The Never-Ending War Between Pain and Fatigue
Last updated: June 2022
Lately my days have been spent glued to my bed, barely feeling human. I haven’t been able to write, work on my art, or do anything really aside from zone out and stare at the wrinkles on my duvet cover. Who’s to blame? Pain and fatigue. The last few months they’ve been at war with one another, and it seems there is no end in sight.
My pain keeps me up at night
As many people with AS or chronic pain can relate to, I absolutely dread bedtime. My pain is a night owl. I know that the moment I get cozied up under my blanket and close my eyes, I’ll hear a small whisper in my ear saying, “Wakey wakey.” Painsomnia has arrived.
It’s gotten far too comfortable being around me, as well. It’s adapted to all of my coping strategies, and has created its own routine. For the last month or two now I’ve been up anywhere between 2-3 hours, usually falling asleep anywhere between 1-3AM on a good night. It doesn’t matter how exhausted I am, it keeps me up until eventually, I crash.
My fatigue makes my days feel useless
On one hand, I already struggle with chronic fatigue due to a secondary illness. On the other, here I am struggling even more due to my pain keeping me up all night. I sleep until about 11AM, noon on harder days. Half of my day is already gone. Then when I wake up, it feels like I had gotten absolutely no sleep and my insides feel absolutely rotten. I’m left feeling like a zombie. Most days I just lay in bed, eyes half open, feeling like I’m about to pass out. But I never do. Days pass, and nothing ever gets done. It’s like I don’t even inhabit my own body anymore.
I’m too fatigued to move, but I’m too sore to get comfortable
My fatigue keeps me glued to my bed but my pain is constantly keeping me from having any sort of comfort. I’m stuck having to choose between which way I feel like suffering: do I stay in bed and cry over how annoyingly uncomfortable I am, or do I get up and stay busy but struggle to find my breath or make my secondary issues worse? I can never win. The war between these two are causing me so much grief. I can never catch a break, and no matter how hard I try to cope, they never seem to let up.
Listening to my body despite the mixed signals
All I can really do for now is take it minute by minute, and listen to my body the best way that I can despite all of the mixed signals it’s sending me. I’m rolling with the punches until eventually, something changes. Because I know at some point things will get better. But for now, you can find me trying to catch up on my sleep or watching Twitch from the comfort of my bed.
Have you ever had to take a leave of absence from work due to your symptoms?
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