The house is quiet, its dark with streaks of moonlight peeking through the curtains as they move from the wind of my fans. The only other light in my room is the light from my tv screen. The volume is on low with the subtitles on so I can watch without disturbing my little family. It’s just Me, My Thoughts and My Pain.
Practically every single night, I am up alone while my little family sleeps.
While I lay here by myself, I can’t help but contemplate why my life is like this. Alone, again and again I have nothing to do but to lay here. Maybe try to read, maybe try to write, maybe polish my nails, maybe just be on my phone, talk to other Spoonies. It varies. Sometimes I’ll try to clean, play with my cat or gather what I’ll need for the morning. Some nights I can eat a snack given I’m not nauseous and I can walk okay. These things have become my “normal” nightly tasks. These things I try to do, as to not concentrate on my pain. These things still fail me every time because the pain is the very reason I am even up.
I know I am not the only one despite my home being dark and quite though. I know there are so many people living this way. Living in pain so much so that it completely interrupts everything. This is what’s it’s like being chronically ill. You become Naturally Nocturnal. Being chronically ill means sleeping when you can, napping when you can, resting during the day because your body forces you to, while being awake at night because again your body forces you to.
Being “Nocturnal” period, isn’t a good thing from what our doctors, family or society says right? We become targets of judgement if we are seen up all night. We are looked at like “drug users” and/or “crazy”. What kind of sane person chooses to be up all night? It’s not like we are working the night shift, even though some say we’d be perfect for it. Hey guess what, we actually are working though. Our bodies are working around the clock with no employee card to swipe when we’re done and the paycheck from disability could never really amount to how much pain and heartache we are in. That’s another issue though. Our bodies are working harder than the average healthy human. So, in turn we become so physically exhausted that we are forced to sleep or be awake no matter the time frame. Making Us Naturally Nocturnal.
Have you ever been in so much pain that you simply cannot sleep, relax, sit still, think straight...? The Chronically Ill have. We do not live on what society deems as a “Proper Schedule.” We live off our “Natural Schedules.” I will say it again, our Natural Schedules because what our body does is Natural for having to work with chronic illnesses. This is how a body should respond to pain, fatigue and stress.
So to my fellow Spoonies, the Chronically Ill and disAbled, my Naturally Nocturnal Peeps, the ones who are up all night because our bodies just won’t let up and clock the eff out for the day...It’s okay to be on your own “Natural” sleep schedule. We shouldn’t care what others think, even though we do. Our hard working bodies deserves the rest they need to keep us going. Give in, take that nap, rest or be up all night. Be Naturally Nocturnal, Be You, Do You Boo!