Update: A version of this post has been published on The Mighty website!
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–feels like winning the FML (fuck my life for those of you who don’t do the acronym thing) gold metal.
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.
Sometimes, I fantasize about suicide in the same way a bored child in math class daydreams about the beach. Just imagining getting some relief, finally. Some “sleep.”
And that makes me cry, too.
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 ten minutes, unable to stop.
I hate that this is what my life has become.
The machine I mentioned in my last post, the transmagnetic stimulator, does seem to have some effect on my pain. The worst part is it doesn’t last. It definitely doesn’t carry me through the night. I’m trying to hold onto hope that the longer I use it the more effective it will be, but it’s difficult after so many previous disappointments.
I see my neurologist on Friday. I’m praying he’ll have some kind of solution for me. If not, there’s a pain specialist I’m seeing next Friday.
Hopefully, I’ll find some relief soon.
As for I/E and my other projects, I’m trying. I’m almost done with one of the major days of I/E, but it’s long and complicated with many different threads to tie together and having difficulty concentrating has delayed my finishing it. I hope I’ll be able to start posting again soon, as I miss having that to look forward to each week.