It’s been over a year since I posted last.
In the past year, I started a new (part-time) job, still working on the old one (so working 170% of a “normal” person’s time) and trying to get a personal life. This seems overwhelming from where I stand and invisible for those outside.
My dating/personal life: so I’ve been trying Tinder and Bumble for a while, but quit it mid-2021 because, well, they both suck. Had a few dates, met some interesting people, but didn’t connect with anyone.
My dating/work life: well, paying rent and eating is expensive, apparently, and you actually have to have money. So, as I said, 170% of the time. Financially, it is worth it and … I actually get to eat.
My personal life: gaining some “quarantine” weight seems to have been normal last year. For me, it seems that it was normal also. Unfortunately, for me, it meant about 20+ kilos of quarantine weight. I need to drop those before I feel comfortable starting dating.
What’s your secret in dealing with dating?
There are two types of reactions from doctors when you’re newly diagnosed and three types of reactions from people with epilepsy.
People would epilepsy can be split into the “don’t give a f*ck, I’ll do what I want” and the “I need to close myself into a closet made of pillows to not get hurt”. Plus there are those that make Google richer: searching non-stop for info about epilepsy: causes, triggers, treatment, online chats, epilepsy fellowships to colleges (yes, these exist in some countries), etc.
Doctors can either try to comfort you or simply tell you what you have and show you the door.
I would like to speak about the second category. Continue reading “The “No way out” line you get at the beginning”
I don’t have a lots of followers for this blog or a huge number of view – about 150-200 views/day. And most of these go to a post about humanity that I wrote in 2013.
However, how I wrote in my previous post, I get questions from time to time. Some stupid, some not. Some from lazy people (as someone commented to my post), some from people who just stumbled upon my blog and don’t care about epilepsy.
At the beginning of each year, I take some time to go back through the questions I got. With 2020 being a hard year on all of us, some of the “good” questions were a bit weird.
Here you go my top three favorites:
- What is epilepsy and why should I care about it? My (honest) response: you shouldn’t care if you don’t know anyone who has epilepsy: friend, family, colleague. Epilepsy is a disorder, not a disease so the only thing you could do is be there and be a friend that person.
- Why are people afraid of people with epilepsy? My (abridged) response: I’m not sure what you mean. I only met people afraid of someone having a (grand mal) seizure while they are with them. But that’s it. Unfortunately, I see that people actually consider those with epilepsy as inferior because we can’t do some things aka drive (for some of us), drink (I wouldn’t drink if I didn’t have epilepsy) etc.
- Is epilepsy dangerous? My response: yes, it is for some of us. For epileptics, imagine having a seizure in the middle of the street. It doesn’t matter if it’s grand mal or absence seizure. You could get hit by a car. For non-epileptics, it’s mostly the scare: imagine you are in a car with someone having a seizure (grand mal). If s/he sits next to you, you might lose focus/attention and get into an accident. But 95% of the time there is no problem.
In 2020, I received quite a few messages from people with epilepsy asking about side effects of meds, what kind of seizures I have or how do I handle stress, among other.
But, at the same time, I received questions from people without epilepsy: friends, family, teachers of those with epilepsy. While 90% of the questions were right on the point, the rest was, quite frankly, extremely stupid. Here is my top 3 selection:
- Is epilepsy transmittable? Answer: it was an exchange of three emails -> by transmittable, the guy (USA) meant something like COVID, not genetically. He actually got angry when I said “NO” because that’s the reason why he fired someone. I hope they go to court this year because of this.
- If I drink alcohol and have sex with my boyfriend, will the alcohol in me cause him a seizure? I like to drink. Answer: No. Neither alcohol nor stupidity can be shared through sex.
- Can a brain transplant be done to cure epilepsy? Answer: honestly, this was the only message received last year to which I didn’t respond.
Send messages or emails and you’ll get an answer from my personal experience. But strangers beware, sarcasm is a possibility.
It’s been more than 1 year since I last wrote here. It’s been an interesting period, with ups and downs.
But the reason I’m writing is not to share life’s challenges. It’s to talk about interesting options I found on tracking my seizures.
There are several possibilities: epilepsy monitors and trackers, apps and journals.
Personally, I’m using Google Docs. Here is the list of epilepsy seizures I ever had: My epilepsy journal. Continue reading “Epilepsy tracking”