One Patient's Positive Perspectives


Monday night at work I was overwhelmed with bone-tired fatigue before heading out into the evening commute traffic.  Other than a couple of normal meetings and a normally busy day, Monday had been no different from any other normal work day.  Driving home, I noted that my joints were especially swollen and that new mouth ulcers were brewing inside my lower lip.   Once home, I was soon whipping up sauteed chicken tenderloin and large salads, and dinner was finished with dispatch.  I was unusually weary.

I thought to myself, “the sooner I could get off my tired, aching feet, the better!”

After dinner, I sat down at my computer to draft a blog post, and couldn’t even stay awake long enough to read the blog stats and moderate a couple of comments from new readers.  It felt like someone had pulled my power cord out of its energy source.  Overwhelming sleep overtook me in my desk chair.  Awaking briefly, through weary eyes I could see that the evening was still young, the sun had barely set, but I was well beyond ready to go to bed.  I was completely wiped out!

Act One: A Good Night’s Sleep

Act One: A Good Night’s Sleep

So, I walked around my desk in our home office to my husband’s desk, and gave him a gave him a hug and a goodnight kiss, explaining my state of exhaustion and plan to call it a night early.  After taking my evening medications, very few minutes  passed before I was already deep asleep in bed. That night I stretched out suspended in a sub layer of sensation-less unconsciousness, so deep no alarm, human voice nor other sound could penetrate or call me from it.

Awaking at mid-morning from a long fourteen-hour hibernation, deep fogginess and exhaustion had stalked me through the night and into the next morning.  Finding my limbs and joints extremely stiff and saturated with unusually intense diffuse pain I pondered the state of my lupus.  Mouth ulcers were increased in size and pain, arthritis was in flare and my CNS symptoms gave me a sensation that equaled a maximum narcotic dose.  I had a blaring headache, and was still overcome with bone-tired fatigue after an extra long night’s sleep.

I drank  a cup of coffee and ate a light breakfast at my computer, while composing an email to my boss and assistant about my lupus flare and my need to stay home to rest and my plan to take something stronger than normal for my pain.  After striking the  “send” key, I checked my work calendar and was pleased there were no appointments to reschedule.  While responding to a couple of urgent morning emails, I saw that my assistant’s email popped notifying the office I would be out for the day.  Everything was set for a sick day.

Act Two, Scene One: More Sleep

Act Two:  A Full Day’s Sleep

Picking up my Nook tablet and intending to read for a while, I sat down in a recliner in the living room with a second cup of coffee.  Four hours later I awoke in a mid afternoon stupor, finding my cold cup of coffee beside me on the end table and my Nook in auto sleep mode.  With a slight wish to eat something, I headed for the kitchen.  Making my sandwich was unexpectedly comical.  I dropped the loaf of bread twice, dropped and juggled the plastic mayo jar in the air several times, and stood at the counter with a sensation akin to drunkenness.  With my feet like rubber beneath me, from time to time I lost equilibrium and a sensation of the room swaying stumbled me while standing still.

Act Two, Scene Two: Even more sleep

Extremely glad I had the wisdom to not venture out commuting that morning, after lunch I stretched out, this time on my favorite couch.  I was still so tired!  Nestling my head into the couch pillows, I tried to coax my little dachshund to cuddle up beside me, but in his characteristic stubbornness, he refused.  Within moments I returned to deep sleep, once again oblivious to everything in the house around me.  After sleeping another seven hours, I woke to realize my husband was home again from work and it was dark.

He had let me sleep a long time after he came in, realizing I needed the rest.  By this time, more than twenty-four hours had passed since going to bed in exhaustion the night before, but in that time I had been awake for only about an hour of it.  I was still so exhausted, and still hurt intensely, but my CNS lupus symptoms had finally cleared.

Act Three: Another Good Night’s Sleep

Act Three: Another Good Night’s Sleep

Our dinner was already late before I ever started, so a trip to Taco Bell filled the menu.  Back at the scene of my earlier night’s post-work exhaustion, I sat up in the office after dinner for about two more hours finalizing a blog post that had waited in draft mode.  A couple of hours later found me back in bed, sleeping soundly until 6:30 the following morning.  I had spent 35 of the previous 38 hours in slumber.  My exhaustion had finally lifted, my brain was actually clear, and my joint pain had waned to a tolerable, able to be ignored level.


My fatigue had been so intense, pain medications were unnecessary, since I was able to sleep easily and deeply without awareness of pain.  A major lupus flare appeared to be averted by interrupting my normal routine at its onset to get rest and sleep.  Over the rest of the week, my lupus was more quiet than it had been over many previous weeks, and I was productive and able to handle my work responsibilities that were suspended for a day.  For the next three mornings I awoke earlier than normal with an uncustomary alertness.  I had followed the right script, and ended my flare with a nap in three acts.


Comments on: "Stopping a lupus flare with a nap in three acts" (1)

  1. wwfd301 said:

    I get like that…fall asleep sitting up at the drop of a dime…then sleep for 2 days and better by the third. Then up all night because I slept for 2 days straight…and the cycle starts again! Glad you were able to feel better!!

Your Comments Are Welcome!

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: