I'm So Tired of Epilepsy!
And I bet you are too!
It hit me the other morning as I woke up, fresh from another dream that I was back in the classroom (I’m sure my brain will get the message sooner or later that this year is going to be very different!) that this year, I won’t have to give the “Epilepsy Talk”.
The annual talk to my colleagues and students about what to do if (when) I have a seizure. The talk that usually, despite my best efforts, includes the phrase “it probably won’t happen, but…” and then always, always ends up happening.
So as I lay there, thinking about how it is likely that even if my school team doesn’t realise that they have the luxury of not having to hear me try and make epilepsy sound upbeat for the umpteenth time, it’s probably nice for them too not having to deal with it.
And that kind of blows.
It hit me with a renewed vigour that epilepsy is something that, while not always seen, heard, or felt by others, is a constant presence in my life and the lives of people close to me. And that presence is not easy to live with.
I’m tired of having to take medication that wears me out without me having to lift a finger, and that my body only just adjust to as my alarm sounds for my next dose.
I’m tired of having people ask me if what I’m taking is safe for my baby- like it’s not something I’ve thought and agonised over for the 4 years it took us to conceive, and the 8 months I’ve grown and protected the tiny human with his feet in my ribs as I type.
I’m tired of having to explain to people what kind of seizures I have and hoping I’m not scaring them; trying to comfort them before anything has even happened, and reassure them that everything will be ok.
I”m tired of that feeling when I can’t remember if I’ve taken my medication- that stomach churning mix of anxiety and guilt, like if I have a seizure now it’ll be all my fault.
I’m tired of feeling tired!
I’m so tired of epilepsy.
And I bet you are too. Whether you’re going through it yourself, or you’re watching someone you love go through it, I bet you know the feeling.
But even on the downest of days,
We’ve got this!