Lyme Disease in an Autistic Household

 

One July, an angry, quarter-sized rash appeared on my husband’s abdomen. Red as a raspberry, puffy and erythematous, it looked like a smaller cousin to the hives that sent our son to the hospital for a penicillin allergy. Under hot, bright halogen lights, I saw no telltale bite marks. The troubling blotch mystified us.

The next morning the spot doubled in size and fury.  It crept across Egor’s chest, spreading unwholesome shades of red and purple.  I wondered if by midnight he would be craving brains.

Egor lifted his shirt on the third morning with a somber face.  I gasped.  Evil ruby rings engulfed his torso.  Despite the alarming exponential growth, E rejected a doctor visit. His refusal must have been a cultural formality since it took little subsequent argument to send him off.

The doctor confirmed our fears: Lyme disease.

A googling frenzy comparable to the one following my son’s autism diagnosis followed.

While the information on Lyme frightened me, overall the consensus relieved us: Lyme is like a bad flu, take your antibiotics, rest, drink water, and you’ll be fine. Yet, I did not find what I needed to navigate my husband’s illness. As an autistic adult, I needed more than facts–I needed a plan! Plans let me ramp up my executive function. Plans also limit my brain’s natural tendency is to generate innumerable horrific outcomes.

Since plans come from the experience of others, I needed to find a Lyme disease narrative I could trust.

Sorting through the uninformed bickering and alarmist tomfoolery that accompanies online information is a headache. Opportunistic shills cash in with proprietary teas, oils or elixirs. No better are Munchausen-esque blogs with prominent donate buttons and reality show melodramatics. I never found that “just right” article to pave the way.  So, I decided to document our Lyme journey, in case someone needed an idea of what to expect. You don’t even need to be autistic!

What We Learned

Risks

The top two risks are location and the time of year. From the map, you can see that 96% of the disease occurs in the Northeast. The majority of all those infections (68%!) happen in June, July, and August. Egor contracted his illness at Lake George, New York in late June.

Prevention

We still don’t know how my meticulous, shower-hungry husband missed a tick on his stomach. The creature must have been as tiny as the bacteria it carried! Otherwise, Egor did everything right.

He wore clothing as a barrier, sprayed on insect repellent, and did tick checks. Nevertheless, the tick stayed on his body for the 36-48 hours it took to infect him!

We now know the popular deep woods mosquito/tick repellent we used was not a good tick repellant. It contained DEET, but permethrin is far superior repellant. Coat your clothing (not your body!) with permethrin, and you should have better luck than us!

Symptoms and Treatment

Thanks to the publicity given to Lyme disease’s distinctive rash, we quickly spotted Egor’s Lyme and sought prompt care. Nevertheless, panic hit hard because the CDC’s picture of a Lyme rash paled beside the monstrosity plastered across my husband’s torso.

We learned that rashes vary, just as people vary. In fact, only 80% of people develop the classic bull’s eye rash. Despite the gruesomeness of Egor’s rash, his infection was average (according to our doctor and oodles of Google).

If you are at risk and notice a circular spreading rash, see a doctor! The sooner you get antibiotics (doxycycline is often prescribed); the sooner the Lyme bacteria will be killed off.

Antibiotic treatment will last 21-30 days.  A word of warning— the antibiotics that treat Lyme can cause intense sensitivity to the sun. Double check with a doctor or pharmacist. We learned the hard way when Egor became ill after mowing the lawn on a sunny day.

What Lyme (and Post Lyme Disease Syndrome) is Like

Until antibiotics wiped out Egor’s Lyme, he describes his experience:

“Lyme is flattening. Aches and pains like the worst flu I ever had, but for weeks on end. I would sweat and shiver, soaking the sheets. I felt so weak, all I could do was lay in bed. The first week was the most miserable. After the rash faded, I slowly improved. Antibiotics do not give instant relief and (over the counter) painkillers did not help much.”

Without treatment, Lyme can devastate a person. Even with treatment, the infection can leave you experiencing symptoms for months. When Lyme symptoms persist after an antibiotic course, it’s called “Post Lyme Disease Syndrome.” When Egor became ill more than three years ago, post Lyme syndrome was viewed with skepticism. Now, it is widely accepted.

Doctors still debate over the treatment of post Lyme disease syndrome. Some believe more antibiotics should be given, while others maintain that the initial infection disrupts the immune system, causing the body to overreact until it re-achieves homeostasis.

We subscribe to the immune system disruption theory.  Every minor bug crossing our threshold caused mono-like relapses of Lyme symptoms for 3-4 months after Egor’s illness. Nevertheless, within eight months he was back to normal.

Our Experiences

This is a list of our personal observations and advice based on notes I kept for almost a year after Egor came down ill. Of course, I am not a doctor, nor is this medical advice or intended to be taken as such. 🙂  We hope this helps if you or someone you love gets Lyme disease.

Warmest wishes,

Lori

For the Sufferer

Our advice to anyone stricken with Lyme: assume one week of misery. Take time off from work and rest! Nighttime sleep will be fitful and not refreshing so you will be exhausted during the day. Neuralgia is a common symptom and was Egor’s worst. Body aches and joint pain responded better to Tylenol than Motrin, but drinking water was the best medicine. Drink a glass of Gatorade for every two glasses of water to keep your electrolytes balanced. Salty chicken soup helps too!

For the Caretaker

For the caretaker, nourish yourself, especially if you are prone to depression. Build up your support network because you will need to devote extra time to your household while your partner recovers.  I struggled most with schedule changes because I am autistic. Weird, I know, but understanding what will happen and when keeps me functioning and regulated. I prefer all my difficulties to make appointments in advance, thank you very much!

Below is a timeline of our Lyme experience.

Week One

Companion’s Symptoms:
• Bull’s eye rash
• Flu-like symptoms
• Chills and sweating, chills were “intense and worst I ever experienced.”

What We Did:
• Get partner to a doctor. Support daily antibiotic routine.
• Encourage partner to sleep as much as possible.
• If you share a bed with your partner, use separate sheets and have spares handy as they might sweat through a few during the night.
• All that sweating can lead to dehydration. Eight cups of water are needed daily. Pedialyte powder was a godsend. Half of all fluids should contain electrolytes.
• Do not use steroids (hydrocortisone) on rash unless directed by a doctor.
• We found aloe vera juice on the rash to be soothing.
• Sleep, rest, water, heating pad. Pain meds were not helpful, but drinking water, Pedialyte, and Gatorade provided most relief.

Weeks Two and Three

Companion’s Symptoms:
• Rash fades.
• Muscle aches come and go. Worse in evening and morning.
• Joint pain on waking up.

What you can do:
• Help your companion alter their sleep schedule to allow for extra time in the morning to get moving.
• Extra sheets are still helpful.
• Limit caffeine, it is dehydrating and won’t help sustain energy. We found it just caused anxiety with no “boost.”
• Epsom salt baths. This is a good time to spoil your household with bath bombs! Eucalyptus, mint, and citrus gave us the best results.
• Herbal teas helped replace coffee. We chose strong flavors like ginger, red hibiscus, and rosehips to satisfy the stimulating effect of coffee.

Weeks Four Through Six

Companion’s Symptoms:
• All symptoms have eased, but minor illnesses (like a cold) caused an almost full relapse in body aches and fatigue.

What you can do:
• Continue to avoid coffee.
• Electrolyte drinks reduced by 2/3.
• Continue to drink eight 250 mL cups of fluid.
• Yay! We re-introduced green and black tea!

Weeks Seven Through Eleven

Companion’s Symptoms:
• Symptoms in remission, but, again,  minor illnesses caused a moderate relapse in body aches and fatigue.

What you can do:
• No extra electrolytes needed.
• Coffee is back!

Next Four Through Six Months

Companion’s Symptoms:
• Be mindful that minor illnesses will cause body aches and fatigue.

What you can do:
• The flu season right after Lyme was more severe for my hubby—fatigue, aches, pains, chills were intense. We repeated Week One and Two advice. By the following year, he was back to normal. When an episode recurs, up the water and rest.

Closing Thoughts

Each person’s response to illness differs. Lyme is especially perplexing because of the range of symptoms each person can have. I hope our story helped you and encourage you to reach out and share yours. Best of luck to you!

 

A Lesson in Patience

I hunch over the laptop, hyper-focused on a task I must perfect now.

In the next room, my husband, Egor, sprays cleaners furiously. Can he, by scrubbing the carpet, mirrors, and windows, also scrub out worry?

I protest the toxic onslaught, shouting, “Stop! Put on a fan! Open a window! You’re killing me!”

With a sigh I hear two rooms away, he opens a window. Once he realizes it needs cleaning, sprays erupt anew.

Minutes pass. Egor asks a polite question. Frustrated with Windows 10 and our shitty Epson printer, I snap back “I can’t talk right now!”

I curse wireless printing and over-complicated word processing programs as if they were his fault.

As I grumble, E selects this very moment to unleash his Dremel tool in the nearest bathroom. The plan? To rip the grout out of the bathtub in the loudest, untidiest, most bothersome way. The grinding whine of the device feels like a dental drill zipping up and down my spine. “NNNNrrr-nnnnrrrr. Nnnnrrrrrrrr-RRRR-rrrrr.”

I want to yell, scream, shout, “Quieeeeet! I am consolidating months’ worth of thoughts into neat paragraphs for the consumption of others!!!” Instead, I frown deeply and worry my favorite scab.

Why the furor? A school meeting looms. Autism, Tourette’s, and noisy classrooms have collided to make school a miserable experience for our son. We intend to fix it.

The printer dings to life and spits out documents.  I shout to E for a stapler. I shout again. The Dremel tool is LOUD. After five long minutes, he pops his head in the door, “Where are the staplers?” If I were a cartoon, steam would now whistle out my ears. Yet, I calmly reply,  “I dunno. Downstairs, on top of the microwave, in the little catch-all basket.” In a flash, he hands me two mini-staplers and returns to dremeling, which is a good thing, since neither stapler has any staples and my curses definitely need drowning out.

I rummage through his desk for staples and remember that the world’s finest stapler is in the art room—a vintage Swingline in faux wood and black. It never twists or mashes a staple. But I don’t leave for fear the printer will fail if I am not scowling at it.

In minutes, my perfect report is printed, collated, and stapled.   I scurry off to read my missive to Egor.

He shaves as I ramble on, pacing and popping my toes. Suddenly realizing I made a formatting error, I dash off, wailing when we run out of paper after a single copy. Toilet paper soaks up bloody spots on E’s face when I return. I regret intruding on his routine, being wound up, cranky, and self-centered.

Nevertheless, I pick up reading where I left off.

Egor assures me my work is excellent and that one copy can be xeroxed into many at school. He uses the tone reserved for our son’s difficult moments, so  I am annoyed (my agency!) but also delighted with the praise.

The Dremel tool whirs anew and the caulk gun stutters and wheezes. In an hour, the bathtub looks fresh and new.

As we head off to our meeting, the nicks on Egor’s face give him a warrior air. My papers feel like a cudgel.

Though the meeting winds up being more progress than victory, we are satisfied.

As I wind down, I visit our clean-cornered bathroom. Lines of caulk flow like satin ribbons, smooth spotless tiles gleam. Not a trace of paint smears the wall. I recall the crumpled copies of my papers littering our post-meeting table. They seem ephemeral compared to his stalwart paint and tiles.

I reflect.

My husband is patient. He is patient with me, patient with Tyoma, patient with the school. The perfect bathroom and politely delivered stapler stem from a place of focus and purpose.

Patience has been in scant supply with me of late, perhaps because I lost sight of the bigger picture of my life. A picture that is more than one meeting, paper, or doctor’s appointment. A picture of equality for the misunderstood and marginalized.

A thousand crumpled narratives may be written to make the world a better place. Each word is a sword, every sentence, a slice of justice–a reminder of my focus, my purpose.

I vow to add patience to my arsenal of words and writing.

 

“Patience is not simply the ability to wait – it’s how we behave while we’re waiting.”

—Joyce Meyer

 

Eighteen Years of Autistic Marriage

Eighteen Years

Eighteen years ago, I married a Russian national.

Six months later,  alone in our Moscow flat, I sweltered. Outside, smoldering peat fires ringed the city, intensifying the hottest summer in years. Open windows benefitted little when acrid smoke and automotive exhaust coated the apartment with visible grit.

Russian city life shocked me. Apartment complexes switched off hot water for half the year. Washing machines were rare and expensive. In fact, laundromats charged upwards of $20 for a modest load.  Naturally, I became accustomed to cold showers and shampooing clothes in the kitchen sink.

On this hot, lonesome day I decided to clean our sheets in the bathtub.  I visualized my husband’s surprise when he returned from the university to fresh, ironed bedclothes.

Heh.

It was a herculean effort. Linen sheets soak up an improbable amount of water. Each wet sheet weighed as much as a small child. Squeezing out water consumed most of the afternoon.

I reflected as I worked the sheets.  Marriage is one of the greatest choices in life. Even in a foreign country, whose language I did not read or speak, laundry took on a quality of romantic suffering.  Genuine misery could have been a real probability.

We chose marriage within months of meeting. Something seemed profoundly right about togetherness. As a woman with Asperger’s, misreading others is de rigueur. Circumstance blessed me.

I hauled the sheets to the kitchen laundry lines (anything hung outside collected soot from cars passing below).

Despite my best efforts to wrest out the water, the sheets dribbled lukewarm puddles on to the kitchen table and floor. The puddles required towels that would similarly need to be wrung out and dried. I laughed.

Life is like this: circular, ironic, difficult and blissful. I stood in the steaming summer kitchen joyous. I had the perfect partner to pass through time with.

Married 18 Years!

My husband arrived late that evening and nearly fainted from shock.  It was a man’s duty to wrestle sodden sheets, he emphasised. I overlooked the subtle sexist remark. Those sheets were heavy!  He slept on crinkly bare mattresses without complaint.

Eighteen years later, I am still mind-numbingly  grateful.

Egor is my anchor–prudent, unprejudiced, intelligent and unflappable. His solidness balances the flinging vigor of my moods. I am a zany planet orbiting my husband’s grave and pensive sun.  He is nourished by my chipper, eccentric energy.

The two of us once joked how we did not view each other as people, but rather as special beloved pets.

This makes sense. When a pet lover comes home to a wagging tale or resounding purr, is their heart not instantly filled with the purest, most non-judgmental love?  I want to yodel when I see my hubby in the morning.  If I had a tail, I’d thump glasses off tables.

So, I raise that upturned glass to my special interest of eighteen years.  Happy anniversary, dear Egor!

Seventeen Years

Anniversary 2012

Happy anniversary to my Dobre Moosh (kind husband)

from your

Dobreya Bedonichka (kind but silly noise-making person)

Digital elements by Rosey Posey.

Falsetto

music

Last Wednesday night, the house resounded with falsetto yelps.

Once again, my husband had decided to train his voice.

Dozens of voice training videos on YouTube tantalized him with results. “Try this, Friend! You can sound like Richie Sambora!”

Egor settled on his favorite few. He practiced interminably throughout the holiday vacation.

Thanksgiving day, he practiced the “Mee mee MEE mee mee MEE” voice exercise lampooned on old cartoons.

All day.

Every few minutes we would hear “Mee mee MEE mee mee MEE,” followed by throat clearing and another “Mee mee MEE mee mee MEE.” He took breaks to drink water and eat. The rest of the time he sang.

Concerned, my mother asked me if he was okay. I told her yes, it’s just his thing.

Sunday evening, my husband switched exercises.

WHOOO-ooooo-oooo,” he howled. “What’s that noise!” hollered Tyoma from his bedroom. “WHOOO-ooooo-oooo,” repeated Egor. “What’s that NOISE!” countered Tyoma.

This exchange lasted until my exhausted son fell asleep.

Last night’s exercise was, “EEEEEEE-uuPP.” “Papa! Stop that!” shouted Tyoma. And so on.

The good news is that Egor’s practice sessions signal a long-lasting cheerful mood.

The bad news is that in time he will realize his devoted practice will not give him Bon Jovi’s awesome mixed voice talent. Discouraged, he will abandon his training for another six weeks.

I like my husband’s ee-ups, whoos and mees. I even like my son’s half-hearted irritability over them. The swinging cycle of confidence and dismay flavors our ordinary suburban life.

Every cycle, my husband sings a bit better. Every cycle, the cheer lasts a little longer. One day, it will be all music.