I give up. I know my seizures are much milder and more controlled than alot of yours and I'm sorry, but I still have a right to be frustrated. We all do. There is at least part of each day where my arm hurts like it does before a seizure. But then there is no seizure. Unless the pain is an aura and if an aura is a seizure that doesn't show, then I'm having them for extended periods of time each day or most days anyway.
And for the past few months I have only been able to function if I sleep 10 hours a night and have a nap. I work. And am grateful that I can. But I can't really, I just do it anyway. I'm killing myself to do it. I get home from one part time job and eat and sleep. Then I go to the next one and get home around 5:30. I'm in bed by 8:00 again till 6:00. Most people would be fine with my schedule but I don't know how much longer I can handle having no time to do anything I want. I'm getting ready for bed by 7:30. That's only about two hours each night of time to get things done. And that is spent on the computer or doing a puzzle. I need the computer groups I belong to. There are several. I need the support from them.
And I've got to keep this schedule at least for the school year. It's never been like this other winters. I used to be ok on 8 or 8 1/2 hours a sleep. Now I spend all my time sleeping just to function and the last time I didn't get it I came close to throwing the dog across the room where I babysit. I stay conscious during the type of seizure I have and it's only one part of my body that I lose control of. Although I do have other types of seizure, they still seem to want me to watch her. So it's my judgement-I do know that if I started having ones where I fell or lost consciousness I would stop babysitting. As it is I can still keep her safe and that's the important thing.
But I'm sick of never having time to do things because all I want to do is sleep. I have had several neurologists tell me I've taken all the AEDs. There are two I want to ask my next neuro about, namely Gabirtil/Tiagabine. I've read about it in some other groups. I have an appointment with another neuro next Monday. What if he also tells me there aren't any other meds? My last one left me feeling like I was being told 'Sorry, if you have a seizure there's nothing I can prescribe or do-you're on your own'. I wonder if this one will have any ideas. My seizures are ok now, I mean I can live with them. But how do I live with knowing that if they get out of control again, there is nothing that can be done? That's the part that upsets me. The seizures may be mild but I still am stuck living with knowing that, according to some neurologists, I've taken everything and am out of luck if they get out of control.
I'm sick of being tired. I want time! I want to be able to do things that are fun instead of knowing that if I do them instead of sleeping, I won't be able to get up in the morning, and even if I do get up, I spend the day cranky and rebelling against having bed times like a kid. I want energy.
Anyway, I hope you are all doing good.