I so much want to smash, destroy, kill and delete this little container right now. But I can’t…. Even though I am on half of the maximum dosage, and no tinsy winsy bit of change has shown. No improvement what so ever. But maybe, just maybe, it will work on the highest dosage.


Fuck hope!!!

I hate it!


Approximately 280 seizures a day, no sleep until yesterday, and only because of total depletion lasting a whole 10 minutes a time.


I write this feeling like I am completing an obstacle run. Three minutes a seizures, two minutes fairly lucid, putting it nicely, trying to be human in those two minutes. Sometimes I’m being graced with 5 minutes, which feels like forever.


I feel like I have my life back in those five minutes of being lucid. Having a laugh with Ramon, making jokes, steeling a kiss or two, hugging each other tightly to squeeze our tears away, and enjoying a cup of coffee together. I’m trying my best to help him a bit, with me showing a bright and happy me in those five or even two minutes, and maybe even dry Kuzco and Malha their wet paws, when Ramon comes home from walking the dogs in this dreary rainy autumn days we’re having at the moment.

We both are fearing the worst, even though we are not speaking the words out loud. Who knows we’ll jinx it. Because we desperately are clinging on to that fucking feeling of hope, the new meds are going to work their charm.


So I am going to hold on to the end. In for a penny, in for a pound.



One thing is for sure. I couldn’t have made it so far without Ramon, the doggies and my protective gear.


I know very few times, but still a few times, I could have said things nicer. And I regret them immediately, because he is trying his best coping with this, and I know his mind goes way beyond mine at the moment concerning our future, which makes his sad frown pierce deep into his skin, making it looks like the clock has struck twelve.



Even when he smiles, it stays put. And even though my non-Annie-like-pronunciations on some rare occasions, he still makes me coffee,



and prepares my food, when I want something else than medical liquid food,




with love….

A whole lot of Love!