Life With Neurologic Lyme Disease — A Personal Reflection, Part 1

Steps Forward, Systemic Flares, Seizures and Setbacks — A Revolving Door, This Life With Lyme Neuroborreliosis

How quickly one’s circumstances can change — in a week, a day… a moment. Perhaps with hints of warning, or life purely adjusting at will.

Not too long ago, I found myself on the receiving end of an abrupt reminder — that I am not in control. Of anything! While firmly believing personal actions and efforts help to guide direction, [I am] merely an occasional driver. Moreover, a passenger along for the ride — on an undulating and winding “adventure,” an ever-evolving journey of exploration (of basically all the things I would never add to my bucket list!). God’s itinerary is quite different than mine — lol!

Steps Forward

Without completely surrendering to overly-optimistic emotions, late spring (of this year) began to entice with hopeful promise. Yes, nature was blooming, birds were flirting and the sun was shining every so brightly. A different season was also in focus. Healing. Improvements. Steps forward.

Dare I write those words?

Aside from the unpleasantness of challenging (miserable) days and weeks (and really HARD months, years… decades) of on-going treatments, fewer + lower symptoms, along with increased energy began giving way to the illusion of healing. Gradual improvements started melding in with daily life. ‘Sassy’ me boldly appeared, overshadowing the ‘sickly’ version generally ruling the roost. Familiar forward momentum — similar to days long passed, welcomed with open arms, eagerly… yet cautiously.

With such positive happenings, happening, one particular evening the hubs and I chose to promptly carpe diem. Knowing full well the fickleness of such improvements (not my/our first rodeo!), we sprang into action. The “let’s go out with friends” action. Should this body allow for an evening venture outside of these adobe walls, then venture out we shall!

This outing would be my first time public-ing in well over two years. And, no, not due to fear of the rona. ‘Twas the first opportunity (in an excessively absurd amount of time!) that I actually felt well + strong enough to do peopling… in public!

Anyone who knows me and this journey (or perhaps travels their own bumpy illness + healing path) understands all too well — leaving the house (for non-medical purposes) is kind-of a big deal!

Now, the behind-the-scenes reality of making this evening out happen was no small undertaking. Especially for someone who rarely feels well enough to venture far from bed. The showering. The hair drying. The hair curling (to disguise a self-given, hack job haircut — desperate times!). The makeup-ing. The dressing (in non-pajama attire). And… the peopling. Worth the entire day of pacing + mapping out personal care activities (the basic “getting oneself ready” process the healthy me completely took for granted as a given, daily routine). Worth every single pill and potion strategically ingested/ injected that helped to get (and keep) me upright. Worth the next several days of exhaustion, increased symptoms and need for extra, extra rest. Worth any and all efforts. Without a doubt!

So yes, this simple night out with friends — that had been scheduled and cancelled multiple times over the past 2+ years — was absolutely FANTASTIC!

And even though this infamous “big night out’’ was nothing fancy and for no special occasion (per the fictitious greeting card calendar), it most certainly was an incredibly special gathering. At least in my book, and I believe for the hubs and friends who were able to join us that impromptu Sunday evening.

Unable to fully express the overwhelming emotions felt — meshed together within the mere actions of being physically present for an evening together with friends. Rest assured, nothing ‘simple’ nor ‘mere’ about this outing. Stories and laughter exchanged, while simultaneously celebrating a huge victory (for me). Pure joy. Truly indescribable. And, as confirmation genuine enjoyment was achieved, the sides of my face hurt for days afterward. Oh the stories and banter with these peeps!

Might have only been a few hours, one casual gathering with friends, but for this illness-weary warrior, it was indeed a night to be remembered… and cherished. (Thank you, my friends!)

Flares and Seizures and Setbacks, Oh My!

Four short days following the above described occasion — celebrating forward progress, healing-happenings, improvements — reality of living with (and the effects of) late-stage, persistent neurologic Lyme disease quickly snapped to attention.

Sitting at the kitchen counter (having finished a casual lunch with the hubs just minutes prior) turned into paramedics and firemen whisking me away to a local hospital. Side note: modesty takes a backseat when there’s a possibility of a stroke at play. Good thing my give-a-hoot meter was temporarily paralyzed!

Portions of that afternoon seem rather gray and fuzzy, as if I observed from a distance — what I am guessing to be considered an out of body experience. Yet the most frightening (and frustrating) aspects remain quite vivid.

Becoming lightheaded and dizzy with waves of symptoms flooding at once, is nothing new. Have dealt with varying levels of these symptom flares/episodes for decades. I know that no matter where I am, it is a must to assume a stationery, propped-up position. Pronto! This particular dizzy spell — self-described “wonky head” moment — evolved rapidly. Numbness and tingling sensations throughout my limbs, inability to move, exaggerated + slowed speech, blurred vision, difficulty breathing… all decided to join the party. Heightening concern. And quickly!

Goodness gracious (channeling my beloved mother with that phrase), how thankful I was, and still am, the hubs was home! And that he opted not to ignore a vague text I sent him, right before things went swiftly south — “can you come to the tv room. having an issue.” Hubs thought I was having an issue with the tv, and confessed later that he begrudgingly stopped working to come help, with what he assumed to be a tv/user issue. Fair interpretation. (Note to self: be more specific with text messages if experiencing a possible stroke!)

Although in a general haze with my eyes seemingly snapped shut, I remained conscious and aware (I think??). Could understand questions being asked by medical professions, however my mouth and voice appeared unwilling to cooperate. And the involuntary jerking and shaking… was intensely alarming… at least to me and the hubs. Have experienced multiple seizure-like episodes over the past 22+ years. This was far and away the most severe… and most frightful.

Beyond thankful that immediate testing indicated no blood clot to the brain. Whew! Further testing indicated no definitive signs of stroke. Double whew! Results from the litany of tests conducted over the span of two days, were basically, to quote my PCP, “unremarkable.” Which is actually quite offensive! Surely there is something about me that registers as even the slightest bit remarkable?

Anyway. Cut-and-dried conclusion: post-boatload of testing, consensus between the fleet of medical professionals — in person and via telemedicine — [I experienced] a neurologic Lyme seizure with possible TIA.

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Insertion of Tiny Rant:

Was a particularly “adventurous” ride, this neuro-Lyme ’seizure with possible TIA.’ Among the collective hospital stays and emergency room encounters over the years, this one topped as the most memorable. Not in a favorable way.

Worthy of complete attention, more than likely I will write a separate piece specifically dedicated to this 32-hour experience. There is much to share… and to rant.

As the patient — the person who physically suffered a [neurologic Lyme] seizure with a then present, unsettling fear of potential stroke — this hospital experience (like the many, if not all previous experiences) reinforced my lack of faith in medical facilities, as a whole, being prepared to properly care for the needs of late-stage Lyme patients (and/or any patient suffering with complex chronic illness). The crystal clear inability to recognize, understand, diagnose, much less treat Lyme neuroborreliosis is disturbingly appalling!

Hey med institutions, docs, nurses, med techs: helps to know how to pronounce and spell a disease, or at least learn to fake it in a professional manner. Make note: Lyme is spelled L Y M E, not lime, not Lyme’s. Further observation: Not every neurologic symptom stems from or is a bleepidy-bleeping panic attack!

— End of Rant (momentarily).

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Perpetual Revolving Door

As one might imagine, the wonderful healing momentum so thoroughly enjoyed pre-seizure + hospital stint, stalled. Instantaneously. (Trauma tends to have that effect!)

Another setback.

Deep sigh!

But wait…

In the weeks that followed, improvements seemed to slowly reappear. Once again, small steps forward. Another impromptu gathering with friends — low key and delightfully grand! Once again, profoundly welcomed. Once again, cautiously received.

Remember, not my first rodeo! Learned many moons ago (literally) that living with late-stage, neuroborreliosis (neurologic Lyme) equates to living within a persistently relentless, revolving reality. And one just never knows…

Ten days after a re-renewed cycle of forward momentum — with smatterings of upright time, living life quasi out of bed, once again — another round of systemic flares rolled in… along with another unexpected seizure. Another deep sigh! Thankfully this neuro-episode was less severe than what was experienced a month earlier. Grateful my sister was with me, offering comfort and calm while my body involuntarily twitched and jerked — while fear and discomfort ran their course… once again.

Grateful to have the opportunity to restart steps forward (once again), whenever this body allows. In whatever capacity. For however long.

Grateful to still be here! Period.

Neurologic Lyme and this perpetual revolving door…

Goodness Gracious!

Life With Neurologic Lyme — A Personal Reflection, continued… Part Two — The Calm

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