I need to know
Do other MSers feel it too?
A sudden rawness
Burning
Tingling
In the tongue
Lips
Palms of hands
Soles of feet
Eyelids
MS?
Is it the myelin being destroyed
By my own cells?
Most uncomfortable
Anxiety-inducing
Go away now.
Tag: poem
Voodoo Doll: MS Awareness
Huge stakes pierce my heels
Burning red hot fire
Millions of minuscule knives
Flay the insides of my feet
A giant vegetable peeler slices off
The bottoms
*
I’m sorry to those I squashed
Those I looked down upon
From any temporary high ground
I believed I held
I am your voodoo doll
And you will have your revenge
Over and over
*
The burning piercing spreads
To hands, up legs, then forearms
Who needs to work on abs
When they stay contracted constantly
Holding in the moans
And the nausea from the pain?
*
I’m sorry to those I squashed
Those I looked down upon
From any temporary high ground
I believed I held
I am your voodoo doll
And you will have your revenge
Over and over
I don’t really believe that my chronic illness is a matter of revenge, but it’s an easy trap to fall into when I’m trying to pretend all is well but the pain is overwhelming. I think of myself as a kind person but I know in my past immature, insecure life I wasn’t always the best person I could be. However, we can only go forward and try to do better.
Kindness is the answer.
❤️ Amanda
Not all hugs are loving: MS awareness
It starts with a stitch
A few deep breaths
Then you’re knitting my ribs together
With barbed wool
The front
Then the back
Swirling into my abs
Then my lower back
A corset of pain
The cat the cow
The cat the cow
Stretching every way for relief
Breathe
Distract
It’s just a physical thing
I hug myself hard
To try to get you to let go
Nothing helps
Just breathe
I’m writing this as I’m experiencing a common MS symptom, known as the ‘MS hug”. I’ve always been a hugger but this is not the kind of hug anybody wants to experience. When people refer to multiple sclerosis as a MonSter, it’s for good reason. It sneaks up and attacks when you’re at your weakest.
I’ve been fighting the cold from hell, downgraded from the flu thanks to the infrared sauna. I’ve also been living through a bathroom renovation which has been more stressful than I anticipated. Yeah, I’m a dumb ass. No actually, it would have been less stressful if I had managed the job myself. Okay, yes I’m a control freak and a perfectionist. But if you want something done right, you might as well do it yourself.
So – stress. The worst enemy of anybody with a chronic illness. Hence, the MS hug and an increase of all the other symptoms that make me feel like Beetlejuice in that electrified way, minus the energy.
Good times.
Just breathe.
❤️ Amanda
A new career – finally believing
The questions never stop
Can I teach again?
Should I try it?
Am I just giving up?
The best days are the worst
The doubts eat me alive
Two years I’ve pretended
Waiting to get busted
Who gets to call themselves a writer?
Not me.
And yet, the shift has happened
The genes have shifted
What once needed to teach
Is striving to teach through words
Now
I believe
I have a story to tell
Worth telling
Worth.
West Coast: Unplugged Joy
Paradise.
It’s not the tropics.
I’m bundled up in a blanket with my jacket on,
absorbing vitamin D through my face and hands.
Not a margarita but a BC cider in my hand
No internet
No wifi
Just the wide ocean
The waves
Relentless in their battering of the rocky shore
Their energy
And constant loyal presence
Build inside me
Until the joy wants to burst
The tiny fireworks of the sun
Skittering across the ever-changing surface of the ocean
Blue jays in the pine trees
Flitting about, a never-ending hunt
All the lives under the surface
Their mysterious ways of surviving
Nature is thriving, not just surviving
Despite our best efforts
And it doesn’t, to our knowledge, have the capacity to experience joy
That bubbly lightness that expands your rib cage
That makes you repeat, over and over – wow!
There is no word strong enough,
That adequately describes that feeling
That appreciation for being alive,
For our many blessings,
Despite, or because of, our challenges
Those moments can be fleeting and far between
But what magic to experience them at all
It’s never enough,
No matter how much we try to appreciate each amazing moment
In this miraculous life
But it’s all we can do
And aren’t we lucky?
For the right price, I might reveal our secret escape. 😏
Seriously though, the chance to go away for three nights with no distractions and such an inspiring view is why we return as often as we can. We originally came on our honeymoon, but at that point we could only afford one night and spent the rest of our honeymoon in a cabin beside a clearcut. 😳
We are so grateful for every minute we get to spend here. We were more reflective because we were celebrating my husband’s 50th birthday (SAY WHAAAAAT???) and we have a long history to celebrate. We appreciate every single moment.
And yet the time still flies…
❤️ Amanda
Walk a Myelin* My Shoes 