SUDEP

SUDEP: Sudden Unexpected Death in Epilepsy. I didn't even know there's such thing until I found a mother on Twitter with the username: @bugsme012 who tweets every single day:

"Every day in memory of my son and every victim of SUDEP"

I think I found her twitter because @BrainAblaze retweeted the tweet and I'm following @BrainAblaze... Then a couple of days later I heard the news that a certain young celebrity passed away because of SUDEP. Cameron Boyce was only 20 years old when he died because of complications of epilepsy. He died in his sleep after a seizure... And then I was like "Huh??? You really can DIE in your sleep after a seizure???" After that since Anti-NMDAR Encephalitis is pretty much related to epilepsy, I'm starting to dig more about what SUDEP is.

Apparently according to Know SUDEP Now, Sudden Unexpected Death in Epilepsy, while rare, can occur when a person with epilepsy dies because of a related accident or seizure emergency. You have an increased risk of SUDEP if the tonic-clonic seizures in your sleep are uncontrolled and you sleep alone. So now I know WHY there are times when I wake up drenched in sweat and panting heavily as if I just run up and down the stairs for 2 hours!!!! Yes, it happened. I have a seizure and then I fall asleep. But I wouldn't know if I don't wake up with my tees soaking wet, my pillow has a giant drool island or some body parts hurt (because I hit something accidentaly). There are also times when I just wake up in shock and ask myself "What the fuck just happened????" SUDEP occurs more frequently in people whose seizures are poorly controlled though. So hopefully when I take my medicines on time and avoid stuff that can trigger seizures umm... I guess...I'll be safe? Fingers crossed! Avoiding the physical stuff is easy. The emotional ones on the other hand... 

Sleep seizure or also known as nocturnal seizure disrupts your sleep and makes you dizzy during daytime, which can increase the risk of seizures. Why? Because lack of sleep can also increase your chance to have seizures. Unfortunately going to sleep is not that easy for people with epilepsy. Why? Oh it's complicated :)) According to Epilepsy Action Australia, diagnosing nocturnal seizures can be difficult because they happen during sleep, and the person may not be aware of them happening. Yup! That's true :)) It even happened to me during EEG and I didn't know! Of course my beloved dr. Rocksy already explained to me these types of seizures. Unsurprisingly I forgot all about it BUT fortunately I already blogged about it :) (Doc Rocksy Menjelaskan) Now I've become aware of this SUDEP thing which turns out to be...possible. I wonder why dr. Rocksy never mention about it to me though... Or maybe she did??? 

Anyways... Now I understand... No wonder my daughter and the maids like to check up on me when I'm sleeping or just chilling in the bedroom. Kukka would get close to me while I'm lying on my bed and she touches my arm or just calls my name. Sometimes while we're busy doing our own things, Dewi would knock on my bedroom door, calls me and takes a peek. Or Kukka would just screams out my name from her bedroom using that loud and cute voice of hers :) Apparently I had seizures during sleeping and my daughter witnessed those moments. My poor baby must be quite traumatized :( I talked about it with Kukka while I was writing. Her response:

"Now I'm calmer because I know what to do to help you." -Kukka-

How can I NOT love her THIS much. My beloved precious godsend :*

The New Normal

Normal. 

What does it mean exactly? I guess everybody has his/her own opinion about what is normal. It's a subjective matter after all. Especially since this horrible pandemic began. According to Wikipedia: A new normal is a state to which an economy, society, etc. settles following a crisis, when this differs from the situation that prevailed prior to the start of the crisis. The term has been used following the financial crisis of 2007-2008, the aftermath of the 2008–2012 global recession, and the COVID-19 pandemic.

Yeah... It's the Corona virus guys... Real. Hoax. Self-quarantine. Mingling in a crowd. Mask. No mask. I heard that there's even some big conspiracy theories about the COVID-19. Whatever I don't know... #bigsigh What I do know for sure is that I don't want to gamble with life. Especially the lives of my loved ones. My families and my Precious Godsend in particular.

Avoiding crowds might be a little bit tricky for some. Especially for those who eventually have to start working outside their homes. But it sure is stressing me out, this -fromhome thing. I miss doing unimportant things outside the house. I miss my friends. I miss picking Kukka up from school. I miss our pizza time before her Skaci class. I miss going to the movies. I miss my pilates session. I miss just sitting around and enjoying a cup of coffee in a small coffeeshop. I miss my me-time outside the house. I miss having lunch with my BFF. I miss a lot of things! Unfortunately as a person who suffer from an autoimmune disease, which makes me even more vulnerable to catch COVID-19, I have to be extra patient and super extra careful. The risk is too high. Not only for me but also for everybody around me. Then again, stress is very bad for my health :)) 

So for my well-being I still go out even if it's as simple as driving around Bintaro. Or just relaxing on the patio, enjoying the weather with my girl, SiMoochi and SiBapa. I let all doors in our house wide open to get some fresh air. SiBapa's team also still come to our house and work and do whatever it is that they do up there :)) In some weird ways I do enjoy having SiBapa's team working here :) What I'm trying to say is that we are not being paranoid to be with other people. Once or twice we also go out to meet our parents. Making other people happy can also make you and others healthy you know :)

So yeah... Again. If it's as easy as wearing a mask which can save lives and at the same time can let you live a new normal life, then what's the hold up? Uncomfortable? Yes. Ruining the look? Probably. But so what?!? There's too many "what ifs" involved. Too many questions, doubts and uncertainties. Too much is at stake if you're not wearing a mask. 

What if that one time I didn't wear my mask it caused a family member sick and pass away? What if that one time I forgot to wash my hands it made some stuff I've touched "infected" by this god forsaken virus? What if that one time I chose to ignore all the necessary precautions it made this virus transmission easier? What if that one time YOU chose to be ignorant?

At the end I guess it's all about choice. If you choose to be reasonable, you follow the extra precautions. Wear a mask and have a new normal life. They might spare you and your loved ones a couple more years to live life as healthy beings. If you choose to be as dumb and ignorant as Donald Trump, who said "It is what it is.", better think it through how your stupidity at the end of the day could effect not only you, but also your loved ones. Salute ;)

*I'm wearing this super cool mask by Wickana Laksmi Dewi. Visit Masker Untuk Indonesia and get one ;)