More On Epilepsy

So here is my second post about Epilepsy. Have you ever been around when someone had a seizure? There are a lot of things people say to do, but don't! Get the right info or you could really hurt someone! 
~ Never put anything in the mouth. No, I won't swallow my tongue, and no I won't bite it off! I will very likely bite my tongue, but not to that point. A person could actually damage teeth or have the tongue shoved back to block the throat if something were put in the mouth.
~ Don't restrain me. Holding a person down can cause torn muscles. When I have a seizure every muscle in my body gets super strength and does what it wants, if someone tries to stop that, those muscles will be damaged, and I will be in more pain than I already appear to be in.
~ The only time you should even touch a person having a seizure is to block them from hitting something they could get hurt on.
~ Everyone is different, but I feel better if someone is speaking to me, just telling me to not fight it and it will be over soon... just so I know someone is there and that I will be ok. I've had thousands of seizures, but it is still something I dread, and I fear being alone when they happen.
~ After a seizure is over, two things you should have for someone- water and a blanket. I don't like water, but after my seizures I am so dehydrated and water tastes amazing! And I am always cold, toss a blanket or jacket over me.
~ Don't force a person to hurry to get up after a seizure. What we just went thru drains us physically more than anything you will ever experience. Many people will sleep for a half hour, I prefer to at least be woken up a few minutes later just to be checked on. But allow me to lay there, and get up in my own time. There is a good chance I have a bump on my head or some other injury, and I need to kind of self assess before jumping up and trying to get back to whatever it was I was doing. Just talk to me, let me gather myself. A lot of times my memory is shot and I don't understand where I am or even what day it is... after a few minutes all that comes back to me.
It is not always mandatory to call 911. Most public places have a policy about it, just for their own liability. But it really is not always necessary. Grab my phone, call one of my ICE contacts.
Even with medication, epilepsy cannot be cured or even controlled as much as we would like. There are over a million people in this country who have uncontrolled seizures. I take my meds, but they don't really help much. I'm sure if I didn't take them my seizures would be much more often and out of control. Currently I take 2 medications- somewhat high dose, I have big seizures that knock me unconscious about once or twice a month, major seizures that I stay awake thru almost weekly, and other various strengths and types of seizures every day- many that are so minor no one around me notices them.
One day I hope to have better control over this disease, getting old and having seizures scares me. But it is something I have dealt with for over 30 years, and I am sure I will deal with for another 30!