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.

Backlash

Myalgic encephalomyelitis (ME) manifests in many ways, often different from one person to the next, and even in one individual the symptoms can fluctuate, however; the one constant is PEM or post-exertional malaise.  PEM hit me two days after we returned from Sedona.

grungemtnI had been doing so well.  My legs, which usually give me such a hard time, carried me up the mountainside in Sedona with no noticeable strain.  I honoured my body by resting it the next day, and felt well enough to accompany Ric to the grocery store the following day.  In fact, my legs felt so good that I opted to walk the grocery aisles instead of riding the mobility cart.

I was beginning to believe that I had experienced a miracle, except half way through the grocery store that familiar dizziness set in, and by the time we made it to checkout, I noticed that my heart rate was elevated and my spine was out of charge.

“I need to get home to bed,” I warned Ric.  As usual, he ended up bringing all the groceries in.  I put away the freezer and refrigerator stuff as quickly as I could, and crashed, spending the rest of the day lying down.

“Do you feel up to doing something today?”  Ric asked me the following morning.

Always a trick question.  I am always up to “doing something” and not always good at reading my body’s signs.  “Sure,” I said.

So, we went for a drive, walked around a nature centre, stopped for lunch and came home.  Symptoms were exacerbating.  The bright light of the day was too much for my head which felt like it was on fire.  I couldn’t stay awake in the car, and my stomach swelled accompanied by pain and nausea.  By the time I got home and went to the bathroom, I had started to bleed.  (It happens when I’m overtaxed.  A side-effect of diverticulosis, I believe.)

oldstatueThe bleeding continued throughout the next day, and I avoided food.  By nighttime it had settled down somewhat, but my stomach still felt sore, bruised.

The next day, I couldn’t wake up.  Everything I did exhausted me, so I spent most of the day curled up in the foetal position, asleep.

I grew up with a father who spouted Norman Vincent Peale and Dale Carnegie.  He believed in mind over matter.  He taught us to be tough and that quitter’s never win.  Believe me when I tell you that I have overcome some tough stuff in my life – even tougher than this stupid disease – but there are times when you just to have to lay down and throw in the towel.  For a day or so.

I haven’t defeated this illness yet, but I’m also not done fighting.

Tomorrow’s a new day.

 

 

 

Where’s Maude When You Need Her?

Following a comment I made on Twitter about how patients with ME/CFS are dismissed when presenting at Emergency, a fellow twitterer sent me this link.  Leave it to Golden Girl Maude to articulate so clearly the sentiment of so many who have wrestled with the medical community looking for answers.

No one can lecture like Maude can:

(Daily Post prompt is lecture.)

Thanks to Gina McGalliard @GinaMcGalliard for sharing this with me.

Illness Anxiety Disorder

An excellent perspective on diseases seldom understood:

KO Rural Mad As Hell Blog

“Please write something from a medical perspective about anxious people who worry every little thing is some serious disease.” — reQuest 2018

This is quite a brilliant and timely question.

Here: https://www.anxiety.org/hypochondriasis-replaced-by-two-new-disorders-in-dsm-5.

The DSM V was published on May 18, 2013. This is the Diagnostic and Statistical Manual of Mental Disorders version 5,  and it redefines various disorders. For example, opiate dependence has disappeared and so has opiate addiction. Instead, there is one diagnosis: opiate overuse syndrome. Which really combines both opiate addiction and opiate dependence and makes it a spectrum.

The DSM V drops hypochondriasis. Wait, you say, that diagnosis no longer exists? Well, yes, correct. So the diagnoses are made up? Yes, as my daughter says, “All the words are made up.” So psychiatry changes and the diagnosis definitions change and some diagnoses disappear. Medicine is like the Oregon Dunes, really. The information is changing daily. I…

View original post 769 more words

M.E. and the Brain

a9d3ddd404310204391660f87425d980My brain does not function properly.  I’ve written before about the difficulty in retrieving words and processing information, all symptoms of Myalgic Encephalomyelitis.  Another bi-product of inflammation on the brain, or perhaps it’s the nervous system, is that my mind locks on something and won’t let it go.

Typically, during the day, I can distract myself; it’s the nights that are brutal.  Three nights now I have been unable to sleep.  Just as I can overstimulate my muscles and cause damage the same is true for my brain.

It’s as if I have these internal electrical storms.  An idea fires, sets off an emotional spark, ignites a psychological tempest.  It doesn’t matter what the issue is – how big or small – the result is the same:  the replay button gets stuck on go.

We’ve been stationary these past three days waiting for the cold front to pass.  I’ve used that time to sort through photos, catch up on some writing, paint, and finish a book I’ve been listening to on audio.  I haven’t had any physical exercise.

I thought the physical respite would be good, but I see now that physical activity is important, even if limited.  I need to give my mind a break, if not through sleep, then through meditation.  636027162121494433-1577018822_moderation1

As with all things in life, moderation is key.  It’s a work in progress.

If you don’t hear from my for a few days – I am giving my brain a rest.

 

RV-Able: Down Time

th-2Hubby and I just woke up after a twelve hour sleep.  Unheard of for him, a blessing for me.  Both of us were beyond tired yesterday.

The weather here is only five degrees celsius, so we slept with our mattress heaters on and hunkered in under the covers. Cozy.

This place we are staying is for ages 55+, so basically a retirement community.  The majority of people go to bed early and wake up with the sun.  Totally unregimented, we do as we please, but then keeping up with the locals becomes a problem.  There is literally something to do here, all day, every day.  Activities start at 8 am and go through to 9 pm or later.  Of course, we don’t participate in everything, but we try to do some.

Mondays is our birding meeting from 1-2.  Tuesday is my painting class from 9:30 – noon.  Wednesday is Camera Club at 3 and then cards at 7 pm.  Thursdays, I am usually crashed, so it’s a good day for Ric to do groceries, or get the washing done.  Friday, the birding group ventures outside the area in their quest to sight more birds.  Saturday is cards again, and Sunday – it’s usually another crash day.

th-3At home, we might have one or two social commitments a week, and that was enough.  I fear I’m stretching myself too much.  Knowing how much is too much is touchy with ME/CFS.  I don’t want to slide backwards.

So today, I’ll stay hunkered in against the cold, and lay low.

(Today’s prompt for The Daily Post is cozy.)

 

Please Watch “Unrest”

Just finished watching Jennifer Brea’s award-winning documentary on ME/CFS entitled, Unrest, and so many thoughts are racing through my mind.  This is an important film, not just for the millions missing because of this disease and their loved ones; it should be required viewing for all who work in the field of medicine, and those who influence it.

I am struck by Brea’s bravery: her willingness to share her most vulnerable moments with the camera.  I both wept with the familiarity of it all and smiled to see that others share in what feels like such an isolated condition.

ME/CFS is a loss of vitality; it is an unforgiving brick wall that stops individuals from carrying on with careers, interests, and even routine functioning.

It is also a beginning:  an opening of sorts, perhaps intangible at times, and yet, inarguable.  Watching Unrest, I am reminded of all the firsts I experienced after two years of being bedridden:  the first time I got my hair done, attended a movie theater, went out for tea with a friend.

Unrest is a story of loss; it is also a story of overcoming.  It is tragic, and heroic, and beautiful.  In the words of my husband, who viewed it with me:  “It is enlightening.”

Please watch this incredible documentary, and let others know.  Millions missing will thank you.

( Unrest is available on itunes.  Follow Jennifer Brea on Twitter @jenbrea.)

Sufficiency

My living room has beautiful big picture windows facing two directions, allotting me a full view of the neighbour’s front gardens to the north, and the constant comings and goings  on the  street in front of the house.  Lying on the couch with my morning cup of tea is how I like to greet the day.

On Sunday mornings, the rush of traffic is replaced by clusters of runners, with their long, sleek bodies, puffed out reddened faces, and self-satisfied grimaces.

“My wife had CFS,”  a man once told me, “but now she runs marathons.”

It is hard for me to believe.  The distance between my own physical capabilities and these weekend athletes far exceeds any race they might run, the copper-coloured legs of my sidekick walker remind me.

Maybe wheelchair races, I chuckle to myself.

Now that my life is confined to the four tiny rooms on the main floor of our home, I have new perspective.

I cannot remember a time when I did not feel lacking in my life – not enough hours in the day, not enough help, not enough money – but the truth is, in retrospect, I always had exactly what I needed.

Today, I do not have the legs to carry me swiftly on my way, nor do I have the energy to aspire to such feats, but I do have a home that I can easily navigate, surrounded by the endless beauty of Nature, and friends and family that truly care.

Abundance, I am discovering, is an attitude, not a state of material wealth.  It comes with the recognition that life is sufficiency, not lack.

(Note:  This passage originally appeared on One Woman’s Quest in October of 2014.  The house is gone now, of course, replaced by even smaller quarters, but the message still pertains.)

Systemic Describes ME/CFS

Systemic best describes the characteristic of ME/CFS:  the exhaustion, like a lead weight, hits muscles, organs, and brain creating an overall resistance to movement.  Physical energy is engaged in a battle against spirit.

Two weeks ago, I attended wedding preparations and celebrations, babysat my five-year-old granddaughter, and felt like I was finally progressing beyond this disease.  Optimism convinced me that it was time to start exercising more, to set a routine of rising early, to begin regaining the pattern of normal living.  Could it be that I’m actually turning a corner?  I dared to hope.

th-1And, then…WHAM!  Like a balloon deflating, I ran out of steam and the symptoms of ME reared up, mocking my naiveté:  sweats, rapid heart beat, constant fatigue, loss of cognitive functioning, breathing difficulties, headaches, and IBS.

Yesterday, I ignored the symptoms and determined to do something useful,  decided to take the garbage out.  Since Ric was not here, and my walker was in the back of his vehicle, I decided that I could ride the garbage to the dumpster on my mobility scooter.

Proudly, I mounted the beast, adjusted the bag between my legs, and set the speed for 8 km an hour – the park limit.  I made it around the nearest curve when the scooter decided to quit – just coasted to a silent stop.  Luckily, a young woman spotted me and offered a hand.  We pushed it back home, and plugged in the charger, hoping that was the problem, but then a strange noise started to emit from the speakers and neither of us knew what to do.

Another neighbour responded to the turmoil by offering to get her husband and running the garbage for me.  I felt so humiliated.  My efforts had backfired – instead of helping, I had only managed to be a nuisance.

Done in, I returned to bed, resigned.  It could have been much worse, I realized.  I might have made it across the park before the scooter died, and would have been stranded, unable to get back home.

I have limits, I reminded myself, flashing back to a conversation I’d had with my doctor over a year ago.  The limitations are real.

So today, I will once again cull back my expectations, shelve the self-improvement goals, and fly the white flag of surrender.  ME has won this round.

th-2I haven’t given up, though.  ME/CFS may be systemic, but it’s not constant.  There will be another reprieve, and when it comes, I’ll be ready – spirit armed with ambition.

Armed with Info

The floor reached out for me, pulling me down with alarming force.  I fought to remain upright, waves of nausea weakening my resolve.  One hand flew to my brow – now a pool of sweat – while the other searched for the phone.

I’m calling 9-1-1, I texted my husband.

“Stay with us, V.J.!”  the paramedic yelled.

I was down a well, the watery walls garbling his words, my words.  Couldn’t he see that I didn’t have the strength to answer?

I’d been fighting a throbbing ache in my jaw all night, finally caving at 4:20 am when I arose in search of pain killers.  Suddenly restless, I decided to stay up, and tackle my planned chores early.

I stripped the bed, did a full cycle of wash and had breakfast before the attack occurred.  A vision of my grandmother on her final day flashed through my mind.  She had been at a Judo lesson and lay down when she got home, saying she wasn’t feeling well.  She never got up again.

I can’t lay down, I told myself.  I was certain I would die.

“Your blood work is fine,” the resident informed me.  “Maybe take some baby aspirin, and something for the pain, and we’ll refer you to Urgent Care.”

I didn’t hear anything again for weeks, and by that time – the crisis behind me – I decided I would not pursue it further.

“To be quite honest,” I told the scheduler who eventually called, “I am tired of doctors, who knowing nothing about my disease, dismiss me. I’ve seen my share of cardiologists in the past and I have no desire to submit myself to that again.”

“Well, the doctor is not just a cardiologist and he is a good listener.  He won’t give up that easily.”

“Is he open to any information I might bring?”

“He is.  Bring along whatever you have.”

So, here I go again:  patient as educator.