And Then There Was Hope

Three years ago today, I dragged myself out of bed, and with the aid of my walker (and likely a wheelchair), I paid a visit to a local doctor/ practitioner of Functional Medicine.

Getting out in those days was a huge ordeal, and typically entailed a backlash that would last weeks. I was that sick. I was also desperate.

I found the notes on that early visit when searching through my archives, looking for an interesting anniversary in response to this week’s challenge.

My family doctor had cautioned me against hoping for too much, but this new doctor, soft spoken, listened to me intently, and took the time to explain, and then, we made a plan. A plan for recovery! Something I had not thought possible.

Three years ago today, I found renewed hope.

(To read the original post, click here. V.J.’s Weekly Challenge is anniversary. There’s still time to join in.)

Numbers and Chronic Illness

It’s been 5 years since illness knocked me off my feet.

Tuesday, I visited the doctor with a list of 12 symptoms to discuss. She had 4 things to cover with me. We spent 1 hour and she took 2 samples,
and set me up with 1 specialist and 3 more tests.

She gave me the second cognitive functioning test, which I scored 30/30 on, demonstrating that it is mental fatigue related to my illness and not dementia or other causing the current impairment.

Then she emailed me a link to the latest research and tips for managing this disease, with a note to make sure I watch the first video in the series recommending 6 steps to boost energy.

The video is based on circadian rhythms, recommends exposure to sunlight within 30 minutes of waking, exiting screens 1 hour before sleep, and limiting eating to 2 hour shorter window per day, among other things.

“This is a remitting and relapsing disease,” she told a discouraged me. “Go back to the basics and retrain yourself.”

The basics. Standing no longer than 7 minutes. Sitting upright, feet on floor, no longer than 15. If there is physical activity on 1 day, don’t plan anything for the next 2.

This week, I’ve challenged us to look at how numbers play out in our lives. Clearly, chronic illness can be defined by numeric patterns.

It all makes perfect sense, and should be doable, except my mind has so much more it wants to accomplish. Sigh.

(Written for V.J.’s Weekly Challenge: Numerology)

Appearances

Testing social waters –
that cherished state of interaction –
prone to revealing too much

have been homebound,
studying life without a facilitator,
now attempting to penetrate invisibility

gathering the salvageable bits –
minimal fragments of a once whole woman,
reaching out, reconnecting, reception mixed

much has passed me by –
no amount of homework can undo
this loss of sharpness, this dependent state

as achievement focused as ever –
would go back to work – my heart space –
if illness had not deemed me redundant

must be selective in sharing –
am met with disregard, my story, like a gunshot,
causes others to duck, glaze over, lack of scarring

a disappointment for those expecting
acts of heroism – scars command respect –
metaphors telling a linear story – my journey

not marked by projected deadlines –
origins of disease unknown, defies medical
knowledge, research lacking – I am estranged

who dares to question beyond the trembling
exterior, behold the opportunity that blesses me,
witness the gift of joy that comes with re-evaluation

when character overcomes strife,
and simplicity replaces frenetic ambition –
the outcome of enrolment in this life class.

(Appearances was penned in December, 2016, after two and half years of being primarily bed bound with Myalgic Encephalomyelitis.  As I gradually gained strength, my doctor suggested that I might attempt a few social outings.  What I had to talk about, when I had been out of the loop for so long, weighed heavily on my mind, as well as the fact that I have a little known disease – difficult for others to relate to.

Featured image is an original watercolour, Dreamy Coast

I submit this edited version for my weekly challenge: character.  To participate, just clink on the link. Thanks for reading.)

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Still Dreaming

HappinessJen at Tripping Through Treacle has inspired me to rewrite my bucket list.  Instead of focusing on loss, I can rethink my aspirations.  I love it!  This is a perfect activity for Myalgic Encephalomyelitis awareness month.

Actually, I feel like I’ve just had a bucket list year.   Thanks to my husband’s determination and constant willingness to overcome any challenge, this year I have been able to:

  • travel across the continent and experience new places
  • reunite with an old friend and meet new ones
  • start painting
  • learn photography
  • have my work published (no money yet – that will be on the new list)
  • envision new possibilities.

In a few months, I turn 60.  Given that my health is a constant concern, I cannot hope to travel to exotic places, or participate in extreme sports, or even grace the boards as I might have wished for in former years, however; I still have dreams.

I aspire to:

  • publish a book of poetry
  • finish the book I am writing
  • take the grandchildren on one of our journeys
  • spend more time in nature
  • write a children’s book for each of my grandchildren
  • earn an income from my creative work
  • walk everyday
  • spend the winters in Arizona
  • make a difference

Dreamanew.Life changes, it’s inevitable.  We can hold onto our dreams – at a cost – or reshape them.

I am choosing to believe that happiness is always an option.

 

 

The Path to Wellness

“You seem to be doing better; are you going back to work?”

Returning to work after time off due to flu, is expected.  There might be a day or so of feeling weak, but it’s soon forgotten as the body springs back into action.

Recovery from a debilitating illness, however, takes time.  There are, according to my doctor, stages of re-entry.

UnknownFor two and a half years, my life was defined by the struggle to just get dressed each day (a routine I stubbornly adhered to) and to manage food – preparation and consumption.  I had to depend on my husband and outside help to complete ordinary tasks, and interaction with the world beyond my bed was very limited: no television, no reading, no talking on the phone for more than fifteen minutes, and constant bedrest.  If I left the house for a medical appointment or treatment, the effort could set me back for days or weeks.

Gradually, almost imperceptibly, I started to regain some stamina – able to sit up for longer, managing to cook some of my own meals (as long as someone else did the prep work), and desiring of social contact.

“It’s important that you start to get out of the house,” my doctor advised.  “Not to do chores, but to have tea with a friend.”

My first outing, with a friend who is very understanding of my condition, ended abruptly, as having been sheltered from noise, lights and smells for so long, I felt overwhelmed, and too sick to continue.

imagesWith persistence, I learned to avoid noisy places.  When the weather was good, picking up a tea and taking it to a local park became a good option.  To be back amongst the living felt rejuvenating, hopeful.

In time, I could stay out longer, and became more adventurous  – having a meal out, or daring to venture into a store.  The first time I was able to go grocery shopping felt so liberating, even though I could only manage a couple of aisles.

Myalgic Enchephalomylelitis strips the victim of any sort of normalcy, reducing life to a bare minimum existence.  Coming back means rebuilding – slowly and one step at a time.

“Travel is the next important step in the healing process,” my doctor told me.  “Most would say work is, but work has stress and the body is not ready for that yet.”

We booked a summer getaway – two nights at a cottage – but the worry about what to bring, and how to pack set me back and we didn’t end up going.

So, my husband booked an inn, where meals were served and housekeeping available.  The travel alone made me too ill and I ended up staying in the room, but the change of scenery was wonderful and room service ensured I got the food I needed.

It took us three days to get me to a port for a cruise.  One day to drive to the airport, and then rest; the next day to fly out to Miami, followed by a crash; and the third day to board the ship.  While I didn’t get off the ship to explore the Caribbean islands, it was amazing to be on the water in a much more soothing climate.  We did, however, rule out travel involving planes, when we returned.

“You can expect a return of about 25% of your energy,” the doctor advised me.

8d52bd4ededbd515d13583bfd1f0779eI think it is fair to say I have experienced that, and on some days, maybe more.  Since we have been travelling across country in a motor home, I have discovered new passions, and thanks to my constant companion, have been able to get out into nature.   Certainly, in Arizona, I was able to walk greater distances, and felt as if healing was a real possibility.  I have  re-engaged with purpose and am starting to build new routines that inspire hope.

The question is:  Is this renewal sustainable?  As we head back into colder, more humid temperatures, my decline is perceptible.

“I feel it too,” Ric told me last night, when I expressed my frustration.  “Let’s just hope that the strength you experienced in Arizona left some lasting effects.”

“I have been talking to some people here, and we all agree if you can travel, you must be well enough to return to work,”  a friend tells me.

The remark ignites a rage in me.  None of these individuals has any knowledge of ME, nor my day-to-day struggle.  They have never had to come back from anything so tragically destructive.

Restoring physical health is just one part of the process.  I have reduced cognitive functioning to learn to deal with, as well as the inability to deal with stress (compromised adrenals) which will have to be sorted out before I can be considered employable again.

Ric just shakes his head when the conversation of work comes up, but I am not so certain.  I have worked, in one capacity or another, for fifty years.  Setting foot in a classroom again may not be in my future, but I am still leaving the door open.

In the meantime, in order to honour my body, and the healing process, I am taking it one step at a time.