One Patient's Positive Perspectives

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Glorious Morning!

Glorious morning!

These were not the first thoughts or words a few mornings ago!  Many nights, after dropping off into a hopefully deep slumber, the next realization at 2:00 or 3:00 a.m. is aching joints, malaise, deep bone pain or neuropathy pain, breaking up slumber like an unwelcome intruder.

Then, comes writhing around in bed in the dark of discomfort for a while, until it is clear the best option is just to get out of bed.  It would be nice to say prayer is always the first tactic, but unfortunately, that’s just not the case.  But, even when prayer is remembered at the top of the list, God’s answer does not always come in the form of more sleep.  His wisdom is unsearchable!

The pursuit of more sleep

The things that sometime help are reading, checking email, or playing mindless computer games (bubble popping games are the best,) while sipping a cup of decaf fruit tea.   Sometimes these efforts are enough to make going back to sleep possible, but sometimes the only thing that will bring sleep back is medication for the pain.  When  intense neuropathy is the culprit, augmenting nightly gabapentin with pain medications calms the gnawing nerve pain.  When it works, a return to sleep is sweet relief.

But, on nights when none of these tactics work, pain-induced insomnia becomes intensely wearing and frustrating.  These sleepless, painful nights often end with a realization that night is over, just as first rays of morning light peek over the backyard fence.  The sunrise comes much too early, often bringing with it a not-so-glorious morning. Prayers for sleep shift into requests for God’s gracious help to cope with the responsibilities of the day ahead, and for strength, encouragement and wisdom.

Perhaps one unlikely positive that comes out of a painful sleepless night, is that despite simple mental weariness, there is often little brain fog when morning arrives.

Out of a rough wearisome night emerges an opportunity and adventure of faith: accept the uninvited challenge and be unwilling to be undone by lupus!

A great many work days follow this kind of sleepless nights and personal prayers the next day for God’s help and strength never go unanswered.  As professional demands of the day arise, it is obvious my responsibilities cannot be met alone.  Silent prayer becomes my silent partner throughout each hour of the day.  The opportunity to strengthen faith is woven into the fibers of the day’s duties and activities.

On these bleary-eyed days, my human frailty and weakness is unquestioned, and petitions for undergirding and support are quietly fulfilled.  I clearly see and feel God’s presence and nearness.  As I am weak, He demonstrates His strength.  Borrowing from Him, the unspoken need of each hour is liberally supplied.  Shielded from the sight of all eyes but my own, the hidden miracle of God’s nearness and merciful care is displayed.

Not every sleepless or weary painful night is a battle ending in victory over the next day.  There are days when prayers for wisdom and strength are answered with a clear understanding that lupus flare and physical health situations require retreat into a day of rest and recovery.  Human limits, further narrowed by the effects of lupus, sometime require the wisdom to know when to put on armor and go to battle, and when to wave the white flag in a temporary defeat!

This, too, requires the faith and grace to accept what I cannot control.

Hope springs optimistic

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Hope springs…

Yet, hope continually arises, and the unreasonably optimistic side of my nature anticipates every morning will be better than those that precede it.  Every morning bears new promise to unfold into a wonderful day.  However, some days Lupus just doesn’t get that message and temporarily wins a battle or two.

So, the war against being undone by Lupus goes on, and most days the outcome of the battle turns out for the best. Whether met with brain fog after a night’s sleep, or mental fatigue from a sleepless night, there is always an opportunity to pursue personal victory

Routinely, even after a full night’s restful sleep, the first half of every day always seems to have its own special challenge.  As accommodation for my lupus, my employer has allowed me to shift my hours to start work a little later, along with telecommuting on Fridays.  I am very grateful for the encouragement and support of my supervisors and co-workers.

Most of my days begin with a mentally groggy, foggy, slow moving start.

Why brain fog, in plain English?

Brain

Why brain fog?

Why are mornings with lupus so rough?  As best I can understand, in extremely plain English, Lupus can affect morning mental processes in at least two ways, especially when systemic lupus activity has flared.

First, through accelerated cell death, and second, from inefficient clean up of the stuff those cells were made of.  Beside these common reasons, a small percentage of lupus patients like me, with some degree of central nervous system involvement, may also experience organic involvement of lupus wrecking havoc in their central or peripheral nervous systems.

thKPD1JCKQAs body cells go through the process of replacing themselves with new ones, old cells replicate by sort of unzipping the DNA chain inside the nucleus of the cell and new chromosomes floating around in the cell nucleus connect to each half to create two DNA chains.  Focused around the split up DNA chains, the nucleus divides and the cell pulls apart, separating into two new cells.

This cell division and multiplication happens constantly in the body tissues of every living creature.  As these cells multiply they help replace other cells that have died and broken down by a process called apoptosis, or programmed cell death.

Apoptosis can happen at an accelerated rate in patients with lupus.  So, with more dead cells comes more stuff the dead cells were made of.  These pieces of broken down cells put a strain on the body’s ability to clean up and clear these cell fragments away, and can morph into substances that trigger auto-immune response, like lupus.

I found a relatively easy to understand diagram that illustrates this complicated process as a flow chart, located within Chapter 3, “Interferon and Apoptosis in Systemic Lupus Erythematosus” of an open access book on Systemic Lupus Erythematosus by Daniel N. Clark and Brian D. Poole from Brigham Young University.  See, http://www.intechopen.com/books/systemic-lupus-erythematosus

Lupus Diagram of Normal and Lupus Apoptosis Clearance - Copy

Even when it isn’t working properly, the human body is an amazing miracle of engineering.  The metabolism of the human body is intricately designed to repair and clean up the effects of normal programmed cell death that tends to take place more intensely during sleep.  In lupus, the clean up is slow and the excess substances (cellular debris) that remain tend to distort the normal function of the immune system.

The effects of this housekeeping slow down are especially noticeable in the morning, and often are described as “brain fog.” With Lupus, left over cell fragments are not quickly cleared out of the body the way they would be in a healthy person. This cellular debris includes substances that trigger increases in auto-immunity and as well as clog up a body’s normal chemistry.

Build up of extra cellular debris, and increased autoimmune activity can both add to morning brain fog, joint inflammation, stiffness and pain.  Yet, mornings have their own special character, and if not quite glorious, there is still the new hope every morning that the fog will clear quickly, and there will be a great day ahead.

Sleep techniques for lupus pain

Sleep techniques for lupus pain

Reclaiming half the day

However, some days, like the one I wrote about from last week, morning brain fog lasts especially long and makes going to work on time nearly impossible.  After waiting for the entire morning to pass before mental clarity returned, that day I shook my body into action and headed out for my office at noon to reclaim the half-day of work that remained.

Every time I exercise the ADA accommodation my employer has granted for my lupus allowing me to work around my physical limitations, I am extremely thankful.  That day was no exception, as I drove to work my thoughts turned to thanking God for the gracious support and encouragement of my employer.

After muddling through writing about this in the middle of that ‘”brain foggy” morning, the realization arrived that it would be smart to wait and proofread the post later, when writing and thinking skills would be better.

Getting to “later” took several more days! There were just too many grammatical glitches buried in what I had written during deep brain fog to correct quickly, so most of the editing waited for tweaking during Friday’s Benlysta infusion.  After one last reading, proofreading was done and it was finally ready to share.

Systemic Lupus Erythematosus, Edited by Hani Almoallim, ISBN 978-953-51-0266-3, 564 pages, Publisher: InTech, Chapters published March 21, 2012 under CC BY 3.0 license, DOI: 10.5772/13251
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