I play a lot of video games at night these days. When I have seizures, there is a time where I sleep from 20 minutes to 12 hours. When this time is over, I am awake. I am awake and super-aware. It is as though my brain is a computer that’s been clocked and my thinking is fast. Really fast. Once I’ve re-booted, of course.
Friday, July 21, I began having a series of episodes. I had five and Sniffles called my new neurologist and she said to give me an extra dose of the seizure medication that day, and from then on I was to take one dose in the morning (normal) and two tablets at night (new dosage). I tried very hard to explain to the neurologist when I saw her I didn’t want to sleep my life away and that I enjoyed having my life.
The dose in the middle of the day helped the left side of my head stop ‘creeping’, which it has done for a good number of weeks now, even before I was first told I was having seizures. It is one of the signs I am getting ready to have a seizure.
The full aura is the creeping feeling on the left side of my head around my ear and my stomach feeling funny. The best way to describe the feeling in my stomach is how you feel when you go over a bump really fast and your stomach ‘drops down’. You know the feeling. We all enjoy it as a kid, and some people love it so much they ride roller coasters for the thrill and that feeling, as has been described to be by a roller coaster aficionado. Sometimes my stomach ‘just feels weird’ in a way I can’t describe accurately as to get the sensation, even vaguely, across to someone else.
Because of the episodes, I am not exactly sleeping the way I should. I can’t. I am wired without drugs. I am not ‘high’ or ‘goofing’ as we used to say when I went to high school. I am just wired. There is too much energy coursing through me and my thoughts are so quick and thoughts so quick I can’t shut my brain off. One of the things lack of sleep does is increase my pain. Yeah, lucky me. So, what do I do when I am in pain and need a distraction? I play video games; I listen to audio books; I read books; I write…. Through all of these coping mechanisms, there isn’t one to encourage sleep. This means I’m tired. The more tired I am, the more likely I am to have an episode plus a significant increase in my pain level. It gets pretty rough.
Last night, however, I slept. I slept in my wheelchair with an ice-pack wrapped in a towel over my eyes, and a light throw over me. I purposefully didn’t turn on the TV or pick up the headphones for an audio book. It took a long time for me to make it to sleep, but when I did, I slept hard and was unaware of anything going on around me, which is really unusual because there always seems to be a part of my brain awake, aware. I believe this comes from growing up in hospitals. But, last night I slept, and I slept until one o’clock this afternoon.
Part of me feels ashamed of sleeping so long. I mean, I missed church. Again. Sleeping to one o’clock in the afternoon has a connotation you’re lazy, and I never want to be perceived as lazy, because I’m not. I guess I just really feel guilty for this, and, until I know what’s going on and how to fix it, I am just going to go with the flow; even if I don’t necessarily like it, or approve.
Father T came by yesterday to see me. His presence was such a comfort to me. As luck would have it, though, I had an episode while he was here. Again, there are feelings of guilt. Of all the people to have a seizure in front of, your spiritual father is not the one I would particularly choose. At the same time, of all the people, other than my family – Sniffles and Cheyenne included – Father T is surely one of the most understanding of all. He gave me a blessing before leaving, and I felt, and still feel, more hopeful than before.
Today I have only had one episode. This one was while I was talking to Sister 2. Luckily Sniffles was in the room at the time and was able to explain to Sister 2 what was going on.
Another good thing about today is Father T and his wife, my Godmother, came by for a visit and brought us supper so no one in the household tonight needs to cook! Isn’t that so sweet and thoughtful?! I think it is.
Packing still needs done. I am not taking apart the X-Box until the last minute. I need its diversion for a few more hours. The book I am taking with me to read is Warbound, by Larry Correia. The Kindle is coming with me. The X-Box and a couple of games. My headset. Phone. Charger for Kindle and phone. My diary. The laptop. I am supposed to show the doctors as much of what I do during the day as possible, and I must prepare for a stay of 1-5 days of hospitalization.
Even though it probably doesn’t need to be said, I will be taking my Bible with me and The Ascetical Homilies of Saint Isaac the Syrian.