One Patient's Positive Perspectives

Posts tagged ‘Back to Sleep’

Lupus and the recurring visit of the sloth

sleepy sloth.htm

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 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!

 

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