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Writer's pictureSarah

Diaries of the Chronically Confused:

Updated: Sep 13

when your mind and body have different plans

 

Hats off to any and all that can relate to this reflection of the on-again, off-again symptoms of Chronic Lyme Disease, Autoimmune Issues, and everything in between. I hope you find your brightness in each day and know just how loved you are, even at your lowest of lows--whether physical, mental, or emotional.


Lots of love & thanks for reading, friends.

Diary Entry: Chapter One


I wake with the sun streaming through the closed blinds of my bay window. Noticing beams of light piercing the air in all directions with the sharpness of a dagger. Following their trails until they break at sharp angles and morph into shadows pouring down the walls. My gaze shifts focus, zeroing in on the texture of the stuccoed drywall for what feels like the thousandth time this week. Though there is no distinct pattern, each ridge, bump and crack is all too familiar. I begin to stretch my muscles, eager to ease the stiffness throughout my body, knowing by this point that erasing the discomfort entirely just isn’t in the cards.


My legs course through the sheets, lengthening to discover the bliss that only can be achieved by the distinct chill of un-mussed bedsheets. I relish in the sensation, however fleeting, as the warmth of my skin skims across the cotton threads, bringing its heat along with it. And, I wonder for the tenth day in a row if today is the day I can exist beyond the four walls of my lonely bedroom.


I’m patient with myself, as I continue to stretch and bring movement to my swollen joints, puffy face, and aching bones.


But the fire within me still burns brightly—anxiously even. And I desperately await the next day that I’m capable of jumping out of bed at a decent hour. I am acutely aware of how hopelessly I desire to hop back into the body of the hyper-independent woman that I am. Was? Am… at least at heart—I still am.


In attempts to ground my pulsing energy, I redirect my thoughts. Away from the infinite cravings to be a past version of myself. Away from the impractical expectations. And into the present.


I close my eyes to take notice of what I’m feeling within my body. The intention is not to scrutinize, but to simply bring awareness to all that I am in this moment.


Starting at my fingertips, I recognize that each finger is swollen, but certainly able to bend and move.


My arms are sensitive to the touch, but otherwise insignificant in terms of actual issues.


I focus on the beat of my heart, and recognize it’s steady, but oddly slow rhythm.


I take notice of the fact that I can breathe deeply today without it feeling as though a sack of bricks was nonchalantly dropped on my chest, and I am grateful.


Moving my awareness to my stomach and into my lower abdomen, I breathe deeply.


In… 8, 9, 10 seconds. Out 10, 9, 8…


Slowly and gently guiding my breath into my solar plexus, and down to my root chakra. I am all too aware of the ever-present dull ache that has morphed into sharp pangs throughout different regions of my abdomen. Questions begin to build, racing through my mind, wondering when will I find the answers/treatments/medicines/etc. that I need to halt these pesky pains?


Hastily, I bring my attention back to my breath. Not allowing myself to spiral down the rabbit hole of all that is frustrating about health uncertainties this “early” in the morning.


I check my watch. It’s 9:43am. I’m about to chastise myself for waking so late yet again when I realize this is progress. It is the earliest I’ve felt coherent and on-the-verge-of-mobile in more than a week. Yay, me, I think.


Rerouting my thoughts, yet again, I continue to scan my body. Nothing of note in my lower extremities other than the recognition of the usual heaviness in my still horizontal legs. I know that when I eventually get up and walk, it will feel as though I’m trudging through vats of mud.


I don’t even check in with the top of my body, because that is simply how I cope with the ever persistent headaches that have harassed me since the fifth grade.


I do not bother to check my blood pressure, as I have consistently woken with it averaging around or below a 79/50 reading for the last ten days or so. Cautiously, I ease myself to the side of my bed and slowly shift to an upright position, not wanting to cause the surge of dizziness that I inevitably feel upon standing.


My ears begin to ring.


To drown out the incessant high-pitched droning, and knowing I have cancelled plans for the entire month, I say aloud to myself, I literally have all the time in the world. So, I sit unmoving at the edge of my bed until I feel strong enough to steadily shift to a standing position without blacking out.


I am in absolutely no rush, I remind myself… again.


After all, it is exceptionally difficult to form habits around “slowing down” when instinctually your brain has said, “go, go, go!” for thirty years. And, at times, I feel like an absolute broken record as I recite little nudges of encouragement to myself in hopes of rewiring my brain somehow.


There are days when I think my own personality may be my worst enemy in this exceedingly confusing health journey that I am on. Because while all I want is to feel better, my instincts and inclinations towards my passions, my independence and my ideal lifestyle really have not equipped me for the sedentary physical experience of Chronic Lyme Disease—and all that comes with it.


But, the more my body slows and rests, the more my brain hums and whirs—and, oddly enough, both things are out of absolute necessity. I rest in order to ease the suffering I am physically enduring; I think in order to quiet the emotional distress over the sedentary nature of needing to rest. But the thinking leads me down paths of all that I want to do. And the doing… leads me right back to bed. The ever-infuriating cycle of chronic fatigue and disease.


Happy to get out of bed, my feet brush across the carpet of my room and into the hallway, struck by the harshness of the cold tile beneath my toes. My ankles feel rigid with my steps, but I smile anyways. I was able to make it to the kitchen on my own.


I reach into the cabinet and extract my blood pressure medicine, knowing that it won’t truly kick in until my second or third dose for the day—when it finally brings my heart rate and blood pressure up to a “normal” level and I don’t have to worry about passing out at every turn… hopefully.


I twist the cap off of the prescription bottle, but before I can drop a tablet into my palm, I lose my grip on the bottle and it clatters to the floor. At least this time it wasn’t a favorite glass mug, I think to myself. I pick up the few pills, realizing I need to call in another refill, and place them back into the orange plastic bottle.


I check my watch again. Thirteen minutes have passed since I last laid eyes on the little clock on my wrist. But, I muse, it’s still not even 10am.


I smile to myself, in recognition of the progress my body made with just over a week of rest, and I head back to the bedroom, ready to start my day, with the same goal in mind: to rest.

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