ME/CFS patients are often under a great deal of pressure to “stay positive” and told to “visualize yourself healthy and strong again, and you will be.”
This type of “magical thinking” puts an unfair burden on a person who is already suffering terribly.
If they do not improve, then they may be blamed by others for “not trying hard enough” or “not wanting to get better.”
The unfortunate reality is that this very real, physical, disease process very rarely goes into remission.
It is usually an agonizingly slow downward spiral into what we call “the living death.” There are good days & bad days, good months & bad months, and sometimes, even the odd good year – relatively speaking (a healthy person would call it utterly horrible).
ME/CFS is complicated, and similar to a cascading system failure in a computer – it starts one place, but spreads to involve almost all the body’s systems.
It cannot be “wished away,” no matter how hard you try.
A few weeks ago, at the doctor’s office, the nurse, who was new, decided to go through the whole CFS checklist. It’s quite long. One of the questions:
“How are you doing on your goals?”
I was slightly dumbfounded. They never ask these things.
“My goal,” I told her, looking at Rhiannon, “is to stay alive until she is 18, so I guess I’m doing okay.”
The nurse looked at me with shock. Later, when she had me alone, she lectured me, about how I had to be more positive, and I needed to spend time imagining myself as vibrantly healthy, and then I would be.
However, I explained:
I have continued to go downhill, so obviously it’s just not that easy.
The nurse got very quiet.
It’s not for a lack of “faith” or “belief.”
I’ve had several experiences with animals (a wolf cub and a beloved horse) that were terribly ill, and should have died. I opened myself to the Divine, and felt it move through me, into them.
They made recoveries that simply could not be explained. My horse, Cherokee, was even written up in a vet journal, so stunning was her recovery.
I have seen true miracles, and I know they can and do happen.
So while I continue to hope and pray for one, I know that miracles are few and far between, and I have to face reality.
Reality is, my body is in a precarious place, and I need to treat it as such, with extra tender loving care and caution.
One of the most important things a ME/CFS patient can do is to realize the reality of their limitations – exactly how much energy they can expend, which may be next to none.
This is called staying within our “energy envelope.”
In the beginning, almost all of us push ourselves to do more than we should. We try to keep up our former lives, not realizing that things have changed.
Work is usually essential, so we work (often with the assistance of stimulants), then crash – we sleep, and feel like we’ve been run over by a semi, who then paused, and backed up over us for good measure.
On the outside, we may look “fine.”
But I assure you, we feel anything but “fine.”
We are forced to pare things down.
We start to miss social events and family gatherings.
Because our energy level, and the intensity of our headaches and other symptoms, varies day to day, and even moment to moment, we become unpredictable guests.
Soon, we stop being invited, or expected to show up.
This is the beginning of the isolation many of us will face.
Eventually, most will wind up housebound, and often, bedridden.
The life expectancy of a person with ME/CFS is 57 years.
Many ME/CFS patients wind up alone, with little or no in-person support, having been abandoned by family & friends, who either cannot or do not want to understand the reality of this illness.
Perhaps they think we should “try harder.”
I don’t know how we could possibly try any harder.
Virtually all the ME/CFS patients I have “met” – dozens of them, online – have tried everything, and I do mean everything, in a desperate attempt to get better:
Some have taken out 2nd or 3rd mortgages on their houses, and many, like me, have asked relatives to help cover the costs of meds, experimental treatments, supplements, and medical care.
Sometimes, things help a little.
Sometimes, they make things worse, even much worse.
We virtually all stay on top of every tidbit of medically-related news, every droplet out of the research world that shows promise.
We desperately want to be well again, or, at the least, to stop the downward slide.
We all want to stay positive, especially those of us – and there are many – who are the mothers of children with ME/CFS.
There is precious little research.
Precious little money being thrown at this illness.
There are no “silver bullets” in sight.
Even if one were to come soon, those who have been sick for decades, and have so many systems involved, so much damage done, would be very unlikely to recover fully.
That is reality.
Accepting the reality of our illness is essential to managing it, and to finding inner peace.
In November, I wrote this about finally finding acceptance:
“Acceptance doesn’t mean giving up. It doesn’t mean you stop looking for ways to return to health.
It means you stop fighting, stop struggling, and get on with the business of living your life, even if you have limitations you didn’t expect or want.”
It’s rather like a person who’s fallen into rapids: you can fight & struggle & probably drown, or you can give in to the flow of the river & let it carry you where it will.
Accepting what is, even ME/CFS, helps us to have richer, fuller, lives.
Because I came to acceptance, I relish every moment of life:
The explosion of sweetness from every ripe, red, juicy raspberry I pop in my mouth, a gift from the Woods.
The incredible way the sky changes color every sunset from second to second, showing me gradient hues in lavendar, indigo, crimson, fiery orange…
The fawn we saw nursing its mama just off our deck, and the twin fawns running full tilt through the Woods this week.
I’m especially treasuring every smile I see on Rhiannon’s face, and the long talks we’ve had of late, on far reaching topics.
Everything is more precious, and fills me with more joy, now that I am no longer engaged in a war. This is just what it is, and I’m making the best of it.
I’d really like to live long enough to see my grandchildren, and that is a longer-term goal.
In fact, I’d like to live to be as old & wrinkled as an apple that’s been stored for a year.
I’d like to be the crazy old lady who lives in the Woods. She can be seen out taking long walks, her dog at her side, ash-wood staff in hand. Her hair is long and white. Barefoot in all but the coldest weather, her clothes a wild mishmash, with beaded necklaces and bracelets, she looks every bit the crone, the wise woman.
She has a way with animals, and knows every plant, every wild herb and its use. She speaks quietly to the trees as she walks, and places a gentle, wrinkled, hand on them as she passes, especially her favorites: the great Mother Oak who guards her cabin, and the Ash trees who share her name.
She is the dream, or maybe, the ultimate goal, loved, nurtured, and carried inside.
What about you? Do you have any goals or dreams you’d like to share? Comments are very welcome, below the pictures!