FAQs

–Side Note: answers to the following questions are my own answers based upon my own experiences with my medical journey. I try to answer the questions as best as I can while trying to give other possible answers and making it clear that I’m answering based on my own experiences. I hope I answer questions enough but I can’t answer on behalf of others. These answers are associated with myself and nobody else. Please be aware that some questions are deemed offensive by some people with epilepsy so be cautious when asking. Any questions that have an asterisk (*) are one’s that either I feel uncomfortable/offended when asked or I know are deemed offensive by others.

 

• Do you take public speaking jobs?
  • Yes, I do. I’m happy to speak on any and all of my health conditions to any age range. Typically for half an hour with a following half an hour for question time. Please go to the contact page to discuss this further.

 

• Goals for 2020?
  • Meet with Emily (@crps_queen on Instagram) at least fortnightly
  • Finish my first book
  • Get back to playing piano
  • Make 20 art sales
  • Get more public speaking roles

 

• Where did Rüya get his name?
  • I was really struggling with my anxiety and panic levels so my Turkish friend made a playlist to help me calm down and named it Rüya (Turkish for dream) and when I met my dream boy I just knew Rüya was the perfect name for him.

 

• Do you ever get sick of all the travelling?
  • During covid-19 pandemic, I still appreciate the treatment opportunities that come with such travels but during standard times I also appreciate the opportunities to see friends and work opportunities

 

• Are you going to be okay here at [event name]? It has flashing lights.
  • As far as sensory input with being autistic, it’s my favourite place to be, I’m drawn to colourful and flashing lights. My attention naturally shifts towards that and I’m often found staring directly into the lights.
  • With my epilepsy, I’m not triggered by flashing lights.
  • With my FND, I’m typically as safe as everyone else. Occasionally I won’t feel well, will go sit down away from the lights for a minute and will be fine again. On one occasion the lights were so intense I could see anything around me and in that instance it triggered strong jerking movements but I was safe and the jerking ended as soon as the lights calmed down.
  • Yes there is a risk in me going to events such as concerts due to their flashing lights however everybody’s experience with epilepsy is different so, for those with epilepsy, I do not recommend going to a concert that will have flashing lights before first weighing up the possible risk factors for your own situation, discussing with a medical professional and creating a safety plan in case of an emergency.

 

• What are your triggers?
  • Fatigue and compromised immune system are my epileptic seizure triggers but they also happen without triggers which is more common than you think.
  • Fatigue, stress, anxiety and no trigger are triggers for my non-epileptic seizures and various forms of dissociation.
  • Some people have many triggers, some have one trigger, some have none, some know their triggers straight away, some learn what their triggers are throughout life and some never know.

 

• Do you get any warning that you’re going to have a seizure?
  • That ‘warning’ is called an ‘aura’ and much like triggers, some people have one and some people don’t. I occasionally get a gut feeling that I need to sit down before a non-epileptic seizure but I don’t have an aura specifically for either seizure and I don’t usually get that gut feeling.

 

• *What does it feel like when you have a seizure?*
  • Most of the time I’m fully unconscious during the seizure meaning I don’t feel or think of anything in that very moment but when I initially wake up after the seizure I usually feel very scared, confused and disoriented. Sometimes, although I still can’t see, speak or have any control, I can hear what’s going on around me during the seizure. When I have a seizure where I can hear what’s happening, I may not be thinking of anything in particular but, I feel extremely scared and panicked/worried for my safety.
    • Side note: it’s recommended that you stay as calm as possible and talk to the person during their seizure in case they can hear you.

 

• *What happened to your leg?*
  • I experience functional limb weakness due to FND. I experienced a bout of it for 4 consecutive months and have lost the ability to walk, something I’m working to gain back.

 

• Is it okay to ask how long since somebody’s last seizure?
  • Personally: currently my general rule is it’s okay to ask me this question. There are some days where it makes me uncomfortable but I tend to brush it off as at this point in my life I personally feel a bit rude telling one person it’s okay to ask me that question while telling another it’s not okay.
  • For others: it truly depends on the person as a lot of people don’t like to talk about it for various reasons. 2 years ago I wouldn’t talk about it with anyone, not even my mum, because I hadn’t come to terms with my condition yet and I felt (and still do feel) like my whole life revolves around when my last seizure was and when my next will happen.

 

• Would you like to travel?
  • I have travelled interstate both alone and supervised a few times throughout the years. There are risks to travelling even a few hours away by myself, but I do take those risks head on sometimes and that has both paid of and come back to bite me. I’d love to travel further one day but I most definitely need to get my health under better control first and organise an aid to bring with me so I can stay safe. Definitely follow your health professionals advice on this topic.

 

• What’s something you need to know if somebody has a seizure in a car?
  • Pull over asap but in a safe area
  • Leave their seatbelt on
  • Get into the back seat to hold their head up
  • Try to cushion the area around the seat if possible
  • After the seizure is over remove the person from the car and put them into recovery position in a safe space away from the road

 

• I wonder how you can balance other things on your plate when already worrying about your health?
  • All days are unpredictable, but some days are better than others and I’m able to get things done while others I have a good ol’ cry. The key is to take it all day by day and know which days are which. Needing help is okay and it’s good to know when to ask for help.
  • Having friends that support me both with my health and the things I try to fill my plate with, that can sit with me through the harder days or shine light and encouragement in that time and can make me smile on both the good and bad days REALLY helps.

 

• Thoughts on medical cannabis? Do you support it?
  • People tend to assume my stance on the matter simply because I’m epileptic which does annoy me however you’d be right to assume that I’m in full support of medicinal cannabis.

 

• Do people really eye off your medications when you take them in public?
  • If it’s not eyes of judgement, it’s eyes calculating what I’m taking and if it’s worth taking from me. I have had my medications stolen in the past.

 

 

If you have a question that isn’t answered above please feel free to ask me over on @PABlogOfficial, @ItBeRenee or leave a comment down below.

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