Shake Ups

The new year grabbed me in a choke hold and hog-tied me before I had a chance to even think about what it might bring. It started with a text that my mother was in hospital, followed by a harried searching of flights and anxious speculating about how I’ll get home. Me, who hasn’t ventured anywhere without an escort for over four years.

Needless to say, I made it, and even though my symptoms are flaring and I’m exhausted, I am also pleased by what this effort portends. Dare I hope for an even greater return to life?

It’s been four-and-a-half years since I was diagnosed with Myalgic Encephalomyelitis – the disease that severely disrupted my life. In almost imperceptible graduations, I have improved. This recent shake up seems to have pushed me over a line from which I can redefine myself (unless a setback is triggered, which is always a concern.)

Mom has rallied around and is currently stable. The woman is incredible. Although she says she no longer wants to live with constant pain and struggles, she keeps going – insisting on walking me to the elevator after my visits and taking her meals in the dining room.

“At least I know you love me,” she pats my arm. “No need to come back again should something happen.”

She’s more worried about me being inconvenienced than she is about her own health. Ever the mother.

I have no regrets about coming, and as cliché as it sounds, I feel as if this happened for a reason. I needed something to break me out of my comfort level and stir me up.

“It’s like I’ve been living in a bubble,” I tried to explain to Mom. “No noise, constant rest, limited interaction, and measured outings.”

“It’s not right, at your age,” was her response. “You’re young yet.”

It’s not how I ever saw my life going, for sure, always so active and involved. I wonder now if I’ll ever get some of that back.

2019 has accosted me and thrown me 1600 miles off-base, but I also have a sense that this is what I have needed to break up the waxy build up that has been molding me into an ugly complacency.

I am sixty, and if my mother’s legacy is anything to go by, I still have thirty years left of life. Time to start setting a vision for myself, I’d say.



RV-Able: Flexibility Required

“I’d like to be on the road by 10:00 am,” Ric told me the night before our five and half month stay at the beach trailer park ended.  “There are high wind warnings for tomorrow afternoon, so we should be at our destination before they hit.”

I had pushed myself the night before to get the dishes packed away and all the loose articles stored for travel.  Despite Ric’s reassurance that it wouldn’t take very long, I am well aware of how quickly I tire (a symptom of ME/CFS), so I allowed myself extra time. He decided to leave the outside stuff for morning.

We awoke to a grey and damp day.  My body complained, but I waded through the slush to be ready.  Ric, a chronic procrastinater, waited for the last minute to start his tasks.

“It will only take me half an hour,” he promised, stepping out into the blustery day.

Having pulled in the slides on the RV, I lay on the couch, and listened to the sounds of curious neighbours stopping by to ask questions (they are all permanent residents at this park) and then I heard my husband curse.  We had a flat tire.

A flurry of male voices gathered as the problem was addressed, and I watched as our scheduled time to leave passed.  After a bit, I gave into my fatigue and napped.

Just after eleven, I awoke and looked out to see Ric, soaked and covered in mud still working at putting things away.  I threw on my coat and went out.

“Almost done,” he said cheerfully, blood dripping from one hand.

“Do you need something for that?” I asked, taking in his state of disarray with alarm.

He glanced at his hand then rubbed it on his shirt.  “All good,”  he said. “I’ll just run the truck to the road, then we’ll be underway.”

“I’ll drive the truck,” I said firmly, surprising both of us.  At least it was something I could do…well…at least something I might be able to do.  I haven’t driven in over three years – another side effect of this disease.

Driving the truck was easy – the speed limit here is only 8 km/hr.  Getting the RV out was going to be the tricky part.  We’d arrived at the end of the winter months before the trees had leaves and even then it was a tight fit.  To be honest, I was just happy to be an observer at that moment, but Ric drove it like a pro.

I eased the truck up behind and waited in the warmth of the motor home while Ric and another man hooked up the tow bar.  The rain was coming harder now, and when I checked the weather, it called for high winds at any moment.  Our plans were not going well.  Hooking up the tow seemed to be taking forever.

It was after noon when we headed out, and my drenched husband didn’t even take a break to wash up before pulling out.

“Are you okay?”  I asked, a question I would pose many times as the wind tossed us around on the road, and then again as we arrived at our destination and the now torrential downpour pummelled him while disconnecting the truck.  Every time, Ric had the same answer:

th-3“Of course, I am – it’s all part of the adventure!”

Hmmm, I thought to myself, I guess I need to rethink my definition of adventure. 

(Image: www.glenwoodnyc.com)

 

 

 

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.

Illness, Life’s Intruder

th-2Before illness (ME/CFS), I had my life lined up, like a shopkeeper perfectly aligning her shelves, ready to get down to business.  One more course and I would be at the top pay scale, qualified to fill many shoes in the education field.  I had landed my dreamed-for job in Special Education, and was starting to sell my individual brand of teaching philosophy.  On the home front, my husband and I had down-sized, talking about retirement, and travel, and the grandchildren were beginning to arrive on the scene filling our lives with sunshine.  Life was sweet as pie.th-1

Illness arrived like a gun-toting intruder, invading my carefully arranged plans and terrorizing our serenity.  In an instant our lives were turned upside down – plans scattered, career aborted – and I found myself physically grounded, disabled.

I would have ranted or raved, or thrown myself into deep depression, but I am too old for all that, old enough to know that with life comes calamity, and I told myself that I have suffered worse, so I just needed to get on with it.

Nevertheless, illness, like any loss, takes its toll, and as with all things unexpected (and unwelcome), it left me stunned, breathless, unable to respond with any sensibility.  So, I researched, rested, resigned myself, and eventually feel as if I turned a corner.  th-2

For the moment, the crisis has passed.  I am feeling stronger, or at the very least, more stable.  I feel as if I am standing in the center of my life taking inventory of the damage – mentally noting how widespread the damage is.

In time, I will have to start to sift through the rubble, pick up all the pieces and determine what is salvageable and what is not.  And somewhere along the line, I will have to learn to trust life again, to learn how to live with the knowledge that everything can be violently swept away in an instant,  and yet keep going.

Just one of life’s paradoxes.

 

When Caregivers Need Caring

Up until six weeks ago, my husband was my full-time caregiver.  A heart attack turned that upside down in a hurry, but with the help of friends and then hired assistance we have figured it out, and life goes on.  Except that…

…expectations have changed;

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…communication has broken down;

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(Image from:  robliano.wordpress.com)

…we are both now trying to protect each other, neither of us essentially well, and therefore, stumbling in our efforts, and perhaps making things worse;

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…and, some days, it just all sucks!

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Tale of Kidnapping Inspirational

Amanda Lindhout, along with Sara Corbett, has written a riveting tale of her kidnapping and captivity during a trip to Somalia.

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I first became interested in Lindhout’s story when I caught a glimpse of an interview on a television program.  How, I wondered, does someone survive such a horrendous experience?

A House in the Sky, is both haunting in its candidness and incredibly inspirational.  It displays the depravity of human nature and the indefatigable strength of spirit.

The description in the book, along with Amanda’s willingness to self-reflect, makes for a very engaging read, and more than that, I have found a modern-day heroine from whom I have drawn strength for my own life’s struggles.

Amanda Lindhout’s organization is Global Enrichment Foundation.

Tribulations

Preoccupation with my own woes blinded me to my husband’s suffering, which culminated in a heart attack on Saturday night.  We are shell-shocked.th-2

“That’s what happens to caregivers,” a callous nurse commented.  Am I supposed to feel guilty?

Unable to either drive myself, or push my own wheelchair, I am reliant on the goodwill of others to get me to the hospital, although even then, my body’s limits scream:  Halt!

I trust that my husband is in good hands, and getting the help he needs.  Meanwhile, I am home, alone, processing a gamut of emotions and what if’s.

thThis is not his first heart attack.  The first was silent, and according to the specialists, all but fatal.  It caused sufficient damage to have us all on edge.  Thank God I saw the signs and called 9-1-1 this time around.  The hospital said they will not release him until either medications are in place, or surgery has corrected the issue.

Our dreams have been so focused on RV travel  that we have thought of little else, least of all the possibility that one of us would be gone and the other left to pick up the pieces.  As terrifying as it may be, this recent incident has forced me to face reality.  I am a fifty-seven-year-old, totally dependent female, who would not be able to maintain this lifestyle without the love and support of my husband.

I mentioned this to my son, whose words offered reassurance, but whose tone of voice conveyed a whole other message:  How has our strong, independent mother come to this?  Why can’t she just get better and get on with life?  It has been hard enough for my children to come to terms with my illness, and thanks to Ric, they really haven’t had to consider my dependency.  They still think of me as the super-charged single mother that raised them.  Weakness was never an option then.

I am angry too – the kind of anger that looks for blame and is seldom satisfied.  He is feeling it too, I know, because he lashed out at me for offering information to the doctor that contradicted his own answer.  I almost think that the separation is good for us right now, as it gives us a cooling down time.  th-1

Something as serious as heart disease requires major changes – all the doctors have said so – and I worry that he will be able to follow through.   My brilliant, big hearted husband, has slayed many dragons on behalf of others, but not so much for himself.  I only hope that he can turn some of that indefatigable fighting attitude inwards and value himself enough to make the hard, but necessary, shifts.

 

Sorry, I Swear

Used the ‘f’ word last night – added and ‘ing’ for extra emphasis – flung it with a full throttle hostility.  It startled both my husband and myself, and we have been tiptoeing around each other ever since.  th

It is not like me to lose my temper, or at least not to express myself with vile expletives – that only happens when I am really at wit’s end.  So what triggered the episode?

On the surface, it was about food.  I had been anticipating a healthy dinner of salmon with lentils and kale all day, and when my husband returned from a meeting too tired to tackle it, suggesting takeout again, I blew.  Having managed only one decent meal a day over the past few days, I needed something of substance and said so … in as many words.

th-1The meal squabble is only the tip of a larger issue, a growing frustration, and resulting irritation related to loss of independence.  Living with chronic illness and losing mobility means I rely on others to see that my needs are met – a condition that is counter to my instincts, and certainly my sense of pride.  Whatever control over my life that I had experienced prior to disability is now gone.

The difference between depression and ME/CFS is that with depression what was once pleasurable no longer holds interest, whereas with ME/CFS, the desire is intact but the ability to follow through is impaired.  For example, now that spring has reared her glorious head, I feel the impulse to clean, re-organize, and cull the clutter that we’ve collected over the winter months.  Beyond thinking about it, the physical energy that it takes to actually do it is M.I.A.  th-3

Yesterday, I woke up early, caught the excitement of the sun’s radiance, and set about making something of the day: washed my hair, stripped the bed, remade it, and….crashed, unable to do the simplest of task afterwards.  Enthusiasm (or positive mental attitude) is not the magic bullet to overcome the challenges of this disease.

th-2Today, still unwilling to be daunted, I am taking a more cautious, measured approach:  woke up later, put on the kettle, made the bed, made tea, returned to bed.  After a while, made breakfast, returned to bed, listened to a book on tape for a bit, got dressed, looked at the closet, went back to bed.  This is what is called ‘pacing’ – doling out energy in small allotments, mindful of the limited source.

Now that progress is measured in teaspoonfuls, I still feel the angst of having a full schedule – a remnant of my former, no-time-to-breathe, lifestyle.  I am pressured (from within) to get-it-done, spend unavailable resources trying to come up with solutions, push myself to do one more thing, come away distraught with little to show for my efforts; surrender to the impotency and wait for the next (almost imperceptible) surge.  th-4

This is the nature of my irritation.  Intellectually, I know that acceptance conquers more than resistance, and that with patience and adherence to my body’s signals I will, in time, be better, however; I am not merely an intellectual being, and goddamnit, enough is enough!

I am f#@*ng ready to get on with life!
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But I Want To!

“Remember that healthy individuals, when they wake up each morning, their bar is way up here,” my doctor holds one arm up at forehead level and her other arm at waist level to demonstrate meaning.  “As the day progresses, their energy level naturally decreases”, she lowers her arm in illustration. “You, on the other hand, start each day below the bar, somewhere down here.”  She moves the raised arm to pelvic level and then lower.  “Without restorative sleep, you are constantly running on a deficit.”  th

“Yeah, yeah!” I nod.  She’s been telling me this for two years, so why is it so hard for me to grasp the concept?

I’ve come to the doctor today to talk about my declining cognitive functioning.  While I do have more energy than last year at this time (can be out of bed for two hours without symptoms, as opposed to one a year ago) I find that my mental capacity is far worse.

“Go back to the beginning, and start to log your activities again,”  she advises.  “Look for the patterns that may be causing this symptom.”

I don’t have to go back.  I already know.  The demands of living with this chronic condition are counterintuitive to my natural instincts.  I am wired to be a doer, and cannot bear to be unproductive.  It is a daily battle for constraint, ensuring that I don’t over exert myself thereby causing a crash.  It is one thing to limit physical activity, and quite another to try to control the mind or emotions.

Delighted to have a tad more energy, I am motivated to use it to the fullest, setting goals, starting projects, anything that will make me feel normal again.
I have vowed to post more often, am working on solutions to the healthy eating conundrum, in other words, using a lot of mental energy.  So my mind is pushing back.

It’s that simple and yet that complicated.  th-1

“When I want to do something,” my husband tries to explain, “I can approach it at a slower pace, MacGyver a thing or two, and get it done.  For you, it’s a matter of can’t.”

Has anybody else read Dr. Christiane Northrup?  She says there is no such thing as can’t, only won’t.  Unwillingness is the first step to failure in my mind, so how can I convince myself that “can’t” is an option for me?

I was not born to be a vegetable, even though my nickname is Veg (pronounced vee-j).  I have too much that I want to do and accomplish.  It is not enough for me to merely exist, or even survive:  I want to thrive.

For now, I need to rest for awhile.  Just writing this has exhausted me.
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