RV-Able: Misses and Gains

FaceTime, phone calls and videos exchanged cannot replace in-person chats and hugs, especially when the recipients are grandchildren.  I miss chasing eighteen-month-old Auggie around the house, or cuddling with Sloane to “watch something”, or exploring the million why’s of Finn.  I miss my grown children, family and friends whom I value deeply.  Homecoming, I know, will be emotional and overdue.

Palm treesI do not miss the cold of an Ontario winter, how the weather creeps into old veins, cramps muscles and exacerbates pain.  I don’t miss being homebound for days because my walker won’t glide through thick slush.  I don’t even miss the home we sold and left behind to expedite this journey.

There is much to be gained in daring to venture, to risk pushing beyond the boundaries of routine existence, to drive purposefully into the unknown.  Stripped of the stresses of debt and schedules, Ric and I are experiencing each other in a way we never could before:  we are free-spirited and finding that laughter comes more easily.

We are discovering new vistas, reveling in the small moments, like scrumptious food, or the sighting of a new bird, or the marvels of how many varieties of flavoured potato chips Lays offer in the U.S.

Mostly, minus the distractions of everyday life, we have time to commit to ourselves, to developing new passions or deepening old ones. I am writing more, and have enrolled in painting lessons.  Ric and I have started birding.  He is revelling in tinkering about the motor home, learning the ins and outs of RVing.  We are focusing on making healthier choices, caring for ourselves.

As in all aspects of life, it is people who make the difference.  We have enjoyed meeting new people and the highlight to date is meeting a fellow blogger in person.  Jazz of Steps and Pauses and I hit it off immediately online, and were pleased to find that the connection continued in person.  We spent a lovely afternoon with Jazz outside of Austen, and hope to meet up again along the road.  IMG_0181

I am confident that home relationships will endure our absence, and even more certain that this adventure of ours will only better our lives.  Every day, as the landscape changes, and our health permits, I give thanks for our good fortune and the blessing that is my husband, for who else would have conceived of taking a chronically ill woman and loading her into a 40 foot motor home and driving her around the continent?  He has given me the power to define myself as something other than useless (my word) and I love him for it.

RV-Able: A Question of Wellness

“I had lunch with some of your old colleagues yesterday and we were talking about you.”

Never a good start to a conversation when your relationship to the mentioned parties ended the day you stopped working.

“Oh, who?”

The people mentioned are acquaintances, only one actually worked with me and it was before ME/CFS struck.

“I told them you are heading for Texas.  We all agreed you must be doing much better to be able to do that!”

What is it about this conversation that riles me so?

First, I’m pretty certain not one of these people actually has a clue about my disease and what I go through on a day-to-day basis.  They know as much about my personal life as I do theirs – nil.  I would love to have tea and share experiences in person, (haven’t heard from most of them since disappearing from the work place) just please don’t make me the subject of your chats with others.

Secondly, it’s one thing to have someone tell you face to face that you look well, but to assume I am better without knowing all the facts – well, that makes you an ass, as the old saying goes.

“The big push will be to get you back to work,”  I remember my doctor telling me. She went on to say that work is the last place one needs to go when recovering from a long-term illness.  Social interaction is especially important to help normalize again, and then when able, to travel.  Work is so much more stressful, and despite what insurance companies want us to think, does not add to quality of life which is so essential for healing.

That none of these able-bodies individuals understand that, I get.  From their viewpoint people on disability get to lounge around all day and do fun stuff.  (I’ve sat in so many meetings where I’ve heard this about those away on long-term disability, as if being ill is something to desire.)  What infuriates me, is that the messenger, a so-called close friend, hasn’t even spent any time with me in nearly a year, and yet, she is making a pronouncement about my condition.

I cut the conversation short, of course.

“She says I must be so much better,”  I tell my husband when he asks about the call.

“Twenty percent,” is his response.  “You are maybe twenty percent better.”

Deciding to sell our house and live full-time in a motor home is my husband’s creative solution to managing my disease.  Together, with input from my doctor and psychologist, we have developed a plan to embrace life despite the challenges we face.

th-2I still have ME.  I still struggle on days to get out of bed.  My legs continue to give me problems.  My brain doesn’t work right.  Some days I feel worse than ill and pain is out of control.  I have to watch what I eat and how much stimulus I subject myself to, and despite all this, I’ve decided to keep on living.  Worse thing that happens is that I die trying.

I guess that’s too hard of a concept for others to understand.  Easier just to pass judgment.




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.)



Blame It On Maugham

I blame it on Somerset Maugham – that summer somewhere around my sixteenth year, when I immersed myself in his writing and found an argument for living impulsively.  Can’t say exactly what it was in his words that prompted this conclusion (the storylines lost in my faded memory), but I do remember being fascinated with the concept of the “Razor’s Edge”, equating it with the expression:


In retrospect, I glazed over the fact that a razor’s edge is sharp and the probability of getting hurt is 100%.  Such is the romanticized workings of a teenage mind.

In truth, I feared normalcy – never was a straight-line kind of gal – convinced myself that it was decisiveness, not impulse, that drove me; adopted a what have I got to lose attitude.

It is cruel to discover one’s mediocrity only when it is too late.

– W. Somerset Maugham,
‘Of Human Bondage”, 1915

Decisiveness convinced me to invest in a bookstore with no prior knowledge of the business nor any retail management. An opportunity presented itself and I jumped -book’s were my passion, after all – out of the proverbial pan into the fire.  Only months out of a ruptured marriage, and still in a state of shock, it felt hopeful to throw myself into something new.  In hindsight, I was grasping.

Excess on occasion is exhilarating.  It prevents moderation from acquiring the deadening effect of a habit.
– W. Somerset Maugham

What I failed to appreciate about opening a single proprietorship was the countless hours of work involved and how that might affect my single-parented children; not to mention that running a bookstore was a bit like living in a fishbowl:  with the full impact of my grief on public display.  Specializing in self-help and inspirational literature drew in a plethora of other wounded souls looking for comfort, and I was stretched beyond my limits.th-5I lost the store in the end; unwilling to let go when things were failing, I hung on until it dragged me under.  What I thought was following my passion actually mired my children in the travails of my misery.  I had deserted them in their crucial time of need, burying myself so deeply in reams of books and papers, pretending this was support.

The financial bankruptcy that loomed at the end was nothing compared to the emotional deficit I’d created in my children, and worse, the example I’d set that impulsivity is an acceptable life choice.th-6


Change is Risky Business

At one time in my life, Saturday nights were reserved for Trading Spaces and a glass of white wine.  th-1

I owned a bookstore at the time, and looked forward to unwinding at the end of a long work week.  Two out of four Saturdays per month, I would be alone, while the children visited their father.

Burned by a string of bad relationships, I had sworn off men, and thought my life was quite satisfying, until my then teenagers filed in one Saturday night and confronted my routine:

“Mom!  You can’t just lie on the couch every Saturday night and watch renovation shows!  It’s depressing!”

“But I like this show….”

“Seriously, Mom – if you don’t make a change, we’re not coming home anymore!”

Had my life really digressed so pathetically?   My children’s reaction made me take a closer look.  As a retailer, I worked long hours, which consumed much of my life.  When I wasn’t watching TV, I tended to have my nose in a book – mostly self-help oriented.  Perhaps my life did lack colour, but change is so difficult – where was I to start?th-2

I decided that for real change to occur, I needed to take a risk.  For eight years I had been carrying around a business card in my wallet with the name and number of an improv company who did Murder Mysteries.  Not even certain if they were still in business, I dialed the number and found out that they were holding auditions the following Wednesday.  Scared as I was, I decided to go through with it.  The audition was two hours long and within a week I found out I was in.

In the meantime, I had always wanted to take dance lessons, and I learned from a friend that a local bar was offering free salsa lessons once a week, so I put that in my calendar.

Being in a relationship was not an option for me at the time – it was a commitment I had made to myself – however; I did miss some of the things that came with being a couple, so I decided to start up a friendship club with the single men and women that I knew were not into dating at the time.   Amazingly, all it took was a few phone calls and my weekends were filled up with potlucks, movie nights, and bowling.  th-3

My kids had been right:  my life had become depressing; I just couldn’t see it.  Thanks to them, and the willingness on my part to take risks, life turned around.

Sometimes, when life starts to stagnate, we need to make changes.  What things have you done to break out of complacency?