Epilepsy Sucks

After over 30 years of having this miserable disease, one would think I would get used to the seizures. But every time I have one of the big ones I get thinking things I really need to just block out of my head! Yes, I hurt and I am exhausted the rest of the day, and these are the things I am used to and put up with. But I start thinking and that just brings me down. I have accepted that I will have this until I die, but will it one day be the cause of my death? As I get older my body can't take it as well as when I was young. One day 20 years from now I could have a seizure that injures me to the point I can't walk or something. Yeah, these are the things that go thru my head. I need to focus on the now, not the future and the what ifs. Now, I can still recover from these, and be fine in less than a day usually. Now, I have the energy and the attitude to perk back up and say this isn't going to destroy my day. I am hopeful that this new doctor will have some fabulous new plan for me once we get all the testing done. A better medication combination? The VNS? I refuse to have any type of brain surgery, I would rather continue having the seizures than go thru that at my age. But I really don't think surgery is even an option for me considering they have never found anything on my brain that is actually causing this.
The changes over the years in my seizures has been an interesting journey, and for the most part I am content with where I am right now, altho seizure free is always an amazing goal! I have had periods of years when I had no seizure activity, I have had periods of time where I couldn't go three days with no seizures. I really don't know what changed in me that created those differences... it would be wonderful to figure it out!
I was very sleepless last night, awake until after 5 am. then woke about 7:30ish going into a seizure, a big one. All I remember is one of my dogs was in my face and my other dog was laying against my back. And when I woke, it was 9:30, I was sore and so very tired, not wanting to get out of bed. I kinda saw this one coming, I get various types of warnings. I had a bloody nose a day and half ago, this seems to always happen before I have these big seizures. It's also that time of the month- which is a huge trigger... when I was younger I could count on one seizure a month. I've been having smaller seizures the past two or three days, kind of like leading up to the big one. I used to say I would rather have one big one than all these small ones, they drain me and scare me, and I still the aches after.
Epilepsy is not a fun disease to have. But I live with it. And I am much more open about it than ever before. I used to hide it from everyone, I didn't want people to think I was a freak. But I learned that if people are aware of my condition, they are more likely to be able to help if the situation ever come up.
If you know someone with epilepsy, I beg  you to educate yourself on what to do and not to do if you see someone having a seizure. It could truly save a life.