One Breath at a Time

There are many days when taking one breath at a time is the only way I get through.

I tell myself more often than I’d like to admit: one breath, one second, one minute, one hour at a time. When I am alone – truly alone; no guy or kid in the house, just the cats & me – I sometimes go to dark, dark places. Places where I am certain my children hate me. Places where I am the worst mother, the worst HUMAN, in the entire world. I know deep down that is not the case, but still.

As I said before, I cry more than I should. At least I feel that way. Stupid little things set me off like seeing a boy grab his mom’s hand on the way into the grocery store or a baby smiling at me at work because I’ve waved & given her a big smile. My heart breaks on a daily basis & I know it’s all my doing. You can tell me until you’re blue in the face that I am not at fault for the way I’m feeling, but it never works. So many people have tried. The thing is, when that darkness sets in? Nothing gets through to me. It takes time. It takes breathing & crying & talking to the boys, no matter how much it breaks my heart at that moment.

There are people who have asked me if I’m dealing with depression. Probably. I’ve likely been dealing with it for years. I have this grand idea of getting on a service like Talkspace [because for real, with my schedule the way it is, I am one of those people who literally does not have time for in person therapy] but there’s the issue of paying for it.

When my dad died, M called our doctor’s office. We still use the same PCP & he made a phone call that made me realize the benefit of still being technically married sometimes outweighs the negative. He was honest. I’d been back & forth between the ICU & home for two days. I hadn’t slept. [By the time my dad’s heart beat for the last time, I’d gotten maybe 45 minutes of sleep in about 36 hours.] I made a crack to my mom [I genuinely need to blog about how the universe works in mysterious ways & my mom just happened to be in Delaware the day Dad coded] about whether or not the doctors who came in to ask me if I wanted to autopsy [no] & told me they had to do an official examination so they could pronounce him [I understood that wholeheartedly] could write me a prescription for Xanax or Ambien or anything to help me sleep. That’s where M making a phone call came in. He made the call & went to pick up what our doctor called in & have I mentioned that I’m grateful as hell for him & I’m so glad we’re still friends despite all of the things we’re dealing with? If I haven’t, take this as my notice. I still adore that man & I am desperately sorry our marriage failed, but he’s the father of my kids & one of the best friends I’ve ever had in my life & I’m glad we seem to be keeping that friendship. All of that being said, the doctor called in a prescription for Xanax. I’d only ever taken it once when I had an MRI so this time I only ever took half a pill. I needed to sleep.

I don’t think I’m a Xanax person. I’d rather be unmedicated if possible. I also know I need to schedule a physical & talk with the doctor who is taking over my PCP’s patients [he is retiring]. I’d like to remain off of medication because there are so many complications with the Moyamoya. However, M has seen the new doctor & she knows what Moyamoya is, so that is immeasurably helpful. I’m so tired of explaining it to people. It’s medical condition & you’re a medical professional, either read my chart or figure it out. Please.

I am working through this in the best way I currently know how. I got a gym membership & I am set on using it. Not only because I feel that it helps me, but also because I’m in a wedding in September & am unhappy with the turn my body has taken in the last year. I’m starting to write again [hi, hello, thanks for reading if you’re doing so!]. I am drinking a lot of wine because that helps, too, & I don’t want to be judged for it, thanks. I’m planning on reading more this year. Self help, true crime, fiction, & nonfiction. Nothing is off limits, so if you have recommendations, please throw them my way in the comments. I had this idea to take my journal & write down one thing I like about myself every day, but that hasn’t happened. Maybe it will in the future. Who knows? My life is chaotic, but I’m learning to own it.


There’s a Name for That

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.