That’s about all I know, really.
From January to March, Neimah was working on a play in Baltimore, so for most of two months I was at home solo-parenting the wee Moon Friend. I was tired of course, because it was tiring.
Then Neimah came home, the pandemic hit, and my body just gave up on me.
Tired unlike anything I’ve ever known. Tired like I’m almost drunk, losing my balance and slurring my words. Tired like some invisible hand is reaching down to push me to the floor. Tired a nap or a good night’s sleep can’t even touch. Tired that comes out of nowhere after the littlest things, like showering or a phone call or folding laundry.
Pain. In my joints when I move, in my head at some point every day, stabbing and burning and throbbing in my eye, at my crown, at the base of my neck. In my bones like I’m 10 again and growing too fast. In my muscles like I’ve run for miles, or that some phantom has beaten me all over while I was supposedly sleeping.
Nausea. Lurking after everything I put into my mouth, ready at any time to rear up and swamp me, capsize my consciousness with the overwhelming need to not. throw. up.
And little flutterings of other, smaller wrongs that weave along the edges of The Big Wrongs to add depth and color to the misery: blurry vision. Tinnitus. The fog that settles over my brain and makes it hard to think or formulate my thoughts into words (so sorry if this is incomprehensible). The itching like being stung all over my body after I shower, get too wet, or it’s too humid. Too much light or too much sound making my head feel like a slip n’ slide.
These are the wrongs that are Happening. The causes. What’s actually worse are the effects.
I’m absent from my life. I’m “resting” because it’s a bad day when too many wrongs are hitting me at once and they’re all at full strength, so I’m incapable of anything but laying down. And two floors below me my child is laughing and playing and growing and wanting to read books and wrestle and I am gone. Missing his life.
Neimah is there, though. But with the fun comes the work of feeding and changing and cleaning et al and he has to do it alone. And it’s hard. And it makes him tired too. And because he is tired because of lack of me, there is guilt. So much guilt. A constant feeling of Should. I Should be able to push through this, I Should be better by now, I Should be able to do xyz chore myself.
And also there is Want. I Want to go outside. I Want to take a walk. I Want to ride my bike. I Want to do some yoga or work out.
I Want to go swimming. I Want to hike.
I Want to work on my books and send queries.
I Want to tidy and organize my house. I Want to work on sewing and knitting projects. I Want to cook a fantastic meal. I Want to spend time with friends and do thoughtful things for the people I love.
I Want to take care of my baby. I Want to get him up in the morning and from naps when he’s all snuggly and sweetly drowsy and just wants to sway for awhile. I Want to read him every book he owns five times over. I Want to play with his toys and see each day the new things he’s learned to do with them. I Want to feed him his favorite foods and watch him learn to use a fork and spoon. I Want to dodge his splashes while I wash his little body. I Want to hold him close while I sing to him and gently put him down to sleep.
There are also Musts. Must eat. Must bathroom. Must sleep.
I used to be able to do anything I Wanted, limited only by the hours in the day.
But now, Something’s Wrong.
On a Good Day, I can manage my musts and a little handful of minor Wants… say maybe 5.
On an Middling Day, I handle the Musts and a Want or two, three if I push too hard.
But on a Bad Day even the Musts are a struggle. Did you know you can be too tired to sleep? I do, now.
I’m seeing a doctor; I’m having tests. I’m taking Vitamin D to address deficiency, but it hasn’t helped yet. I’m trying to put a name to this so I can figure out what to do to get back to being myself.
But right now, Something’s Wrong, and there’s as yet no end in sight.
2 Comments
Mommy
Crying—but thankful you’ve put it into words. It helps I think to put it all down into words. Praying without ceasing.
Heather Aldi
Amy Must asked me to take a look at this as it sounds very similar to something I went through. I am not a doctor and cannot pretend to be able to make any kind of diagnosis, but most doctors have not ever even heard of Superior Semicircular Canal Dehiscence. If other tests don’t turn anything up, I recommend looking it up. I did not deal with the same muscle and joint pain, but the dizziness, brain fog, exhaustion, and tinnitus all sound so familiar. Dr. Quinton Gopan at UCLA is the leading expert and if this isn’t close for you, someplace that has an advanced ENT learning and study facility (like Stanford, Johns Hopkins, Mayo Clinic, etc.) would be the next best step if you think this might be what you have. There is also and amazing Facebook group of people who have gone through this who may be able to help. My heart goes out to you in the hopes for finding speedy answers and a swift cure.