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, limits and drawing the BIG red line

A key to managing lupus

In every lupus patient’s life, there are people around them who seem to be able to keep going and going without ever stopping, the energizer bunny folks!  We all know at least one of these people, and for most of us, when we compare our own lives to these active busy people, we sigh in weariness at thoughts of their schedules.  Lupus patients have limits, some of us much more than others, but perhaps the majority are polar opposites of our more active, constantly moving and doing acquaintances and friends.

People with lupus may have limits that affect their social life, and their behavior in response to those limits can affect family and social life and the outcome of health with lupus.  A key to managing lupus is to look at these limits squarely, head-on, and to come to terms with what we will do in response to the restrictions lupus places on our life.

Admitting you have limits

Limits with Lupus

The first place to start is by admitting to yourself that you have limits.  I don’t like having to admit I cannot do all the things that I want to do.  I really dislike having to say no to activities everyone else is doing but I am faced with the reality that I have different needs and limits.  I have a budget of energy and strength, and have to spend it wisely.  When the account gets overdrawn, and when I become overcome with bone-tired fatigue, a lupus flare is not far off.  It is important that I accept the fact that Lupus puts a very definite strain and burden on me mentally, physically and emotionally.

Where to draw the big red line?

The Big Red Line

A good next step is to prioritize the things I feel like I need to do.  This is important, so that I am prepared to identify a point in the descending list of responsibilities and activities where I will draw the BIG RED LINE (BRL)  Knowing what is most important helps respond to social pressure to go and do more than I should.  It gives me  a prepared psychological and verbal script to follow when the pressures come at me to exceed my limits.

In the past couple of weeks, I had to pull out the script several times, as there were some activities “everyone” in our social circle were attending, but they were well below my BRL.  Some things may be above the BRL one week, and below it the following, because life is messy and flexibility is required! The one predictable thing about lupus is that it is unpredictable.

Communicating limits

Limits and Social Life

One of the hard things is communicating to others about the BRL, especially when others expect you to do certain things.   Just yesterday, my husband and I ran into a couple we know at Costco, and before I knew it I was explaining that we were not going to the graduation party for our mutual friends’ daughter.  I ended up explaining my BRL and how my lupus forces me to cut out things I really want to do that are important.

Our friends were assuming that we were going, too.  But, not this week, we wouldn’t be there.  If not for respecting my lupus imposed limits, I would not have missed being with our friends that evening for anything!  But, after cleaning house, shopping and handling the rest of my essential family and household responsibilities, my budget of physical resources was exhausted.  I had hit my BRL without a penny to spare.

Peace with lupus-imposed limits

But, because of lupus, there are some social realities I have to face.  There will always be people who have unfair expectations of my choices about what to do and where to go, and they unfortunately expect their priorities to be mine.  They may never understand my logic and reasons for the times I do not show up.  They might not even deserve an explanation.  Yet, when I have certainty in my plan, and manage my activities strategically, I am prepared for the social pressure encounters with these people may bring.

I can have peace with my lupus-imposed limits, and freedom from false guilt about things below my movable Big Red Line.  With all my imperfections and the frailty of human life, it is good to remember that before our Creator formed us and breathed His breath of life into us, we were just dust.  We need to remember that we are but dust, and we need to keep from rushing ourselves back into that state.

I need to remember to choose with wisdom and forethought what activities will be above the big red line, but not blame anyone else for what falls below it!  I should not do more than God has designed my imperfect frame to accomplish.  In fact, less just might be more!

Lupus and a letter to my younger self

Lupus at sweet 16, but not diagnosed

Lupus at sweet sixteen, but not yet diagnosed.  You don’t know this yet, but in a few years you will be a young wife and mother, and will finally be diagnosed with lupus.  However, you will continue to have mysterious symptoms for another ten years before a doctor finally asks the right questions, and runs the correct blood tests to find the answer to why you are so sick.

In the meantime, please just keep trusting God on the days you feel bad. It is not in your head, you are not a hypochondriac, and some day you will have an answer and proper treatment. Until then, keep focusing on your blessings and hold onto the joy of the Lord in the midst of your rough times. The signs of lupus have already been present for most of your life, but the family doctor you have seen since you were five doesn’t know what to look for.  He has repeatedly tested you for rheumatoid arthritis and diabetes, knowing that your mom’s mother had both, in his attempts to try to find an answer to explain why you have had so many health problems.

Even when you had kidney problems and protein in your urine, he never figured out your recurring childhood “kidney infections” were really lupus. Someday you will understand and need to forgive him for what he doesn’t know.

5 year old feet

Remember when you were five, and your knees and joints became swollen and stiff for weeks, and they tested you over and over for rheumatoid arthritis?  It hurt so much to get up and down out of a chair that you cried, and cried?  They were trying to find lupus, but didn’t know what to do to find it. Not very long after that, you went through months of falling asleep in exhaustion in the middle of the afternoon, and the doctor put you on the diabetes diet, thinking it was blood sugar problems, even though you tested negative for diabetes.  They just didn’t yet suspect lupus!

Then, there was that summer when you were a couple of years older, you started getting round puffy red rashes the size of pennies on your face, arms and neck.  This was a sign of your lupus, too,  but the doctor only could describe it as a sun allergy.  He didn’t know to look for lupus.  Later on, you got more round red rashes on your forearms, and your mother thought they were ringworm.  Then you had deep red swollen patches of rash a couple of years after that all over your neck.  Still, probably more cutaneous lupus discoid rashes.

Later, remember another time when you were unusually exhausted for months, and your mom explained to you that the doctor had done blood tests that revealed you were extremely anemic?  Then, you took sustained release iron tablets for several years before your hemoglobin levels stabilized.  This might have been caused by lupus attacking your blood cells, but we will never know, because they didn’t test for lupus.

Summer after grade school

Later, in the summer after grade school, there were high fevers that made you hallucinate.  The doctors at the hospital never suspected lupus, even after searching in vain for a virus or bacteria they thought was causing the fevers.  Still, no lupus diagnosis.  Afterward, you felt bone-tired fatigue for weeks, and in your school pictures from 7th grade you had deep dark circles under your normally sparkling eyes.  Remember how you hid those awful pictures, because they made you feel like you looked like an old sick woman?

Then, a couple of years ago in middle school, they had another opportunity to find your lupus, but missed that, too.  Your sudden severe case of painful pleurisy in your lungs in the eighth grade should have been a clue for your doctor to suspect lupus.

All the migraines you have had since you were a little girl, and the painful mouth and nose ulcers you have had every few weeks from the time you were five or younger were signs and symptoms of lupus. I hate to tell you that you will have to continue having those oral and nasal ulcers for the rest of your life, every time your lupus gets ready to flare. They will become your early warning sign of another major flare ahead.

In a few years, a doctor will even try testing your recurring nose ulcers for cancer, but will again overlook having the biopsy tested for lupus.  I am so sorry to tell you that it will take a few more years and a couple more doctors before one finally figures out that the ulcers are a sign and symptom of your lupus that will eventually be diagnosed correctly.  It is going to take about ten more years.

Senior year of high school

In a couple of years, during your senior year of high school, you will be very sick from October until March. Your legs will ache, your vocal chords will tighten up and you will have fevers and lung infections. You will miss most of your school classes that fall and winter, and have a six-month long bout with what you doctor will dub a “pneumonic viral syndrome.”  During those months you take scores of antibiotics and other drugs, but continue to get sicker and sicker.  You will have no memory of Thanksgiving or Christmas from that year, and the rest of the time will be a foggy blur in your memory.  During those months you will first experience symptoms of peripheral neuropathy pain and nerve irritation in your legs, and you will lose your voice to laryngitis for several months.  The inability to sing will sadden your young heart and be one of your few lingering memories from that long season of illness.

During your second year of college you will experience a long lupus flare that attacks your central nervous system, and have difficulty for the first time remembering what you study. Midway through the school year, you will experience days of intense confusion and sometimes get lost on campus looking for your classes, and even forget your best friends’ names.  Your forgetfulness will have some rough impacts on several friendships, and neither you nor your friends or family will understand why. This will be a lonely scary time, but when you call out to God to be your anchor, He will remain faithful and give you courage and strength to tough it out.

Don’t be afraid of the uncertain years ahead, for in due time you will be one of the lucky ones.  In your fourth year of college you will meet and marry a wonderful man who suffers from asthma and epilepsy, and because he faces his own health challenges, compassionately understands you are facing an as yet unidentified health foe.  You will both share a deep love of God and music, and two solo singers will blend their lives into an amazing duet.  Before you marry, you talk about understanding when each other have the “gray days” when you feel off par, and know you will be able to encourage each other through them.

Young mother in car accident

Shortly after your two children are born, an answer will soon be in sight.  You will have some spinal injuries in a major car accident when you fly into the windshield, head first, and then go through three years of physical therapy.  In the aftermath of that injury, you body will have a hard time recovering.  Arthritis, tendon and muscle inflammation will become out of control, and eventually, you will have intense pain and immobility.  Some days, your knees will be too painful and weak to climb the stairs to your apartment, and your husband will carry you up the stairs.

Difficult to shop

Then, for days at a time, your hands, legs and feet will have so much swelling and intense pain that you end up sobbing by the end of shopping for groceries.  As the pain gets worse, you are eventually walking like an old woman, hobbling in stiffness and pain with every step.  You and your doctor will not at first understand why all this is happening, along with recurring bouts of round skin rashes, more pleurisy, sinus infections and other cycling issues that will come along the way.  Finally, your doctor will look at you one day and say, “you are too young for this,” and you will in wholehearted agreement exclaim, “I AM too young for this!”  In a moment of insight and inspiration, your doctor orders some blood tests that you have never had done before.

A doctor will finally understand it is lupus

A few days later, in excitement and near glee he will call you in to his office to talk!  You will hear the words, “if I am right, you will be doing hand springs in a few months.”  He won’t tell you what he found, but will send you to a rheumatologist he highly respects.  There will be many, many more tests and eventually you will begin receiving medications to treat you for lupus.

From that point on, your life will not be all smooth sailing, but you will always after that know that you are battling lupus.  Your doctors will make many choices along the way that maximize your health and keep you functioning.  You will be able to avoid disability and work a long successful career in law and government, and have a wonderful and fulfilling life.  You will live to see many decades of marriage, grandchildren and much more beyond.

A part of your journey but not in control!

Lupus will cause you many challenges in the years ahead of you, but it will not defeat you.  Your life will be at times a lupus adventure.  You will become strong and will be a victor, and lupus will just be a part of your life’s journey, unwelcome, but not in control.  Your faith and joy will not fail, you will rejoice in the blessings of life.