Lupus fatigue midst the hope that springs eternal

Hope midst lupus flare

Hope springs eternal, and so it must be for me with my lupus.  Over the past few weeks, I struggled daily with overwhelming fatigue and bone-tired exhaustion from a long, low-grade lupus flare.  Discoid lupus rashes have popped up on my scalp, fingers and expanded in size and aggravation where they already were stubbornly persisting.  Mouth and nose ulcers, and lupus rashes in some very unusual places, such as the opening of my ears have emerged anew.

My job has suffered, while many days  I was only able to work half-days and was struggling to fulfill work responsibilities.  It has been a challenge to feel hopeful in the midst of such weariness.

Hope is still there

However, hope is still there, deep down, flowing inside me through a place far below the surface of the flare, ever-present and encouraging.  Hope.

Hope that tomorrow will be better, that increased steroids and today’s Benlysta infusion will shut down my flare, and that I will do better in my work again soon.  I must persist in my hope that I will be able to better meet the needs of my family again, that I will feel like cleaning house, maybe even as soon as tomorrow.  I have abiding faith and hope that God will enable me to get my eyes off of myself again to look outward instead of focusing inward so much, as I unfortunately have been doing of late.

I am convinced that hope and faith do not look down, backward or inward, but rather upward, forward, and outward.

Hope looks upward, forward, outward

Hope depends upon faith.  Faith in someone or something bigger, stronger, wiser, more powerful than myself.  There is no question now that this someone on which to direct my faith is not me.  Hope comes from faith, and the ability to relinquish and invest my trust into that one I have faith in.  My ultimate source of all hope is  the Lord, for He alone is greater than my finite mind can comprehend — in his vast wisdom, love, mercy, power, strength and so much more.

I can trust Him, and I can trust that these things that He permits (not causes) to come into my life because of lupus, such as this month’s weariness, will not always be the way they are today.

Infusion and hope

So, I hope.  I sit here at the infusion center with Benlysta flowing into my veins, and hope.

My flare will ebb, my rashes will be relieved, my strength will return, my medications will work, and I will be better tomorrow than I am today.  I will choose to have faith, to trust, to have hope and look up, not down.  From deep within me where God himself has graciously touched my heart, I know joy welling up and arising through my weariness.

The joy of the Lord is my strength, and my joy will be greater than the flare and weariness of today.  Today I choose joy, not because of how I feel or because of fair weather, but because of the One in whom I trust for tomorrow.

Choose hope. Tomorrow the sun shines!

All day a fierce late winter storm blew through Arizona.  I traveled down the freeway to the hospital in a driving afternoon rain, with windshield wipers slapping back and forth in a sloppy rhythm.  The downpour drenched my clothes in the mere 30 steps from my car to the hospital front doors.  The nurse greeted me with a warm welcoming hug, but I gave a decidedly damp one in return.

Although it rains, and my joints hurt and I am tired, I still have hope and believe.  Tomorrow, the sun shines!

Today, in my lupus flare, weariness and pain, I choose to rejoice.  I choose hope.  I choose joy.

Lupus Fatigue and Finding a Fighting Spirit

A tidal wave of lupus fatigue.

As I stand barefoot on my cold, wet beach and watch the receding tidal wave of lupus fatigue ebb away from my shore, I see surrounding me the vast lifestyle devastation the overwhelming flood of tiredness left in its wake.  Mayhem is everywhere.  Laundry sits unfolded, dust accumulated, real and junk mail sit in an unsorted stack overflowing my desk, and my rugs and floors are looking pretty sorry indeed! All around is a general sense of disordered clutter and mishap.

While seeking a means to withstand the exhaustion and bone-tired feelings, all my work seemed half-abandoned at home and at the office.  I spent many days sleeping until noon, some days telecommuting, some days lounging in pajamas all day, a few days going in for half-days, but braved only a couple of full in-the-office work days.  The siege of fatigue waters have left an unkempt landscape about me as my physical weariness finally begins to recede.

Domestic and professional
disorder after a flare

Once again, I begin to pick up the scattered domestic and professional pieces of my normal life following a lupus flare.

Although this flare has been quite disabling and my lupus arthritis was very aggravated, I am thankful that neither my central nervous system lupus nor neuropathy flared.  Through the last couple of weeks, these often clear manifestations of my lupus have remained unusually quiet, and for this I am grateful.  At least, this was not an all out every system lupus attack, it was merely physical and not mental.  The only predictable thing about lupus is its unpredictability.

Hope and snow yesterday!

I had hope yesterday and even more this morning that my two-week flare of lupus fatigue is finally ending.

Yesterday brought a massive real weather storm to Arizona, and parts of the Phoenix valley saw snow, sleet and hail – a rare phenomenon in our desert city!  I stood on the second floor balcony at work with co-workers, as we held our hands out to catch and look at the soft white substance that melted on our hands and accumulated on ground below.  My son-in-law, a native Phoenician, regaled us last night with a report of his first experience driving in snow.

Although we had heavy rain and icy forms of precipitation all day long, I was feeling measurably better and was able to work a full day at the office.  My joints were still very sore, but my spirits and energy were on the rise.

Birds, singing in the rain!

This morning, as I hear the birds singing outside my window, I feel a little like joining them.  Perhaps a couple of the areas of disorder that are now beginning to bother me will get tackled this morning. Earlier this morning, I stood outside in the 48 degree morning chatting with husband while his rain-soaked car warmed its engine and dripped into the puddles on our driveway. The cool, moist morning air felt refreshing today instead of wearying.

With near exuberance I heard myself proclaim, “I feel almost like myself again.”

We will rejoice and be glad

Indeed, every storm has an ending, and today, I have once again found my fighting spirit!

I am just now reminded of the scriptural words I sang to a simple hymn I played yesterday morning at the piano.  “This is the day that the Lord has made, we will rejoice and be glad in it,” Psalm 118:24.

The Week after Christmas, with Lupus in flare!

The week after Christmas, with lupus in flare!

It was the week after Christmas and all through my home,
All the dust has been stirring as I walk through each room.

The stockings are still hung by the chimney, its clear,
that by this time of year, the mantle should be bare!

But I’m still exhausted and my lupus is in flare,
If all the stuff’s still up, I just don’t really care!

Until out in the driveway there arose noisy chatter,
then a knock at the door, it was my husband’s mother!

And on what do her wondering eyes fix and peer?
Christmas decorations still up, long after the New Year!

Down tinsel, and snowmen, and poinsettia in bloom,
It’s now time to de-decorate all over each room.

From the eaves of the house to the stuff on each wall,
Dash away, put away, stash away, all!

By Lupus Adventurer
Copyright 2013

Post holiday care for a major lupus flare

Happy birthday, sweetheart!

Awaking on my birthday the morning after Christmas, my husband was plying me to enter the morning with fresh brewed coffee.  What could be better at 7:00 a.m. than fresh gourmet java?  After greeting me with a sweet good morning kiss and ”Happy Birthday, sweetheart,” he agreed to my groggy suggestion of where he could find the Christmas leftovers to take with him to work for his lunch.

Soon, he had headed out to work while I sipped half of the hot cup of coffee, and after setting down the partly finished cup, I rolled over and snuggled into my pillow to catch a little more sleep.  After all, I was entitled, it was my birthday!  One more hour would be just what the doctor ordered for my groggy grey matter.

Going for the steroids

Five hours later, I stumbled out of bed toward the kitchen, gasping when I saw the clock face on my stove read 12:07.  I had slept until noon!  The only trouble with sleeping in was that I was supposed to have been to work by mid morning, earlier than it was by then.  I stood there for a moment, and was in a deep state of mental cloud with whopping all over lupus symptoms. I was I the middle of a major post-holiday flare of my CNS lupus.  A not so welcome birthday lupus adventure!

Downed meds with more coffee

I went straight for my morning meds and some extra prednisone, downing them with a cup of fresh brewed coffee from my new Keurig coffee maker.  While it might seem like I should have been fully rested after fourteen hours of sleep, I was everything but refreshed.  I felt completely exhausted!

a quick email to my boss

I sat down at my desk and wrote a quick email to my boss explaining the all too clear truth, and set out to quickly recover the rest of my birthday and work day.

Within just over an hour, I arrived at my office but was still stumbling mentally through my responsibilities.  I had brought goodies with me to share with the skeletal group who staffed our office in the days between Christmas and New Years, and they helped me indulge in my favorite triple berry birthday pie and a plate of Christmas sugar cookies.

Except for the three high points: my husband’s good morning kiss, co-worker birthday greetings and berry pie, it proved to be one of my toughest half work days in recent history due to the extreme activity of my lupus, attacking brain, joints, and just about every other part of me.  My evening however ended on a high note, as I arrived home to a message that the kids were bringing home dinner.  We shared a quiet birthday take-out dinner from a local pizzeria with my husband, daughter and son-in-law.

Taking care of lupus flare

Each morning since, my lupus symptoms have been a little lessened, and each day I have dropped the prednisone dose by a couple of milligrams.  It will take a couple of weeks to get back to my normal five milligrams per day maintenance dose.  Although I have ambivalent love/hate for the steroids, there is no choice but to take them when my lupus flares that severely and suddenly.  The only real option is to burst with prednisone to take care of that kind post-holiday lupus flare.

Unfortunately, the extra sleep had not been enough to prevent it, but a timely burst of steroids can shut it down.  I am grateful my doctor prescribes extra prednisone for me to have on hand for quickly controlling flares just like this.

Lupus and the irony of sleeplessness

Exhaustion and sleeplessness

Exhaustion and sleeplessness – two contradictory problems that stem from lupus when it flares.  The irony is that lupus brings on neuropathy pain and deep bone and tendon aches to my body in the midst of those nights when I am already exhausted and desperately need sleep the most.  Sometimes, on nights like last night, I take pain medication in the hopes of quieting the pain enough to sleep, and knowing the medication should also help knock me out.  Last night, I was resting physically, laying still in my bed, but the mental rest of sleep eluded me entirely.

jealous of those who slept

Morning neared as I heard the grandfather clock strike five o’clock.  I quietly listened to the song birds begin to stir in the predawn darkness, rustling in the lemon tree outside our bedroom window.  I was motionless and sleepless next to my sometimes snoring, slumbering husband.  To be honest, I felt intensely jealous of his ability to fall deep into restful sleep, while I stared at the dark ceiling awaiting the first rays of light.  Soon, there was chirping and some short bursts of morning bird song and cheerful chatter.  Even the birds made me envious!  I knew that they, like my husband, had slept all night and were just now waking a few moments ahead of first light.  Their tiny avian body clocks were in good working order, but alas, mine was not!

slipped my toes into waiting slippers

As smoky first light began to slowly illuminate the room, my body began to respond to acknowledge it was morning.  I sat up, pushed back the covers and slipped my toes into the waiting purple slippers on the hardwood floor.  Scuffling out to the kitchen, I accepted my weary plight.  Morning had now broken and I was completely and utterly exhausted.  Slightly brain-dead and concerned about the tendency of my CNS lupus to flare in the wake of sleep deprivation.

No time left for sleeping

There was no time left for sleeping and slumber, since my day was going to march forward whether I was rested for it.  Soon, we would be breakfasting with our son, daughter-in-law and their four little ones.  Today, I am determined to stifle and rise above my exhaustion, counting on the adrenaline of joy to fill my precious moments with our visiting grandchildren.

the joy of the Lord is my strength

Thanksgiving week is set out before us, and we are blessed with our out-of-town loved ones visiting.  Today, although I would love to be fully rested to enjoy them with full energy and bounce, I will make do with what energy reserves are left over from yesterday mixed with a bit of “faking it.”  The irony of wanting and needing sleep, and not getting a drop is not going to erode the blessings of the day and week ahead.

My thought for the day comes from one of my favorite Bible verses, Nehemiah 8:10, “the joy of the Lord is my strength,” and today God will have to be the sole source of my sustenance and power.  Sleep may have been lost to me, but this day it shall not take my joy with it!

Lupus and the chat between me and my latte

craving a mocha latte

At mid-afternoon I was craving a mocha latte, and set out on my break for the coffee shop on the first floor at work.  In between my office and my intended destination, I ran into a gal from another department who also has lupus. It wasn’t too long and I almost felt like I was having an out-of-body experience.  Who would believe all the stuff that we were talking about, unless they were in the know about lupus?

To the unprepared person, the nonchalant way we discussed the day-to-day issues of lupus as we caught up on the recent condition of each others’ lupus adventures could be a little daunting.  It dawned on me that to the casual listener or passerby, our reality with lupus might seem utterly unbelievable and unreal!

utter fatigue from l upus

First, there was discussion of fatigue and how utterly exhausting my friend was feeling.  Then the encouraging thought that all of us lupus patients feel that way quite often, and it should not be alarming.  Then, a discussion of shared digestive issues  (I know, T.M.I.) that are so utterly disruptive to social life, and yet we have resigned ourselves to accept and live with the imposition of this lupus-caused discomfort and indisposition without warning.

impact of exercise on lupus

Next, we were chatting about exercise and the positive impact it as upon joint pain, circulation, tendon health, emotions, etc.  Followed by a detailed discussion of the narrow exercise options and restrictions we face: no sun, no impact, and the need for slowly working up the duration and rigorousness.  We discussed types of equipment that seem to work, and those that don’t.

medications for lupus

Soon our conversation turned to current medications and treatment plans. The long list of drugs we each rattled off was enough to turn any passing head in concern and amazement.  Scores of medications, this supplement and that, and what the benefits have been from taking them.  We spoke about the results of various anti-inflammatory drugs we have used, and how we reacted to them. Of course, we didn’t leave out the chemo drugs!

doctors are people, too

At one point we compared notes on our rheumatologists and evaluated their bedside and office visit manner, and swapped stories about methods and strategies for achieving the most successful results from our visits with our doctors.  It was comforting to agree that they, too, are just people, and that applying some kindness and people skills in our dealing with them, coupled with frankness was always a good tactic.

talking about lupus with others

Eventually, my fried introduced me to a co-worker that walked up and joined into our conversation.  At first, I was not certain how much she might or might not know about the discussion she had happened upon.  I found myself feeling almost sorry for her, and somewhat obliged to move toward more generic conversation.  Speaking with her about the support of our employer for ADA accommodations for lupus was a good quick transition away from lupus patient chatter to more benign and inclusive workplace gab.

the foreign language of lupus

The arrival of the third person had suddenly made me realize from an almost out-of-body perspective how obscure and perhaps frightening the “foreign language” of lupus patient chat might sound to the uninformed outsider.  We take so much for granted that we have learned to accept about our lupus.  Lupus is not for the faint of heart, that is for sure!

I chuckled to myself about the litany of things I have become used to discussing in my lupus adventures and headed off to find the mocha I had set out for 15 minutes earlier.  Quite a chat between me and my latte!

Lupus fatigue and catching a cat… nap

 

Bone-tired lupus fatigue

Deep bone-tired fatigue is one of the ongoing challenges of Lupus, and coping with it sometimes requires a couple of simple, old-fashioned approaches. First, one the best things to combat fatigue is adequate sleep, and a second tactic is to catch a cat nap in the middle of the day. While this sounds simple and logical, moving these two approaches from goal to reality is sometimes more of a challenge than I expected!

Chasing Mr. Sandman

Chasing Mr. Sandman

Lack of adequate sleep is a major obstacle for many lupus patients, and I am no exception. Sometimes the pain from a throbbing lupus headache, intensely sore joints and ligaments, or deep bone ache in arms and legs can prevent my success falling asleep, or can suddenly wake me in the middle of the night.

My sleep is most commonly interrupted by either peripheral neuropathy or deep increasing limb pain, accompanied by growing malaise that breaks through all the levels of sleep to wake me. This type of untimely alarm often cuts my sleep in half and contributes over several days to accumulated sleep deprivation, a major cause of my fatigue.

I have a few readily available sleep strategies to deploy against lupus pain:

1. Prayer on my pillow, asking God to help me rest and sleep, and focusing on worship to take my mind off myself and my pain, seeking peace that only God can give. Sometimes I can successfully slip back into sleep while praying.

2. Taking over-the-counter analgesics such as Tylenol to cut the pain enough to permit sleep, sometimes effective but often not enough to do the job.

3. Increasing natural levels of L-tryptophan by combining warm milk and honey with decaf tea as a middle of the night latte.

4. Exercising with midnight yoga or stationary cycle to increase circulation and alter my metabolism. Exercise can help interrupt pain and raise endorphin levels to naturally reduce the perception of pain. Although exercise may make it hard to get back to sleep, it can help interrupt or greatly reduce my pain.

5. Taking a hot bath or shower to relax and lower the pain perception sometimes helps.  Warm water can be a soothing comfort, and is especially effective at lifting overwhelming malaise while partially relieving pain. Sometimes, I can even fall asleep in a bath. If I set a timer I can keep from waking up a couple of hours later in a cold tub of water. Often, a warm bath gives enough pain relief to allow me to relax and slip back between the sheets for a little more sleep.

Sleep techniques for lupus pain

6. Taking stronger pain medications or narcotics will usually overpower the pain and allow sleep.  Strong pain killers are a bad idea when there is inadequate time for the medications to wear off before I have to leave in the morning. Driving with drug induced (or any known cause of) mental impairment could be a dangerous crime!

I have not yet asked my doctor for sleep aid medications, but may soon. Nonetheless, usually, one of the approaches above helps address my great need for sleep.

Catching the Cat… Nap

Catching the Cat Nap

When fatigue is overwhelming, and lasts for days or weeks at a stretch, another simple approach to get more sleep is to catch a cat nap in to middle of the day. Cat naps can make a huge deposit into my sleep account and cut the size of my overall sleep deficit. The sleep experts explain that it takes much less time to correct a sleep deficit than it does to acquire sleep deprivation. A few days of adequate rest in a row can completely erase a long-standing sleep deficit.

Usually, the only days I can steal time for a cat naps are Saturdays and Sundays, or days I stay home sick or telecommute. It is often hard to chisel out the time to cat nap. On days when I am home spending precious time with family, taking time out to sleep in the middle of the day can seem like an intrusion into quality time with loved ones. I am grateful that my husband is often the one who first observes and identifies my extreme fatigue, and encourages me to get strategic cat naps. He constantly encourages me to get enough sleep.

Getting enough sleep can greatly contribute to my overall health with lupus. A tired body is less effective modulating immune responses, and is more susceptible to the effects of lupus. Sufficient rest can provide greater strength to face the adventures and daily challenges of lupus.

I think I’ll go catch some Z’s!

 

Lupus and the first rolling shopping adventure

Christmas in April?

Christmas shopping is a funny topic in April, but as I was thinking about firsts with lupus, I realized that my first rolling shopping mall trip was one of my most memorable lupus firsts.  Many years ago, when Christmas was approaching, I had to face the fact that shopping and the mall had been my absolute last priority, as I struggled through an intense long-lasting arthritis flare of my lupus.  Walking was extremely difficult because of swollen and painful feet, knees and ankles, along with overwhelming bone-tired fatigue.  Because my husband had never done the Christmas shopping alone without me, he devised a plan to accommodate my severely narrowed physical abilities and endurance.

Arriving at the mall, we approached the customer service kiosk as my husband informed me he wasn’t going to let me wear myself out shopping.  Dismissing my protests, he spoke with the mall staff and checked out a wheel chair.  Pointing to the seat, he said, “let’s go for a ride.”  It felt uncomfortable at first sitting and depending on him to push me around.  I struggled with the strangeness of my new mall perspective.  Sitting at a lower eye level than standing, it was reminiscent of walking beside my mother with my hand in hers, and not being allowed to walk around at will.

View from the wheelchair

There was an uncomfortable feeling of frustrating helplessness.  I had to tell my husband each time I wanted him to take me closer to something, and when he was looking at something, he would push me just past it, with my back to what he was looking at.  It took awhile before we communicated well about how the wheel chair was changing my shopping experience.  I didn’t like that we were not walking hand-in-hand as before, but rather he was behind me and often didn’t hear what I said.  I was along for the ride, and I certainly didn’t feel like I was in charge!  I didn’t really like it.

However, shopping from a rolling perspective was also a great relief because of the extreme fatigue and pain my lupus caused, in or out of the wheelchair.  As we gathered many purchases, I soon had a full lap and was competing with the gifts for space in my wheel chair.  By the end of the trip, I was exhausted, and greatly appreciating the wisdom and leadership my husband had demonstrated when he insisted on carrying out his plan to keep my strength.  I realized in retrospect that I would have been absolutely unable to endure the shopping trip that we had enjoyed that day together, spanning many hours and every corner of the mall.  I had to acknowledge how much my lupus was disabling me.

Others helped me get around

This was not the last of my rolling shopping excursions.  After that, most of my other shopping trips in malls, departments stores and grocery stores were from a wheel chair for a while.  For the next three years or so, my lupus continued its exhausting, crippling flare, despite the cancer and transplant chemotherapy drugs I was taking to control it.  My lupus even progressed to where one Christmas I didn’t go to the mall at all, and all my shopping took place from my home office desk chair.  That year all our gifts were ordered over the Internet and delivered to our house.

It was a full four years before I eventually ventured briefly into a shopping mall again on foot, and almost a full ten years before I was able to stroll through a mall from one end to the other on foot.  Even now, I have to carefully consider my footwear and stamina when planning to go to a shopping mall.  Often, I strategically plan to visit one shop, parking near by it to cut my walking distances.  After treatments several years ago with infusions of the biologic drug Rituxan, my lupus never returned to its earlier severity.  Although it has been many years since I had to do my Christmas shopping from the seat of a wheelchair, I will still never forget the adventure of my first rolling shopping trip!

Lupus, and life in the slower lane

Type A personality with a type C body

Much of the world moves at a breath-taking pace, and once that rapidness energized me.  Exhilarating, stimulating, exciting, competitive, challenging — bring it on!

Like most type “A” over-achievers, perfection and competition drove me to push harder and longer toward excellence.  It seemed I was ever raising my goal to do better and accomplish more.   Trying to be the best at everything I put my hand to accomplish, and never letting myself rest until success was achieved.

Type B smelling the flowers...

Somewhere along the way, lupus entered the formula of my life.  It ran counter-purpose to my inner drive and motivations.  Single-handedly it had a part in reshaping my humbled frame into a very different letter.  No longer able to push myself physically toward maximum performance, I have had to accept the limitations that are a result of accelerated cell death lupus causes in connective tissues.  I have limits, that are not compatible with the Type A person inside my mind and soul.

Now, the type “A” girl inside is trapped inside a type “C” body, so I guess that means I have morphed into a type B personality.  The inner girl never changed, and occasionally she peeks through, but the outer package and physical limitations brought on by lupus moderate my behavior and filter perception of me for the on lookers.

Lupus, and a new blogger’s description of overwhelming fatigue

New blog is a must-read

Yesterday, I had the distinct pleasure of reading a refreshing start-up lupus blog.

Rebecca, at the young age of 23, has captured the art of sharing her recent health experiences with captivating skill, spunk and energy.  Her new blog is a must-read for any newly diagnosed lupus patient, and quite heartening for any one of us “veteran” lupus adventurers.  We all remember what it was like to be where she is now.  Rebecca is very skilled at putting together the whole scope of the frightening first steps in her lupus journey, much of which she writes during a lengthy first hospital stay.

I absolutely loved reading the unique description of overwhelming lupus fatigue that Rebecca shares:

Dictionaries

“On my bad days I have come to describe it as DICTIONARIES. I wake up, and instead of getting out of bed, I lay there. Because it feels like I have 50 of the library’s biggest, fattest, dictionaries (1000s of pages) placed all over my body and I simply CAN NOT get up… or barely move.“

“Dictionaries” will now forever be part of my own lupus vocabulary!  Visit Rebecca’s blog to read more from her at http://melivingwithlupus.wordpress.com.