Avoidance Therapy

I just want to sleep.

Situational, my therapist calls this type of depression.

Saw my family doctor this week, and she confirmed that the skin condition could be cancer. At best, it is a rare condition that will need specialist care. It is both itchy and painful, but there can be no treatment until the biopsy gives us a diagnosis. So for now, I put up with it.

The doctor also said that my blood work indicated something going on above and beyond the M.E. She sent me with an accompanying report to emergency, and for a moment, I was hopeful that I’d get some answers, but the blood tests performed at the hospital came back as normal.

I feel like a hamster on a wheel. Four years I went through this before being diagnosed with M.E. – traipsed from one specialist to another, all with no answers.

“You’re an enigma,” the emergency doc said. I’ve heard that before.

She did say she’d order more tests on an outpatient basis, so I’m waiting again.

Wake me up when someone knows something.

(Linking up to my weekly challenge: in-between.)

Nature’s Balm

Questions flood in as evening sets, the initial shock of hearing the ‘c’ word now wearing off. I sleep little, spending way too much time with Dr. Google, without any satisfaction.

Ric is scheduled to go into town a bit later, so I take the car early and head to a new trail in our town of many. Stonetown gained its nickname from the limestone quarry here. The mined holes have been filled with water and serve as recreational landmarks. The trail here is paved and extends along the riverside.

A pair of courting cardinals dip past as I exit the car, too fast for my camera, but just the sort of serenade I need to lift my spirits. Unsure whether or not my legs will carry me very far, I am happy to see many benches a long the way.

Birdsong fills the air, no doubt in celebration of blue skies – something that has been missing for a while. Woods and running water trigger a memory from childhood, and I feel suddenly comforted. This is what I needed.

I wander in one direction and stop in awe as a party of blue jays flocks over head. Can’t ever remember seeing so many together at once.

“Please stop,” I call to the birds, “so that I might get a picture.”

Silly, I know, and it is clear that they have a collective direction, but one does eventually oblige.

A shadow passes by, and I glance up expecting to see one of the turkey vultures that have been circling. A distinctive white head and tail skirt alerts me to a much more regal presence: a bald eagle!

Sadly, I’m too shaky today for any of my eagle images to turn out, but I am confident I’ll find him again. He continues to circle as I carry on, tiring quickly. I decide to have one more sit and then leave, but as I lower myself onto the bench I see a kingfisher perched on a branch not too far away.

Of course he is gone by the time I ready my camera. Kingfishers here tend to be elusive. My eye catches a pair of birdhouses and on a pole nearby the flutter of iridescent wings – swallows.

The swallows will be my last capture for this outing.

Time to go home and get some rest.

My heart is full of gratitude.

Shake Ups

The new year grabbed me in a choke hold and hog-tied me before I had a chance to even think about what it might bring. It started with a text that my mother was in hospital, followed by a harried searching of flights and anxious speculating about how I’ll get home. Me, who hasn’t ventured anywhere without an escort for over four years.

Needless to say, I made it, and even though my symptoms are flaring and I’m exhausted, I am also pleased by what this effort portends. Dare I hope for an even greater return to life?

It’s been four-and-a-half years since I was diagnosed with Myalgic Encephalomyelitis – the disease that severely disrupted my life. In almost imperceptible graduations, I have improved. This recent shake up seems to have pushed me over a line from which I can redefine myself (unless a setback is triggered, which is always a concern.)

Mom has rallied around and is currently stable. The woman is incredible. Although she says she no longer wants to live with constant pain and struggles, she keeps going – insisting on walking me to the elevator after my visits and taking her meals in the dining room.

“At least I know you love me,” she pats my arm. “No need to come back again should something happen.”

She’s more worried about me being inconvenienced than she is about her own health. Ever the mother.

I have no regrets about coming, and as cliché as it sounds, I feel as if this happened for a reason. I needed something to break me out of my comfort level and stir me up.

“It’s like I’ve been living in a bubble,” I tried to explain to Mom. “No noise, constant rest, limited interaction, and measured outings.”

“It’s not right, at your age,” was her response. “You’re young yet.”

It’s not how I ever saw my life going, for sure, always so active and involved. I wonder now if I’ll ever get some of that back.

2019 has accosted me and thrown me 1600 miles off-base, but I also have a sense that this is what I have needed to break up the waxy build up that has been molding me into an ugly complacency.

I am sixty, and if my mother’s legacy is anything to go by, I still have thirty years left of life. Time to start setting a vision for myself, I’d say.



RV-Able: Here We Go Again

4:15 a.m I am wide awake, my head full of what needs to be done before we  set out on our next adventure.  Ric is sleeping soundly, so I quietly close the bedroom door behind me and set about my business.

Outside the wind howls and as if in response, my right hip aches.  Yesterday we  loaded most of the essentials and even though  hired help did most of the heavy lifting, there was still much to be sorted out.  Ric and I were both exhausted by suppertime, without an ounce more of energy to spare.

As we finish our last minute preparations, the blowing snow turns to freezing drizzle – a bitter cold ushering us on our way.  The drive out of  town is hindered by poor visibility and drifting across the road.

“Should we wait out the weather?” I wonder aloud, but Ric is not to be daunted.  Within the hour, the roads clear and though the clouds remain  dominant, the drive looks promising.  

We’d driven this same route last year – crossing into the States at Port Huron, following the highway to Flint, then Lansing.  Last year, I was so sick, we stopped at Angola, Indiana, to get some groceries and let me rest.  This year, we sail past Angola.  Ric is motivated to get us out of the cold.  Snug in the passenger seat, I have no objections.

It is apparent that a snowstorm has passed through recently, and we thank  our luck that we’ve caught only the beauty in its aftermath.  



After thirteen hours of travel we arrive in Terre Haute, Indiana, where the local Walmart generously lets us stop for the night.  It is still below freezing.  Ric opts to sleep in the passenger seat, and I, needing a bed, curl  up with a pile of blankets, but cannot get warm.  We sleep fitfully for two hours, then Ric suggests moving on.  

“No, let’s stick it out here a bit longer.”  

It will be a long, cold night.

VJWC #2: Synchronicity Part I

An orange flash dipped in front of the truck, with no time to veer.  We arrived at our destination to find a Baltimore oriole embedded in the front grill.  I was heartbroken.

At any other time, the appearance of an oriole would be auspicious.  Usually showing up in pairs, these birds arrive in summer and bring with them such cheer.  This is the first oriole I have seen this year, and the circumstance is horrific.

sparrowmarkingsCall it superstitious, but I’ve always believed birds are messengers.  It’s a relationship I established as a young child, when locked outside of my house for hours on end.  I would wander through the back woods, and commune with an invisible force I called Mother.  Times when I felt afraid or anxious, I would ask Mother to send me a sign, and little birds would land at my feet bringing reassurance.

Decades later, when my marriage of seventeen years ended abruptly, and I was falling apart, I pulled into a parking lot one day and put my head down on the steering wheel to weep.  I said a prayer to God to help me find the strength to go on, and when I raised my head all around me were birds.

Birds bring me joy, and an undefinable sense of comfort, and to know that we were the cause of this beautiful bird’s end leaves me with a sense of foreboding.  Is something off?  Is this a warning?

A spiritual teacher, who taught me much about the ways of nature, once said that if a bird sacrifices its own life to bring a message, then it is important to pay attention.  I like to be pragmatic, and would think this just a sad coincidence, but the oriole is a bird that means something to me, and I can’t help but think of its mate, now woefully left behind.  It echoes my own fear about losing my mate.

NewlywedsAt the very least, this incidence serves to help me face my fears.  Ric meets with the oncologist, his family doctor, and another specialist this month.  In a few weeks we will know how he is faring.  Since 2012, he has gone through treatment for stage III cancer, and triple bypass surgery after surviving two heart attacks.  Concern is inevitable.

I am the one who put forward the challenge to be on the lookout for synchronicity in our lives.  Makes it hard to ignore this one.

I’ll keep you posted.

(V.J.’s weekly challenge #2 is synchronicity.  Featured image is actually an Altamira Oriiole, taken in Texas.  The last image is Ric & I on our wedding day.)

 

Mom

She wears black slacks with a tiny white flower motif and a rose three-quarter sleeve top.  The shoes on her feet glisten with rhinestone and an array of beaded bracelets on her arm rattle as she gestures while she talks.

“I’m ninety-one-and-a-half, you know.”

“I know Mom.  It’s impressive.”

She smiles and nods.

MyMomRic is in town on business, and so I have opted to spend the day with Mom at the nursing home.  Her room is small, but cosy.  I lie on the bed, while Mom relaxes in her lazy-boy chair.

“I never lie down during the day,” she reassures me when I offer to move.  “You rest.”

I show her pictures from the trip and we talk and talk, both of us tiring, and despite the fact we acknowledge our need to rest, neither of us can stop the flow of conversation.

At lunchtime, I push her down to the cafe on the main floor of her building, and she is childlike in her lack of decisiveness, touching all the bottles of pop and unable to decide, reading all the food packages before settling on a soup and veggies with dip.  All the while she apologizing for taking so long.

We find a table and linger over lunch.  Afterwards, I get a tea, and we go outside, into the garden area and I push her around to see the flowers, but now my body is complaining, so we return to her room on the fourth floor and resume our former positions.

Ric arrives to pick me up and she is just as glad to see him as she was me.  By the time we leave, I am so tired, I can barely stay awake in the car home.

The next day, we are up at Mom’s again to sit in on her annual meeting with her care team.  Mom is hard of hearing, and forgets, so she wanted someone with her, to make sure her concerns are answered.

She wants to talk about end of life care.  She doesn’t want to suffer, nor does she want to linger on like the man in the next room to her did recently.  The doctor and nurse write it all down.

The doctor is soft-spoken, and Mom can’t hear him, so he explains it all to Ric, how they will put in a butterfly on her arm and administer more morphine (she is already on morphine for spinal stenosis) and add another if need be.

Mom is satisfied.  She complains that her spine sticks out too much and makes her uncomfortable.

I have to smile.  Mom has been bent over for some time, and lost so much weight, the problem is inevitable.

balanceAt the end she says:

“Well, I don’t plan on dying anytime soon, anyway.”

We leave after the medical team, and have one more relative to visit before I can get home and collapse.

We haven’t been home a week and already I am exhausted beyond anything I’ve felt these past six months.

Finding a balance is ever a problem.

 

Writing Class #3

The prompt for this week is to consider the vulnerability of new growth and what it takes to protect it, tying it into nature.  Here is the edited version, after the instructor’s suggestions.

Rebirthing

It came in the peak of summer
that most optimistic time, when
sunshine equates with health
and bodies glow with exertion
fit and in their prime – it came

with all the fury of a winter blast
harsh and cold and unyielding –
wrestling me from my complacency
annihilating vibrancy, self-definition
de-leafed, rendering me raw, exposed.

I clung to the darkness, blanketed
against the harshness of light,
the impossibility of sound, or scent –
was de-shelled, ungrounded, ravaged
by volatile nerves and misfiring impulses

praying for the certainty of death
but it is spring that follows winter
and in time, restlessness set in –
the dogged whine of hope willing
my mind to stretch, my body to try

spirit, tired of withdrawal, pushed
against the wall of dysfunction,
bolstered by a shifting acceptance
found roots in an in unspoken faith
and I felt possibility, like a tiny sprout

reaching for the sunshine,
ventured out of my cocoon –
still alive! Redefining purpose
still precarious, highly vulnerable
but optimistic for the return of summer.

(Note:  for those following our travels, we are still stranded…more to come.)

A Glimmer of Hope

“Was I right about the doctor?”  the middle-aged receptionist asked cheerfully as I emerged from the examination room and waited for my next appointment.

“He’s very good,” I agreed.  I had hesitated to see one more specialist after a history of dead ends trying to get a diagnosis for what was clearly something wrong with my body.  I shared my concerns when she called to set up the appointment, and she reassured me this doctor was different:  caring and thorough.  He was both things.

“I know what you mean, though, about being frustrated with doctors.”

“I have been trying to explain it to my husband,”  I told her.  “It’s different for women than men.  I was told by one doctor that I was just oversensitive and by another that there was nothing wrong me, just because he couldn’t find anything.  It’s humiliating.”

A woman in a nearby examination room stuck her head out.  Roughly my age, she nodded in encouragement.

“I really saw it when my husband got ill.  Doctors were all over him, ordering tests, checking up on him with follow ups.  No one questioned his concerns.  We women are not taken seriously.”

The examination room lady gave me a thumbs up.

“Well, this guy is different,” the receptionist repeated.  “He’ll get to the bottom of what’s going on.”

I hope so, I thought to myself all the way home.  I could use some light at the end of this tunnel.

(Image: startsat60.com)

RV-Able: Tips for the Road

Travelling South in a forty-foot vehicle is not akin to driving in a car.  Apart from the obvious size difference, there are other factors to take into consideration.

For one, the dashboard heater has a lot bigger job to do.  If you are like me, the idea of heading into warmer temperatures makes me want to wantonly discard my winter attire.  (My husband usually flies south in shorts and sandals.)  I also don’t like to get cold, and as it was days before we reached a warmer climate, I was glad I wore layers and took extra blankets.  In fact, as weather can be unpredictable even in the south, I have not regretted any of the warm clothing I hauled along, including fleece lined pants, and merino wool tops.  I did, however, opt to wear layers instead of lugging boots and a winter coat.  th

Also, the windshield on the RV is much larger than a car, and does not have visors.  My husband was smart enough to bring sunglasses, but I relied solely on my transitions.  Did you know transitions don’t always change when there is a window between you and the sun?  My sunhat was safely packed away in storage – a definite mistake on my part.

One great benefit of the RV is that there a washroom on board.  For a frequent user like me, that was a Godsend.  We kept a jug of water behind the toilet so that flushing wasn’t an issue while en route.

th-1What I wish I had done was to pack better snacks – maybe pre-made sandwiches.  The U.S. has wonderful rest stops along the way, but these do not include food courts like the road side service centers in Canada.  Vending food is all that is offered, and since I already had lots of junk food on board, that was not helpful.  I will plan better next time – eating is an important part of my health regime, and by the time we reached our first destination, I was feeling really sluggish, with a complaining gut.

The other thing I failed to do was to stick to my medications routine.   I completely missed taking one round, which also contributed to feeling unwell at the end of the day.

Travelling is an adventure, however; illness does not take a vacation – in a case like mine, where health is the primary concern, it is important to maintain certain routines.

We are learning as we go along, and as my husband always like to say:  “Tomorrow we’ll be perfect!”

 

 

 

 

Dreams Compensate

In dreams, I walk, no concern for the distance.  I ride a bicycle, or drive a car.  I move with purpose and direction…

…until lucidity snaps me back to reality and then I plummet into the despair of knowing these are no longer options for me.

In dreams, I confront life’s issues, face my foes, am determined…

…and then I awaken, and realize that my well-being is dependent on the charity of others, and that I am in no position to be rocking any boats, especially the ones keeping me afloat… and that in sickness, my emotional state is compromised.

In dreams, I teach, am engaged in life, and financially rewarded.  I am alive with the adrenaline of deadlines, lessons to be prepared, classes to get to…

…and then I awaken and realize that I am a student again, enrolled in a course I would never have signed up for, unprepared for the tests thrown at me daily: a monetary burden.

In slumber, I am everything I used to be – a compensation for this waking reality called ME/CFS.

Is it any wonder I prefer sleep?

(Photo from private collection)