Minnesota Prairie Roots

Writing and photography by Audrey Kletscher Helbling

The dance goes on June 23, 2023

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I’ve owned this classical music album since the 1970s. (Minnesota Prairie Roots copyrighted photo June 2023)

IT’S BEFORE 8 AM, and I am twirling across my living room to early 18th century classical music playing on a stereo.

You might call this dancing. But, for me, this is an exercise in balance. For two months now I’ve been in physical therapy to help retrain my brain. That followed a diagnosis of vestibular neuronitis in my right ear and Meniere’s Disease in early April. And now I have the added diagnosis of peripheral sensory neuropathy. And more, possibly post-COVID symptoms, even though I’ve never tested positive for the virus. I had a virus in January and all of my symptoms started in the months thereafter.

I have been working really hard to do whatever I can to help my body adapt to the deficits in my brain that stretch well beyond a loss of balance. Thankfully, I can still write. There are many days when I feel frustrated, impatient, overwhelmed, anxious, exhausted, wondering if I will ever feel better. Able to live the life I once lived.

And so I continue this dance. Four steps across the living room floor, turn a 360, four more steps, turn, four more steps and turn again. By the third turn, I am feeling dizzy. Then it’s back twirling the other direction, pausing at the end of each set to regain my balance. Back and forth several times, the energetic music of Johann Ernst von Sachsen Weimar, Francesco Antonio Rosetti and Johann Wilhelm Hertel propels me across the floor.

IMPROVEMENT & DETERMINATION

There was a time early on in my diagnoses when I couldn’t have listened to this music. All I wanted was quiet, minimal auditory input. I worked in physical therapy to build my tolerance to sound. I still struggle with sound and other sensory issues. But I know I’m better than early on. The fact that I can even sit at a computer and type is proof. Early on that was difficult, if not impossible.

I just now paused to turn off that classical music. It was too much after 45 minutes of listening while exercising and now writing. The right side of my head feels as if it’s been slapped. I recognize that as a symptom that I need, in this moment, to calm.

Dealing with these multiple diagnoses feels as much a mental challenge as a physical one. I suppose anyone experiencing a serious health issue would say the same. I try to remain positive and hopeful, but I recognize that, in all reality, feeling upbeat takes effort.

Just like my physical therapy takes effort and commitment. I’m determined to follow through with the exercises my therapist, Ryan, gives me during our weekly sessions. I look forward to therapy because I feel so encouraged and empowered, like there’s something I can do to help myself get better and that I have the strong support of a caring and compassionate professional.

FOCUS, EXERCISE, TRY

And so I continue twirling across my living room. In another exercise, I focus my eyes on an X slashed on a Post It note I’ve placed at eye level on the wall. I keep my eyes on that X as I do figure eights around two containers of therapy putty I kept after breaking my left wrist several years ago. Because I also have diplopia, I see two Xes due to my eyes not tracking together.

Another exercise takes me outdoors to Central Park or the campus of the Minnesota State Academy for the Deaf. There I walk along the sidewalk and then on the uneven surface of grass, turning my head from side to side and then up and down. Randy walks near me as my spotter. I invariably veer hard to the left. It’s his job to keep me safe and I am grateful for his loving care and attention.

One of my biggest challenges remains the ability to engage in conversation. Listening and talking for any length of time tax my brain. When my dear aunt phoned the other day from Missouri, I finally had to end the call because my head was hurting so bad. I’m hoping my therapist can give me some exercises that will improve my ability to engage in conversation without experiencing symptoms.

And so I keep trying. I keep dancing, twirling to the early 18th century music of classical composers.

TELL ME: If you’re living with a chronic illness/disease or have dealt with a major health issues, what helped you cope? I’ve found coloring, playing with therapy putty, doing crosswords, lifting hand weights and rocking in the recliner with my eyes closed to be soothing, helpful distractions.

© Copyright 2023 Audrey Kletscher Helbling

 

A health update: I like savory food, but not this tasty June 17, 2023

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Nothing spicy for me last week. Nope. (Minnesota Prairie Roots copyrighted file photo)

AT 7:11 PM TUESDAY I TEXTED this to my oldest daughter: Do not forget you have super sensitive taste buds & lick an envelope flap. Really bad idea.

I was the one who forgot, not her. I was the one with the hypersensitive taste buds. I was the one who grabbed my bottled water and ran to the bathroom to repeatedly rinse the strong taste from my mouth. I was the one with overly-active taste buds, just another of the many sensory overload symptoms I’ve experienced following a virus in early January.

Of all the past and present symptoms—from imbalance; short-lived vertigo (only when prone): ear ringing, popping and pain and feeling of moisture in my ear; sensitivity to light, sound, smell and touch; feelings of ice water coursing through my body; feeling like I’ve been slapped on the face; headaches; and more I’m likely forgetting right now—this taste issue proved particularly challenging. It landed me in the ER one Thursday afternoon recently with swelling of my tongue and lips and a feeling of my throat closing. That’s scary, darned scary.

Oatmeal with brown sugar, not bananas or any other fruit, was one of the few foods I could eat last week. (Minnesota Prairie Roots copyrighted file photo)

WEARY OF OATMEAL

Thereafter, for the next week, I could eat only bland foods and only small amounts. Oatmeal. Graham crackers. A blueberry proved too intense. So did a grape. It tasted awful. In five days, I lost nine pounds. Not a weigh loss program I recommend. Anything I ate caused an allergic reaction, but thankfully not enough for a return ER visit.

I couldn’t brush my teeth because my taste buds couldn’t tolerate even a non-flavored toothpaste. Toothpaste set my mouth afire. Eventually, after contacting my dentist’s office, I tried baking soda. That tasted like someone dumped a load of salt in my mouth.

I feel like I’m reaching reaching for help as seen in this public art sculpture, “Waist Deep,” photographed in Northfield in 2019. (Minnesota Prairie Roots copyrighted file photo)

JUST WANTING TO BE WELL

To say it was a hellish week would be an understatement. I was scared. Frustrated. Anxious. Wanting answers and hope. More than once, Randy heard me state, “I just want to feel better.” He was patient, encouraging, supportive, as he has been through the past six months of multiple building symptoms.

Back at the end of May already, I noticed toothpaste seemed especially minty. I told two of the doctors I was seeing of this occasional taste oddity. That went nowhere and perhaps I did not push the point enough. And then came that Thursday afternoon ER trip and my taste buds run amok.

This art by Faribault eighth grader Mohamed represents how I feel regarding my overstimulated senses. This art was shown at a student art show earlier this year. (Minnesota Prairie Roots copyrighted file photo 2023)

TIME TO CALM THOSE NERVES IN MY BRAIN

It was at my ER follow-up visit with my primary care doctor that I found hope in a physician with deep compassion and care. I could see both in his eyes, hear both in his words. He pledged to try what he could to help me. He prescribed a medication to help calm the overactive nerves in my brain which control the senses. After one dose, I was already feeling relief. My taste buds are back to normal. I can eat without feeling like the food I just put in my mouth is starting a fire. No more throat, tongue or lip swelling. If it continues to work, and I have no reason to think otherwise, then I am grateful.

A THEORY, GUESS OR WHATEVER YOU WANT TO CALL IT

This is all a bit of a guessing game, a try and see what works process. Even my family doctor’s diagnosis of peripheral sensory neuropathy seems a best guess. The sensory part fits for sure. His theory is that the virus I had in January was COVID, even though I self-tested negative twice for the virus. Those home tests, he said, can be inaccurate if the tester doesn’t quite do things right. I am beginning to believe more and more that he’s right, that I am experiencing post-COVID symptoms.

A page from Eric Carle’s book, From Head to Toe. I ought to frame this page and hang it in my office. (Minnesota Prairie Roots copyrighted file photo)

PHYSICAL THERAPY CONTINUES

I continue with vestibular rehab therapy to retrain my brain to compensate for the irreversibly-damaged 8th vestibular nerve in my right ear. That nerve controls balance. My initial diagnoses of vestibular neuritis and Meniere’s Disease (due to hearing loss caused by a virus in 2011) remain.

All of this is a lot. These are diseases that I must learn to live with and manage. I have good days and bad. But I am determined, working hard at therapy, getting out and about to build up my sensory tolerance. A recent attempt to dine out at a restaurant proved overwhelming. But I managed a dental cleaning with a sensory accommodating hygienist. A trip to a big box store nearly proved too much given the music, the people, all the visual stuff. I managed an outdoor concert with an ear plug in my good ear. I struggled to get through a meeting with a financial planner when I had to listen closely and engage in conversation. I am beginning to understand my limits, yet try to push myself just over, to challenge myself without experiencing full-blown symptoms.

These roses are for you, dear blog readers, for your kindness, compassion and support. (Minnesota Prairie Roots copyrighted file photo)

WITH GRATITUDE

Onward I go. I want to pause and thank you, my dear readers, for your ongoing encouragement and support. I’ve needed both, welcomed both, felt so very loved. I am grateful. I told Randy, “I have the best blog readers!” You are. The best.

© Copyright 2023 Audrey Kletscher Helbling

 

While doing my therapy assignment, an uninvited dinner guest shows up June 9, 2023

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Kinda how my brain feels, broken and trying to piece itself back together. (Minnesota Prairie Roots copyrighted file photo)

LIVING WITH CHALLENGING duo health diagnoses like mine of vestibular neuronitis and Meniere’s Disease means my life has altered considerably. Some days are good. Some days are bad. And others are a mix. I can never predict how I may feel on any given day.

But I’m determined to do the best I can to manage what has now become a part of living. My physical therapist, with whom I’ve met eight times already, has been a great support in providing brain re-training exercises and encouragement. My balance is better. My double vision is easing. My tolerance to noise is improving. Certainly not like I was pre all of this, but I’ll take any improvement.

These railroad tracks lead to The Depot Bar & Grill in the distance. (Minnesota Prairie Roots copyrighted file photo)

JUST DOING MY HOMEWORK

My last assignment from Ryan, my vestibular rehab therapist, was to get out into the real world, even dine at a restaurant. I took my homework and ran with it, maybe too far. Saturday morning Randy and I stopped at a garage sale and then went grocery shopping at two stores. By the time we reached the second grocer, which is considerably larger, noisier and busier than the first, I felt my symptoms flaring from the sensory overload. Oh, boy, how would I manage lunch with his sister?

With a bit of time before lunch, I closed my eyes, rested and tried to settle my hardworking brain.

Soon my sister-in-law Cheryl arrived and we were off to The Depot Bar & Grill, housed in an historic depot along the train tracks next to the river. It’s a lovely place with typically good food. I asked to be seated in a quiet area, explaining that I have sensory issues, especially with sound. I thought I could handle it. After all, I’d been training myself at home by listening to white noise city traffic, roaring waterfalls, crashing thunderstorms while moving my hands near my face. Enough practice and I was managing that noise symptom-free.

Dining tables are right next to the train track at The Depot. A train passed during a previous patio meal there. (Minnesota Prairie Roots copyrighted file photo)

A WHOLE LOT OF TOO MUCH FOR MY BRAIN

But practice is not reality. As we settled at our lower level table with only two other dining tables in that section occupied, I thought, “This won’t be too hard.” But then, as more people filled the restaurant and the volume of conversations increased, I felt my head hurting, my eyes hurting, the constant roar of people’s voices making me feel worse and worse. Finally, I conceded that we’d have to move to the patio. It was too much for me. Our waitress was generously accommodating.

She warned us ahead of time that the cottonwood trees along the Straight River were dropping their fluffy white seeds. That they were. As the white fluff swirled and danced and fell upon our table, I felt like we were in a snowstorm. After our food arrived, Cheryl covered her plate with a napkin. I didn’t, nor did Randy. Fluff landed in my water. I still wasn’t feeling well.

I tried to hang in there, taking only small bites of my French dip sandwich, offering the chips (I’m avoiding salt) to my table-mates. I tried to shut out the conversation of the two women dining near us. But their voices, even though not really loud, sounded loud to me. I tried to engage in conversation with Randy and his sister, whom we haven’t seen in a long time. It was a lot for my brain to handle—juggling listening, talking, surrounding noise, visual of swirling white fluff, staff up and down the nearby steps, traffic sounds (thankfully no train).

A dead rattlesnake inside a case at Grizzly Canyon, an antique shop in Sleepy Eye. (Minnesota Prairie Roots copyrighted file photo 2019)

AN UNEXPECTED DISTRACTION

Then in the midst of this feeling awful and trying to get through this meal, I saw a long snake slither from across the railroad tracks, under the wrought iron fence and onto the patio. It slid toward the nearby empty table, under the chairs, briefly lifting its head as if to inspect. I wasn’t scared, just thankful it was not by us. The snake drew significant attention. Had I been feeling better, I would have pulled out my cellphone to take pictures. Others did, before the snake reversed and headed back toward the tracks, back toward the grassy river bank. A guy identified the snake as a gopher snake. I knew this was not a garter snake, as the women next to us said. I would have guessed rattlesnake, which shows how little I know about snakes. I know only that I don’t like snakes.

After that excitement, we continued with our meals, me mostly leaning my head into my hand in an effort to at least stay until the others finished eating. Finally, I said, “We have to leave.” My symptoms had flared out of control. I tried. And, if anything, I came home with an interesting story to tell about the uninvited dinner (technically lunch) guest down by the (former) train station.

FYI: The non-profit Vestibular Disorder Association, is a great resource to learn about vestibular disorders. Click here.

© Copyright 2023 Audrey Kletscher Helbling

 

Vestibular neuronitis: Challenges, info & a trip to China June 2, 2023

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A turtle, rather than a tortoise, used for illustration only. (Minnesota Prairie Roots copyrighted file photo June 2020)

I TOOK A FIELD TRIP TODAY. Not the fun sort like my granddaughter, Isabelle, took Thursday to see a performance of “The Adventures of Tortoise and Hare” at the Ordway in St. Paul. Rather mine was into the outdoors, outside a physical therapy office in Faribault.

Friday marked my seventh vestibular rehab therapy session with Ryan at Courage Kenny. I started weekly therapy in mid April after being diagnosed with vestibular neuronitis and Meniere’s Disease. These are complex diagnoses which affect the vestibular system in my right ear. (Click here to read an earlier blog post that details my many symptoms.) Basically, therapy is retraining my brain to handle the deficiencies I’m now experiencing due to damage to my eighth vestibular nerve. And to think this all started with a viral infection in January.

Back to today. Typically I meet with my physical therapist in a small room where we review my symptoms and progress and I learn, and practice, new exercises. Last week we ventured into a long hallway so I could walk back and forth, moving my head from side to side and then up and down. I didn’t do so well, veering to the left and into the wall. But I practiced at home all week, as I do all exercise homework Ryan assigns, and I felt I was doing better. I am determined to do everything I can to reclaim my life, or at least some version of what life was before these health issues.

A scene at Falls Creek County Park, rural Faribault, used for illustration only. (Minnesota Prairie Roots copyrighted file photo May 2022)

OK, WE’RE TAKING THIS OUTSIDE

Then Ryan announced we were going outside to try this walking and head turning activity on the sidewalk. I started out not so well, again steering left. Being outdoors added sensory input I wasn’t used to experiencing inside a small room. This exposed me to a real world environment. One with chirping birds and traffic and people crossing the parking lot and trees and clouds. Just a whole lot for my brain to try and manage. Once I’d semi-managed the sidewalk, we moved onto the lawn. Another new landscape to take in while I moved my head and attempted to walk a straight line.

That was my field trip. A change-up from a controlled environment. My ability to handle my symptoms has assuredly improved with therapy as Ryan nudges me to push myself more. And I am. I’m out and about some now, trying to do things I once didn’t think twice about doing. Trips to the grocery store, big box stores, a walk in the park, doing photography, simply being among people. It’s not always easy, especially when symptoms flare. Sometimes I fail. I recognize my limits. That includes time on the computer. Too much online time and my head begins to hurt, my vision blurs, I see double. Because of that, I’ve been publishing fewer blog posts.

This is how I feel sometimes. Artwork close-up by Bill Nagel. (Minnesota Prairie Roots copyrighted file photo)

YES, IT REALLY IS IN MY HEAD

Yesterday my dear friend Beth Ann, whom I met when she lived in Iowa but who now lives in North Carolina, blogged about vestibular neuritis/neuronitis. I had no idea she was going to write this and then designate the Vestibular Disorders Association as the beneficiary of her monthly “Comments for a Cause” project. (Please click here to read Beth Ann’s well-written, informative blog post.)

Each month Beth Ann chooses a different group or nonprofit to feature and support with a financial gift. I was humbled by her desire to increase awareness of vestibular issues. And, bonus, she enlightened me about the Vestibular Disorders Association which, at quick glance, will be a valuable resource as I navigate my diagnoses. I feel validated just scrolling through the website, like I want to shout, “This is real! This isn’t just in my head. It really, truly is in my head!”

Merchandise vended by an international singing group that performed in Faribault and used for illustration only. (Minnesota Prairie Roots copyrighted photo July 2014)

GOING TO CHINA WITHOUT GOING TO CHINA

Earlier this week I endured an MRI per my neurologist’s orders to assure nothing else is going on inside my brain besides the already-known. I get results on Wednesday. He’s confident nothing additional will be found and I hope he’s right. While in that machine for an hour trying to manage the blasts of overpowering noise (I’m hypersensitive to sensory input), I remembered Ryan’s advice to “dig deep” to get through the procedure. I think I dug a hole all the way to China.

 Next week I will need to dig deep again to get through another hearing test, followed by an appointment with the ENT given persistent, intermittent ear pain and more. I’m documenting my symptoms (once a reporter, always a reporter). And I’m hoping for answers as I press onward, preferring not to travel internationally again.

© Copyright 2023 Audrey Kletscher Helbling

 

Roadblock inside my brain May 8, 2023

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Just like along US Highway 14 in southern Minnesota, I’m dealing with a closed road in my brain. (Minnesota Prairie Roots copyrighted file photo)

IMAGINE YOU’RE ON THE ROAD, when, unexpectedly, you encounter a Road Closed Ahead sign. Now you must take an alternate route to reach your destination. You follow the detour signs, which lead you along twists and turns of back country roads. You are in a hurry and frustrated. But eventually you are back on your mapped route, arriving much later than planned.

That scenario is familiar. We’ve all experienced such travel detours. But not many have experienced vestibular neuronitis, a health issue I am currently facing. The road closed/detour analogy is the best way I can explain what’s happening inside my brain.

My problematic right ear… (Photo credit: Randy Helbling)

MULTI-LAYERED & COMPLEX

Mine is a complex diagnosis, a neurological condition resulting from an inflammation of the nerve(s) in the inner ear, in my case the right ear. The apparent cause, a viral infection. In 2011, a virus caused me to lose nearly all of the hearing in my right ear during an episode of sudden sensory hearing loss. This most recent virus affected the balance in my right ear. My initial symptom of feeling off-balance followed a really bad cold in early January. (Not COVID; I self-tested negative for that, twice.) I didn’t think too much of the off-kilter feeling, hoping it would pass. It didn’t.

My symptoms progressed: fullness, ringing, clicking and minor pain in my right ear; hyper-sensitivity to sound; double vision; awakening with headaches; feeling like someone slapped me on the right side of the head; unexplained anxiety; rosacea; fatigue; vertigo (only while sitting up from a supine position or rolling onto my right side in bed) and more I’m probably forgetting. I felt like my brain was working really hard to manage auditory and visual input, processing conversations, and balance. I still feel that way.

Kind of how my brain feels right now. Artwork by Bill Nagel, exhibited at the Paradise Center for the Arts earlier this year. (Minnesota Prairie Roots copyrighted file photo March 2023)

BRAIN FATIGUED

Back to that road closed analogy. The nerves/pathways in our brains are all interconnected, one leading to the other. Kind of like the system of roadways we follow to get from Point A to Point B. Now there’s a blocked road inside my head and my brain is struggling. It’s taxing to determine how to make this all work. Vision. Hearing. Maintaining my balance. I’m feeling brain fatigue.

One day I may feel fairly normal, the next, not so much. Or even through the course of the day, how I feel is affected by input into my brain. If I’m out and about, which I mostly am not, I quickly feel overwhelmed. Even by something as simple as a one-on-one conversation.

A tablet of Prednisone, a med which I took for two weeks. (Minnesota Prairie Roots copyrighted file photo)

SYMPTOMS LESSENING

Yet, today I see a lessening of my symptoms. The anti-inflammatory steroid Prednisone, as much as I disliked the insomnia, heart palpitations and anxiety side effects, reduced the nerve inflammation. My symptoms are less severe, but still linger under or at the surface and sometimes flare.

I am in vestibular rehab therapy, working with a skilled, knowledgeable and compassionate physical therapist who is determined to help me retrain my brain, to get me back on the right route. Ryan tells me I’m improving, even if I don’t always see that. I appreciate his encouragement and specialized training in the exact therapy I need. I listen. I ask questions. I do my exercise homework. Already I’ve seen improvements in my balance.

My vision has improved, too, although I still must work hard to focus and not see double. I can now tolerate my computer screen for more than 10 minutes. Headaches are mostly gone as is the feeling of being slapped on the side of my head. And I no longer need to close my eyes during a conversation because I can’t handle simultaneous visual and auditory input. That said, I will occasionally close my eyes when I feel overwhelmed and need to concentrate solely on hearing.

No big road trips for me as I navigate through vestibular neuronitis. (Minnesota Prairie Roots copyrighted file photo)

LIMITATIONS, FRUSTRATION, DISAPPOINTMENT

I have my moments when I feel depressed and frustrated and wish I was “all better.” I don’t know if I will ever be “all better” or whether this is something I will have to learn to live with and manage. There are moments when I feel overwhelmed. This whole vestibular neuronitis is difficult to explain and you can’t see it, so people don’t necessarily get it.

I’m sad because a long-planned trip to Indiana this coming week to attend my son’s graduation from Purdue University with his master’s in computer science will not happen for me. I am disappointed that I can’t be there in person to celebrate, to hug him, to congratulate him on his accomplishment. But I recognize my limits. I can’t handle a long road trip and attending commencement with the masses. It would be too much for my brain. I’m not even attending church yet because I can’t tolerate the organ. I’m not even grocery shopping because of the sensory overload. Mostly, my interaction with others is limited because my brain can’t handle much.

But onward I go, navigating away from the closed road in my brain to alternative routes that will allow me to reclaim my life. Soon. I hope.

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NOTE: By writing this post, I hope to encourage others who are on a similar journey or who are supporting loved ones. I also aim to provide info on this unfamiliar-to most condition.

© Copyright 2023 Audrey Kletscher Helbling

 

The realities of sleep deprivation, my story April 28, 2023

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The last Prednisone pill in my 14-day regimen of 68 pills, 10 mg per tablet. (Minnesota Prairie Roots copyrighted photo April 2023)

I HAVEN’T BEEN THIS EXHAUSTED since last giving birth 29 years ago or since enduring a three-month severe bout of whooping cough in 2005. But the past two weeks, I’ve experienced such a sleep deficit that I feel like a mom with a newborn or a woman with an uncontrollable, body-wracking cough unable to sleep. I feel absolutely, utterly sleep-deprived to the point of wondering how I can function.

The culprit? Medication, specifically the anti-inflammatory steroid Prednisone. For 10 days I took 60 mg daily. Then I tapered down over four more days to 10 mg on the final day, Tuesday. Prednisone has horrible side effects, the primary one being insomnia. I managed several hours of sleep most nights. Do the math and I am basically 70 hours short of sleep over a two-week period. That’s a lot. Enough to mess with my mind, my body, my mental and emotional health.

From the get-go, I hesitated to take this drug prescribed by my ENT doctor. I have been on Prednisone twice previously and understood it would wreak havoc with my body. Besides insomnia, the med also causes restlessness and an irregular heart beat in some people. I am “some people.” But I also understood the need to reduce inflammation, specifically an inflamed vestibular nerve in my right ear that controls balance. I’ve been diagnosed with Meniere’s Disease (related to previous sudden sensory hearing loss in my right ear) and vestibular neuronitis (caused by a virus I had in January). For now, Google my diagnoses; I’ll follow up with a second post next week.

POWERING ON & COPING

After the first few awful days on Prednisone, I messaged my doctor about my struggles. She suggested I taper off earlier if I just couldn’t handle the side effects. Reading between the lines of her telling me insomnia was a common side effect (yes, I know that), I decided to continue on with the med as prescribed. I could, I encouraged myself, power on through this. And, I did. But it wasn’t easy.

When I found myself wide awake after only a few hours of sleep, I exited the bedroom for the living room recliner. (No sense keeping Randy awake with my tossing and turning.) I coped by coloring. I coped by working crossword puzzles in the middle of the night and in the wee hours of the morning. I drank tea. I used a heating pad. Reading proved impossible. Sleep proved impossible. On and on the hours went until daylight began to break and light seeped into the room and the pace of traffic picked up along our busy street.

And so this has been my state of being. Mostly exhausted. All the time. Between dealing with med side effects and symptoms of my diagnoses—especially sensory sensitivity, tinnitus and feeling like someone slapped me on the right side of my head—I often feel overwhelmed. My brain is working overtime to deal with everything. But I am determined to power on. So I write when my vision allows me to do so. I need the distraction, the mental escape, the act of creating which sparks joy within. I do my vestibular rehab therapy exercises designed to retrain my brain. I’m seeing some improvements, pushing myself just to the edge, as my therapist advised. I recognize my limits.

CLARIFICATION & GRATITUDE

I’ve asked my husband to stop telling people I have vertigo, even if he says at least they can understand that. I mostly don’t have vertigo anymore (which, for me, was only when arising or turning in a supine position). My symptoms are much more layered and many.

It’s complicated and a lot and not something most people “get.” I’ve learned a lot in recent weeks. For those who attempt to understand and have reached out to me, I feel grateful. Compassion, care and connecting uplift me as I continue on this journey of retraining my brain, managing, coping. And maybe, just maybe, soon getting eight hours of sleep in a single night. Onward.

© Copyright 2023 Audrey Kletscher Helbling

 

Elusive sleep & a whole lot of other stuff April 14, 2023

Filed under: Uncategorized — Audrey Kletscher Helbling @ 5:00 AM
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Coloring can be calming and therapeutic. (Minnesota Prairie Roots copyrighted file photo)

IT’S ONE IN THE MORNING and I am wide awake. My head hurts. I’m restless, unable to fall back asleep after awakening to use the bathroom. I’ve only slept 2.5 hours. A long night looms. My efforts to settle in and resume sleeping aren’t working. Randy needs his rest so I head to the living room and curl into the recliner.

I’m feeling jittery. I switch on the table lamp, pick up a thick coloring book from the floor, pull out the 64-crayon box of Crayolas. Soon I am rhythmically coloring a cat with an orange crayon that is way too reddish-tinted for a domesticated feline. Maybe a tiger. But at this hour I don’t care. I just want to feel some calm and methodically working crayons across paper helps.

When I finish coloring the cat clutching a bouquet of flowers, I decide it’s time to try sleep again. I pull two fleece throws around me, snuggle in for some shut eye. I intentionally aim to relax my body, quiet my mind. I can’t. I hear a pleated shade in the dining room click against the window frame in the gentle wind of the night. I hear the hum of the refrigerator. Every noise is amplified.

By now, I guess the time to be 3 am. I need my sleep. My head still aches. I am overtired, exhausted. I decide to move to the couch. I clear the space of Randy’s cellphone and extra pillows and yesterday’s newspaper. I hesitate to lie down, apprehensive about the vertigo that comes when I need to get up. As soon as I’m lying down, I notice the curtain is not completely pulled shut, letting in a sliver of light. I ease myself up to avoid dizziness, walk across the dark living room, pull the fabric together. Back to the sofa. The red and blue lights of a passing ambulance pulse through the room. I remain on edge, alert, unable to achieve what I most want and need. Sleep.

Blackbirds cluster in a tree. (Minnesota Prairie Roots copyrighted file photo March 2022)

THEN COMES BIRDSONG

Eventually I fall into a fitful sleep. I awaken well before dawn. Slowly, morning is rising. I hear the first birds tweeting, only a cardinal’s trill distinguishable like a solo in the birdsong. Occasionally, vehicles pass by on our arterial street, an indication that daybreak is upon us. Traffic increases as time passes. Still, I’m hoping for sleep in this morning dark.

But it doesn’t come. The rectangle window in the east-facing front door lets the spotlight of morning into the room. That light follows a direct line to my head. The head that still hurts.

Soon I hear Randy rustling, up and getting ready for work. It’s 6:45 am. Then I slowly ease myself up, conscious of my need to proceed slowly. After only four hours or so of sleep, I am up for the day.

This is kind of how I feel right now. This art was created by then Faribault Middle School 8th grader Mohamed for a student art show at the Paradise Center for the Arts, Faribault, in 2021. (Minnesota Prairie Roots copyrighted file photo March 2021)

DREADED MORNING NECESSITY

In an hour, after breakfast, I will remove the lid from a medication bottle, spill six tablets onto the counter, swallow two at a time with water, the bitter taste lingering on my tongue. These are the cause of my insomnia, my restlessness, my jitters. Prednisone. A steroid designed to calm the immune system and reduce inflammation.

My body needs calming, healing as I deal with feeling off-balance, vertigo, double vision, headaches, ear pain and fullness, tinnitus and more, likely triggered by a virus I had in January, according to my medical team. Viruses and I do not do well. I lost my hearing in my right ear in 2011 during an episode of sudden sensory hearing loss caused by a virus. Thankfully this latest virus is affecting only my deaf ear and not my good ear. Otherwise I would be deaf.

Prednisone and I do not do well together. I took it in 2011 and in 2005 during a 3-month severe case of whooping cough. I am hyper sensitive to the steroid’s side effects of restlessness and insomnia. Yet, I understand that if I want to reduce the inflammation in my body (in my 8th cranial nerve), I need to stick with the 14-day regimen. I want to feel well, to function better, to do the things I love. I hope this med works.

A neurology visit is scheduled in late May, the earliest I could be seen. Physical therapy is planned for my balance issues and vestibular neuronitis. Many times throughout the day I remind myself that I can do this. And when I’m unable to sleep or feel overwhelmed by the restlessness side effects of Prednisone, I will reach for the coloring book, pull out the Crayola box and rhythmically work crayons across paper.

© Copyright 2023 Audrey Kletscher Helbling