When I'm Online at 2 A.M. Looking for Other Spoonies With Painsomnia

I get a cup of herbal tea and glance at the clock. 2:33 a.m., it says. I’m getting great at mental arithmetic, and quickly figure out with dismay, I have only five hours and 27 minutes to be at work. Tonight is a good night for some of my knee joints though, and I’m able to flex them enough to sit comfortably on the recliner, reach for my laptop, and find my favorite rheumatoid arthritis forum to chat for a bit. I type, “Painsomnia in Texas! Ugh!!!” and… post.

I get up again to add milk to my tea, and while sticking it back in the microwave, I hear from my laptop one beep. Two beeps. Three beeps. I walk over and find three replies.

“Painsomnia in Minnesota,” one of them says.

“That was me last night in the U.K!” the other one reads.

“Painsomnia on a cold Minnesota night here. We should play a game to keep us entertained!” the other one suggests.

As I hear more beeps indicating more replies, it suddenly hits me how all one has to say is the word “painsomnia,” and the spoonie community instantly knows what that means. Yes, our community even has its own lingo that is inherently and physically understandable only to us. Tonight, it seems the word “painsomnia” was the responsible one to bring together this diverse group of people across the globe, all understanding what that word represents to us. And I don’t meant just the meaning. It’s easy to infer that painsomnia is only the amalgamation of two very common terms – pain and insomnia. To us spoonies though, it becomes one of the most common symptoms we wish we wouldn’t share, and has implications past what the word represents.

You see, we are stuck in this limbo of “too fatigued,” yet “in too much pain to sleep.” It is a Dante-inspired kind of hellish limbo that we experience night after night for long stretches at a time. It is the time when after a long day of struggling to stay awake, to pretend to function just enough to not lose our jobs, or hide the pain behind a proud smile to show our kids we are more happy than in pain to be at their Tae-Kwon-Do class, the house goes silent, to leave us alone with our fatigue and pain to rest… only to find out we are now in too much pain to actually sleep. It’s a type of insomnia that reminds you how quiet and alone you are at nights. Just you and your pain.

Luckily, I’ve been here many times before. I know that no amount of pillows, teas, meditation, or calm music will help with this. Been there, done that. In fact, I know for me it is counterproductive to even try. I end up more exhausted than before, and in my attempts to clear my mind, I allow it to wander into the failures of the day: my hands were too stiff to braid my daughter’s hair this morning… again. I took an extra 20 minutes during lunch to take a quick nap in my car in in the middle of my workday. I fell asleep in front of the computer again. I had to pick up dinner on the way home, because I had no spoons left to make dinner, (although I at least chose a salad as a side dish this time, because… parenting.) And did I even contribute meaningfully to the discussion my husband and I were having, or was the brain fog too evident?

See? Sometimes trying to remedy the problem, we exacerbate it. So, not tonight. Tonight, I know what I must do. I reach out to see if I can find people like me. People who, at the first mention of the word, reach out. Whether they do it to talk, play silly games, or just to let me know they are there with me too… it works. Every single night.

Beep. I read, “Painsomnia in San Antonio here. Let’s play a game: if you had to marry your significant other where you met, where would it be?” I put the tea down, and smile. This night promises to be painful and long, but at least I know it will be fun, and that at least I won’t be “alone.”

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