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.

ME Awareness May 12th

dreamingIt is just past noon and I am still in bed.  It is doubtful that I will be able to do much else today.

Yesterday, I went for lunch with my daughter, her mother-in-law and the baby, an occasion for which I rested up.  One hour we were gone, and then I came home for a nap.

Then my husband and I decided, spur-of-the-moment, that taking my Mom out for dinner would be better than waiting for Mother’s Day, so we did that.

While we were eating a friend texted and asked if I could come over.  She is battling for her life right now and I want to be with her as much as possible.  My husband dropped me off for a short visit on the way home.

Yes, people with moderate ME/CFS can do things, but everything comes at a price.

As tired as I was last evening, I had overstimulated myself, so sleep was elusive.  At 10:00 this morning, my husband came in with a cup of tea.  I only just now managed to eat a piece of toast.

th-1.jpgThe exhaustion of ME is systemic.  It’s not the kind of tired that comes from having overworked: a well-earned fatigue leading to deep slumber.  It’s more than the fatigue at the end of weekend of company, although many try to tell me they know what I’m feeling.  It is dead weight burn out:  the incapacity to generate enough energy to activate movement.  It accompanies any exertion no matter how minimal.  And, it can last for days.

It means that those of us who suffer from ME/CFS have to be selective about what we commit to.  It means that we have to disappoint people and bear the guilt of not being able to be all things for all people anymore (most of us were that person before disease struck).

Yesterday, I exceeded my normal activity level times three.  Today, I will lie here contemplating washing my hair for much of the day, likely not being able to conger up the necessary fuel to do so.  th-2

Hopefully, tomorrow is better.  Can’t count on it though:  this is ME.

Policy vs Need

“I can’t process your application with the information I’ve been given,” the woman on the phone is officious, likely hates her job, I theorize.  “Your doctor has only sent me four medical reports; there is not enough here to support an inability to work.”

th-4I might have guffawed at this.  “I can barely manage day-to-day living,” I tell her, “working isn’t even within my realm of capabilities right now.”

“I’m not challenging your diagnosis,” she is quick to reassure me.  “But I need empirical evidence.  There is nothing here to indicate what treatment regimes have been tried and failed.”

I explain about the chemical sensitivity – how every drug we have tried has had an adverse effect, some landing me in emergency.

“I don’t see that in your paperwork.”

I rack my brain for when we discovered that – even before my diagnosis, I think.

I tell her about how I am unable to drive, have cognitive impairment, and suffer from systemic exhaustion.

“I don’t see any evidence of that here.”

I get it.  She is performing a clerical job, and has boxes to tick.  No wonder she is so defensive.  Imagine having to call up severely disabled individuals and tell them that short of going back to work, there is no help for them as far as their government is concerned.

th-3Three years I have been homebound – two of that bedbound.  My case has been documented by my current insurance company every three months during this time.  At the two-year mark, my long-term disability provider required that I apply for CPP (Canadian Pension Plan) disability coverage.  At this point, I had imagined it would be simply procedural.

“You will have to appeal it; hopefully, your doctor will provide better records at that time.”

“So you’re telling me I’m between a rock and hard place.”

“Nooo…your coverage will continue with your current company.  We just have stricter requirements than they do.”

th-2“And likely no knowledge of this disease…” I add, cynically.  She doesn’t admit it, but it’s true.  Myalgic Encephalomyelitis (aka Chronic Fatigue Syndrome) falls outside of the scope of knowledge of many fields affecting well-being – medical, governmental, insurance, etc.

“How can I help you…help this process?”  I ask.  “Believe me when I say, I am not in a position to resume my life, and my need for support is very real.”

“Well, let me give it further consideration,”  she says.

She hangs up and I am struck by such a feeling of helplessness that I can’t move.

What happens to people who don’t have company benefits?  I wonder.  What happens to those who are fighting this battle alone?  Who advocates for them?

“I came this close to losing my home,”  I remember another telling me about her journey with ME/CFS.  She was forced to quit her professional practice and apply for disability at a time when even less was known about the disease.

I know that there have been cases of abuse and fraud that have forced stricter regulations.  That’s why insurance companies pay for surveillance, and make the sick jump through so many hoops.  I fail to understand why the government deems it necessary to have stricter criteria.

It’s been days since this conversation, yet still I am haunted by the realization that there are individuals suffering with physical, mental, or emotional disabilities who are not getting the support and services they need.  I am not alone in this fight.  I am one of many.  I am luckier than most.

Something needs to change.

I’m reminded of a poem I originally wrote in October of 2016:  What Future?

(Visit Solve ME/CFS Initiative for more information about this disease.)

 

 

Body Talks

Listen to your body.

Glib advice, especially if ignoring the body is habitual, and compliance is not listed as  a character trait.

What would my body have to say, I wonder.

My legs, stiff and inflexible, lumbering along like Frankenstein; are they telling me to put them up, resign myself to rest?

thMy arms, heavy with fatigue, pained if I reach out, refusing to give me strength:  would they tell me to quit trying?

My skin, crawling with invisible bugs, nerve endings biting as if shouting:  “Overstimulation!  Shut it down!”

My lungs, constricted, shallow breathers, are suggesting life is limited, and is this constant rapidly beating heart signaling that effort is futile?

The spasms, in muscles, in my bowels, aren’t they bullying me into submission?

Even my mind has turned its back (if that is possible), reminding me of my usefulness.

If I listen to my body, I will lose hope.  I will lie down, and never get up again.

I am sticking to non-compliance, and hitching my hope to will.  Mine and God’s.

As soon as I can get out of this bed….

 

 

 

 

Dreaming Of Work

I dream that I am teaching again, have two classes:  a grade 9 Math first thing in the morning and a senior History last period.  I am late, so someone else has to start the Math class, and when I do arrive, I am unprepared and uncertain that I can proceed.  Last class is more club-like than a classroom and I struggle to be heard until another teacher comes to help.  Nothing is working and I have to admit that it is all beyond me.

One of the functions of dreams is to aid in processing prevalent life issues.  Since illness struck in 2014, I have not been able to work: a situation that haunts me relentlessly.  I truly believed that teaching was my life’s calling. th-1

I go over and over in my head, how I could make it work.  Teaching only one or two classes is a solution I always land on, but the dream reminds me that I would have no control over my schedule, nor what I taught.  Having two classes at either end of the school day would solve nothing in terms of managing energy.  As the dream reminds me, I could be asked to teach anything (and have) whether it’s in my area of expertise, or not.  (Math and History are definitely not what an English/French teacher would choose.)

The crucial message in the dream, though, is that I would arrive late and unprepared – two things I’d never do when I was well.  Mornings, I am reminded, are my worst time of day now, as battling the fatigue and lethargy in my body is a constant challenge.  Even at the end of my teaching days, I would fall asleep at the wheel on the way to work – part of why I conceded to go off in the first place.  That has not changed, in fact; I no longer drive.

I also would not have the energy to prepare for classes that I once had.  In the past, I would spend hours each day putting together lessons for the days ahead, trying to be organized enough to handle any situation that might present itself.   I just don’t have the stamina necessary to do that right now, as the dream gently points out.th-3

Before I was diagnosed with ME/CFS, I struggled each day with being able to get enough air to project to a classroom.  Standing and sitting became a struggle.  I would sweat, and the harder I tried to pull myself together, I felt on the verge of passing out.  I now know this is characteristic of the disease, and as much as I’d like to think I could overcome the other challenges of teaching, the reality is, my body is just not capable.

Disability is so much more than just a physical challenge.  It is about loss of livelihood.  It is about losing a sense of self, purpose, and conceding to a path no one would choose for themselves.  It is mentally coming to terms with the fact that how you once defined yourself is no longer relevant, and that going back is not an option, no matter how much your soul yearns for it.

At the end of the dream, I surrender to the fact that I have a long way to go before I can teach again.  Maybe, I’ll never get there.

Maybe, hopefully, in the letting go, I will find renewed purpose.th-1.jpg

 

Better Is A Relative Expression

“How are you?” my friend asked me the other morning – an innocuous enough question, if the recipient is not suffering from chronic illness.

Apart from the odd text here and there, I hadn’t talked to this friend for months, so I answered a pat:

“Better.”

I had really called her because I knew she was scheduled for surgery and I wanted to let her know I was thinking of her.   I hadn’t intended for this call to be about me.

“Well, that’s great.  So are you going back to work, or are just going to take it easy for a bit?” th-1

Her question threw me.  Go back to work?  Take it easy?  WTF?

“You don’t need toxic people like that in your life,” my home care worker tutted.  “She has no idea of what you are going through.”

I think she might have been more incensed than me.

When are you going back to work? is a question that I have to answer every three months for my long-term disability provider.  It’s a problem that plagues me constantly.

I would love to go back to work – have worked since I was fourteen-years-old and always prided myself on my independence.   Losing my ability to be gainfully employed has been one of the great losses of ME/CFS.

“Well, I have a way to go before I can think about work,”  I responded after a long pause, and wrapped up the conversation.  This is the same friend that once told me I wasn’t doing enough to get better – that laying in bed all day was giving in too easy.

I laid in bed because I couldn’t physically get up; it’s the unholy truth about this disease.

I am better in that I spend less time in bed now.  I still have to lie down several times a day, and am generally in bed for the night around 6:00 pm, but the improvement is noticeable.  It hardly constitutes a full recovery.

“There are many things I have to accomplish before I can think about working,” I told my disability representative in our last conversation.  “I need to be able to manage the basics of living, such as laundry, shopping or driving. And I need to be able to rely on my brain.”th-2

“I see,” he said, obviously making notes in the background.

I doubt it, I thought.  No one really understands the extent to which chronic illness invades and permeates the life of the person affected.  No one except those who have been afflicted.

 

 

 

See It From Disability’s Side

If you’ve ever wondered what living with a disability feels like, imagine this:

  1.  Judgment is your constant companion.  Family, friends, and even total strangers will suddenly feel entitled to express opinions about your condition, lack of trying, mental attitude, the latest trends in healing, and so on.  You may be berated for using a handicap parking space (even though you have a sticker), especially if it’s on a day where you are trying to walk a bit.  If your gait is unsteady, and slow, you may be mistaken for a drunk.  Imagine living 24/7 with the stereotypical critical mother-in-law: that’s what it feels like.th
  2. You are completely dependent on the help of others, so;  be sure to pander to their needs and preferences if you want to go anywhere.  They drive; you do not.  If they stop offering to drive you are SOL!  If you thought you were a people pleaser before, that was only a trial run – you are now in it for survival.
  3. Abandonment is no longer a fear; it is reality.  Think of all the obligations and responsibilities you currently fulfill on a regular basis.  Imagine how important you are to so many people.  Should you get sick – long-term sick – you can count on being forgotten by most of them.  Actually, you may be shocked by the number of people who drop out of your life, for reasons you’ll never understand.  The good news is, you will be left with a handful of quality people who help heal the wounds.th-1
  4. No one will ever really understand.  I know this sounds like a throwback to adolescent angst, but it is true.  (See point 1.)  They may see your life as a continual vacation, but what they don’t appreciate is that even if you were at the beach: stairs, sand, and any uneven terrain are almost impossible to navigate when strength, coordination, or god forbid, mobility are lacking. th
  5. You will become an alien being, devoid of normal earthly attributes.  Okay, this may be exaggeration, but why else do people look away, or smile uncomfortably when they see you (children are not afraid to stare, I might mention)?  And why else will it automatically be assumed that you do not have any personal desires or ambitions?  It’s not hard to notice that tones becoming more condescending or ‘careful’ in your presence.  Even loved ones, overwhelmed by the new demands forced on them, will struggle to maintain former relationships.
  6. Every three months you will have to justify yourself to the insurance company, regardless of your condition. This includes reports from your medical team, as well as ongoing surveillance.  If the paranoia doesn’t get you, the depression of constantly having to face the hopelessness of your situation will.th-1
  7. You cannot decide which is more confining – the wheelchair or the loss of independence.