On the Nights 'Painsomnia' Steals My Sleep

This morning I sat at the kitchen table and cried.

Alone, while my dogs were napping after their breakfasts and my husband was in the shower getting ready for his day.

Those quiet, yet powerful sobs I’d mastered as a child growing up in a household where any show of emotion would be turned and twisted against me.

About a month ago, I wrote about how sleep was my only escape from the relentless pain. I’ve lost that, too. It’s been a couple weeks since the medicine I used to take to help me sleep through each pain-filled night stopped working. Now, no matter what I do, I wake up multiple times a night, in terrible pain, praying to fall asleep again. I usually do after an hour or two, but it never lasts until I’m again ripped awake.

Being in pain all the time was bad enough. Being sleep deprived and exhausted —which, lucky me, also only makes pain worse.

So sometimes I sit and cry, in pain, exhausted, and wishing for a few uninterrupted hours of sleep.

I can’t even nap anymore. I try. I end up lying there, awake, in pain, and frustrated.

I never had trouble sleeping before in my life.

And when I do sleep, I dream about my pain or things tangentially related to it: going to one doctor or another and getting bad news.

My edges are so frayed from pain and exhaustion, the little functioning I could manage before is all but stolen from me. Even making a telephone call seems like a monumental task. Writing can be impossible because my brain can’t seem to figure out what a word is more than a gesture and “thing,” let alone how to spell it. Yesterday I was trying to text a friend and I nearly gave up because the word “adjective” suddenly seemed like it was written in a foreign script as I could not figure out how to spell it even remotely close enough for the autocorrect to help.

And that makes me cry, too.

I’m known for being an extremely patient, understanding and nice person. But pain and lack of sleep has changed me. Even my mother remarked about how I’ve changed. I yell and snap at people and even my dogs with almost no prompting. I dropped the remote this weekend and lost it — I threw it into the couch and started yelling — all because I thought I’d finally broken it for good. And then, even after my husband determined it was not broken after all, I cried for a good 10 minutes, unable to stop.

I hate that this is what my life has become.

The one thing that helps carry me through even the worst days — besides my amazing and supportive husband — are the people I’ve met through social media who also suffer from chronic illness and pain. I text regularly with one friend in particular, one of the few people who truly “gets” what I’m going through. Even if we can’t do more than chat with each other and swap doctor horror stories, it’s still nice to have someone to “dump on” where I don’t need to explain myself, and she doesn’t need to explain herself to me, either.

We’re both waging the same war.

I know it’s a cliche, but when I say you’re not alone fighting your own invisible chronic illness, battling daily pain that has changed your life, you’re not.

It may feel that way too often, since chronic pain can be isolating. But we’re there. Quietly pinning away on Pinterest in the dead of night, logging hundreds of hours on Netflix, and blogging about our experiences when we can.

Every day I remind myself: It’s OK to cry. Just try not to give up.

Follow this journey on Chie Aleman.