I have practiced what my therapist and I jokingly call “radical acceptance” diligently for a couple of years now. And I’ll tell you what… it took every ounce of “radical acceptance” type energy I have within me to type that word: Relapse.
Just two months ago, I was excitedly sharing the news that I was tapering off of meds and entering a stage of my life faaaar more free of doctor’s appointments, high medical costs and strange, evolving symptoms of late stage Lyme disease.
But, as fate would have it, my work seems not quite done.
Things happened slowly at first, and perhaps in disguise. You see, on June 5, I’d strained my low back thanks (I thought) to the combination of a minor bike accident one day and a kettlebell class the next morning. No big deal, it’s an injury similar to those I’ve had before. Only, it lasted a LOT longer than it had in the past. I spent a couple weeks flat on my back in spasm trying to enjoy the whole muscle relaxer and pain-killer routine. Once I was able to get upright, I unknowingly turned to a bunk chiropractor illegally claiming to offer physical therapy and, disappointingly, I seemed to prolong my recovery with exercises far outside my range of capacity. Under his care, I left the familiar ache of a strained muscle and moved into ongoing back spasms with painful, cramping sciatica running down my legs.
After 5 weeks of backwards and forward progress that seemed to be getting me more backwards than forwards, I left the bunk chiropractor. By mid July, I had a proper physical medicine doctor, an MRI, a standing desk at work and a physical therapist who really knew what she was doing. My scans had shown a mildly bulged disc at L5/S1 which is an incredibly common “normal human” injury, so I set myself on the right road to recovery and didn’t think anything of it.
A month later, on August 17, I woke up with a spasm much higher up in my back – stretching across both shoulder blades. I immediately blamed it on a Rancid concert I’d attended the night before. Perhaps women in their mid-thirties aren’t cut out for headbanging?? I rolled on my lacrosse ball a few times and trusted it would loosen right back up. And it did, mostly. But two days later, on a longer than usual drive to Bonney Lake, I noticed tingling in my feet while driving. In fact, I discovered after curiously exploring the new symptoms for the rest of the drive, that I could cause myself to feel tingling from the waist down simply by moving my chin toward my chest. I arrived at my brand-new fella’s place rattled and afraid. I had debated the whole way down about how much of this to let him see. Upon arrival, I mentioned it as casually as I could manage, and we shared a look of concern. Figuring it was part of my existing apparent back injury, I made promises to update my current team of doctors. His positive attitude, his cute smile and my excitement about a short bike ride we had planned for the day inspired me to ignore things for the time being. After all, this was my first time on two wheels since the supposed disc injury forced me to drop out of my training for the STP. AND I was riding bikes that day with a boy I liked? Very little could’ve kept me in the realm of fear.
The next day, things were a bit worse; the tingling was almost constant and now only worsened with the chin-to-chest move I’d been playing at since its discovery. Eager to get a move on toward full activity and bike training again, I emailed both doctors who’d been working on my injured disc (my primary care doctor and that brilliant physical medicine specialist); I described the tingling and asking what they wanted me to do next. I was a little surprised when they each separately referred me to a neurologist. After all, wasn’t this SOOO obviously just an extension of the totally normal human spine injury I already had? I chalked it up to them being overly cautious. After all, at the time of their referral, I didn’t have any other symptoms that would cause concern, so I happily continued my days with my vision focused on recovery from these (now multiple, I’m figuring) spine injuries. Of course, I spared a little vision to focus on my budding new romance. 😉
Over the next week and a half, things with the tingling started to get better. The pins and needles were back to appearing only when I folded my neck, thank GOODNESS. But a few other oddities had started to catch my eye. The new ache in my knees were making it hard to do the hip flexor stretches my PT wanted me to do. At least some days; other days my knees were totally fine. Weird. Then the pain in my feet I’d attributed to the drastic increase in standing at work kept happening even while I was on vacation, spending a lot of time at rest. Yet the aching seemed to be getting worse. Hmmm. Then, persistent numbness crept into my toes. Brief periods of cool temperatures and sensory loss started happening around my nose and mouth, as well as occasional, quite painful aches in my ribs that came and left on a schedule all their own.
A quiet, but disturbing little voice deep inside me started gurgling with messages I wasn’t yet open to acknowledge outside a few whispered admissions to very close friends.
Then, over Labor Day weekend, which bookended my 1.5 week vacation from work, the gurgling voice found more ammo for its argument. I didn’t go lightly into doubting my remission, you see, oh no. I had to be knocked right over the head with warning after warning.
Saturday night of the long weekend, I packed everything I needed plus my two doggos into the car for our now sort of familiar trip down to Bonney Lake. We did a bit of dinking around my gentleman’s country homestead, and then the whole group of us retired to sleep for the night. Only, I woke about 3am with pain in my hips and back so fierce I could hardly stand it. I crawled out of bed trying not to disturb my partner or any of the 3 dogs we collectively care for. I lay down on the living room floor with only the rhythmic sound of the ceiling fan and that gurgling voice to keep me company. (The two were in lockstep rhythm together: Relapse? Realpse? Relapse?) About a half hour of stretching later, I felt ready to head back to bed… blaming things still on this (these?) pesky back injuries. I wasn’t as successful at sneaking back into bed, though, and I found my man awake to greet me. He sweetly asked what I’d been up to and I reluctantly shared that I was in a bit (heh) of pain and had gotten up to stretch. He comforted me by wrapping his big, safe arms all around me and for a moment every simmering fear quieted. Until my muscles started jerking. Violently.
Myoclonic seizures are brief, shock-like jerks of a muscle or a group of muscles. Healthy people will recognize myoclonus in the form of hiccups or a sudden jerk that may wake them up as they’re just falling asleep. But for me, these muscle jerks continue one after the other in different parts of my body for a comparatively long period of time. On this evening, they lasted for well over an hour. It was my first set of these since I was VERY sick with Lyme disease in 2015.
My partner kindly and patiently suggested every possible “normal healthy human” reason he could think of for the night’s unfolding. Maybe I was dehydrated. Maybe I was stressed. Maybe we’d done a little more activity lately than my still healing disc injury (injuries?) were ready for. I wrapped my fingers in his long hair and, listening to his soothing justifications, nodded myself right back to sleep.
But there was no arguing, the voice was louder now: Relapse, relapse, relapse.
The next morning, we slept in FAR longer than I normally would have. We woke up with a couple cups of black coffee. And, skipping any form of breakfast, we packed our bags for the beach. (Regular migraineurs will recognize my rookie mistakes here.) Just as we began to pack the car with blankets, towels and extra water, my central vision was lost in both eyes, replaced with dancing, shimmering zigzags. I slowly closed one eye, and then the other, peering around my man’s beautiful property assessing the new events. I smiled at him. “We might have to delay our departure a bit, babe,” the zig zags engulfed most my sight now and the shapes of his face danced before me, “I am not able to see right now.” Having had migraines regularly from the time I was 10 until 17, and again the whole time I was sick with Lyme, I explained to him that I’d be ok in about half an hour. He walked me into the house and laid me down under my familiar ceiling fan and prepared me a cold glass of electrolyte water. (His “you might be dehydrated” theory continued, it seemed; I admired his positive attitude).
Sure enough, within half an hour, my vision returned. The bright, shining zig zags were replaced with a mild but domineering ache in the front of my head. Determined not to let my poor stretch of health ruin our fun plans, we headed off to the beach.
The cold glacier water on the hot summer day was nothing short of refreshing. After a few hours splashing around in the lake, laughing and telling jokes, my muscles were more relaxed, soothed and loose than they had been in weeks. The rest of the day passed without incident and the next morning, I drove home alone to my place in the city with mussed hair, dirty feet and a full, happy heart.
Then I took a nap.
I had trouble waking. And in moments of brief consciousness, I wondered things like, “Where am I?” “What day is it?” “What’s been happening recently and where am I in the timeline of events?” For healthy folks, this might happen momentarily following deep sleep. For me, even after fully waking, this delirium lasted close to an hour and a half. I tried really hard not to panic, recognizing logistically that this was my home, and that I had a list of chores to do. I texted a good friend who had helped me through these moments years ago. He understood my swiftly rising anxiety and reassured me that everything was real, sharing details of the weekend and my recent trip down the coast. He told me he was there for me no matter what. I listened and I sobbed a little while I chopped vegetables. I’d recalled that doing visceral tasks like cooking always helped bring me back around in years before.
By this time, thanks to the resurgence of derealization (the scariest symptom I’ve ever experienced), the voice in my head had raised in volume so drastically it sounded like shouting: RELAPSE. RELAPSE. RELAPSE.
That night I told my close girlfriend and fellow Lymie, for the first time with certainty, “I’m relapsing”.
“What are you going to do?” she asked.
And I told her without enthusiasm, excitement or curiosity, just matter of factly, “I have a plan.”
And a plan I do have. After all, I wouldn’t be Karla Sue Margeson if I weren’t steadfast, pragmatic and capable of surviving just about anything. This is what I do, right? Grin and bear it? Figure it out? Save the day?
First, I’m going to follow through with the recommendation to see a neurologist, and we’re going to get an MRI of the rest of my central nervous system. I will listen, I’m sure, as he ignores my positive Lyme tests and tells me I have MS. New lesions on my spine and or brain will confirm, to me at least, that the neurological Lyme disease has reactivated. Then, I’ll have to figure out why. First, I’ll do that new DNA Connections test to see if I missed a co-infection during my first years of treating. Then I’ll mold test the new buildings I’ve been hanging out in and see if maybe I got some more toxic mold exposure suppressing my immune system. And finally, I’ll look into primary immune deficiency – something like Common Variable Immune Deficiency – caused by genetics that may be keeping me from fighting latent infections off. Something in there will explain why I haven’t stayed well more than a few weeks while tapering off antibiotics.
I have lists of doctors to see, of tests to ask for, of things to spend money on and appointments to keep.
I can’t help but recollect with a little sadness the first time I went through this, how excited I was for each stage of pursuit. How sure I was of my ability to get well. How much I anticipated each piece of the puzzle coming together. Fully engulfed, I ran from doctor’s appointment to doctor’s appointment, I scoured the internet for articles, I poured over scientific studies and I begged to meet with anyone who had a theory about what went wrong or how I might go about correcting it. I altered my diet, I prioritized my sleep, I spent evening after evening in my detox bath. My ONLY pursuit in life was wellness.
How different that was from what I feel now. I am tired beyond measure. I am reserved in hope. I am reluctant to move forward. I am beaten down. I don’t want to give up the little bit of sugar I’ve been enjoying. I don’t want to spend every dollar I have on medical bills and supplements. I don’t want to spend my nights in the bath. I’ve been doing that for YEARS. I’ve been giving up fun and indulgent things for YEARS. And I don’t want to do it anymore. I just want to ride my bike, and hike, and swim, and camp, and get through my days at work… I just want to fall in love and visit with friends and talk about normal things when my big sister calls to ask me what I’m up to. I just want to live a NORMAL life.
For the first time, I am tempted to ignore symptoms. To ignore my own logic. To even accept the rationale of doctors who would tell me I “just have MS, and fibromyalgia, and CFS, and thyroid disorder…and and and”
It would seem I am lacking my usual fight. And instead, I have adopted a slow, significantly strained but still practical path. I know what steps I need to take. I even know exactly how to take them. I just have to muster the courage, the energy, the thousands and thousands of dollars, and the time carved out of the rest of my life and just do it.
I will do it.
I will fight for my health again.
I will unlock new pieces of information.
I will put this stupid, ugly, no one asked for it anyway puzzle together.
And hopefully, somewhere along the way, I’ll find new reserves of hope and strength.
My motto, for now, is simple: One step at a time.