MS

Raw

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.

chronic illness, life, Poetry

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

chronic illness, MS

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

life, writing

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.

gratitude, life, Poetry

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?

Check out my gorgeous Mohawk and bright blue tail feathers.

Look at me dance. How can you resist?

Feed me! No. We didn’t, but he was sure cute!

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