Chronically Hopeful Award

Terri, at Reclaiming Hope, has nominated me for the Chronically Hopeful Award, created by Pamela from There is Always Hope.

I am so inspired by Terri’s commitment to health and her no-nonsense, honest advice for coping with the ongoing struggle. Finding Terri here in the blogosphere has been a highlight of my experience and I now count her as a dear and supportive friend.

So, thank you, Terri, for thinking of me.

In response to Terri’s questions:

What’s the biggest lesson you’ve learned since starting your blog?
This question makes me smile, because it’s all been a huge learning curve. I find though that when I post what touches me, it also reaches others.

If you could tell people ONE thing about living with a chronic illness, mental illness or disability, what would you want the general public to know???
In a typical week, I am targeted by “friends” or new followers who want to sell me their “sure cure”. I work with professionals committed to helping me manage my illness. I have neither the energy, nor financial resources, to try every new thing that comes along.

Why did you decide to start your blog/advocacy work?
I don’t think we are ever meant to go through anything alone. Creating a blog gave me a doable forum to open up discussions and find others. For the first three years of this blog I was bedridden, so socially isolated. My blogging community kept me connected to life.

What is one thing you’re really good at?
Connecting with others. I genuinely love people. Connecting is always such a gift.

What do you like to do for enjoyment?
Drive through the country and take photographs. It gives me something to ponder and play with when I’m home resting my body. Painting and writing are right up there as favourite activities too.

My nominees:

AWISEWOMANSJOURNEY – Deborah never fails to inspire me with her quotations, photographs, and poetry.

Elaine’s Blog – I was first drawn to Elaine’s blog by her art, and then I discovered a kindred soul also struggling with health issues. Love Elaine’s straightforward posts.

Therapy Bits – There isn’t enough room here to say everything I could about Carol Anne et al. I am always awed by her undaunted spirit.

Night Owl Poetry – Dorinda is a fellow poet, who also suffers chronic illness. Another warrior spirit whom I admire.

(Disclaimer: I do not normally participate in awards as the task overwhelms me. I am now overwhelmed, so will leave off here as far as nominees go.)

Here are the rules:

  • Thank your nominator
  • Recognize Pamela from There Is Always Hope as the creator of this award and link her URL – https://pamelajessen.com
  • Use the Chronically Hopeful Award logo somewhere in your post
  • Copy these rules onto your post
  • Answer your nominator’s questions
  • Write 5-10 of your own questions (they don’t need to be illness related)
  • Nominate 5-10 other chronic illness, mental illness, or disability bloggers
  • Comment on each of your nominees’ latest posts to tell them they have been nominated

My questions for nominees, should they accept:

  1. What has been the greatest gift that illness has given you?
  2. What personality trait do you think has helped you cope?
  3. Favourite gripe?
  4. If I could bring you something to make your day, what would it be?
  5. Tell me a quotation or affirmation that keeps you going.

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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Confessions of Losses and Gains

Illness comes at a cost, yet even as the losses add up, there are gains.

HoneymoongolfingWith the onset of summer, I recall leisurely hours spent golfing with my husband, or friends – a pastime we so loved.  My clubs now take up residence elsewhere, these muscles unfit for the exertion required.

My tennis racquet sits dormant too – a remnant of a passion now redundant.

I miss gatherings at a pool side bar, or a downtown patio – the sound of laughter mingling with the crisp, dry burn of white wine.  My system no longer tolerates alcohol, and outings have changed with priorities.

cheers 2I am no longer the woman, whom my husband called Lucille Ball, whose sunny demeanour and fiery presence guaranteed lively repartee.  The setbacks have softened my edges, this lingering condition evoking a vulnerability that avoids noise, scents, and the overstimulation of crowds.

Where once ambition drove me, and career set precedence for aspirations, I now  live with solitude, find solace in the quiet, have donned a new lens which invites discovery.

Loss has flooded with all the force of a tidal wave, and even as I swim against the pull of despair, I am labouring to redefine purpose, self.

 

IMG_1646I confess that there has been sorrow.  I can attest to darkness.  And, yet, wrapped in all that discord there have been blessings:  awakenings.  I have discovered delight in developing a photographic eye, and the infinite pleasure of daring to express in colour.

(This post is inspired by Manic Mondays 3 Way Prompt: Confession.  Thanks to Laura for hosting.  All photos are from personal collection.  The images of me are from healthier days, when apparently I loved kiwi green.  The watercolour is a close up of a saguaro, if it was orange.)

 

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.

 

 

RV-Able: Where It All Began

Four years ago, I was diagnosed with Myalgic Encephalomyelitis, a disease which affects all systems in the body and landed me in bed, barely able to complete the simplest of tasks.  Fast forward two years later, and my problem-solving husband is looking for a way to give me some life back.  This post from February 2016 explains:

RV Kidding?

One of the last things my ex-husband did before becoming an ex, was to show up with a used motor home, unexpectedly.  I won’t get into the details here, but suffice to say it was neither discussed in advance, nor a suitable vehicle for family outings.                                                     th-2(Okay, it wasn’t that bad…quite.)

So, when I met my current husband and he expressed a passion for travel, I said I was game as long as it didn’t involve an RV.  It has become an inside joke.  Every time I “act up” he threatens to get the RV.  We both laugh.

Then a week or so ago, he mentioned that if he won the lottery, he’d want to buy an RV and drive me across the country.

“Are you kidding?”  I asked cautiously.

“Just a thought.”

Then last night he kept calling out possible options:     th-3

“This one has a washer/dryer.”

“What, and be robbed of the whole laundromat experience?” My sorrowful attempt to get back to the joke.

“Or you can get sleep comfort beds.”

I would let it drop, but I know better.  This is the man who once told me he was going to get our tires changed and came back with a totally different car.  (Did I just see a pattern forming?)

“Too good of a deal to pass up,”  he told me.

Luckily, I liked the new car better.  Point is, I’ve learned that if he mentions something, he could very well be on his way to making it happen.

Today, he came home from work and before removing his coat, blurted out:  “There’s a motor home, the kind with the washer/ dryer, on sale just a few towns over.”

I really didn’t know what to say.  Apparently, he is serious.

“I just thought that if we had a vehicle with a built-in bed, I could drive you
around the country and you could lie down.”

Please appreciate that before I became ill, travel was a regular occurrence for us. Now it is just one obstacle after another to overcome, mainly that my system cannot tolerate sitting or standing for long enough to get us anywhere significant, and should we dare to override that challenge, I will be too done in to enjoy the destination.

Couple that with my husband’s compulsion to problem-solve and what do you get:  A motor home.                                          th

In the interest of compromise,  I suggested that perhaps renting one and trying it out would be more practical than purchasing one.

“Renting is so expensive!” he argued.

“More expensive than buying one, using it once, and then swallowing the depreciation value?”

With a gleam his eye, he responded:  “I could always put a sign on it reading:  Husband’s dog house.

Last time I checked, he’s googling travel routes for RVers.

I’ll keep you posted.

(Except, now you know that two years later, it is happening!)