Good News, Bad News.

It’s hard to celebrate good news when surrounded by bad news.

 

I’m officially epileptic seizure free! After over a decade of epileptic seizures, of medications that slowly drained the life from my body, of neglectful doctors who wouldn’t admit that they didn’t know what they were doing, I’m finally epileptic seizure free.

 

I didn’t give up even though I wanted to many times, my mum never gave up on me and my new medical team of Pete and Sasha never even considered that my case was worth anything less than all the work they put into it. It all paid off because I’m 21 and epileptic seizure free.

 

This is worth celebrating and thankfully, while covid-19 lockdown limits me from doing much, I have people who remind me to not forget the good and I’ve sold a few of the paintings I create to cope with the bad, so I can afford to treat myself in celebration. (Buying a hoodie from my own merch line that you can get here is a good treat, right?)

 

Unfortunately for me, in the same mouthful as the above good news, I was also given bad news. My Functional Neurological Disorder (FND) is worsening and intensifying. I must try a new approach with my treatment plan as what I’m currently doing clearly isn’t working. New things scare me. Treatment for FND can be a lot harder than Epilepsy treatment in certain aspects, which is disappointing as I’m already exhausted. I’ve spent majority of my life fighting with my body and the medical system to be able to get to where I am. I just want to rest but I can’t afford to stop treatment without the high risk of slipping further behind.

 

FND is also making it hard to process that I’m epileptic seizure free as part of it getting worse is my non-epileptic seizures (caused by FND) are beginning to imitate my epileptic seizures. My FND is accessing the part of my mind that holds memories of my epileptic seizure patterns and uses that information to replicate the thing I’m celebrating the end of.

 

It’s hard to feel happy that my epileptic seizures are gone when, quite literally, every other morning I’m waking up feeling like I just had another. At least now I know it’s FND but that doesn’t make it much easier.

 

FND steals my independence and abilities, it takes away my ability to live life rather than just survive, but as if that wasn’t enough it takes away the joy of the miracle I never thought would happen. I’ve spent countless occasions feeling hopeless with tears pouring down face for over half my life, feeling like I’ll never get to feel the euphoria of being seizure free. I was right. I’m epileptic seizure free but I’m yet to share in the euphoria my community experiences when reaching such milestones because I’m not yet truly seizure free and yet again I’m not sure I ever will be.

 

I share this, despite it being quite sad, because there are many stories that sound like the opposite of mine but where’s the diversity. It took me a while to be able to process my feelings into such words but I’m sure I’m not the only one who has such an experience or feels alone in this part of their journey.

It’s also just good to tell the world how you feel sometimes and for the world to have diverse perspectives.

 

P.S. if you could all congratulate the young Renee for making it this far when she never thought she would, that would warm my heart for both young and old Renee.

FND Day 2020

Today is the first time I’m celebrating FND Day and with Purple Day just hours away, it’s a busy week for me to say the least.

 

Today I’m explaining more about FND as even close friends know that I have it but have no idea what that means for me.

 

Let’s start with the basic, FND stands for Functional Neurological Disorder.

FND can be caused by psychological triggers, physical triggers and a mix of both. In my case it’s a mix of both. It’s important to understand all possible types of triggers as this can affect the type of treatment needed.

 

As FND has a long list of symptoms, with each case experiencing different symptoms in a way that’s unique to them and presents in both physical and mental manners it’s important to get the adequate treatment.

For example, I experience extreme anxiety that’s hard to treat but we try with neurpsychology with medication from my neuropsychiatrist.

I also experienced functional limb weakness for 4 consecutive months in 2019 and now need physical rehabilitation to help me walk again. Psychology obviously would not help with this symptomatic problem.

 

It must be understood that FND symptoms can’t be controlled. If it could I’d rather be in dance class or ice skating with my best friend instead of learning how to walk again by myself. I also would never make myself have a non-epileptic seizure, where I can hear and feel everything, as that only adds to my psychological trauma and triggers.

 

For some FND is treated adequately and soon after it’s triggered which can lead them to only having a temporary disability. Unfortunately, not everybody is this lucky.

Sometimes it really is just about luck, some people don’t respond to treatment as well as others, but a lot of the time it comes down to the fact that people can’t be diagnosed soon after being triggered as doctors aren’t as aware of FND as we’d like. Once being diagnosed, people with FND also must face doctors who aren’t well educated but don’t wish to admit it. Some doctors simply don’t know what they’re doing with FND treatment and even try to treat all symptoms with psychological options even if the symptoms presenting have nothing to do with the psyche.

This means some people, such as me, are left with a permanent disability.

 

Despite the fluctuation in how long the disability lasts and the variation in who ends up with a permanent disability, FND is definitively a legitimate disability.

 

However, professionals seem to be behind on the times, yet again.

 

According to the classification guidelines of the International Olympic Committee for para sports, functional impairments are not a recognised/eligible impairment.

This stops talented, authentically disabled, athletes from following their goals.

Something needs to be altered there and I hope when the time comes, I have your support in the fight for change.

 

In the meantime, here are some ways to help those with FND or make things more accessible for us;

  • Make sure everywhere is accessible to mobility aid
  • Keep in mind that for some, some of their symptoms can be triggered by sensory input so consider the environment you’re creating
  • Our symptoms can include or cause fatigue so please be patient with us and please be understanding if we need to alter or cancel plans because of it
  • Be patient with us during dissociative attacks, memory or concentration struggles, speech troubles
  • If we have pain problems caused by our FND (CRPS for example) please be considerate of what could cause us more pain and what our pain limits us from doing
  • No matter how funny you think it is, don’t laugh at the hick-ups our symptoms cause until it has been clearly established whether the person with FND is comfortable with that. (For example, I don’t mind laughing at my speech mishaps in most instances but for some it’s a major insecurity)

 

I hope you learnt something new and now better understand the condition that’s by my side every day this FND Day!

Striving to Achieve

There’s a giant part of me that people either don’t know exists or they don’t understand how it exists within me. That part that coexists with my illnesses and disabilities is my athleticism. That’s right, I’m sick and disabled but I’m also an athlete.

 

Before everything went downhill I was on the Australian Development Squad for Taekwon-Do with big plans for my future.

I was so focused on representing my country and doing my best to win gold in Spain first before moving onto more. But there are people I consider best friends who have never known that I held such potential at some point in my life.

 

Osgood Schlatter Disease (OSD) in my right leg was the first bump in the road to Spain. At first it seemed like a small blip until it came to a point where I had to learn to walk again. I engaged in intense physiotherapy regime, learned how to walk, learned how to live with my knees disease and gained my strength back to be able to return to the sport that owns my heart.

 

Then epilepsy reared its ugly head into the situation along with some symptoms that were undiagnosed at the time but we now know are from Functional Neurological Disorder (FND). Some say that given the high contact level of the sport and the potential knocks to the head meant I had to give up the sport then and there. That wasn’t going to happen on my watch. Protective headgear wasn’t a requirement at the time but it became a personal requirement for me. I trained harderthan my team mates to be able to dodge head attacks specifically. I was already quick on my feet and fast at calculating somebody else’s moves and my countermoves but I worked hard at perfecting the craft so I could truly protect myself. I learned to listen to my body better than anybody else on my team, I had to listen and learn what my body could and couldn’t handle so that I could continue at the sport I adored while staying safe. 

I trained at least twice as hard as my team mates, learnt things they didn’t bother with, just to keep up and keep safe.

Chronic Regional Pain Syndrome (CRPS) made multiple appearances and took me out of the game on many occasions but I always came back. I worked my butt off in intense physical therapy regimes to get to where I wanted to get to. I’d go into remission just to fall back into its evil clutches and have to learn to walk again while my team mates progressed in their learnings and competing. I think this part has been the biggest hurdle mentally. This time I wasn’t working twice as hard to keep up, I was working three times as hard to get back to where I was at. By this point I had been removed from the team with my spot on the team reserved should I ever be able to make it back. Most people would’ve given up at this point and I don’t blame them, I’d be lying if I said I’d never been tempted to give up, but I wasn’t ready to give up at any CRPS hurdle I faced. I currently face the arguably biggest CRPS hurdle yet and you can ask my Sabomnim (instructor) I am still determined to catch up, be the best Jeja(student) and make it onto the national team again. Even as I can’t currently physically participate in classes I still play a big role in keeping my fellow jeja’s on their feet because I spend my extra time studying theory and challenge them to keep up with me. I also have the most competition experience and get to share that with them and push them to do better. I’m forever grateful that I’ve been able to surround myself with wonderful Sabomnimand fellow Jeja who give me these opportunities that keep me engaged and full of determination.

 

I also dance at the most welcoming and understanding studio that I’m also thankful for. Thanks to FND I currently need to learn how to walk and use my left leg again. I’m also still dealing with the aforementioned mess of CRPS. I’ve already missed so much recently but the studio owner/instructor and my dance family are so supportive and remind me to focus on overcoming this hurdle so that I can dance again. They know I’ll make it back to them and don’t rush me which is the best daily reminder I could possibly receive, especially the reminder to not rush myself. In dance I still have to apply a lot of what I’ve learnt throughout the years in regards to my OSD, epilepsy, asthma, FND and CRPS. It’s not an easy sport for anybody but my body has made it harder and thankfully my dance family understand that. They know as much as I do that I’ll probably be back in the studio slightly too early before I’m supposed to be back but I’ll be back and fighting to do my best when the time is ready for me and we all know it.

It’s not easy and I still have to do things differently or pay different attention to my body but I’m still there.

 

The point here is this is shocking news to a lot when it shouldn’t be.

In an era where events like “The Paralympics” exist and are gaining more attention we still expect people to give up all athleticism the second they get sick or gain a disability. The abled society expects us to just give up even when we don’t have to. Some people are in situations where they can’t keep going on with their sporting ventures or they make the decision to put it aside but there are still people that can keep going they just have to do things differently.

 

We also automatically treat the people who continue with their sporting endeavours as irresponsible as though they don’t go above and beyond to keep their bodies safe. The other side of that coin is treating those who don’t have athletic projects as not caring for their body because we believe that yoga fixes everything.

 

We need to listen to people from all unique walks of life and respect that they know what their body can handle, that they know how to adjust things to suit their needs. We need to create a safe environment for ill and disabled people to discuss exercising, or not exercising, in a way that leaves them feeling connected, listened to and respected. The current style of discussion leaves people not wanting to talk about it. There will be people who are shocked but proud that I have persisted and people who believe I’m endangering myself when they know nothing about the extra precautions I take to protect my body while still enjoying what I love to do. Some will simply say I’m faking all of my illnesses and disabilities if I’m able to do what I do. This is not the environment we deserve to be stuck in. I work my butt off to keep up with my peers and I deserve to be able to talk freely about that without judgment and accusations. I should be able to talk about it the way any other athlete talks about their experiences; the highs, the lows and everything in between.