Pep Talk

I’ve faced worse, I told myself when the diagnosis came; I’ll get through this too.

And I believe it.   Whatever it takes, I am committed.

That doesn’t mean that the struggle is lessened in any way.  The struggle is very real.

It begins with knowing self.  I’ve never been one to accept anything at face value.

When a doctor told me that I wouldn’t be able to carry a pregnancy to full term because of issues with my back, I thanked him and looked for alternatives – giving birth to three healthy babies, no further problems.

When another doctor told me that I’d likely have to be on mood-altering drugs for life following an acute episode of debilitating depression, I started researching cause and optional approaches, and reached out for support and therapy, successfully avoiding the original prognosis.

thI am willing to do the work, and if it takes trial and error, well that is okay.  At least I’m trying.

The difficulty lies in determining how to measure progress.   I am an action-oriented person, who would rather get a job done and rest later (if there’s room left to rest), but healing doesn’t work this way.  It takes time, and demands patience.  I have to remind myself to step back and re-evaluate from time to time.

Now feels like one of those moments.

If I follow all the literature, and chats, about Myalgic Encephalomyelitis then I might come to believe that the hope for recovery is limited and only ever temporary.  This is not acceptable for me.  I still have life I want to live.  Hell, I’m living life.  The fact that I’m currently experiencing a setback only means that I need to reset, readjust.  It doesn’t mean there hasn’t been progress.

Four months ago, when we left our hometown and headed out on the road, I could barely walk across a parking lot.  In Memphis, I walked a block before my ankle snapped, and still I pushed on, enduring a loud bus tour.  It knocked me out for a few days.

Even when we arrived in Texas, I was still struggling to stand up after sitting for a meal, but I did manage to attend and participate in a couple of watercolour painting classes.  Progress.  In Arizona, with the dry air, I haven’t had to rely on allergy and asthma medication to get me through each day, and my legs are getting stronger.

th-1As imperceptible as change may be day-to-day, it is undeniably present in the bigger picture.  Compared to the beginning of this journey, I can walk further, and when I do get knocked down, the recovery is quicker.  I need to keep this in perspective.  Yes, repercussions did happen after the trip to Sedona, and I am still trying to regain ground. But when I think back to my first specialist appointment, after first becoming ill – 2 1/2 hours out of bed that resulted in a three-week crash – I have come a long way.

This is but one more mountain in a lifetime of mountains.  I am still climbing.

 

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.

 

 

 

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.