and all consuming.

How could I possibly bloom in self-confidence when this is what I faced every time I left the house. It was much easier to stay tucked away in my bedroom, which is what I did as much as I could.

“Oh, so the cave monkey leaves her room.” My mum would joke.

Staying in my room did nothing to help the situation, only making it worse. The more I avoided the public the scarier being in public became.

My escape from this was dying my hair fashionable colours.

A psychologist once asked how somebody so anxious could wear such attention drawing hair colours. It’s because it brings positive attention. Instead of worrying about anything else to do with my physical appearance people were drawn to my hair and complimented it. Kids likened me to their favourite doll or TV character with the same hair colour with perfect childlike innocence. These compliments encouraged me to continue and get creative. Those compliments slowly built my confidence up piece by piece. Suddenly I wanted to go out in public just to show off my latest hair colour.

Since then, I’ve written one novel and I’m currently writing my second, both have characters with epilepsy but both characters are wildly different.

Maia, from book one, is scared and avoiding the world, although we see some changes in those behaviours throughout the book, but the fear is still there.

Harmonia, from book two, is the complete opposite. She’ll get up from her seizure when it’s safe and strut away as if she’s on top of the world. If you try to embarrass her for her seizures, she’ll give it right back to you only better. She has no fear, she doesn’t let her seizures hold her back.

I’ve made fictional characters, but I’ve constructed them in a certain way on purpose.

Maia is the person people can relate to and Harmonia is the person people can aim to be like.

I’m creating Harmonia, her entire existence comes from within me, but she’s a character that’s nothing like me yet I aspire to be in some ways.

I’m trying to create an escape for people, including myself, in hopes that the person who reads it gets what they need to face the world. I loved books growing up and if I had books like these to read maybe I wouldn’t have turned into a walking rainbow to find my confidence.

I found my escape. Everyone needs an escape of sorts. I still worry about having a seizure in public but it’s not my main focus when I go out in public anymore. I’m improving and it’s thanks to my escape.

Find your escape and soar!

-Rainbow Renee

#1in10Challenge – Day 4

“The PBS Schedule lists all of the medicines available to be dispensed to patients at a Government-subsidised price. The Schedule is part of the wider Pharmaceutical Benefits Scheme managed by the Department of Health and administered by Services Australia. 

This schedule is now on-line and updated on a monthly basis.” – pbs.gov.au 

One very important medicine type that is not covered under PBS is canabanoids. 

In Australia canabandoids are currently used for children with hard to control epilepsy which has many patients on it. 

Studies are currently underway for adults with hard to control epilepsy and the psychological benefits. 

This medicine could benefit so many Australians and hopefully will in the future but we currently face a spiral that withholds that help from reaching its full potential.  

Doctors are reluctant to prescribe it because of the price due to it not being covered by the PBS. 

On average, an Australian on a canabanoid medicine will spend approximately $3,600AUD out of pocket a year on that one medicine. 

Doctors don’t want to burden families with that kind of toll on their bank accounts as most Australians can’t afford that or at least not comfortably. 

The problem with this is, the government typically needs to see the demand for the medicine via enough people buying it to get it on the PBS. Of course you can’t see the demand when doctors won’t prescribe it for the price.  

This is the spiral I referred to earlier. 

I’m often asked how I feel about canabanoids and I was recently asked how I feel about canabanoids and the PBS. I fully support canabanoids and I believe the government needs to look at the studies that have been and are being conducted that will tell them roughly how many Australian this medicine could help. Use that information to get the stats they need to put canabanoid on the PBS.  

What’s the point of having such a wonderful and powerful medicine that can benefit more Australians than we currently know of if nobody can use it because they can’t afford it.

#1in10Challenge – Day 3

I’ve learnt a lot about peer support during this pandemic. 

Due to not being able to hold face to face meet ups Epilepsy Queensland (EQI) decided to hold meet ups over zoom. They also got regional Queenslanders involved which was something very new to us as there’s not a lot in the way of support groups where we are. 

Beforehand my experience with peer support, other than my mother who deserves her own peer support, was having a few close friends who didn’t understand what I’m going through. While there’s things they may not understand, that’s still a valid form of peer support. For some it’s the only support they’ll ever have. 

Social anxiety had me scared to join the group, but now? I can’t imagine life without the zoom crew. We’ve built a community of peers who know the struggles each of us face and we support each other through them. What might be hard to talk about with abled friends is suddenly much easier because you know you won’t be misunderstood. 

What I’m trying to say is that while all forms of peer support are valid, we need to do more to make peer support groups widespread and accessible.

#1in10Challenge – Day 2

It’s already well known competitive sports has an unhealthy culture on many levels, watch Athlete A on Netflix if you need a prime example, and we put pressure and value on people’s achievements rather than on the person themselves. I was once a competitive athlete, so I know this all firsthand. This is so dangerous and unhealthy but how does this relate to epilepsy you may ask?

Athletes set goals and their vision on that goal almost becomes tunnel vision. They look at what they need to do to be the best and achieve that goal they’ve set and that’s all they look at. So, when epilepsy comes flying in from the side vision that they don’t have it throws them for a spin. Some handle this better than others.

My mum was always supportive of my sporting career but she also kept me grounded and focused on other things so when my health went downhill and put my career on hold, I was devastated but it wasn’t the end of my world. Don’t get me wrong, I still feel jealousy every time I see a former team mate compete or win or somehow move forward in their career and I’m itching to be up there on a podium with them but I also know my life is worth more than just that.

Not everybody has the same mother that I do. Most athletes put their all into their goal and when epilepsy comes flying in for a surprise visit it genuinely feels like the end of their world. Especially if their education on epilepsy is poor.

I know my epilepsy education and I know my career is on hold. Once my epilepsy is managed, which is possible, I get to start working on my career again which gave me drive to keep working on managing my disease.

Some don’t know any better and believe their career is over, not even their career has changed paths, but that epilepsy has completely obliterated it. Devastation rightfully kicks in. How they handle that devastation is what matters.

While some just box up their trophies and medals and completely turn their back on their sport because that’s how they cope some don’t cope at all and end not only their careers but their lives as well.

While sporting culture has changes it needs to make, such as allowing athletes to widen their view and put their values in multiple areas, so does the medical system. When somebody is diagnosed with epilepsy, they need to start seeing a psychologist straight away for help processing what they’re going through and how they’re feeling. I felt devastated about my career holt but had to navigate that myself like we all do. I’m one of the lucky ones who survived that part of my life. If we were all given the aid we need to navigate such a distraught and overwhelming time in our lives more of us would be the lucky ones who survive.

To all my siblings that have lost their lives because the systems failed them when epilepsy knocked them down, I’m sorry. We must do better and for you I will.

#1in10Challenge – Day 1

Relationships of any kind take a hit when somebody involved is diagnosed with epilepsy.

Friends don’t know how to behave around you anymore, family don’t know how to support you and partners don’t know if they want to be in a romantic relationship, let alone a sexual one, with a disabled person.

You may not notice these things at first but it’s almost inevitable that at some point you’ll fall into one of these categories if you have epilepsy.

But that’s okay because better people come along and lift you up.

To help that happen here are five tips to help make relationships work when somebody involved has epilepsy.

  1. Be patient. This goes both ways, sometimes you’ll need to be patient after a seizure and sometimes you’ll need to be patient while they process the seizure.
  2. Be gentle. Again, this goes both ways as epilepsy takes a tole on the one with it AND their loved ones.
  3. Listen to the person with epilepsy’s boundaries.
  4. Understand the persons limits in social settings
  5. Know what to do if something happens