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What It's Like Trying to Get Out of Bed With Multiple Chronic Illnesses

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Pain bursts through my head before I’ve even fully woken up or formed a thought. It blossoms in the back of my head and curls around the sides to rest at my temples and pulse; a dull tattoo across my skull. I wince slightly, careful not to jar myself anymore than I have to for fear of dislocating something. The beat against my eyes feels like fists and bruised eye sockets — I don’t want to open my eyes.

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“Curse you, Chiari…” I mumble while digging my fingers into my temples.

I crack open my eyes and thank God for Steven because he’d covered the windows in blankets and remembered to shut my bedroom door after waking which meant it was nearly pitch black in the room. I heave in a breath and feel my stomach bulge — incisional hernia poking out because I’d spent the last hour on my right side. Luckily my liver wasn’t swollen anymore and shifting my ribs around so I could actually take a full breath.

Cracks break out across my ribs, through my back and across my collarbone from the deepness of my breath. I curse myself for the foolishness as spasms start in my ribs. They’re trying to sublux. I force my muscles to lock in position and hold my ribs in even as they’re fighting against me painfully. Eventually the spasm passes and I can relax into the firm mattress underneath my back. I breath more shallow this time.

“You can do it. Just sit up.” I chant it inside my head a few times trying to build up the courage to sit.

Courage to sit. I roll my eyes under their closed lids and ball my fingers into fists, but that backfires because my ring finger has slipped out of place. It grinds against itself and I clench my teeth in anger, frustrated with my useless body. I remember when courage was more than overcoming the terror of my own body.

“Screw you, EDS.”

I have to force myself not to scream. It would just hurt my torn throat anyway and decimate my head. Chronic illness has completely taken over my life and transformed me into this monster I don’t know. No longer can I urge myself past every physical ailment or emotional disturbance. I can’t even make a fist without dislocations or pain and I certainly can’t do any of things I used to be capable of. A tear slips out of the corner of my eye and burns down my cheek like acid.

Weak. I just feel weak. I reach up to brush the moisture away and my shoulder clicks out painfully; joint slipping. I cringe and stop. I have to use my other hand to physically maneuver it around the joint and back into place before I can complete the motion. I used to be able to take notes for hours and climb jungle gyms with my daughter, yet lifting my arm is nearly impossible now. The thought enrages me enough that I sit up.

When I press my hands into the bed my wrist slips. My shoulder pops back out and pain bursts across my collarbone. My ring finger knocks against itself once more and my head pounds with such intensity I’m not sure if the black I’m seeing is the dark room or spots swimming across my eyes. Pain shoots down my spine and expands across my back like players on a football field fanning over the grass. I shake my head ruefully, frustrated beyond any accurate measurement, more so when parts of my neck pop and crinkle. I used to walk miles uphill with pounds of books and child but sitting is enough to wear me out today.

I sit on the edge of the bed taking stock. Everything that slipped out is back in, painfully throbbing. My head is swimming in fog so thick it might as well be tangible and dripping from my body I’m so encumbered. It’s hard to think. I try to force my brain to focus on anything but thoughts slip through the patches of fog and disappear. A 3.9 GPA English degree but I can’t finish a sentence inside my head without repeating it 20 times and following the thread of words over and over again trying to find the place I got lost. I give up.

“You. Can. Do. It.” You. Can. Do. It. Stand up. Just try standing up? I can manage to try.

I shift my weight to my thighs and the extra pressure pushes my hip out just slightly. I catch it time so I shift to the left and put less weight on it so it slides back in without fully dislocating. I take a deep but not too deep breath and push to my feet before I can overthink it. My knee catches and then hyper-extends until it buckles. I catch myself on the book shelf handily located directly beside my bed and knock my elbow out on impact. I roll my eyes and laugh angrily. Better than crying again right? Definitely better.

Once my knee is stable and my hips are locked into place with extra muscle and thought, I try walking. My head is still swimming and dizzy so I keep holding the bookshelf. My ankle slips out and I stumble, “thank you Jesus for making me hold this shelf,” before righting myself and continuing. It’s like it disappeared for a second and took my foot along with it.

My bladder made walking a necessity or I might have hid in bed all day. That thought sends guilt and shame coursing through every vein and blood vessel in my body. It’s almost painful in it’s intensity. Every waking moment was Lindzy. Every sleeping moment. I went to college. I mommed. I worked. I did everything, all the time, alone. But now I would stay in bed unable to move without pain or consequences, all day; every day. My hip slips again and now that pain mingles with the shame. They cause my throat to burn and tears to prick my eyes.

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Suddenly my stomach clenches. Pain erupts and acid churns up my throat. It bubbles in the back like a jacuzzi and stings the cuts in my throat. It spills into my mouth, shooting from my esophagus. It burns my lips when I try to hold it inside; three steps from the toilet. Cramping in my stomach causes me to double over on step one and my ankle disappears on step two. I sink to my knees and feel them pop out, tendons sliding and joints slipping as I bend too far too quick trying to reach the bowl before acid runs from my mouth. I retch so hard my stomach twists in knots and blood colors the toilet in swirls of red and pink. Tears seep from my eyes and saliva drips from my lips to drop in the water below sending ripples through the galaxy of my stomach acid.

I hear my phone ring in the distance and a laugh sends me into a new nausea spiral. Anxiety coats my skin like mist at the missed call. Prior to getting sick I couldn’t stand to let a call or text go unanswered for more than a second. I was lucky to respond within hours at this point in my life. Tears slip down my cheeks and I stare listlessly at the floor, unable to get up. My knees have locked into place and the puking knocked something in my chest out. Pain and numbness spread through the middle of my chest and into my collarbone. It seeps into my shoulders before finally disappearing. I hate the isolation most. My phone was only a few feet away but I physically could not manage the steps.

I force myself to straighten my legs, relaxing the muscles so they can slip back into place correctly, painfully. It aches and throbs but they finally steady enough to stand as long as I hold myself on the counter. I lean against it and rinse my mouth quickly. Mouthwash, a wet wipe and hand sanitizer. The bare minimum. I glance at the mirror and want to weep again at the sight. My hair is tangled and matted because brushing during a migraine episode is impossible. My skin is splotchy and red. Broken blood vessels color my cheeks like lightening streaking through a Van Gogh night. My eyes are bloodshot and my right jaw is visibly swollen from the frequent dislocations.

I sigh heavily and build my courage to leave the room. I wish I could be the person I used to be, but that’s impossible now. I can’t be that friend, mom or wife that I desire to be anymore. The person I used to be imposes over the image in the mirror; a cruel juxtaposition of past and reality. I want to smash it to pieces if it means avoiding the guilt associated with my deteriorating health, but I swallow the rage even though it scrapes and gets stuck on the way down my throat.

Now my courage has a new face. The monsters inside me desperately trying to hold me back would not win. Tomorrow is a new day, I remind myself. My fingertips curl around the edge of the countertop and the top joints of three fingers slip out. A laugh escapes my lips and I slowly shake my head. “No said life would be easy.”

Getty image via Milkos

Originally published: February 9, 2019
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