One Patient's Positive Perspectives

Posts tagged ‘fog’

Lupus Adventures through Three Foggy Mornings

Three Foggy Mornings

Looking at morning through drifting Lupus fog... sunshine in my soul today!

Fog at awakening

Thick blinding fog at awakening,
a cloud seems to fill all my room.
Fog starts to rise with my breakfast, and then,
a little bit more while I groom.
Exercise chases away some more mist,
and my neurons are beginning to click.
Starting to feel like a human again,
encouraged, today I’m not sick!

CNS symptoms

Murky fog just won’t clear

Not every day works according to plan,
on the days murky fog just won’t clear.
Fogginess lingers, hanging heavy and dense,
taking away inclinations of cheer.
Those days are distinctively slower and rough,
mere thinking is especially hard.
Schedules abandoned and work set aside,
“going out” becomes a stroll in the yard.

Faith finds a way

Faith finds a way

And then there are days faith finds a way
to rebound before it becomes noon.
A half-day is better than losing the whole,
spent redeeming the whole afternoon.
Heading out late, not truly uncommon,
at least not for auto-immune me.
Trusting the Lord, begging daily for grace,
past the foggiest morn — I can see!

by Lupus Adventurer
Copyright January 2014

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Lupus, without any superpower or superhuman status

WEGO Health 30-Day Heath Writers' Challenge

If asked what superpower ability, like the comic book characters of Superman and Wonder Woman, I would wish to have, what would that be, and why would I want that special ability?  This is difficult!  Being such a realist, this potential flight of fancy really stretches me.  But, determined to meet the health writer’s 30 day challenge, here’s my response to the question.

As a girl I experienced incredible frustration when, while attending summer school between my third and fourth grade, I was asked to do something I had no clue how to do.  The assignment was to write a tall tale.  I wasn’t sure what a tall tale was, and I was stupefied and clueless where to begin.  The teacher and I did not have effective communication, and I don’t believe she ever listened to the fact that I had no definition for that particular form of short story fiction.  Now the incident amuses me, and serves as a great illustration of communication breakdown.  However, then it was quite distressing to me as I failed to comprehend how to do the task the teacher was expecting.

Scene from Benjamin Britten's Operetta "Paul Bunyan"

Now, you can ask me to write about something real, any observation or an experience, and my fingers fly rapidly like tap dancers on my computer keys.  But still, when asked to make up a story — the clicking halts abruptly and my fingers and brain freeze.  I subconsciously go right back to that moment in the school room, and rehearse the temporary mental shut-down. Ironically, I now know that the classic early American “tall tale” was about a burly over-sized and incredulously strong lumberjack John Bunyan and Babe, his big blue ox.  The pair was attributed with accomplished amazing feats in the minds of the storytellers and those who listened to them spin their tall tales of fancy.  Bunyan was one of our first mythical American superheros, much like Superman of the next century comic books.

I have asked myself about this superpower idea over and over, and still cannot really decide what type of superhuman power I most would wish to have.  I cannot imagine myself on the pages of a graphic novel accomplishing superhuman feats.  This is beyond my imagination.  As a lupus patient, my abilities sag far short of anything close to approaching superhuman strength.  Some days, just getting up getting through the brain fog far enough to be ready to go to work is enough challenge.  You see, I still will have difficulty writing about this unless I could come up with an idea that was really something I would want to be able to do.

So, perhaps I should start by ask myself a very different question:  If I were to be able to change unacceptable circumstances (disregarding for the moment whether I could do it) what would I change? Here are a few possibilities  in my pondering that I might consider:

  • Make everyone who is sick well
  • Enlighten the minds of those who unfairly judge chronically ill people
  • Encourage others to believe in and feel good about themselves
  • Help the faithless understand the forgiveness and love of God available to them
  • Cause my garden to grow bountifully, without weeds and producing lots of extra veggies and flowers to share
  • Banish all the self-destructive addictions that trouble and destroy the quality of life for those burdened by them

The first and last wishes fall clearly into the class of  “God things,” that can be only accomplished by Him.  These feats are vastly beyond even the abilities of the mythical Superman and Wonder-woman. These are done in God’s providence and kindness, touching one person at a time.  Many of us wish for these, but even in considering a hypothetical superpower, we would not expect our comic book heroes to be all powerful.

Beyond these two, the second, third and fourth wishes embrace goals that to one degree or another are already possible in human experience.  These four goals motivate  action and contribute to my sense of purpose and meaning.  To make a difference in these areas, a superpower ability is not what I need.  However, I do need to reach out beyond being passive and take some risks to go outside my comfort zone.  I pray for God’s help and borrowed ability to do that, and sometimes by God’s grace, human efforts make a difference in some people’s lives that touch mine.

The garden: hard work required!

As for my garden, that seems like it should be simple.  Hard work and tending are required, along with weeding, sun, healthy soil, good weather and water, since there are no shortcuts to a bountiful harvest of edible produce and beautiful blooms to brighten my personal world.  This seems like a shallow and self-serving wish, but to be honest, it is something I really must admit crosses my amateur gardener’s mind regularly!  I like gardening immensely, but admit that I am not very good at it.

Otherwise, I am content to be who God created me to be, and have decided I will pass on the idea of any phantom superpower wish.  I like being who God made me, just like I am, lupus and limits and all.  I will accept the boundaries God has graciously appointed unto me.

Lupus, Benlysta and Good Mornings

Lupus, Benlysta & Good Mornings

Several days in a row, and this is newsworthy!  Very recently I have seen signs of my lupus quieting, especially at both ends of the day.

Recently, it has been possible to count about 10 successive days of awaking feeling relatively well.  Lupus brain fog has been much lighter than normal, joint stiffness has been less severe and shorter lasting each morning, and my general sense of well-being has been consistently and significantly improved.  This sharply contrasts with a long-term pattern of feeling horrible, miserable and unable to function that has historically been part of my average morning experience.

Treatments with Benlysta passed the two month mark last week with my 4th infusion almost one week ago, delayed slightly by my trip out-of-town the previous Friday on the anniversary of 8 weeks since the infusions started.  Something about my health has been clearly different in these recent days!  Although it may take some time to confirm that these obvious signs of possible remission are due to my Benlysta treatment, there is little real doubt in my mind that the new medication is responsible for some observable improvements in my health.

I cannot recall a recent time when I felt good in the morning more than one or two isolated days each month, let alone each week.  Having now felt “decent” every morning for over longer than a week is completely unprecedented.  Yippee!

Feeling measurably better

After flying back into town late last Saturday night, it was almost a shock to wake up the next Sunday morning feeling fresh.  I was able to arise unusually quickly, be on time for an 8:00 a.m. sound check at church,  and  successfully performed a solo that was new to my repertoire  at the morning church service, without being encumbered by my usual morning brain fog.  Then, I attended choir practice, which I hate to have to admit I have missed on most Sunday mornings for months.

In addition to feeling measurably better when I get up on recent mornings, the rest of each day has been notably different, also.  Last week I recounted my surprise about feeling good the next morning after walking so far that my lupus arthritis crippled by end of the first night of my trip.  I was amazed to wake up feeling good in exchange for having an expected massive lupus flare. I didn’t expect that result after abusing my joints so badly!

On every morning of the trip, and continuing since returning home, I have felt equally good or slightly better.  This week I worked five whole days, unlike most in the past few months.  I have had a pattern of taking one or more half or whole days each week as sick leave, grateful that my ADA accommodation is so graciously supported by my employer.  Usually starting work at 11:00 a.m. can even be a struggle, but this week, I was at work on two days at 10:00.  I would really like this to be my new pattern.

After working five full days, I felt unusually perky at the evening end of each day.  After stopping work at 7:00 or 7:30 p.m. and a 30 minute commute, I still felt energetic and cheerful while fixing dinner and visiting with my family.

Most Sundays...

Most Sundays, I  have struggled just to feel well in time to attend the 10:00 a.m. worship service, and usually missed most of the 9:00 a.m. Sunday School class sessions.  My husband usually attends these earlier activities alone, and I join him in time to wave hello as he plays the piano prelude to the 10:00 worship service.

Again, today I awoke clear-headed, not groggy.  I walked without stumbling to the kitchen and got my own cup of coffee.  Within minutes of taking my morning medications, I am sitting here ready to write, and will soon to attend a special 9:00 a.m. choir practice with my whole brain and body participating.  I am looking forward to a fruitful Saturday in the hours ahead.

I praise the Lord today, for it truly is a good morning!

Lupus and Benlysta after five weeks and five days

Slight glimmer of improvement?

Today is October 4th, and exactly five weeks and five days after my first Benlysta infusion for my lupus.  Even though I have had some thoroughly exhausting activity over the past week, it seems many of the recent mornings are still showing a slight glimmer of improvement.  It may be too soon to tell, and this morning is clearly a great flaring exception, but I have been encouraged a little by awakening with what seems like slightly lighter symptoms followed by a little bit quicker and more complete morning recovery from lupus fog, CNS difficulties, joint stiffness and pain.

However, this morning dawned with an exceptionally acute flare, most likely triggered by last night’s lack of sleep from neuropathy pain.  Deep bone pain is in my fingers and wrists, feet and knees and the long bones of all four extremities.  However, while taking this morning off from work to help fight and turn around the effects of this flare, I am choosing to remember yesterday.

Morning fog clears

Yesterday was one of my most productive work days in weeks.  Morning fog was lighter and lifted a little more completely than normal.  It seemed as the day progressed everything inside me was clicking along like “clock work” and I got great things accomplished on my job.  I am choosing to focus on the recent slightly better mornings, and consider this morning as a mere stubbed toe in the ongoing battle against my lupus!

My prayers are that Benlysta will keep doing its thing and that it will soon make a big difference.

Lupus and facing a professional certification exam

Praying, studying, and hoping for exam success

Four days, and counting!  Thursday afternoon I will make my second attempt at passing a professional certification exam in a neighboring state.  Flying out at six-something in the morning, my husband has to drive me to the airport.  With CNS lupus, my driving skills are more than morning-impaired!

Travel time will help me get out of lupus brain fog, and all morning has been allowed in my schedule for getting across town from the airport to the exam location.

What could be better for a lupus patient than an afternoon exam?  When I failed this test the first time, I had flown all day across the country and then had to arise at 4:00 am to be coherent for an 8:00 a.m. exam time.  This would have been tough enough any day, but I was exhausted and suffering jet lag after traveling 3,000 miles, not to mention waking in the deepest, thickest version of brain fog and slight sleep deprivation.

However, the reason I failed was simply not knowing enough to pass.  I can’t blame that on Lupus!  Now, however, I am more prepared and have studied for another year before trying again.

A good night's sleep and a morning flight

So Wednesday night’s plan is for a good night’s sleep in my own bed, followed by a quick Thursday morning commute flight.  A half-day will be left to arrive at the exam hotel by taxi.  This should provide adequate time to suppress CNS lupus mental challenges and set the stage for my best exam performance.

For more information about CNS lupus and studying challenges and approaches, please read my August post, Lupus Adventures Studying for a Professional Exam.

So, this week, I am praying for God’s help, reviewing four binders of study notes, meeting once more with my study group partner (yeah, Gina!) and hoping just to do my best and to pass this time.

🙂

Lupus mornings when it hurts to think

Lupus and mornings are somewhat incompatible

It is no secret that lupus and mornings are somewhat incompatible.  If we could simply skip them, most of us lupus patients would opt out.  However, mornings just have a habit of returning on a daily basis!  There is no way out of them but to sleep or muddle through them.  However, most working people do not have the most leisurely of these options.

So, what can a lupus patient do when morning arrives suddenly as a rude awakening?  What are effective ways to turn around the foggy brain, stiff muscles, pain and deep headache that often follow an especially deep night’s sleep?

First, consider moving very slowly and speaking quietly.  I try to help those around me know how to walk gently with me through my morning.  Usually I seek out a quiet hug from my husband, quietly telling him it hurts to think, while imploring “my brain hurts, so please just give me a big hug for a minute.”  It helps him to know there is something very simple he can do to help me face my morning.  He is more empowered by that than if  I complain without giving him guidance about what kind of support I need or expect him.  My simple request frees him from feeling like he has to figure out how to solve my health problem, and puts boundaries around my expectations for help.  He is usually able to stop his morning activity and fast-paced motion for a while and help with a hug.

Next, coffee, food, gentle stretching, deep breathing,  medications and quiet reflection.  I try to get my metabolism slowly coaxed into motion so it can begin to counteract the negative effects of actions lupus has taken against my body in the night.  Accelerated cell death causes residual cellular debris deposits throughout my body, which are toxic and act to interrupt normal body chemistry and function.  This is a factor in the brain fog and joint stiffness common in lupus.  Gradual gentle coaxing into a more active mode helps stimulate circulation and struggling adrenaline, and also helps my body begin to deal with the extra physiological challenges lupus places on my metabolism each day.

Seek perspective and ask for God's help

Then, a light healthy breakfast.  I spend a few moments before I eat to thank God for my blessings, and most days, even for my lupus and it’s limitations.  I seek perspective and His help, ponder a passage from the Bible, and ask to borrow His strength for the day ahead.  In these quiet moments I am reminded that the day ahead should be balanced between my own needs and the needs of those around me.  I eat and reflect quietly while I wait for my mind and body to take a few steps forward out of sleep’s lingering pain, fog and stiffness.

Next, I feed the dog, finish drinking another cup of coffee on the porch for a few minutes,  exercise and play the piano for a few minutes.  The more I move and engage, the better I feel.  Slowly, but surely the day opens up before me as pain, stiffness and mental cobwebs clear away and I am more prepared to engage the responsibilities of the day.

Of course, there are days when my efforts are in vain, and I am unable to perform my normal responsibilities.  Thankfully, those days remain in the minority.  Usually, I am grateful to claim some measure of personal victory by mid morning, and then venture out to try to make a difference in my little corner of the world.

Lupus, and a barking dog alarm

Rudy barks sparingly

Sleep is crumbling in pieces around me while the dog barks at the other end of the house.  Since Rudy barks sparingly, it probably means he either hears a car pulling into the driveway or may be watching a neighborhood cat saunter across his porch.  Rolling out of bed to the sound of the front door opening, I hear my husband and brother-in-law chatting in the kitchen.

The aroma of coffee brewing is still lingering, and my aching feet pull me toward it.  Stumbling around the bedroom, I find something decent to wear, and my glasses.  This is an aching, foggy, groggy morning.  I just want to sit very still for awhile and wait for my coffee and brain to connect.  Each sip wakens me just a tiny bit more.

Rudy approaches with a little white ball in his mouth and begs me to follow him to the back yard, wagging his tail wildly and flopping his dachshund ears around like a rag mop.  He is so perky and zestful!  Getting up to find a second cup of coffee, I yield to his exuberance and follow him.

I choose to be thankful...

I am praying that Benlysta will help quiet my lupus symptoms, holding an idea of mornings when moving and thinking may be easier again, and perhaps with more enthusiasm.  It will take a couple of months or so before the new drugs have full effect.

In the meantime, mornings go on as usual.  Slower and stiffer than I’d like, but they always pass.  Most days, every hour that goes by, the pain lessens, moving gets easier, and thinking clears a little more.  Not always, but usually.  I choose to be thankful for that.

A few minutes at the piano, and thoughtful call from my mother-in-law checking on me after yesterday’s infusion.  Soon, I’ll be joining her at birthday lunch for a wonderful lady from my church, having her 75th!

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