Just one of those days

I had so many seizures yesterday and sunday night, it was almost unreal. Aside from the pain all over my body and the shredded tongue, I would have thought I was dreaming it all. I stayed home from work yesterday, lyed in bed or on the floor, and slept. Its so draining its not even funny.

Think of your worst hangover you ever had. Now multiply that by 10. For those of you that dont drink, take the feeling of the most tired you ever felt and multiply that by 10. Thats what the after effects of a seizure feels like withour exaggerating. sometimes I am so tired I cant even lift my arms or  move my legs. I'm so sore I want to cry. Or I feel like barfing but dont want to because the acid will burn my poor wounded tongue. Its not fun and its not fair.

Some people seem to think that you can just suck it up, get dressed, hop on a bus and go to work. Most days I can. But sometimes I just can't. It really hurts and I am exhausted. Like I ran a marathon full speed in 4 minutes. My muscles quiver with exhaution. I once heard that astronauts' muscles will twitch and quiver for almost a full day after entering orbit because they are tense for so long on the way up. Thats what happens to people with seizures.

Not all seizures make me so tired. I can trooper through complex partials and simple partials no problem. I barely notice myoclonics or absence seizures, so no biggie there. Unless the myoclonic jerks are so frequent I cant write something or even pick up my drinking glass.

Its not something I would go on disability for. I have thought about it when it was really bad, but decided against it because there were plenty of things I could do from a computer desk or even from home. I am not permanently disabled, just selectively disabled. And its my brain that choses the days it wants off. It could be a special event or a holiday, a weekend or a funeral. It doesnt care what I have going on in my life.

So the next time you feel like opening your mouth to someone about missing work, or your birthday or sleeping through Christmas, dont. Because that person could be dealing with a very hard disorder or disease and hasnt told you. Or has told you and your just insensitive.

I  really wish there was a way to make people feel what its like to go through a week in my life with Epilepsy. Just once, and just for a week. I bet most of you couldnt handle my best weeks, let alone my worst

Living In Wonderland

I've taking a liking to blogging lately. It gives me a place where I can vent or get things out in the open that I just feel like sharing to the world. This blog inparticular will be my personal, daily life blog about what its like to go from being a normal young adult, to one that has seizures.




I chose the title of my blog because me having seizures, is alot like Alice falling down the rabbit hole into Wonderland. In fact, the author of Alice in Wonderland had Temporal Lobe Epilepsy (TLE) and used his seizure experiences as parts of the story. Many people think this is all drugs (eating the mushroom and the caterpillar smoking a hooka) but infact it was just ways that he could show people what a seizure looks or feels like. Sometimes you feel larger than everything around you, sometimes smaller. Uncontrollable crying fits, hallucinations, feelings of time skips or even feelings of fear. There are feelings of falling, or sudden dizzyness, as well as tunnel vision, having things feel familiar when they arent (deja vu) or having them feel unfamiliar when they are (jamais vu)




I have experienced all of the above and more. But its hard to talk about these things face to face because of the stigma attached to Epilepsy. Even within the health care community there is stigma that seizures are only caused by stress if you havent had them since childhood. That your crazy and its all in your head. And sadly the diagnosing tools that are used are unreliable, often giving false positives or false negatives. Even neurologists arent completely up to date and are utterly lacking any compassion as to what its like to sudden fall down that rabbit hole and have your life turned upside down.




This blog will be my diary of how things are going. My next post will be starting from square one so you can read the whole story. I am trying to put the peices together so that I can figure out where and why the seizures started. Hopefully it will give me a better insight to make them stop, and will stop my neurologist from blowing me off like I am nuts. I will also post statistics and facts and videos every now and then. Just so that those who read this and follow along are as educated about seizures as possible.




Take care everyone! By the end of this blogging experience I hope to have found my way out of Wonderland. :)