Lethargic limbs
immobilize
while swarms
of thoughts
like predatory
insects
buzz
about
threatening
to invade
crevices
of the mind.
Imaginary nets
fail to repel
escape eludes
breathe
breathe
visualize peace
dissolve chaos
surrender
to source
return
to the one.
Before I was sick,
I counted the days and hours,
not because of drudgery –
I loved my job –
because I had stretched myself
beyond normal limitations.
Before I was sick,
I wore responsibility
like a superhero,
and defined by work,
prioritized tasks
above well-being.
Before I was sick,
I joked with others
about the disabled
lounging around,
living the life of leisure,
usurping the system.
Before I was sick,
I prided myself on saying “yes”,
being dependable,
loyal to a fault,
a friend to all.
I thought I was invincible.
When I started to get sick
I trudged from doctor to doctor,
underwent tests,
and humiliation,
learned to doubt myself,
and turned the blame inward.
When I started to get sick,
I chastised myself
for being overweight
and not exercising enough,
and stopped eating carbs,
and pushed harder.
When I started to get sick,
I ignored my body,
failed to set boundaries,
continued to eat on the run,
and felt ashamed
that I had let myself go.
When I started to get sick,
I was wracked with guilt
for the compromises
I had to make,
failing to juggle
so many obligations.
Now that I am sick,
I value more than ever
the importance of priorities,
recognizing that well-being
always proceeds well-doing,
and appreciate my body’s voice.
Now that I am sick,
I understand that work
does not define me,
and disappointing others
is a reality in life.
I am not invincible.
Now that I am sick,
I’ve learned that richness
is a quality of living
and not a figure
in a bank balance.
Happiness, the same.
Now that I am sick,
discernment defines
the relationships I desire,
no longer willing
to negate self
for the love of others.
Now that I am sick,
I no longer pretend,
or reach to meet standards
that fail to sustain me;
I have a new set of expectations
and am learning to be.
Now that I am sick,
I see with compassion
how insecurity
and a longing for approval
drove me to demise,
always failing in my mind.
Now that I am sick,
I pray that wisdom,
and humility
will guide my recovery,
and that life will await
this metamorphosis in me.
I have just returned from a record-breaking (in my history) trip to the emergency room and back, and as with all adventures in life, I learned something.
I experienced first hand the ignorance of the medical world concerning ME/CFS. No wonder it took years to get a diagnosis.
Please understand that making the choice to go to the hospital is a big one for me – with an intolerance for sitting or standing, I could not bear the thought of sitting and waiting for hours on end – as is typical for our emergency rooms. Imagine then, my surprise (and relief) when they took me right in and from the triage examination, rushed me into a bed.
A resident saw me within minutes, and before an hour had passed, I was hooked up to an IV and receiving fluids for dehydration and nausea. Once vitals were confirmed stabilized, they had me on my way – all in under four hours.
The staff was charming, attentive, and I felt, really made an effort to understand what was going on with me, but they just did not know anything about ME, asking me to repeat what it stood for several times and even asking how I got such a diagnosis. They didn’t appear skeptical, just genuinely interested, but considering this disease is more prevalent than breast cancer, it does beg the question: How is it that no one knows?
Living with ME/CFS is an extreme act of faith. The symptoms come and go, fluctuating between mild and severe and seldom amount to anything tangible in medical tests, creating frustration for everyone involved – especially my loved ones who wish so desperately for an end to this disease.
I saw four different cardiologists, for example, when I was trying to find the cause of my rapid heart rate. The first told me I had a rare arrhythmia that I could treat with diet and exercise, the second told me that I did not have a heart problem and basically wasted his time, and the third that I am likely over-sensitive. The fourth decided it was an intolerance for pain medication that was causing the problem, and to some extent, he was correct. I now know that the increase in heart rate is related to orthostatic intolerance. My pulse rate lying down is typically between 84-94 bpm, but increases to 116 or so when sitting, and 137 when standing.
I had a similar experience with continued respiratory problems. In 2006, I seemed to have a cold that would not go away. It was the year I had returned to school, so I wrote it off as a side effect of working with children. Then one day in March, I just could not catch a breath no matter what I did. As I’d had casual bouts of asthma in the past, I was referred to the Asthma Clinic at a local hospital. Testing reconfirmed a number of allergies, both environmental and food related and four years of visits to adjust medication followed. On every visit, my doctor – a lovely man with a warm wit- would wonder aloud if this was really just asthma. Now, I know it was a combination of asthma and ME. Taking medications is not enough to ensure ease in breathing – pacing myself and avoiding over-exertion is key.
Today’s visit was for ongoing abdominal problems. IBS was suggested after a colonoscopy four years ago, but the continued bloating and ongoing pain has become concerning. A blocked bile duct was detected in another test, and an antacid prescribed. Food sensitivities have been noted and I have adjusted my diet accordingly, but the difficulties persist. “It’s likely just a virus,” they told me yesterday. And, in part, they are probably right, but there is such a persistent, underlying wrongness to how my abdomen functions that I am not satisfied we have gotten to the bottom of this problem. Apart from two forkfuls of rice and a couple of gluten-free crackers, I have had no solid (or liquid) food in five days – the pain that follows is too intense. There is no quality of life when the pleasure of a decent meal cannot even be savoured.
Living with chronic illness is discovering that much of medicine is still in the formative stages – uncertainty punctuated with educated guesses – so much yet to be learned. And, if you’ll indulge this me this moment of feeling sorry for myself, I am a discontented guinea pig.
Cumbersome and heavyweight,
determination driving,
I roll with a shudder,
ignoring limitations,
promising caution,
pretending control.
Road blocks, detours,
and bustle –
everywhere bustle!
Unavoidable confusion.
(Control, it seems, is illusory.
How had I not anticipated this?)
Rattled intentions-
delayed reactions –
slowed starts.
I am an abomination.
Children dart about,
heightening my angst.
Go-getters impatient,
rev at my sluggishness.
(Get out of the way!)
Compliance compels, but
the girth of my metal
inevitably obstructs –
Misfits are not welcome here.
My load is heavy –
grievances topped with
personal dramas, blended
with ingested toxins.
(Warning: compassion is low!)
My apologetic countenance
masks underlying menace –
Do not misread hesitation.
A beast is poised to strike.
(Control, remember, is illusory.)
Desiring reconnection with life,
a longing for purposeful normalcy,
I push forward, intentionally ignoring
advice to the contrary.
Original intention well-meaning
(but not thought through)
minimal exertion is what’s called for,
but I feel inspired to do more.
Former strength now lost,
new awareness on the periphery,
hindered only by this cloudy head-
executive functioning currently disabled.
Bottom line is I must come clean,
stop overstating my capacity,
accept the unpredictable,
and recognize my limitations.
Embrace the lesson of constraints
and stop sabotaging the journey.
I am what I am, not a former definition
based on a life now redundant.
Naked, I fear that someone will see me –
I fear that they will not see me –
desire for acknowledgment,
a very human condition.
I need to ignore the obstacles,
wholeheartedly, without compromise,
reveal myself – no longer hidden.
I am, after all, what I am.
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.
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.
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.
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:Â 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:Â Loss of brain power:Â 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:Â 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:Â 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:Â 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.]
1:15Â 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:Â 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:Â 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?
It’s been almost a year since I received the diagnosis of ME/CFS; two years since the visits to the emergency room escalated and I knew something was very wrong; four years since I suspected my system wasn’t working right. Step by step along the way I have died in little pieces: watching my dreams (some shared, some personal) slip away.
While waiting for the results of Thor’s biopsy we made out a bucket list:Â places we wanted to travel, activities to pursue, risks to take – all requiring energy – all beyond my capabilities right now.
I am told that people recover from this disease – thirty percent completely – and others learn to adapt to the eventual return of some functioning – and so I keep hoping.
I am not one to believe that life is a haphazard set of events and then we die. I believe that there is purpose and opportunity around every corner and that the trials we are given are invitations to delve deeper into the mysteries of the universe and the wonders within.
With this mindset, I await the first dawning of new light:Â the birth of something new.
Every day I am letting go and surrendering -accepting – this process with an open heart and mind, anxious for the labour pains to begin.
Life remains pregnant with possibilities.
One Woman's Quest 