Locked in a cupboard!

Have filled in all the forms, ticked all the boxes, spoken to the right people and done all the appointments. Well at least we think we have!!!.......for now.
'Hard times' is what me and Lee keep saying to each other!

I had 2 mega seizures in one day last week, that has never happened in the history of 'Jane' (2 big one's in one day). My seizures just scare the shit out of me now! Never knowing if it will be a mild or bad seizure. Not feeling safe on my own or with Jamie. Scared to do anything 'just in case'. I haven't just been 'freaked out' by my seizures and become a sad recluse loner type person over night. Its not a case of 'my seizures are bad I don't wanna go out, I'm too scared to do things on my own now'. Its been nearly a year of my seizures gradually getting worse to end up with me being/feeling this way. I've always been a 'just get on with it' type person and over the summer my seizures have slowly worn away at my 'oh fuck it, lets just do it' attitude.

My re-accruing story in short.....
Have a bad seizure, fall & hurt myself.
Scares me, knocks my confidence, don't do my usual stuff and hide away for a while.
After a few days-a week think 'fuck it, be brave' and pick myself up again.
Try to carry on with my usual life/daily routine with Jamie.

Imagine doing that over & over again with your seizures getting worse and more frequent. Each time having to be brave and try and get on with things.
Well my seizures have taken all the 'fuck it, be braves' out of me.
It has also become unsafe for me and Jamie to be out and about on our own as I never know when a bad one is gonna hit me. So even if I had any 'fuck it, be braves' left in me. It's not worth putting me and Jamie at risk.

My seizures have become even more scary now as I choke and don't have any control over my mouth or throat towards the end of a 'bad' seizure. So I don't want to be on my own really.
At the moment my family are trying to pull together to help look out for me and Jamie, but realistically it's only a short term solution.
So after the shit summer of shite and how my seizures are continuing to get worse, me and Lee have decided to look for some kind of proper care/help now. Which is a very hard thing to do for both of us. But it needs facing and doing.
That's all I wanna say about that for now.

Went to see my 2nd opinion consultant today, not impressed!! anyway she's put me on yet another drug to try on my seizures, Zonisamide (drug #8) a fairly new drug. That will take me back up to 4 drugs at the same time again. Will start that one in the next couple of days. Still having crappy side effects as well as seizures everyday. So life is jolly la la.

Me and Lee have had some really tough times over the last few weeks and still are! But at least we have each other to get through it all, even if we are moody fuckers at each other!! It's so emotionally hard and stressful, I couldn't even blog that down if I tried.
Only me and Lee know what it's like to be in this nightmare!
'Jane way' of explaining it: It feels a bit like we have been locked in a cupboard from the outside world and the key is inside the cupboard somewhere but we just kind find the key. We get stressed at each other coz we are in this cupboard and neither of us can find this fucking key. But we still keep trying. No one on the outside of the cupboard can help us find the key, coz its inside the cupboard. But they can still pass us food, drink and encouraging words through the letter box!!!

Not that I've ever been locked in a cupboard with a 6ft+ skin head before!! but you either get the 'Jane way' of explaining things or you just think I've lost the plot and you don't 'get' me!!! I think that most people mainly think 'lost the plot'.......never mind!!