Dealing with epilepsy

Living with epilepsy – how bad it is

Quite a while back, I realized that living with epilepsy has multiple sides to it, and I kept thinking (and complaining here) of just one: just my point of view as a person with epilepsy.

But there is something else to think about: how it affects the people around you. I got a harsh reminder a few weeks ago when I had a seizure at home with just my 7yo kid around. I taught him the procedure: go on my phone, click on the emergency call and call the emergency numbers I set up there (my neighbor across the street and his mother).

He did that; he even called my neighbor on my desktop WhatsApp app because the laptop was open when all happened. He left voice messages to people, opened the intercom in the building and let my neighbor in.

Dream diary · Way too personal

Dreams, “dreaming,” or something I don’t understand?

I have no idea what has happened in the last few weeks, but my dreams keep getting weirder.

They are not related between them in any way or related to epilepsy. Thus, a new part of the blog begins, trying to map out my dreams and keeping me from forgetting them.


Cluster seizures and what they can do to you

Doctors define cluster seizures as having two or more seizures within 24 hours.

Well, on December 28th, I had 5 seizures in about 5-6 hours, with the last one being on a stretcher when the ambulance came to pick me up after the first ones. From my perspective, it wasn’t extraordinary. I finally realized what focal seizures are (I had 2 in bed and came back from them in seconds), but, as any idiot would do, after a while, I wanted to take a shower, so I fell in the bathroom, hitting the floor and leaving a lot of blood there.

But at least I got to spend New Year’s Eve in the hospital :)). Not that that is a good thing. In those 10 days there (December 28th to January 6th), I lost a lot of blood, but only to lab testing, and, for the first time ever, I had a seizure while doing an EEG. It was the first time seizure activity was seen -> just a focal seizure of 2-3 seconds, but still.

But things could only get better, people would say, especially if your treatment is adapted. Remember those lab tests?!? It seems my kidneys wanted to join in on the fun: renal artery stenosis – the official diagnosis of what a nephrologist found.

Yey …. but everything is getting better and will be better. A new year, a new day, all work and play.

Blog · Dealing with epilepsy · Way too personal

Back or not?

A friend suggested that I should restart writing here a few minutes ago. I have been thinking about it for a while, but I’ve been busy (another word for lazy in this context).

But here it goes … new article coming up soon.


What I am missing on: the dating life of a person with epilepsy

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?