This is ME/CFS

I don’t know if it is because Ric is away and I am feeling the entirety of my dependency, or if it is because it has been a year and there has been no discernible improvement, but I am struggling at present to keep depression at bay.

This disease, which is presently being re-named as SEID (Systemic Exertion Intolerance Disorder) presents a series of challenges that are seldom understood by the general public (or many medical practitioners).  In layman’s terms, I would like to describe them here:th-4

1.  While the cause of the disease is still in question, there is a consensus that there is a viral component.  The immune system, some believe, has exhausted itself in the fight against the unknown invader.   Antiviral treatment is recommended, however; many, such as myself, have an intolerance of chemicals, so have to carefully monitor the effects of anything we ingest.  While I have always suffered from food allergies and intolerance, I have found lately that this has increased – resulting in immediate skin or food sores.

T-cells, or friendly killer cells, are also compromised by this disease, as discovered by Dr. Klimas of the Institute for Neuro Immune Medicine in Miami.  Dr. Klimas’ clinic is currently the only one testing for and treating this aspect of the disease (that I know of).  The cost for a Canadian to visit the clinic is $10,000.  Please understand that this is for a consult, and commencement of a treatment protocol, not a cure.

2.  Widespread inflammation affecting the brain, spinal cord, and muscles.
Mentally, this means that cognitive functioning is affected.  Executive functioning – the ability to plan, organize ideas, or deal with complex thoughts – has become difficult (relative to my state of exhaustion), as has working memory – the ability to carry an idea or concept from one application to another.  Numbers, for example, are impossible to keep straight.  I might see the number 215, but when I try to relay it to another it will come out 415.  I constantly mix up dates, appointment times, etc, to the extent that Thor has to keep my personal calendar.  Reading and absorbing what I’ve read takes repetitive attempts, and writing is challenged by the loss of words, or recognition of words.

Inflammation of the spinal cord means my nervous system does not function properly.  Outside stimulus, such as smells, sounds, or movement, can be overly taxing.  My startle reflex, like a newborn baby’s, is on overdrive.  Emotions, whether positive or negative, send me into a spin, creating a “wired affect” which disturbs sleep and my ability to rest.

My muscles have become not only weak, but unreliable.  In the early stages, before diagnosis, I have would have weird cramping, like Charlie Horse’s, in my legs and feet.  Now, the sensations range from tautness and extreme weakness to a deep, relentless pain.  I will often stumble or fall, and drop things.  I can no longer count on my body to support me, so I walk with a walker for short distances and take a wheelchair otherwise.

3.  Orthostatic Intolerance is another factor in this disease.  Basically, my body can tolerate standing upright, or sitting, for short intervals only.  This makes cooking, showering, or even sitting in the car challenging.  I take most of my meals in bed, where I can have my feet raised, and recline the seat when in the car.  (Driving is not an option for me right now.)  Meals need to be simple and instant, unless someone else is preparing them – and I must say my husband has been a gem!

th-34.  Exercise (society’s answer to everything) is not so easy for the CFS/ME/Fibromyalgia patient.  While some strength training is recommended, aerobic exercise can severely set back any progress.  Trial and error is the protocol here, with a technique called ‘pacing’.  Pacing involves sandwiching activity with rest, keeping in mind that there is a limited amount of energy available for activities throughout the day.  For example, on the days that I wash my hair (now only once per week), I know I will have little energy left for anything else.  My doctor suggests setting a timer so as not to overdo anything, an idea I have yet to implement.

5.  Lack of restorative sleep.  I tend to suffer from insomnia, although this is improving.  Originally I would manage 3-5 hours of broken sleep per night, but lately 5 hours seems to be the norm.  Still not enough to feel recharged.  (I am not even sure if that is possible at this stage.)  Compensating with meditation seems to help, the key being to have solid chunks of time without disruption.  (No TV, radio, computer, phone calls, etc).  This is easier than it sounds.

6.  Grief/ depression:  naturally with the loss of mobility and normal functioning there is going to be reactive depression.  I am generally a happy, content person, but that only goes so far in the face of this challenge.  Unable to work, socialize, travel, or even tend to normal household routines, it is difficult to “keep the faith”.  Prior to becoming ill, I was passionately engaged with my work and my family, belonging to clubs, taking workshops, and so on.  I felt as if my life was going somewhere, and it was exciting.  Dropping out of sight means an automatic loss of the things that once brought sustenance:  relationships, goals/ planning, and a sense of purpose.  (Where is the purpose in being bed-ridden everyday?)  Grieving is not easy because it calls for resignation and acceptance, and my soul is not complying.  I keep telling myself that this is a big inconvenience that will one day just go away and I can get back to living.   Wrong!

th-57.  Exhaustion.  This is not your weary at the end of a full work day exhaustion.  It is system wide.  Talk on the phone too long, hoarseness signals my vocal chords are tired.  Spend too much time on the computer (writing this has been an all day adventure), headaches set in, as well as mental fog.  Stand or sit for too long, I feel both my spine give out, as well as swelling in my lymph nodes.  Overall exertion – going out for dinner – and I am flattened for a period of time with flu-like symptoms.  The more I attempt to live a normal life, the more my system complains.  I would like to say that progress out numbers setbacks, however; the reverse it true.

When I told a nurse friend of mine that this disease is more prevalent than breast cancer, her response was “No way!  How can that be?” (meaning, how can it be that so little is known about it.)

I have a few thoughts on that matter.  Patients suffering with ME/CFS/ Fibromyalgia are often homebound, and therefore, out of sight.  They do not have the energy to walk for a cure or rally together for any awareness.   This is the invisible disability.

As there does not seem to be one drug treatment that addresses the issues, there is no money to support research (much research is funded by the pharmaceutical companies).  In fact, I think this disease is like the proverbial canary in the coal mine – a warning about how toxic our environment and food has become.  Who wants to face that?

So, where is the hope?  How do I cope and carry on?  I follow a very simple regime of diet and treatments:

a.  I avoid dairy and gluten in my diet, and wherever possible, processed foods.  I did follow a vegetarian diet for four years prior to being diagnosed, but have had to add some meat back into my diet for convenience matters, however; digestion of heavy meats causes severe IBS symptoms.  I have minimized caffeine intake, avoid alcohol, and need to work on eliminating sugar.

b.  I see a Doctor of Chinese Medicine for acupuncture and herbal supplements.  These include a probiotic, an adrenal boost, digestive enzymes, and other supports as needed.

c.  I see a specialist to address my allergies and asthma, as this is exacerbated by the disease.  I do take prescribed medications, which is constantly monitored.

d.  Restorative yoga is a recent addition to my treatment schedule.  A private instructor comes to the house and works with me on the bed.  I can incorporate this into my twice daily meditation/ rest time.  The instructor also gives me homework to improve my breathing and muscle strength.

e. I see a  psychologist regularly to ensure that I have support for depression, grief, and any other issues that might arise.  (It is amazing how much stuff comes up when you have nothing to do but lay around.)

f.  Pacing.  As mentioned before, this is the number one recommended approach to maintaining balance.  Limiting activities and stimulation is essential for staying out of the crash and burn cycle.

Sloane&Meg.  Social time is a very important part of keeping positive.  I have a few friends, as well as children, who visit regularly and are willing to lie beside me on the bed if need be.  My granddaughters are the best as they love to cuddle with Grandma.

h.  Writing is also an important part of my recovery.  To be able to remain passionate about something is a gift, and with today’s technology, even when my hands and wrists tire, I can dictate!

i.  Music and books on tape are the other stables in my regime.  Since my mind doesn’t allow me to concentrate enough for reading, I have found that listening to someone else read is a happy compromise.  Podcasts are even better, as they are often short and interesting.  Songza provides many playlists of mellow music for relaxing or meditation/yoga.  (Note: watching TV is not a good past time, as the combination of sound, visuals, and annoying commercials is overly stimulating.  If I do watch, I try to pre-record.)

j.  Games and apps.  Games that stimulate the brain are good in short intervals.  Magic Puzzles provides endless jigsaw puzzles that can be set at easy, medium, or more challenging.  ME/CFS Diary is an app that allows the patient to monitor patterns – this is excellent for tracking activities and symptoms to share with the doctor.  (I find it easier than filling out the daily paper logs).

k.  I have recently started taking short walks every day (five or six houses down the street).  The challenge with this (and any exercise) is making sure that I do just enough to make a difference without setting myself back.  This is still in the trial and error stage.

I hope this discussion of ME/CFS has been helpful.  I welcome comments and further discussion, and would like to reiterate that I am speaking purely as a layperson, and not as a medical expert.

Blessings

My mother’s feet scream with the agony
of her miserable condition,
underlying the disease that eats at her.
My feet, uncallused paddles,
slightly bent and fallen,
carry on with forgiving kindness.

My husband’s knees are red-hot pokers
shooting knife-sharp volts
with every rickety step he takes.
Mine like knots in the spindly
trunks that bear them
graciously allot me flexibility.

My father’s back grew weak with time
faltering in the end – unreliable –
as if he’d borne the weight of the world.
My back, not without its moaning,
carries me proudly, erect –
like the spring sapling, winter endured.

My uncle’s heart beats erratically,
ceasing despite its mechanical support;
his life a testimony to modern science.
My heart flutters with expectancy,
aches with disappointment,
and soars with each new birdsong.

My sister’s tension rises,
the stiffness in her neck suffocating,
headaches blinding her vision.
My neck, slung now like a rooster,
puffs around my face like an old friend,
allowing me the comfort of perspective.

My brother’s mind has seized,
lost somewhere between today
and yesteryear – never certain of either.
Mine, a constant churning cog,
gathers information, spews ideas
and bends in the face of creativity.

My eyes have seen the suffering of others;
my hands throbbed with a desire to help;
yet each bears their cross stoically,
and so I watch with compassion and gratitude
for a life I might have lived,
had my own vessel not been so blessed.

 

 

 

 

Day 264 “Do Not Wait”

“What does this say Mommy?”  A two-year-old peers intently at the letters on a page.
“They’re words, Honey.  You’ll have to wait until you go to school to learn to read.”

“When will I have a boyfriend?”  A pre-teen wonders aloud.
“Not until you’re older,” she’s told.  “Wait a few years yet.”

“I can’t wait until I move out!”  A young woman bemoans.
“Living under my parents’ roof is a drag.”

“Will I ever get married and have children?”  The working woman asks.
“I don’t know if I can wait much longer.”

“Wait ’til your father gets home!” A mother tells her naughty son.
“When will my time come to get out of the house?”

“We’d like to travel,” a woman tells her friend,
“but we’re waiting until the kids leave home.”

“I think we’d better downsize,”  a wife tells her husband.
“I don’t think we can wait until retirement.”

“Do not wait!” a widow tells her children.
“Or it may be too late.”

All The Little Pieces

You, old man –
silent onlooker,
career behind you,
motivation stymied
senility lurking –
You are a part of me.

You, grandmother –
chronic caregiver,
stiffly puttering,
good intentions,
punctuated by pain –
You are a part of me.

You, young woman –
heart full of passion,
longing to embrace life,
confined to a wheelchair
dependent independent –
You are a part of me.

You, little child –
running with emotion,
driven by discovery,
curiosity cancelling reason,
needing protection –
You are a part of me.

You, young man –
cold-hearted and reckless,
menacing and lawless
cruelly harrassing,
angrily destructive –
You are a part of me.

You, responsible one-
struggling to do it all,
holding it together,
rescuing the lot,
refusing to let go –
You are part of me.

You, my many pieces –
bound by disease,
beaten by hardship,
silenced by fear,
abandoned to rot –
You are a part of me.

I, shattered into pieces-
overwhelmed, and repulsed,
have not lost compassion,
will regain my fight,
hang on for salvation, because-
You are a part of me.

Presently Seeking Peace

Life is transition,
and when disability presented,
I brought along my social self –
optimistic, friendly, upbeat.

And I brought my spiritual self-
child, maiden, mother, crone.

The possibilities seemed endless,
and lined with “would”s-
reconstructions needed, projects abandoned,
work attached, room for the old.

Drama entered and theatrically
walked out, “I’ll have none of this!”
Apologetically, I asked for the parameters-
“All doable!” I thought.

Severe debilitation appeared,
sleek and menacing as a cat,
puncturing my self-confidence
raising my ire.

I did not choose this existence!
I can only decide how to proceed.

So I simplify,
cut back my expectations,
seek purity in deprivation.

I am almost there,
but there are so many loose ends –
work to complete, messes to clean up,
questions to answer, justifications to make.

I uncover the consequences
of well-intended, but not followed through
promises.  Garbage, garbage, everywhere,
and me, with no energy to dispose of it.

Charity nourishes me,
compassion fills the gap,
and though I want to reward it –
extend my gratitude –
disarray gets in the way.

And I cycle back

Life is transition,
and in the end,
death.

I can enter willingly,
with grace and peace,
resigned to my tribulations,
free from entanglement.

Or, I can rail against it,
mired in the smut of criticism,
pretending perfection,
oblivious to the blessings.

Life, my dear self, is transition,
and we are being moved along,
whatever our preconceived expectations.

Open yourself to the process
and be willing give up the delusions of the past.

There is peace to be had.

Damn you, Hindsight!

 

It’s my final year of high school, and while I should be focused on earning scholarships and preparing for University, I am head-over-heels in love. A year my junior, Bob is a dreamboat: quarterback on the football team, downhill racer during the winter season, and lead actor in the school play!

I rush to his locker after football practice, having wiled my time in the library with the pretense of studying. He is surprised to see me, asking why I didn’t go off with my friends after school.

“Because I wanted to be with you,” I purr flirtatiously, leaning in for a kiss. I hook my arm in his and lead him out to the parking lot, where the car I have been working to pay off, awaits.

It was all you, hindsight chirps in. He even said that that you should be with your friends. He tried to warn you, but you didn’t listen.

It’s a beautiful spring day and we drive out into the country just to enjoy it, and I wonder about our future, and if we’ll get married, and how soon I can have kids. He gazes out the window lost in thoughts that I cannot access.

“You should get a job,” I say. “ You know, to save for the future.” I’ve been working since I was fourteen. I enjoy the freedom having my own money brings.

“I have cash,” he responds and flashes me his killer smile.

From his parents! Hindsight yells at me. The boy still lives off his parents – How did you think he was marriage material?

I am seventeen, and full of romantic notions, and sure that I found “the one”.  He is handsome, and a good dancer, and plays the piano, and even held my head one day as I puked after drinking too much.  Isn’t that love?

After graduation, I move out, and find a full time waitressing job to pay the bills. University starts in the fall and I need to save. Bob gets a job and buys himself a sports car.

“He’s just a boy,” a co-worker tells me. “What do you see in that?”

It’s true that he wears racing gloves when he drives his car, and that seems a little foolish, but he’s my man, and I’m smitten, so I defend him.

And he spent every cent he ever made on that car and none on you, hindsight reminds me. You even forfeited a honeymoon so he could buy those racing tires! But you couldn’t see it!

Another year of our lives passes, and it is spring again, and I have just finished my first year of University and he is approaching his high school graduation and I ask him if he could ever see us married, and he says yes, and I ask if that means we are engaged, and he says sure, why not. And the plans are on!

Note how he didn’t even propose to you, hindsight interjects. Wasn’t that telling in itself?

I decide to let my education go, and he finds a job with a bank, dropping out of school just one month before earning his diploma. We work and save and make plans (well at least I do), and as the wedding day approaches, he gets fired.

“You don’t have to go through with this,” my Father tells me. “It’s not too late.”

“It’s not too late,” my mother assures me. “No one would think any different of you.”

I tell myself it’s just a bump in the road. We’ll get past this.

When my period doesn’t show up , my best friend asks him how he’ll deal with it.

“It’s her problem,” he replies, and walks out of the room, leaving me to break the awkward silence that ensues.

“You don’t have to do this,” she says.

But I do! My heart cries. You don’t understand! No one understands. He loves me. No one else will ever love me.

Oh boy, hindsight sighs. The writing was on the wall, and you couldn’t even see it.

Call it stubbornness. Call it willful blindness. Call it the stupidity of youth. I do marry him, and die inside every night as I climb into bed alone while he stays up with his guy friend watching movies until three or four in the morning. And I work two jobs, sixteen hours a day, while he sleeps till two and then moves from the bed to the couch where he channel surfs till I come home and make his dinner.

Even when you took in a boarder to help pay the rent, you just worked harder, never asking him to pick up the slack, hindsight reminds me.

“You are going to burn out,” the friend I had ignored for him tells me months into the marriage. “I just worry about you.”

“He just needs to find himself,” his mother tells me. “He doesn’t want to take just any job, he needs a career.”

So I seethe inside as I go from day job to night job, and pay the bills, and do the laundry and shop for food, and clean up after his posse of unemployed friends.

None of it should have been a surprise to you, hindsight accuses. It was your own desperation and lack of discernment that drove you there.

“He prefers male company to you,” my mother points out. “Doesn’t that suggest something to you?”

It isn’t that I haven’t notices, and when I ask, he says that it’s just that I am not sexy. He’s tried, he says, but I just don’t do it for him. It’s my fault, I think.  I am disgusted with myself. I start working out, but am too tired. I can’t keep up the pace.

It’s not till I discover his private bank account where he’s been hoarding money that I realize that the price for his dream is just too much, and two weeks before our second wedding anniversary, I kick him out.

“Get help.” I tell him. “Find out who you are and what you want from life.”

He moves in with another woman.

And I, broken, bruised and ashamed, push on.

Thirty-seven years ago today, I was about to be married, and despite all the counsel to not go through with it, and all the evidence that this was perhaps not the best decision – I did it anyway.

Damn you hindsight, for never being there when I need you.

Gridlocked

Far from home,
tired and spent,
feeling abandoned,
disconnected –

I am cut off.

Lacking independence,
damaged by betrayal,
I try not to need
and get tangled up-

cut off again.

The past haunts me:
a legacy of dead-ends;
abuse, addictions,
and mental illness-

cut me off.

Seek a higher road!
Spirit calls to me.
No! Stubbornness responds
I can do this myself –

But, I can’t.

Confronting shadow,
the nightmare is revealed.
Following Spirit
is the way –

I re-engage.

Dream Study

Dreams speak to our non-rational self:  our emotional, instinctual, conditioned unconscious, and experiential selves.  They reach beyond our carefully construed ego self to bring new insight and understanding with the purpose of positive growth.  While they speak with the language of metaphor and symbols, using a symbol dictionary limits the interpretation, and is, therefore, not recommended.  The best way to look at dreams is to break down their elements and look for the associations that can best be bridged with our outer lives, remembering that it is the symbology, and not the literal translation that has relevance.

Let me demonstrate using my own dream from last night:

I am seated at a round table with my ex husband and his wives.  The occasion, it seems, is the funeral of my present husband.  The three of them have just returned from a cruise (their first) and were so taken with the experience that they have bought me a gift certificate from a travel company so that I can go with them the next time.  I am taken aback:  not only is this unexpected, it is highly inappropriate given all the circumstances.  Jay’s sister-in-law (who we jokingly call his other wife) is quite animate and friendly, as is my ex.  His wife does not look at me.  I examine the gift certificate.  Is is for just under $900, and from a travel agent who is on the verge of bankruptcy, so not guaranteed.  I mention this and they say that is why we have to act now.  I see my husband, bed-ridden in the next room and tell them he is not even dead yet.  This is all so wrong.  The women leave but my ex stays.  He hands me some pieces of clothing that his wife wants me to have.  They are used, but obviously washed – red satin pjs with hearts on them.  The first two garments are size small.  “I have never been a small” I tell him, handing them back.  The last piece looks large enough, but is just the top, no bottoms.  “Accept that, at least!” he commands.  I do and as he leaves I wake up feeling the ludicrousness of this dream.

1.  Setting – Where the dream takes place is a good starting point.  When considering setting, notice whether it is familiar or unfamiliar.  If unfamiliar, draw out any associations or memories that the images conjure.

My dream takes place indoors, at a round table
–  the round table makes me think of Arthur and the knights of the round table. (I’ll come back to this symbol later.)

– I had table dreams regularly when going through my divorce, while I was negotiating a settlement, as in what both parties brought to the table.  (Dreams often use puns to illustrate a point).

– indoors might indicate something inside myself.

– this is supposed to be the occasion of my current husband’s funeral, and the setting appears to be more ‘back at the house’ than the funeral parlour, so the indication is that it has to do with something in my own home, or inside myself.

– time of day seems to be late afternoon, early evening – if there were other mourners, they are gone.  Age-wise, I am in the later years.

2.  Actions – the movement in dreams can help us understand progress, or see where things are going.

The action takes place indoors, at a round table, with three other people, then moves to the sitting area with one and eventually alone.

Associations or thoughts – Three’s a crowd:  the feeling of being ganged up on.  (this draws an aha for me.  I am feeling ganged up on by my friends and family who keep asking me why I haven’t had an MRI.)  Then sitting face-to-face with my ex – facing the issue full on, and then alone – A reminder that in the end we are all alone – it is a place we need to be most comfortable in.

3.  Themes –  It sometimes helps to insert an ‘as if’ here:

It’s as if my ex-husband and his wives have offered to take me on a cruise – this would be totally inappropriate under any circumstances, for so many reasons, and reminds me of the time when we first separated, and he wasn’t paying support but offered to take me on a $350 balloon ride for my 40th birthday – it was so inappropriate as I needed the money for food and shelter at the time.  Is there something here about how others are not always sensitive to what you need in the moment?  This certainly ties in with the pressure I’m getting from others to get another opinion.  It is their agenda, not mine.

It’s as if I am holding ceremony for my current husband and he is not actually dead yet.

Big aha here!  I worry about my husband all the time:  his eating habits, lack of exercise, and alcohol consumption.  I am burying him, before he is even dead.  Boy, I need to let this one go!

It’s as if I am reluctantly being handed a gift (the clothing from my ex-s wife):  not sure about the connection here.  Will have to give it more thought.  Is someone offering me a back-handed gesture of help?  Reminds me of a term my father used :  watch out for Philadelphia lawyers- meaning be wary of people who have nothing invested in your issue.

4.  People – Keep in mind that the people in dreams are also symbols, so consider the character traits and behaviours of the people represented.  Gestalt therapy suggests that all elements of a dream are parts of the self.

Ex-husband – narcissitic, anti-social, self-serving – what part of me is this?  Certainly my fearful self – when cornered or attacked, I will defend me at all costs.  How am I negotiating with this part of myself?

Ex-husband’s sister-in-law:  outgoing, Russian bride, in an abusive marriage – what part of me is this?  The reason we call her the ‘other wife’ is that she spends more time in my ex’s house than her own given the circumstances of her marriage.   She is the twin sister of my ex’s wife, the more outgoing of the two, but is making poor choices in her life.  This reminds me of my own mother who could never leave my father despite the abuse that went on in their marriage.  I am aware of the baggage I carry as a result of my parents’ marriage.  Good to be reminded that I bring that to the table.

The Russian bride:  bitchy, demanding, inflexible:  Yes, my ex married a mail order bride (I always joke that he had to go all the way to Siberia to replace me).  She is the anti-thesis of me – a fighter, who stands up for her rights, and won’t back down no matter what – this is me when backed into a corner.  This was me the night before last when Thor and I had a fight about his health.  I lashed out with a vengeance.  Like the wife in the dream, I couldn’t look at myself after, I felt so ashamed.

Thor – in the dream he is sick and dying, or originally thought dead.  Thor is driven, thoughtful, giving, a caretaker and provider.  He is all the parts of myself that I like.  Have I given up on them?  I am not able to be caretaker or provider right now which causes no end of grief.  But, like Thor in the dream, I am not dead – just sick in bed.  The end is not here!

5.  Symbols:  Dreams, like symbols, have layers of meaning, some archetypal, some societal or cultural, but mostly they are personal.  It is important to examine personal significance.

Table – for me, the table has historically represented negotiation, as in “What do you bring to the table?”  This table is round, which reminds me of the Arthurian tales in which the table was round to signify equality – no head of the table.  Round tables at school allow for more communal discussions.

Cruise – Thor and I love to cruise, but have been unable to because of our illnesses.  Going on a cruise is what we hope to do as soon as I am able to travel.  It offers comfort, luxury, and a variety of destinations, as well as lots of entertainment – all without having to move from hotel to hotel.  The dream offer of a cruise holds no allure.  It is my husband I want to travel with – in the dream and in life.  (An aha moment).

Used pjs – in the dream they signify a peace offering, albeit not well thought out, almost as if last minute.  Pajamas are associated with the bedroom, and intimacy.  That the Russian bride would offer me pjs is curious.  Things that are odd in dreams often hold important messages – I will come back to this.

6.  Feelings – this is important.  Our ego tends to filter emotional responses and regulates them so that we behave appropriately, however; the dream time allows for expression of anger, remorse, fear, etc.  Understanding our underlying feelings can help us to make healthier decisions, and heal old wounds.

disbelief , incredulousness – where am I feeling this in my outer life?  Not sure.

incensed – the feelings here are for my ex-husband, and while it has been many years since our divorce I suspect I am still harboring some resentment for the way the marriage ended and how he treated me in the aftermath.  When I lashed out at Thor, it was undoubtedly with some of this leftover resentment.

7.  Questions:  what questions arise from the examination of the dream?

Why would I be entertaining my ex and his wives?  Or more importantly – How am entertaining my ex and his wives (parts of self)?  How have I enabled self-centered, explosive, foreign aspects of myself to persuade me?  How have I allowed myself to even contemplate fulfilling my dreams without my husband ( I confess the thought of divorce did cross my mind – knee-jerk reaction).

Why pajamas?  Which leads to another thing to consider:

8.  What is odd?  All dreams are odd, admittedly; but what is odd even for the dream?

The red pajamas. 

An exercise to do here, would be to describe the object, as if to an alien, who has no concept of the item, its use, its origin, or social application.

These pajamas are used for night wear; women wear them to sleep in, or for lounging at night, usually when company is not present.  These are red, satiny, so light weight and comfortable on the skin.  They are fashioned after a man’s shirt, with matching pants, typically, although the only one that fits me is missing it’s partner.  They have long sleeves, and button up at the front.  They are modest. 

After having exhausted the description possibilities, the next step is to take out the references to the object and replace it with “I am”.

So:  I am used for night wear; for sleeping, or for lounging at night, not when company is present.  I am red, and satiny, and light weight.  I am comfortable.  I am fashioned after a man…..etc. 

Note:  Work with a dream until you reach an ‘aha’ or breakthrough.  Always work until you have a positive outcome:  a resolution, a healing, a new insight that inspires positive movement.

 

 

Day 262 Life Tests/ Lessons

6:30 am.  Thor’s alarm goes off.  Was I asleep?  It is still dark outside and like every other morning, I have nowhere to go, so I roll over, but my mind has already engaged, or rather re-engaged, stuck on the same LP track (a function of this disease) that has been running through my mind all night.  I get up, shuffle to the bathroom and while I relieve myself, take my mornings puffs of inhaled steroid to kick-start my lungs.

[Test  #1:  Can you find a reason to get out of bed when you’ve lost your ability to work, and no one needs or expects anything from you?

My answer:  The will to live is stronger than even I might have suspected.  Part of me wants to stay with the oblivion of sleep, and another part of me has things she wants to do – life to live  – so, yes, I am motivated to wake up each morning and embrace a new day.]

In the kitchen, I turn on the kettle and prepare my over-sized mug for the first cup of tea of the day.  Thor is already in work mode – checking his emails – coffee in hand.  Tea made, I shuffle back to bed where I start up my own computer and turn on the morning news.  I check for emails – mostly advertisements, some postings from blogs that I follow (which I’ll read later) – I am too out of the social loop to receive personal correspondence anymore.

[Test #2:  Who are you when many of your relationships have gone by the wayside?

My answer:  I am old enough to know that relationships come and go throughout life and while they help shape me, they do not define me.  A side effect of losing so many connections is that I am left with a handful of friends whose staying power continually warms my heart.]

Next, I check my online Scrabble games to see if any of my random opponents have played their turn.  My brain, more specifically working memory and executive functioning, are affected by this disease.  Playing Scrabble is a recommended therapy.  Several games await my turn, so I play them.

[Test #3:  Loss of brain power:  brain fog, confusion, memory loss, etc.

Reality:  I lose patience with myself, especially when I make mistakes that affect others.  A sense of humour helps, but I do find that this challenge makes me withdraw more than anything.  Loss of mental capacity is very tiring.  ]

7:30 am.  Time to make breakfast.  What to have?  My go to is instant oatmeal, but on thinking back to what I ate last – sweet potato and a slice of chicken at supper – I think my stomach could handle a bit more.  I decide on gluten-free bread toasted with two slices of precooked bacon.  I take it back to bed with me and change to the CBC news, rechecking the status of my Scrabble games.

[Test #4:  What happens when you no longer have the energy to make optimal life choices?

Reality:  For four years I followed a careful vegetarian, dairy-free, gluten-free diet.  Every weekend I shopped for and cooked special meals to enhance my well-being.  Now I am unable to shop for food, and depend on Thor for much of the cooking, and as his name suggests he is a meat-atarian!  Limited energy equates with limited choices.   I have let this ball drop for the time being… to be continued.]

News today is all about the TTC strike, and since I don’t even live in Toronto, I decide that listening further is wasted energy.  I shut it off and turn to Facebook, reading about the trips my once friends, now acquaintances, are either taking or planning, what they’re making for dinner, or who they are partying with.  I switch back to Scrabble.

8:10 am.  Thor is dressing for his first morning meeting then stretches across the bed to visit with me for a bit.  We talk about his day.  I can feel myself getting sleepy.  As he gets up to leave, I will myself out of bed again, taking my dirty dishes to the kitchen, making mental note of the work that needs to be done there, then back to the bathroom where I relieve myself, brush my teeth, and think about washing my face, but now I am too tired.  I go back to bed instead, choosing a Sonza playlist for sleeping and setting it next to my pillow.

10:36 am.  I hear Thor come home, enter the bedroom and check on me, but I am still sleeping and not ready to get let it go.  I glance at the time, and notice the faint calling of my bladder, but give in to heavy lull of sleep.

11:47 am.  The insistence of my bladder is too strong to ignore now.  I get up, amazed that I have slept so long.  Thor, hearing my movement, calls that out that I have an appointment in two hours.  This time I do wash my face, apply some cream and brush my hair.  Sitting facing the dresser, I wonder what to wear and settle on the usual – yoga pants, a t-shirt, and hoodie – my uniform.

I feel renewed after such a long sleep – the best I’ve had in days – so offer to make lunch.  Normally, I would nuke a bowl of soup, but I know Thor prefers it heated on the stove, so I pour the pre-made soup into a pot and turn on the stove.  I clean up the dishes left from breakfast and complain that the soup seems to be taking a long time (I have limited capacity for standing), so Thor takes over.  Not wanting to go back to bed just yet, I sit on the couch and notice all the toys still left out from our granddaughter’s last visit.  I try to tidy up, but the movement makes me dizzy, so I sit back down – it will have to wait for my next little burst of energy.  Thor serves up the soup and we eat in silence.  Not much to talk about on my part; he is no doubt thinking about work.

Soup finished, I snatch an apple out of the bowl and go back to bed.

[ Test #5:  Living with restricted energy

Reality:  Setting boundaries and valuing the little energy I have is a difficult life lesson:  so much of what I do in a day is habitual or mindless.  Choosing to use my energy for something useful like writing, or spending time with loved ones is a happy choice.  Yet, I find it hard not to get lost in distractions, or worse, “shoulds” ( I should do some laundry, sweep the floor, tidy the table, and so on).  I still have lots of work to do in this area. ]

12:27 pm.  I listen to an audiobook: The Hare with the Amber Eyes.  Some of it is hard to follow, but the narrator’s voice is low and soothing, so I keep pushing forward with the story.

1:00 pm.  Esther calls on her lunch break and we discuss her weekend and their upcoming move.  She sounds very upbeat, and I hang up feeling good about the conversation – I don’t have to worry about her today.

[Test #6:  Worrying about others.

Reality:  An excess amount of idle time equates to surplus opportunities to think about others, and as a mother, to feel guilt and concern where my children are concerned.  Sometimes, my mind will dwell on past situations and I will spend days spinning over something I’m sure I’ve done wrong.  This is one of the reasons I see a therapist.  Unnecessary emotional spinning is a definite drain of energy.]

1:15  I play a few more turns of Scrabble.

1:26  Thor reminds me we have to leave soon.  I put my cellphone in my purse and go one more time to the bathroom.  We discuss whether or not to take my walker.  I don’t need it to get into my appointment, but I will if we decide to stop on the way home.  Take it, I say.  It gives me options.

It’s a beautiful sunny day, and as we drive across town I note that most of the snow has gone from the streets and sidewalks, with only the last black-crusted bits remaining.  I feel uplifted, hopeful.  Maybe I can get out more, I tell Thor.

[Test #7:  Keeping hope alive

Answer:  This is another wonderful function of spirit:  the ability to regenerate hope!  Hope springs from a sunny day, a friendly exchange, a thoughtful gesture, and in my case, a restful nap.]

2:00 pm.  The appointment today is my weekly acupuncture visit.  Usually I sleep during this visit, but after this morning’s rest I lie instead and think of writing this column, and whether or not I need to continue coming every week, or if I could use my energy for something else.

3:30 pm.  We decide to visit at a new Farm Boy on the way home.  I want to find some ready made salads I can eat for lunches.  The store is big and a bit overwhelming for someone who has been housebound for so long, so I choose a few aisles, adding some things to Thor’s basket.  Walking is slow, and I have to sit while studying products.  I feel my muscles straining, but push on, so excited to be out and about.  I see a former student, and stop for a quick chat.   When my my muscles start screaming, I ask for the car keys and head out to wait for Thor in the car,  but the sun is so bright and warming that I perch on my walker and soak in the outdoor air.  An elder gentleman stops to chat and tells me his wife is housebound and won’t come out.  We swap stories and sympathies.  When I can no longer sit up, I return to the car and put my seat back.

4:30 pm.  Back in bed, pleased by my outing.  Missed a call from Marie, but my voice is hoarse from the exertion of going to the store, a signal that means I need to rest, so I’ll text her instead.  I put the heating pad under my back and notice I am suddenly cold, so pull up a couple of blankets.  Low grade fevers seem to spark up with exertion too.

I work on the blog.

6:00 pm.  Thor asks if I want dinner in bed or at the table.  Bed is the answer –  my muscles are strained from the earlier activities.  I set my writing aside and prop up my pillows, anticipating dinner.  It is superb!  Almond crusted trout and waxed beans.  I turn on the news, a habit I still haven’t shaken – but tire of it quickly.  I have some prerecorded shows to watch and want to catch up on.  Even though I am only supposed to watch one hour of television per day (it’s too stimulating) I decide to have a marathon and watch three shows.

9:30 pm  Being able to fast forward through the commercials helps, but now I have a headache, and the images from the programs are locked in my brain – this is why watching too much is not a good idea – I cannot shake things easily.  Also, I noticed that I am very emotional and cried easily over every little thing – another sign that I am off balance at the moment.

10:00 pm.  Finish writing this blog, and text with my girls.  Ready for bed but wired.  Will check in on my Scrabble games and then maybe work on a jigsaw puzzle to quiet my mind.

[Test #8:  Compliance

Reality:  It will be days before I recover from the “extras” I indulged in today:  my muscles will complain and stop working, sleep will become elusive, and I will not have the energy to get out of bed.  I will become cranky, feel discouraged, and want to give up.  Then it will pass, and I will try again, and when I feel good, I will want to do to it all – that’s my nature.  (Not to mention that I am obviously a slow learner.)]

Life is constantly testing us – living with chronic disease only magnifies this universal truth.  Some days I am more conscious of those lessons, and able to learn and grow; other days I prefer to just exist.  Right now, I would say I’m passing with a C-:  lots of room for improvement.

How about you.  Are you acing life’s tests, or just getting by?