Like a king desperately plotting his last few moves before he is overtaken, I plot my path around our kitchen. Using each movement to complete as many of my tasks as possible. When exhaustion was an uncomplicated feeling years ago, life was so blessedly simple. Even if I had pain back then, at least I was able to move without feeling my exhaustion blackout creep closer and closer.
Each move brings the shadowy figure closer to swallowing me whole. With exhaustion, moments are so precious and easy to-dos are a prayer answered. I wake voracious from fighting constant pain and tired muscles. My stomach growls so loudly it startles my sleeping dog beside my bed. She searches for the growling beast, not realizing it lives inside me, constantly devouring. I chuckle and give her a few scratches until my hand gives out from fatigue one minute in.
Before I would easily get up to turn off my fan or pop into the kitchen for a quick bite to eat. I would nap but only the usual nap times. Three hours was rare and my now constant five hour naps were bedtime hours. Pain takes over and keeps me from moving even the slightest bit. Comfort is only in the barest of terms as I toss and turn in vain to find a good position.
The time for my medication passes as I don’t want to move, knowing even more pain would come. Sleep easily overtakes me again and again until I lose all sense of time despite having three clocks and a calendar right by my bed. An average person’s waking hours being a week, when all my four hours of being awake a day makes your week just one day to me. Time flies when you have to sleep so ridiculously much. Pain medicine just there on my nightstand but no matter how much I wish to be able to reach out and get it, with my water bottle right next to it, my pain and dead-like sleepiness won’t allow it. It is as if chains keep me tightly held in my bed. So much suffering but too much to reach out causing even more pain, just to get a silly bottle of pills that may but probably won’t even effect me. I radiate exhaustion. Fatigue is tattooed on my soul. My voice refuses to come and when it finally does it has the raspy sound of disuse. Don’t mind the hair as my curly locks splay haphazardly across my decorated pillowcase.
Turning over brings to mind when I had to run four miles for the first time in a fitness class many years and lifetimes ago. My mind is like sludge, clouds block my thinking and make it embarrassingly hard to remember things that just happened, let alone necessary knowledge. Notes of every kind are on the surfaces in my room and bathroom. Multiple notes by my bag to remind me what tasks I need to do when I finally venture out with my dad at the wheel.
A deep longing fills my soul to be able to just drive around the block or get dressed in seconds like I use to. Instead I lumber and bumble as I try to lift my shirt over my head, leaning against a wall to put on clean underwear and shorts. No shower again as my energy won’t last to complete the necessary actions. Recovery from a shower took me a week last time I tried. I shudder to think how long it would be now while I use body wipes to keep fresh. Thank goodness my family washes my hair for me in our kitchen sink and even more thanks to my natural curls that make it easy and useless to try to look composed. I chuckle and say, “God was thinking ahead with that one.”
I miss being able to do makeup more than I would have thought. I haven’t done makeup in years and even then I never used much. People say I don’t need it and I hope they are right! Some concealer to cover my ever-worsening dark circles under my eyes from not sleeping, an easy dash of eyeliner on the top of my eyelid with some heavy mascara to cover my blonde eyelashes. Now even a bit of concealer is too much work, my little bit of mascara would quickly disappear as sobbing tears from the pain disintegrate the mixture. Unsteady hands that can’t grip the pen make eyeliner so far from impossible I have throw away all of them in a fit of despair tinged with anger and sadness.
Existing is so much work, doing more than that is bone deep fatigue. My family has given up on seeing me even during meal times because of how long my blackout naps take. I fight so hard to open my eyes and raise up my body with as much momentum as I can muster. Working so hard just to get moving so I can see my family at least once before they go to bed from being gone at work all day.
Eating is so hard I calculate if the calories are worth it. The more the calories the more worth it because it will fuel my pain fighting for longer. But then I have to consider how hard it is to eat it.
I can’t do finger food as my fingers don’t work and barely hold a thing for a minute let alone two. Not much time to eat a slice of pizza or a cheeseburger. Forks are good but spoons are best because a scoop picks up much more than a fork stabbed into one thing at a time. And the pain, oh the pain. Wrists, elbows and shoulders were meant for moving, but mine don’t seem to have gotten the memo. Three bites and my hand, wrist, finger and mouth working to chew are throwing in the towel with all the effort. Sometimes sitting at the table and asking everyone how their day is is worth much more than all the trouble eating brings.
It breaks my heart to see my brother’s disappointment when he hears I have to go take another nap. My dad frowns when I can’t stay up a bit longer to watch a show with him like I use to do. My mother, bless her, her eyes fill with tears again when I stumble as I try to walk to my room before my blackout makes me faint out of consciousness.
I used to use ear plugs so I could get the best sleep possible, but now my ears have excruciating ear aches like someone is sticking an electric screwdriver in my ear and going as deep as possible.
Pulling out a TV dinner to eat again because of the simplicity, and my heart aches remembering the old me who would whip up dinners and desserts without a second thought, feeding family and friends and myself when a new recipe came across my lap. Such ease and fun as I learned new things and broadened my cooking skills and then cleaned up with a smile and a song.
But that girl, while still remembered and loved, has turned into a different body and with it new things are learned.
I wish I could tell you what the endgame is, why I am living this insanely different life from all my friends. Excruciating pain, blisters, vomiting, nausea and exhaustion are just some of my daily hurtles to leap. No spouse, no kids, and I still am living with my generous parents as my ability to move gets less and less.
I know we all have our own trials, but usually they are less obvious and something we deal with on our own and not always millisecond by millisecond.
So the next time you hop into your car for a drive, go to take a shower on a whim, cook a meal, or easily pick up your fork to eat dinner, enjoy it and savor every bit, for me.