Open to healing –
delve into the subconscious
create a space for inspiration.
Ignore limited capabilities –
no offerings are meager –
enter with pure intentions.
Embrace new starts
have faith in ability
be spurred into action.
The Self holds the answers,
creative expression is the key.
No expertise required.
She’s not in the kitchen –
presiding over the preparations,
thriving amidst the chatter,
tutting away thieving hands.
She’s not in the classroom –
mastering subjects,
upholding order,
ruling with a charitable hand.
Nor is she at social affairs –
smiling regally,
head bent in rapt attention,
compassion oozing forth.
The Queen is missing –
the poise and grace
that marked her carriage
has vanished without a trace.
Don’t ask the old woman –
tottering down the lane
stooped and stumbling –
she’s not all there.
Her mind’s a trickster,
her ego a petulant child
unwilling to concede wrong –
she’s merely the court jester.
Progress – seldom linear –
tosses me into unexpected decline –
stranded and incapacitated.
My son – with labour-hardened strength
leaps to my side, steadying me
and I feel the fear in his caring grip.
My daughter, ever compassionate,
reaches out for me with horror-filled eyes
as my body crumples onto the bed.
My husband, my oak, seeks to comfort
his voice betraying the helplessness
this futile predicament imposes.
Beloveds, I know that you see me
this dis-abled, non-functioning shell
weakened and sickly, lying on this bed.
Do not be deceived – that is not me –
it is only an illusion –
a vessel – temporarily fettered.
I am, in essence, beside you –
ambitions and desires intact.
Feel me there, tall and proud.
Sense the wholeness of my being
remember me for the woman I am yet to be –
My spirit stands strong.
I exist in the spaces –
crushed and flattened –
between the rocks that form
this mountain of grief.
Each sorrowful fragment
petrified, polished –
a collection of coldness
hardened and maintained.
I’ve never known how to grieve.
How do I shed the weightiness –
crawl out from the crevices –
breathe new life into myself?
Should I try to scale the mound?
Conquer my emotions?
Raise a flag to victory
and ultimate denial?
Or, one by one,
should I examine
and relive the losses
counting them till my head spins
and my heart beats no more?
Lacking the strength to do either
I sit and feel the hollow agony –
the overwhelming numbness
that precedes movement.
I live in the cracks
of this precariously constructed
shroud of stones –
a self-imposed prison –
and pray for resurrection.
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 started this blog four years ago while awaiting the results of a lumpectomy, facing the possibility of cancer and questioning life.  I ducked the bullet, but a year later my husband was not so lucky – he started treatment for Stage III prostate cancer. Then, to complicate matters, he ruptured his quad tendon and needed reparative surgery, which had to be repeated ten weeks later when he re-injured. The second surgery became infected and after a nightmare six months and five more operations, he was finally on the mend. We thought the worse was behind us until I was struck down by a life altering debilitating illness that has confined me to home. Roles in our house reversed and after a year of caring for my husband, he now has to look after me. It is a reality that we have learned to accept, believing that the worst is behind us.
We have been naive.
A recent visit to the doctor for a routine physical has resulted in a barrage of further tests and Thor finds himself back in the care of the specialist who originally delivered the cancer diagnosis. “There’s only a fifteen percent chance that this is cancer,” the doctor has told him, but we’ve both heard that before, and somehow, we are not as confident this time.
We are too familiar with all the signs.
So, as I write this, we are back to that awful place of waiting:Â waiting for the tests that will confirm or allay our fears; waiting to know if life will be put on hold yet again; waiting to know when it is safe to plan again.
Are we being tested? Is there opportunity in the midst of all this anguish, or is life just a random draw, and we have pulled the short straw?
In the end, we really have no control over what happens to us, and while we would not have chosen this path, there is not much we can do to change it.
We will put in our time these next few weeks, immersing ourselves in trivial distractions,
desperately trying to think about anything but the worse that can happen. “One step at a time,” we tell ourselves.
Forgive us if we falter in our obligations, or if we appear distant or disinterested. We have a lot on our minds.
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.)
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:
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!
4. 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!
7. 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.
g. 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.
One Woman's Quest 