There is a name for the bone weary exhaustion I feel most days & I cannot tell you how comforted I am by this knowledge.
It’s called neurofatigue. On the most basic level, I knew what the symptoms were because I feel them almost daily.
- There are a lot of days when I feel like all the energy I have for that day is used up in a couple of hours.
- There are days when I have no idea how I’m going to get through another conversation.
- There are days when I don’t want to get out of bed & it’s not fair that I have to because I’m so so so tired & please just let me sleep a little longer. Please?
- There are days when I need to take a nap before I can have one more conversation with someone.
- Sometimes those days happen all in the same day.
This battery image that is also on the article I linked above is the best explanation I’ve seen. It genuinely does not help that I am working with insomnia right now. But apparently this is normal.
When I get tired, I make more mistakes. I use everything in the world to distract me from what I need to be doing instead of what I want to be doing. It’s also normal to have insomnia at the same time, which doesn’t seem fair to me at all, but. Who am I to say what I can & can’t get through? I never thought Moyamoya could be compared to having a traumatic brain injury, but the more articles I read? Yeah, it is. I’ve had strokes for crying out loud. They weren’t major [thank God], but they’re there. They’re the reason I have scar tissue on my brain. My head has been cut into to repair damage my own body is doing to itself.
I’m trying like hell not to cry while I write this, because I know that on some level, a lot of my family, friends, & coworkers understand that this happens to me. But for those who don’t? It’s incredibly frustrating to deal. I don’t mean to snap at people. I don’t mean to forget things. I don’t mean to be so focused on staying awake that I can’t focus on anything else. I hate not having the energy to go grocery shopping when 15 minutes ago I was gung ho about it. I hate that my kids suffer because sometimes Mommy just can’t. And no in that anthem way of, “I can’t even” that seems to be running the internet & everyone around me lately. I actually, literally, can’t sometimes.
I also can’t tell you how much I just want to be that super mom that everyone thinks I am. The super woman. The super wife. I’m none of those things. Because some days? Staying upright long enough to get the kids into bed so I can crawl into mine takes everything.
Yesterday was an awful day for me, brain wise.
I forgot things & I’m probably being written up at one of my jobs because of a major mess up. It just was not a good day at all.
You know, normally that’s fine. But it isn’t okay when the people around you have no working knowledge of what’s going on & you’re too upset to explain to them that really, this is not your fault. That when your head hurts so badly you’re barely functioning, it’s difficult to remember to look for things that should be there but aren’t.
When I came home & told M what happened, he tried to comfort me. He tried to say that he understands how frustrating it is to not be able to voice what’s wrong, but when I pointed out that actually he has no idea, he agreed.
He has no idea what it’s like to know something is wrong, but not be able to verbalize it. He has no idea the tears this causes, or the frustration with both everyone around me and myself. There are times I want to scream about how this is not my fault, but I can’t. All I wanted to do was sleep & I couldn’t. I was up for a couple of extra hours, pouring over the details of the evening, trying to figure out some way I can point to things not being right when someone asks me about them.
I can’t think of anything. Because those people don’t know me well enough to see when I’m having an off day. My family & the majority of my friends, yes. 95% of my coworkers? Not so much.
I hate Moyamoya.