Dealing with epilepsy · Misconceptions · Not too personal · Way too personal

My 1-year seizure-free streak is gone

On May 8th, 2025, I had my last 2 seizures. Until yesterday…. the day started normally: at a corporate team-building, listening to presentation and waiting for the early afternoon break to go explore Lisbon a bit more before the last group activities.

But, during lunch, everything started to seem so familiar. A headache, a feeling of confusion, headspinning… I knew that something was coming. So I gave up my plans and laid down in my room and tried to rest. It’s difficult to even do this … a much of feelings ranging for sadness to disappointment and pure rage come in minutes and change every time to try to thing about something else.

Yesterday evening, I woke up with a swollen tongue that was overly bitten this time and I’m struggling to speak. The night wasn’t kind. Kept waking up every hours or so, either because of my headache, back pain and many other kinds of pain. In morning, I saw the extent of what happened: blood on the floor in the bathroom, in the room – all over the bed – and … on me. My t-shirt had huge blotches of blood, the bedsheets also.

Now, it’s time to restart the count and try to make it longer, much longer.

Dealing with epilepsy · Misconceptions

How epilepsy changes your relationship with planning

Planning used to be simple.

Now it’s layered.

Not complicated. Just… heavier.

Planning becomes risk management

It’s not just:

  • where
  • when
  • how

It’s also:

  • sleep
  • stress
  • medication timing
  • exit options
  • “what if this goes wrong”

You stop planning events.

You start planning outcomes.

Spontaneity gets expensive

“Let’s just go.”

That works if your body is predictable.

If it’s not, “just go” can turn into “pay later.”

Late nights, missed routines, extra stress — small things stack.

People call it overthinking.

It’s not.

It’s memory.

Continue reading “How epilepsy changes your relationship with planning”
Dealing with epilepsy · Way too personal

Professional cuddling for epilepsy

Professional cuddling, here is something I didn’t know existed. I found about this due to a friend. There are people out there, others than psychologists, pshyciatrists and friends, that offer to help you with a nice talk, a sensitive discussion and a cuddle (for a fee, of course).

But how can this help people with epilepsy?

Continue reading “Professional cuddling for epilepsy”