M.E. and the Brain

a9d3ddd404310204391660f87425d980My brain does not function properly.  I’ve written before about the difficulty in retrieving words and processing information, all symptoms of Myalgic Encephalomyelitis.  Another bi-product of inflammation on the brain, or perhaps it’s the nervous system, is that my mind locks on something and won’t let it go.

Typically, during the day, I can distract myself; it’s the nights that are brutal.  Three nights now I have been unable to sleep.  Just as I can overstimulate my muscles and cause damage the same is true for my brain.

It’s as if I have these internal electrical storms.  An idea fires, sets off an emotional spark, ignites a psychological tempest.  It doesn’t matter what the issue is – how big or small – the result is the same:  the replay button gets stuck on go.

We’ve been stationary these past three days waiting for the cold front to pass.  I’ve used that time to sort through photos, catch up on some writing, paint, and finish a book I’ve been listening to on audio.  I haven’t had any physical exercise.

I thought the physical respite would be good, but I see now that physical activity is important, even if limited.  I need to give my mind a break, if not through sleep, then through meditation.  636027162121494433-1577018822_moderation1

As with all things in life, moderation is key.  It’s a work in progress.

If you don’t hear from my for a few days – I am giving my brain a rest.


RV-Able: Down Time

th-2Hubby and I just woke up after a twelve hour sleep.  Unheard of for him, a blessing for me.  Both of us were beyond tired yesterday.

The weather here is only five degrees celsius, so we slept with our mattress heaters on and hunkered in under the covers. Cozy.

This place we are staying is for ages 55+, so basically a retirement community.  The majority of people go to bed early and wake up with the sun.  Totally unregimented, we do as we please, but then keeping up with the locals becomes a problem.  There is literally something to do here, all day, every day.  Activities start at 8 am and go through to 9 pm or later.  Of course, we don’t participate in everything, but we try to do some.

Mondays is our birding meeting from 1-2.  Tuesday is my painting class from 9:30 – noon.  Wednesday is Camera Club at 3 and then cards at 7 pm.  Thursdays, I am usually crashed, so it’s a good day for Ric to do groceries, or get the washing done.  Friday, the birding group ventures outside the area in their quest to sight more birds.  Saturday is cards again, and Sunday – it’s usually another crash day.

th-3At home, we might have one or two social commitments a week, and that was enough.  I fear I’m stretching myself too much.  Knowing how much is too much is touchy with ME/CFS.  I don’t want to slide backwards.

So today, I’ll stay hunkered in against the cold, and lay low.

(Today’s prompt for The Daily Post is cozy.)


Horizontal Champion

Sleeping in was a sin in my father’s eyes.  Even as a teenager, no matter how late we’d been out the night before, if we weren’t up with the sun, Dad would treat us to an icy face wash.

The early bird catches the worm!

Laziness was not tolerated either.  If we were ever caught lounging, we’d get:

What is this?  The Horizontal Championship?  Get up and do something productive!

So, I grew into an early riser, don’t-sit-down-till-the-works-all-done adult.  Admittedly, there were many advantages to this lifestyle:

  • Waking before the rest of the household was golden and highly productive time – no distractions!
  • I was already trained for the sleep deprivation that comes with having babies.
  • I would get more done in the first two hours than most people did all day.
  • I gained a reputation as a dependable work horse.

Notice how I used the past tense above?  That’s because ever since ME/CFS came into my life, all my sleep conditioning has gone out the window.  Now, my days are primarily defined by horizontal time, as vertical efforts are exhausting.th-5

If I am able to fall asleep before midnight, the night will be restless and deep sleep doesn’t typically kick in until closer to morning, usually just as my husband is waking up.  This is the point where I start fighting with myself, Dad’s training kicking in. (I wrote about this struggle in the poem Harmonics.)
The thing is, sometimes in life, we just to have to unlearn what we once thought was gospel.

According to the Treatment Center for Chronic Fatigue Syndrome (CFS), 10 – 12 hours of sleep plus naps are recommended every day until the patient’s energy levels are restored to a 6 on the Energy Index Point Score.         

I fluctuate between a 3 and 4 on the EIPS and tend to sleep between 4 – 7 hours a night, which is a huge improvement over my previous record of 3 -5 hours. Although I spend a great portion of my day in bed, napping doesn’t always happen.  th-4

CFS, or Myalgic Encephalomyelitis, as my doctor prefers to call it, is characterized by systemic exhaustion after any exertion.  Whereas a healthy person can recharge with sleep, patients like me do not.  Our battery is always depleted – think opposite of the Energizer bunny.  It makes sense, therefore, that extra Zz’s are needed.

Bottomline:  despite all my early training, I am no longer in the worm catching business; I am, instead, aspiring to win the Horizontal Championship. (Sorry, Dad.)



Never Sleep With a Laptop

Went to sleep with my laptop by my side.  Big mistake!

Casually pushed it into the spot normally occupied by my husband, but as he is away, it was so easy to do.  Didn’t give it another thought.

Never imagined that an object, so inanimate, would nudge me all night, invade my dreams and plea for contact.

Gave in at five a.m., and published that poem that had been lingering from the day before.  Pushed it away again at six thirty, tried to sleep, but it kept prodding, begging for more.

I turned my back, and it started to whisper:  “Check your post results.”  I pulled the covers over my ears and hunkered down deeper in the covers.

“I just need sleep!” I might have yelled.

And just as sleep came, its sweetness enveloping me, I was awakened by insistent loud banging on the door.  I rallied myself out of the fog, threw on a robe and peeked out beyond the blinds.  Nothing.  Checked the front door. Also, nothing.  Came back to bed, saw the computer lying there, looking so inert and exiled it from my bed.

After I wrote down my dreams, of course.


(Image from:  moshlab.com)