One Patient's Positive Perspectives

Posts tagged ‘fatigue’

Lupus in a Victimless Life – Despite Limitations

Series: Lupus in a Victimless Life

Butterfly on yellow daisy

This is the second discussion in a series about being a Lupus patient or someone with any chronic illness, without becoming a victim.  Society tells us we are victims of the things that make life difficult, but do we really need to see ourselves that way?  No, not even for a minute!

Having Lupus should not mean being victim or powerless against it.  Although we cannot choose whether we have Lupus, determining not to be its victim is matter of mindset and even a choice.  When special events or activities in our life disrupt our normal routines and schedules, it becomes very important to be on guard for signs of physical or other stress.  Stress or fatigue may signal increased risk of bringing on a flare of lupus symptoms.

WP_20180502_18_45_00_ProA recent trip to attend a business conference was an excellent example of this type of self-management that often minimizes the impact of potential lupus flares.  Recently joining about 1,000 peers from all over the nation at an educational conference in Washington, D.C., we gathered at a large resort on the Potomac River for five days of classes and continuing legal management education.  With breakfast starting very early, and classes going all day long, by sunset, everyone was tired.  There were many extra steps going to and fro from class to class, and every situation and conversation was a new experience.  This type of event interacting with countless people and ideas easily causes both physical and emotional fatigue.  This conference was no exception.

Hands Holding Book ReadingSelecting how to best spend the free time in the evenings included a wide array of choices, from dining with old and new found friends to taking shopping trips, going on walks, taking in local entertainment.  The conservative choice was spending the night quietly in a hotel room reading a book or eating a takeout meal, while resting with feet propped on a pillow.  Predictably, most evenings were spent pursuing a sedentary evening that helped prevent over-exertion, while also promoting restoration necessary before the next day’s demanding schedule.  Wisdom is listening to the physical needs of your body, and recognizing without angst that lupus narrows those limits.  It seemed the best idea was the wise one.

WP_20180503_20_03_18_ProBut, of course, a little fun, within physical limits was necessary!  One night, opting to accept the invitation to take a sunset walk with attendees from our local chapter sounded fun!  Midway through our jaunt, it suddenly seemed best to sit and rest midway while the others in our group explored shops at the bottom of a long, long flight of steps heading down toward the shore.  At complete peace with self and lupus limitations, skipping the stairs was an instant no-brainer.  Besides, it was a great opportunity to do some great people-watching.  When everyone else reached the top of the stairway again and reunited our group, we finished the second half of our twilight stroll through the remaining street level shops near our hotel.  The activity was pleasantly enough, without being too much.

Despite the Limitations of Lupus

LA Blog Wordle 2013The onset of Lupus clearly changes a person’s life, sometimes very dramatically.  Whether their presenting symptoms are arthritis, rashes, or perhaps a more serious aspect of Lupus, their life definitely changes.  Often, many lupus patients experience fatigue, pain, and other symptoms long before they ever receive the diagnosis.

After learning that Lupus is the cause of their medical problems, a person often has a great sense of relief, as well as hope that things will improve.  The average patient experiences Lupus symptoms four to six years and sees up to the same number of doctors before getting a clear diagnosis of Lupus.  Many describe the great sense of relief they feel after finally getting a one word diagnosis to describe their collection of multiple medical symptoms.

Doctor with clipboard 2With the diagnosis comes the welcome change of a decisive treatment plan and prescriptions for well-established treatments to help control the lupus.  Often the counsel from doctors and other knowledgeable counselors encourage changes in lifestyle and attentiveness to recognizing physical limitations.  Each lupus patient has their own unique set of symptoms and circumstances influencing their quality of life, despite lupus.  In the same patient, flares of their Lupus may suddenly narrow those limitations and frustrate their life goals and plans.

Over work or inadequate rest can quickly bring on extreme fatigue and lupus flare, so it is critical to learn to perceive physical, psychological, and spiritual signs of weariness, and then to take quick actions to retract the limits temporarily to quash or prevent an oncoming flare of lupus.  For many patients, the onset of extreme fatigue is the first symptom as a flare is starting, so becoming intentional about managing social commitments and activity in balance with physical stamina can go a long, long way to minimizing the length and severity of flares, when they do occur (and they will!).

doctor talking with patientLiving within the limits of Lupus may involve a strict regimen of medications, laboratory tests, and medical appointments, along with costs that that restrict a household budget.  Moderate physical exercise can help increase the physical limitations by encouraging good circulation and promoting tissue health and repair.  Adequate sleep becomes invaluable in fighting many of the affects of lupus, and can diminish some of the morning mental clouding that many patients experience daily.  Communicating with the rheumatologist becomes very important if arthritis or neuropathy pain disrupts sleep, and being willing to ask for and take pain medications can be essential to fighting the negative effects of lupus.

bf resting on benchAll in all, we can choose to make the most of what we have, despite lupus, and accept that lupus may make our life and limitations different than others.  Take a the time to you need to slow down, without letting this need frustrate you.  In the stillness of those quieter moments, focus on the blessings around you, and determine to embrace your limitations rather than becoming a victim of them.  Perhaps consider these thoughts penned by Paul of Tarsus, who also had a life-long chronic illness but embraced the ideas that his weaknesses and limitations were a blessing.  He wished his illness would go away, but he was no victim!

stock-photo-woman-reading-the-bible-in-the-darkness-over-wooden-table-277354922“For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.” 2 Corinthians 12:7-10, KJV

 

 

 

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Lupus and Listless Grocery Shopping

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We certainly don’t need tomato sauce!

We could stop right there with the article title and begin delving into the woes of shopping while listless, weary, and exhausted from lupus.  But, that sounds way too depressing!  With your permission, our musings can head in a different direction.  This idea is little about fatigue and completely about trusting my memory!

Recently, my husband consented to go along on a trip to Costco to buy many giant-sized packages of groceries to feed the five grandchildren (and their mom and dad) who are temporarily living with us.  Then, a quiet little “how can I possibly do that” panic overtook me when he responded, “okay, let’s go right now”.  There was no shopping list, and I didn’t have time to write one!  What mattered most was having a willing cart pusher and muscular package lifter to help.

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Yes, there’s Plenty of Mustard!

Shopping listlessly (is that really a word?) with lupus is never a very good idea, mostly because of the well-confirmed short-term memory failures in my past.  Listlessness made me too likely to purchase items already on my shelf at home while forgetting to buy the things that are needed the most.  With my short term memory in a somewhat challenged state due to impacts of CNS lupus involvement, shopping with a well thought out list is usually a much better idea!

A nifty high tech solution suddenly popped into an otherwise not so clear brain.  Why not go through the kitchen and just take pictures of what IS in the cupboards, and then check the pictures on my cell phone if we cannot remember whether we need an item.  So, my husband patiently waited, smirked and chuckled a little while I went through the cupboards speedily snapping photos with my cell camera, and even held the fridge door for me for my impromptu visual inventory.  So after a quick dash around the kitchen, it was time to set out for some listless grocery shopping.  Had we stumbled upon a great new technique to simplify shopping?  Maybe not, but perhaps we could spend the grocery dollars a little more wisely than without the photos.

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We always need bottled water in AZ!

As we headed out in my husband’s pickup truck, there were a few minutes between home and Costco for glancing at the photos to see what might have been on a list if one actually was written.  Soon, we were walking up and down the Costco aisles filling the cart.  Believe it or not, the “listless method” actually worked well.  During those moments of matrimonial debate about what we should buy, a photo became the final judge.  Why had this not occurred to me before?  There is nothing like virtually taking the kitchen along to remove uncertainty.  In one instance, mustard was at issue, but the picture of an unopened bottle on the shelf solved the question quite nicely.

While it is unlikely list writing will stop completely at our house, perhaps once in a while I will pull out this newly minted approach when time to plan is at a premium.  I can count on the perfect recall of my digital record in those moments when recall by my lupus challenged memory cannot be trusted.  We will put this idea on the “one more use for a cellphone” list!

Lupus and the recurring visit of the sloth

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Return of the sloth

Waking up in the quiet of a Sunday morning with a deep relaxed sigh, stretching fingers brush the euro pillows that serve as a headboard. Suddenly realizing that there was no husband in the house, a foggy lupus mind rushes back a faint realization he was here, and dressed for church.  He had stood there at the foot of the bed, wearing a bold blue and yellow Jerry Garcia tie saying, “honey, I’m leaving.”  As he headed out to play piano for the early morning choir practice, Sunday morning sloth mode had overcome the sleeper, who didn’t wake up again until this very moment.  What time is it, anyway?

Oops!  A soprano spot in the choir was now standing empty, and a husband sat through the church service temporarily stood up by a “sloth” who still slept at home in bed.  With another resigned sigh was realization that the morning had been spent sleeping through church, succumbing to the overwhelming fatigue tugging on my body.  Grateful for the stolen extra sleep, the fatigue was lighter than earlier when I almost woke up, but there still was a measure of frustration over failure to be responsible and “in my place” on a Sunday morning.

Sleep/Rest Goals

The Question – sleep or laziness?

To an outsider looking in, it is no wonder the conclusion about this type of slothful behavior is a blatant proclamation of “laziness”, but the enlightened few who really understand autoimmune disease know it is something different.  Sloth mode overtakes most autoimmune patients with regularity, but after a Benlysta infusion, the effect for me is much greater than normal.  There are always a few days of overwhelming, consuming fatigue, sleepiness, and utter exhaustion that set in during weekends that follow monthly Benlysta infusions for my lupus.

Thankful that there are no other noticeable side effects from the Benlysta I receive every fourth Friday, I can live with the weariness that overtakes me afterward.  Many years before Benlysta was available for lupus, the only treatment that controlled by lupus was a combination of the cancer chemotherapy drug Methotrexate, a transplant drug Azathioprine, Plaquenil, prednisone, and a prescription NSAID.  Methotrexate caused nausea and extreme malaise for at least twelve to twenty four hours after each weekly dose, so a “little” slothful tiredness is a tolerable outcome, if not blessing, in comparison.

Return of humanness

Showering and letting the slothful sleep slide down the drain, the rest of the day was recovered and went on like normal.  Sunday dinner, out and about to play piano at a retirement center worship service, and then on to afternoon choir practice.  This evening, I joined my husband at church and filled this morning’s vacant spot with the other singers.  The sloth was left behind, at least until tomorrow, and the butterfly returned.  Although sometimes it reappears transforming me for another day into a Monday morning sloth, on Tuesday, it is certain full humanness (and butterfly-ness) should return and remain for the next four weeks.

 

Lupus and 200 hours with Benlysta

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Benlysta Infusions Started August 2011

Every four weeks, month after month for almost four years now, three to four hours of each month has been devoted to an infusion chair.  Doing a little mathematics reveals that a little shy of 200 hours have been invested in Benlysta (belimumab) infusions for lupus.  As medical milestones of each month, they are helping subdue and manage the impacts of lupus.  Before lupus, the threat of quitting work due to early disability retirement loomed ahead, but the powerful work of this relatively new biologic drug reversed that.

With the return of greater ability to enjoy challenging adventures, quality of life is improved.  Intensity of lupus signs and symptoms have dramatically decreased over time, although the benefits were slow to show up in the first few months.  The first few months showed little change in lupus severity, but during the next few months that followed, symptoms decreased, pain lessened, and flares began to be shorter and less frequent.  During the second year of taking Benlysta, overall health and strength gradually improved.  Now, after almost four years, the infusions continue and keep lupus in manageable check.

imagesOVOE762VTwo noteworthy observations about effects of a Benlysta monthly treatment cycle:

  • Signs and symptoms of lupus seem to increase during the week before my infusion.
  • After Friday infusions, extreme, bone-tired fatigue lasts through each weekend.
  • Immune system remained strong, if not better

Benlysta may be a great option for many lupus patients, may be just what their doctor ordered!  As for me, I thank God daily for the help and control of my lupus it continues to give.

Returning from East Coast Lupus Adventures

thDDSVWJG3After all the fun traveling from Arizona to Philadelphia for the 2015 GSK Lupus Blogger Summit, life and reality always have their return.  The high point was stepping off the plane 10 minutes earlier than expected and calling on the cell phone to find out my husband was already almost at the airport.  It is so nice when you have those moments that remind you that the one you miss, misses you, too!  After leaving the east coast at noon it was eight when a suitcase and tired girl slipped into the pickup truck.

Hungry and tired, we stopped off at a coffee shop for comfort food, pie and a coke, did some catching up.  A friend was working last night, and waited on our table, and with the sodas, placed a fresh red carnation table in front of me with the gentle explanation, “a flower for you.”  That was sweet and a welcoming thought after a long, flight weary day.  Tummies full and spirits a little revived, we were thankful to be together and soon ready for the last five-minute trip home.

Exhaustion overtook both of us, and after a quick shower blasted away the grime of taxicabs, airports, and airplanes, sleep arrived almost instantaneously.  The night passed nearly as quickly, ending abruptly with the welcome smell of fresh coffee on the bed table beside me.  Leaning on the pile of pillows he tossed my direction from the nearby bench, eyelids drooped off to moments of sleep and husband’s chatter between sips from a warm caffeine-filled mug.

th2C28Z9N0Unlike the night, morning moved very, very slowly, matched only by slow reflexes and even slower murky disconnected thoughts.  If ever there was a day to be tempted to call in sick with my lupus after a trip, this was it.  Unlike the sweltering sauna on the east coast, the Arizona desert morning was unexpectedly crisp and refreshing.  After kissing my husband goodbye in the driveway, the second cup of coffee led me through the house into the back yard’s fresh air and fragrant rose blossoms.

Delightfully, the cool morning breeze invigorated and refreshed, as deep draughts of blustery breeze wakened a sleepy set of lungs, slapping fresh life into the lupus fogged gal walking around the yard in my slippers!  The day began to look suddenly promising and worthy of pursuit.  The refrain actually passed over astonished lips, “Oh, what a beautiful morning!”  What a blessing to be home in my back yard!

Quickly gathering all the loose ends of hair, clothing, keys and a sack lunch, every thing seemed to tumble to the floor as a startling reminder CNS lupus might be a little flared from exertion and travel.  The reality of lupus limitations has a sneaky way of keeping a gal humble.

The commute drive was executed with extra care and attention, followed by a couple of conversations at work with obvious moments of difficult enunciation.  Mild lingering CNS difficulty lasted through mid afternoon, but finally the fog burned away completely.  Eventually, the morning song continued into later afternoon with, “Oh, what a beautiful day!”

Lupus, Christmas shopping and wishing for bags with wheels!

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Photo Attribution: By Pedro from Album, The Wanderings of Jeremiah, “Pack Mule in the Sanctuary Trek”

Somewhere along the way through the second major bout of Christmas shopping, a bright idea popped up, inspired by my second shopping trip of the season without a pack mule (aka, willing family member) to go along and carry my bags.  Where did reason and sanity go?  What would cause a gal like me with lupus arthritis to walk the mall for four hours shopping alone?

Between Penny’s and Dillard’s, while still only carrying 2 heavy bags, my memory cleared about why Kohl’s is my favorite place to shop for “stuff.”  They have shopping carts!  As my number of bags increased from store to store, so did their weight!  Pretty soon I was wishing I could just pile them on a skate board and pull the contraption behind me with a rope.  Where were simple, primitive wheels when I needed them?

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We are still carrying our water, today!

I mused as I trudged along through the mall quietly humming Christmas carols to myself.  There is nothing civilized about being a beast of burden bearing all my heavy packages.  It seems I remember learning in my childhood history class that being civilized meant people didn’t have to lug heavy stuff by hand from place to place like human pack mules

I paused to stop and think about it for a moment, while I set down my bags to rest and reposition!

Civilization – that means no carrying water and no carrying heavy items for miles to just to get them home.  Yet, how is it that we buy our water in bottles and have to lift and carry it home in gallons or cases of small bottles?  I thought we were supposed to have clean, safe water running through the pipes in our homes.  How is it that we drive to a place to shop where we have to carry everything for a mile or two, to and fro in the mall, before we can finally put it all in our car and take it home.

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Maybe carrying on my head would be an improvement!

For a few minutes, I even pondered whether it would be easier to carry all the bags if I put them in a large basket and balanced them on my head. I remembered seeing pictures of indigenous people from far away lands doing that.  By the time I was done shopping, I had a purse on one arm with two large bags, and three large bags in the other hand.  Fingers, wrists, elbows, shoulders all complained at the weight of their burden.

But, my musings made me smirk.  Were any of the other shoppers around me pondering the uncivilized aspects of Christmas shopping?  Probably not!

At one point near the end of my shopping trip, I briefly considered dragging the hefty bags on the ground, but decided that they might wear through and damage the gifts inside and chuckled at myself.  I thought the better of it, but must admit, the thought was temporarily tempting!

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Here I sit musing… it is almost Christmas!

So, done with my evening’s shopping, here I sit tonight at home, musing over my Bing search engine results for “shopping bag with wheels.”  I have learned that the same item I was wishing for can be purchased for anywhere from about $10 up to as much as one I saw for $500!  A modestly priced rolling shopping bag would seem to be a wise investment for someone like me with lupus!

Here are some examples of rolling shopping bags (and links to where I found them) that I am considering before my next major shopping trip:

  • Bag #1 – Looks big enough for today’s shopping trip
  • Bag #2 & Bag #3 – I saw this in purple and lots of other cool patterns, but it cost more than the others
  • Bag #4 – I liked the expandable feature and the price
  • Bag #5 – On E-Bay for a moderate price, and even comes with Butterflies!
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Bag #1 @ $20.00

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Bag #2 @ $25.00 to $35.00

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Bag #3 @ $25.00 to $35.00

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Bag #4 @ $10.00

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Bag # 5 – On E-Bay @ $23.00

Now, there are only a couple of shopping days left before Christmas, and I am getting excited about the prospect of time to spend with family to visit and reflect together on the true meaning of Christmas.

A couple more stocking stuffers to buy, gifts to wrap, the house to clean and goodies to prepare… I can hardly wait, Christmas is in the air!

Lupus and Getting into the Spirit of a Christmas Shopping Safari

Today was hair day!

Today was hair day, and there was a two-part plan!  First, it was time once again for the every eight week ritual of shampooing, hair dye, scissors, a blow out and great conversation during the session of hairdo taming and transformation.  Despite lupus and the handfuls of hair in the drain after every shower, there is a lot of thick hair left for the stylist to work with, arguably a lot more even than most people without lupus.

So, because of all that over abundant hair, there is a lot to dye, cut and dry. Time in the salon usually is measured by half-days and not just a couple of hours, but always at least three hours.  It takes a patient hairdresser like Rosa to handle the work diligently, especially after our recent shift to thicker oil-based hair dye.  It takes longer and requires smaller sections of hair for coloring the roots properly.

Manicure recovery time!

Today, since it was Christmas week, the hair appointment stretched on into a visit the nail tech Stephanie. Pulling out a personal bottle of shimmering red polish from my purse, and requesting a basic manicure and polish change to replace chipping remnants of last week’s manicure, salon time extended yet another hour.

This was nice!  Aching knuckles were soothed by a soak in warm water, followed by a gentle hand massage (by far, the best part of any manicure.)

Emerging from the salon into the adjacent department store, it was now time for part two!  Justifying browsing through the dress section with the need to allow polish to dry and cure before driving home, then set out on foot in the opposite direction from the parking lot.  A safari adventure had just begun, venturing out into the wilderness of a  mall at Christmas!

More than two arms could hold

There were restless natives everywhere, searching through dense racks of hanging garments  Soon, the idea to finish Christmas shopping pulled me on through uncharted expanses of the wilds of sale ridden shops and kiosks.  The natives scurried to and fro every direction around my path, carrying burdens and parcels to unknown destinations and homes.

Finally reaching the oasis of Macy’s department store, soon all the sought after fruits of diligent foraging were added to my sacks.

Eventually, the weight nearly exceeded the load two arms could hold, and with one sack in each hand, they were slung over each shoulder and carried the remaining part of the journey much more comfortably in double back-pack style.  Lupus arthritis began to pull and weigh down each step, and soon feet were dragging along in a weary, exhausted cadence.

Oh no!  The painful realization hit that my car was parked at the complete other end of the mall!  A series of slow deliberate steps led all the way back to the salon and then the car.  It seemed like it took forever.

Safari was over, the desired trophies all stowed in the trunk, and a weary wanderer seated safely in her little car, headed home to a waiting husband and easy chair.

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