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.
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.
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.
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.
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!