It was awful.
It’s been awful.
My seizures have been getting worse lately to the point my mom came and stayed with the kids and I for the last week because I’ve been having them every few days and I’m exhausted. But on Sunday, something new happened.
Normally my seizures have ALWAYS happened in my sleep. Always. Until this past Sunday. When I was so tired mid afternoon that I thought I’d just lay down and have a little rest in my living room chair. I could hear my mom mucking about in my kitchen and the kids were playing outside so I figured I’ll just close my eyes and relax for a bit. Then I was in that state between awake and sleeping and it was like my train of thought was pulled deep into my subconscious and I knew something was not right. I thought to myself I should call my mom for help, but I couldn’t speak. All I could do was know that I needed help.
I was frozen there for about 4-5 minutes before I was finally able to muster up all my energy to call out “mom” which she told me later sounded more like a garbled mumble. Then, she came over to help while all I could do was focus on my breathing.
Now in my day to day life I’m a fairly regular level-headed woman. But during this event, I felt like if I didn’t tell my body to breathe, or focus on each and every breath intentionally, that my brain would stop and I would not draw automatic breath and therefore die. Logical thoughts to us? No, obviously the body will breathe on its own. But that’s what was going through my head right then and there. I had to think ok C, breathe in, then out, over and over. And that was all I could focus on. To the point that I was aware outside of those thoughts that my body was seizing. I could tell my arms were twitching violently and my mom was laying me on the floor. I asked her to make sure the kids didn’t see and she went and locked the door and closed the curtains. I could tell my neck was spasming, and I was making weird noises and I didn’t even care because all I was thinking was breathe in and out or I might die.
It was not at all enjoyable. I felt like I was in a weird state of consciousness between my normal everyday self, and my resting state, yet I could do nothing about it. And that vulnerability was not at all fun. To not have control over your own body yet to still see and here what’s going on outside your body? Terrifying.
The whole episode lasted less then 10 minutes when I started to feel more aware and in control again, however for the next 3-4 hours I still had tremors over my body and little electric shocks run through everywhere. By the time I went to bed, I was feeling just like my normal self again, so I thought everything would be fine.
I was wrong. I had a full blown tonic clonic seizure that night in my sleep. Biting my tongue. Scratched up my face. Wrenching my neck. Everything, the whole nine yards. I’m walking around so stiff and sore today and I don’t remember anything. Just like old times. 😒
I’m just hoping I hear from the hospital soon in regards to surgery because this is getting to be to much.
Although, I did get over the hurdle of telling my boss that this was in the future for me and he just said they would be as supportive as they could. So at least that’s one burden handled.