Part 1: Nobody Down There Will Help You
It's September. I cannot sleep. This sleeplessness looks different from week to week, but every night shares the same common denominator: the apprehension and eventual dread as the day draws to a close and the normal bedtime routines begin, the mute frustration of lying wide awake next to my husband, trying not to move or make a sound, hoping to at least protect his sleep if I cannot have any of my own.
Before long I move out of our bedroom and into the guest room. The walls are a creamy yellow, there's a ceiling fan above the bed that spins languidly through the still warm autumn air. After a few nights it's no longer the guest room, it's my room. Interstitial Cystitis forces me to get up 16-20 times per night, catching splinters of sleep in between. It would be impossible for anyone to share a bed with me and get any sleep. I make halfhearted jokes to Dave that we're already sleeping in separate bedrooms after two months of marriage. He gives a halfhearted laugh in return.
After a few weeks, the IC pain melts away, transformed into a new set of symptoms. Lyme symptoms are migratory, they come and go and blossom at random into something seemingly unrelated, which is part of what makes the disease so difficult to understand. I'm prescribed the highest legal dosage of Ambien, and that combined with the lack of urgency to get up and pee every three minutes means I can sleep for five or six hours straight. I swallow my pill and watch the world of my bedroom start to loosen around the edges and then bubble away. I even start sleeping next to Dave again, although not for long.
Late September I wake up around 2am soaking in sweat. It runs down my face and chest and pools in the slight curve of my lower back. I kick back the blankets, damp and clinging, and feel a cool draft of air wash over me. The next morning I peel back the fitted sheet to let the mattress top dry out. This becomes a nightly occurrence. If I flip around, head by the window instead of at the headboard, I can find a piece of my bed that isn't soaked in sweat. This is how I wake up each morning, reversed.
Night sweats are a side effect of Babesia, a common co-infection present in nearly all Lyme patients. Babesia is a parasite, a protozoan similar to Malaria that requires its own regiment of treatment outside of antibiotics. It's one of twelve currently recognized co-infections that can accompany Lyme. Patients who are unaware of their confections and do not treat them appropriately do not recover.
By Halloween, the sleeping pills bring no more than three hours of sleep. I'm awake again at 2:30 am. If I take another sleeping pill, I get two more hours. The frustration is getting to be unbearable. I make a rule for myself: if it's after 4:30 am, I'm allowed to roll out of bed and begin my day. Whenever I turn over and see that it's 'morning', in my world, I feel immense relief.
And so, like other patients, I begin to view those early morning hours, dark and calm, as the most tolerable and desirable of the day. Feet on the cold floor, I dress and drive across town to Starbucks, often waiting for a few minutes in the driveway as the wipers scrape the first frost from the windshield. Asheville is a notoriously laid back city, most coffee shops aren't even open till 7:30am, but Starbucks, thank goodness, opens at 5am.
I take my coffee back home, climb back into bed with the light on, and enjoy a few relaxing and productive hours of work. Most day I drift back to sleep in the afternoon, waking up an hour or so before David returns from work. I take a shower, hurry to change my clothes and busy myself in the kitchen so that when he walks in the door he'll see me like this, functioning, purposeful.
Another puzzle: regardless of whether or not I've slept all afternoon, I always come to life between 8 and 10pm, on the dot. I am not just awake but energized, in an absolutely outstanding mood, sliding through the hallway in my socks, rolling around on our bed in a fit of laughter. David's bemused, then annoyed, then asleep.
Still feeling very cheerful, I go to the kitchen, open the computer and try to work, although lately I've been distracted by reading those useless little articles that pop up on Facebook, about how lemon juice will cure cancer, and people who suffer from insomnia are statistically more likely to be to highly creative geniuses, (sources unknown, studies not cited, none of it true.) But alone in the kitchen with the whole dreadful night stretching before me, those little articles and their accompanying photostock images of lavender plants and women in bathrobes, they feel so easy and hopeful. Maybe I'm just a highly creative genius. I knew it.
Except for what's happening to me feels different than an everyday bout with insomnia, a condition that's run through everyone in my immediate family multiple times over. This is, as one Lyme literate psychiatrist, Dr. Robert C. Bransfield, describes as, "a complete circadian interruption," caused by the damage done by spirochete to the neurons in the brainstem, which control your sleep-wake cycle. "When you lose some of those neurons.....this can create a vicious cycle of neurodegeneration."
A vicious cycle because when you cannot sleep, you cannot heal.
A disturbance in sleep patterns is often the first presentation of chronic Lyme disease. In one study, 100% of Lyme patience suffered from sleep disorders.
So I continue to sleep in strange, sporadic bursts, my daily routines shifting and resettling, breaking away from those of my husband and the people around me and beginning to floating away like a piece of ice in a stream. I continue to lose sleep, and I get worse.
******Thank you for following my story of fighting chronic neurological Lyme Disease. Follow me on Instagram: @thewildercoast and @from_lyme_to_emerald. Feel free to share this story to help promote the understanding and acceptance of chronic lyme disease.