Please Help Me!

Sarah

..ouch!   sadly an all too familiar tale.. i live alone so can't speak of the dynamics of your home relationship but it has to be said epilepsy sure is a perfect hook to hang any number of troubles on!  i know i can be a li'l stinker but it also takes some effort and understanding from people around.. particularly those closest to you.. if you're going to get through it without wanting to bang your head on the floor with the frustration of it. ..it's painfully clear that 'by your side' support is precisely what you're missing.   the 'epilepsy playground' is a lonely enough place as it is without having to go through it solo.    my heart goes out to you - to both of you.. 

as to what you might do?  i can only offer a few thoughts that she may consider useful.  given that neuro are never there when seizures drop by to give me a kicking, they're always asking for "witnewss statements" from friends, relatives.. anyone who can help by describing what they see - from the seizures themselves to all the mood, frustration, confusion, indecision - probably even a measure of 'being coshed' by meds - stuff.

might you be able to persuade her to take on the role of your 'diarist'?  she could perhaps then also get her own frustrations and no doubt very real difficulties out into the open where you can both pick over them.. easier to talk over when things are written rather than in the heat of the moment.   that too could likely assist your neuro fella (or lass) - your wife's difficulties could give much needed colour to it all rather than you simply presenting the very "black and white" seizure diary, if you do one of those.

and might she even go along with you to your next meeting with your neuro consultant?  it's not a case of needing the hospital to say yes ..in fact, they encourage it.  as i said, they need all the background they can get.  if you could brief them ahead on your difficult 'side issues' they would, i'm sure address that with both of you too.

ok.. nearly there - have you heard about the 'adult epilepsy nursing service' ..never used it; may not even still be there or may just be a local thing but they struck me as both useful and normal.. can't say that for some of the medical bods i see! ..haha   check them out.  plus try epilepsy specific support groups online or locally.   jasons, whatever else be assured that others have walked what seems at times the same hopeless path you're stuck on ..turn your head away from finishing yourself as a lost cause, cos you so ain't!   sure it must seem a long way up and out of the hole you're in but you can do things to try ease the climb.. please, if you can. any thoughts like that should be left many miles away.  in the meantime there's much to be getting on with.

last, last, last thought.. how about selecting a few choice threads, posts, discussions, whatever ..here for certain, youtube, online?  make them easy on the head for your wife to absorb - it doesn't need to be 'heavy' - and see if you can sit down together and go through some of them.

for now i'll wish you well and keep an eye on your page.  good luck jasons.