Lupus neuropathy on the way to breakfast

Breakfast Feast

We had a wonderful time this morning hosting breakfast for the family clan, and celebrated three birthdays over a brunch feast.  Getting ready for company last night after working all week was a bit of a challenge.  Against better judgment, I ended up staying up after midnight putting the finishing touches on my house.  I really like to make sure guests in my home feel comfortable, and for me that means making sure things are orderly and clean.

Where’s the balance?  I’m really not sure, but I keep trying to find it.  I must admit, last night was not balance!  At midnight I got the fruit tray ready, washing the grapes, strawberries and pineapple chunks,  and set the rinsed bananas out for the morning, leaving just enough room on my fruit platter to pile up some halved bananas.  By the time I was sure everything was “done, it was a couple of hours after midnight. “

Blame the dog?

After I finally found myself in bed in the dark, I realized I had stayed up late enough that peripheral neuropathy leg pain rapidly kicked into full gear.  Although I tried to fall asleep, it just wasn’t happening!

After laying awake the dark, I became annoyed as our little dog at the end of the bed kept sitting on my painful legs, shifting around and making continual noises.  Most nights we let him lay quietly on his blanket on the end of the bed. while we watch some TV and occasionally nibble on popcorn.  He usually attempts to be a good little dog, but is often beside himself with exuberance until we break down and toss him a piece of popcorn.  If he is quiet and we fall asleep, once in a while he gets the prize of sleeping on our bed all night.

However, after his prolonged and irritating antics during my slumber-less night, it wasn’t long before I ushered him swiftly to his kennel and crawled back in bed to try again.  Maybe I could blame the problem on the dog!

Soothing sound of waves

I picked up my Nook Tablet from the bedside table and found its “white noise” application. After sampling several noises of birds, wind and waves, I settled on surf rhythmically crashing into some unknown shore.  It was soothing, and if not for the neuropathy pain, I would have probably slipped away into pleasant slumber, dreaming of  driftwood on the make-believe surf.  In the long darkness, the white noise timer shut down an hour later, but still  I was sleepless and enduring painful surges of persistent neuropathy pain.

Calming sound of rain

Wary that taking strong medication for my pain would make waking up in time for 8:00 a.m. company difficult, I finally got out of bed a second time looking for an alternate solution.  A microwaved quick latte made with decaf tea, warm milk and honey actually helped increase my wish to sleep, but the neuropathy still was relentless.  As a last resort, I went out to my leather chair and reclined with my Nook in my lap playing white noise sounds, this time of a calming rain shower.  I finished my soothing latte and decided to sit out the night in my chair, since it was the most comfortable and close to sleep I had been in two hours.

Rested enough to enjoy breakfast

At last, sleep overtook me and brought three hours of precious sleep.  My husband found me asleep in the living room at 5:30 a.m. and woke me gently.  He encouraged me to finish  slumbering back in the comfort of bed.  Now I was finally sleepy enough to catch a few more serious winks on my pillow.  Morning came much too early for my tired lupus-challenged brain, but at least, I had enough sleep to thoroughly enjoy our early morning family gathering.

As for tonight, no midnight housework or cooking.  Instead, for me it is “early to bed” after such an “early to rise” morning!

Lupus neuropathy in the night watches

neuropathy intrudes into sleep

The onset of lupus neuropathy is never welcome, and interrupts some important times of rest in lives of lupus patient it affects.  At a patient’s most weary moments, this short-circuiting nerve pain and irritation may flow in disconcerting waves through thighs, knees, calves and feet.  For me, neuropathy sometimes comes on suddenly in the night watch, in the wee hours of the morning between midnight and four in the morning, intruding into what would otherwise be a restful, much-needed night’s sleep.

Neuropathy that wakes me is usually too intense and pervasive to ignore, it must be confronted.  Sometimes, when it strikes before bed time, I am able to rush to bed and fall asleep ahead of its full onslaught.  Other times, after sleeping a while restfully, it intrudes into my sleep like a robber who suddenly wakes the house.

waking realization of pain

My first waking realization is the pain in my legs and feet, and the gnawing persistence with which it wakes me.  I don’t want to wake up, I want to keep sleeping!  But, once neuropathy begins during my sleep, there is no escaping it without interaction of some type.  Along with intense restless pain in my legs, an inner ache and distress grips my weary malaise-filled torso.  There is no position of comfort to be found, no direction to toss or turn that will relieve the distressing sensations surging through me in miserable waves.  Sometimes the discomfort extends to the back of my neck and gives me a dull headache.

Tylenol, Ultram, Tea?

Getting out of bed is my only bearable option.  Moving, walking and getting my wakened body into motion seems to temporarily drown out the sensation in my legs, like turning up the volume on a stereo to drown out a yapping dog’s piercing bark.  I walk through the darkened house trying to think clearly enough to come up with an idea for relief.  Tylenol? Maybe that will be enough.  Ultram? Do I have enough hours to sleep for it to wear off before I have to get up?  Hot tea with milk and honey? Maybe increasing my  L-tryptophans will put me to sleep naturally.  However, sometimes I try those things and go back to bed, only to lay in the dark for another hour still feeling miserable and waiting for relief that doesn’t arrive.

hymns in the quiet darkness

On the worst neuropathy night watches, sometimes I wander out to the living room in my bare feet and pajamas, and spend a half hour doing yoga exercises dark to the rhythm of my husband’s snoring from the other end of the house.  Sometimes, I am able to sit comfortably enough to read my bible or a book, but other times, it is necessary to redouble my efforts to distract myself and drown out the neuropathy “noise.”  On the very worst nights, I give up trying go back to sleep.  I sit down at my grand piano in the dark and turn on the piano lamp behind the piano’s lyre, open a hymnal and start playing.

There, in the gently lit corner of my slumbering house, I quietly play hymns into the early hours of the morning and turn my heart to heaven.  If I cannot stop the neuropathy, and I cannot sleep, I resolve not waste precious hours in bed awake and miserable.  Instead, if sleep becomes impossible, I would rather sit in the dark playing music to honor and commune with my Almighty, merciful and comforting God.  This way, misery is forced to yield to the joy of fellowship with God in my quiet refuge of peaceful musical worship.

verses on these thoughts

A few verses from the Bible touching these thoughts:

Lamentations 2:19  Arise, cry out in the night: in the beginning of the watches pour out thine heart like water before the face of the Lord.

Psalm 63:6 When I remember thee upon my bed, and meditate on thee in the night watches.

Psalm 104:33  I will sing unto the LORD as long as I live: I will sing praise to my God while I have my being.

Psalm 107:28,31  Then they cry unto the LORD in their trouble, and he bringeth them out of their distresses. Oh that men would praise the LORD for his goodness, and for his wonderful works to the children of men!