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.
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
FEAR
First of all, I have to acknowledge the overwhelming positive support I got for my last post from my various ms ‘families’. For an introvert that overanalyses every social interaction (yeah, I think they call that social anxiety 🤔 ), it took me a long time to put myself out in cyber world and open myself to potential criticism. Not that I expect rave reviews, constructive feedback is always welcome. But we all know that feeling of ‘what if everybody hates it?’ Right? Everybody feels that, right? 😉
Anyway, thank you to everybody who clicked and read and commented! I am astounded at the support and encouragement, and so grateful to be a member of such amazing, caring groups.
This is a poem I wrote when I was amping myself up to share my writing. Fear is another of those emotions, like guilt, that many of us try to ignore or fight against. There is a tendency to distract ourselves from the ‘negative’ emotions in life but when we face them head on they provide the counterbalance to the positive emotions we all strive for. You can’t have one without the other.
While fear is a universal emotion, it develops a particularly strong flavour when one receives a diagnosis of multiple sclerosis. Being told you have an incurable neurodegenerative disease, that nobody knows what causes it and there is no way to predict what damage will be inflicted on your body, introduces a whole new level of trepidation. Add to that the daily adventure of never knowing what symptoms might crop up to stop you or slow you down, and the accumulation of disabilities that strip away the identity you have built up over years or decades, and the fear can be paralysing.
I’m coming up on the third anniversary (that so does not seem the right word) of my diagnosis. Three years since I left the classroom. Three years coming to terms with my new normal, trying to heal and to carve a new identity for myself. I realize now that fear was the main thing holding me back from moving on to a new chapter. It’s still there, making my palms sweat as I type this, imagining putting out another piece of myself. But I will face the fear, because if there is one thing I have learned over the past three years, stagnating is not an option and pushing through the fear is the only way to get to the light.
❤️
FEAR
Creeping
Lurking
Hiding behind the mask
The mask of fine
It paralyses without acknowledgement
So ingrained we don’t even realize
The control it has
How powerless we are
Unless we face it
Under the bed
In the closet
The dark
Untried adventures
Nebulous
Heart racing
Skin crawling
Sweat dripping
Light on
Distract
All is fine
Everything is fine
Fine but stagnant
If you let it overpower
Stuck in your small world
Beating against the bars
The bars you hold onto
Justifying
Numbing
Distracting
Wilting
Fight for the light
The dark will always be there
Give it a nod
Let yourself feel it
Then
Move on past
Move into the light
So much brighter
Reflecting the dark
Dark loses power in the light
The light is stronger for the dark
ALC – 17/05/18
Guilt
I don’t consider myself a poet but some things, emotions particularly, seem more accessible when I let the words flow freely and simply. I wrote this poem about guilt last year. Guilt is an emotion I strenuously fought against but I encountered it full-force when I stopped working. Happily, a year later I’m more at peace with where my life is so the ugly parasite guilt doesn’t get me down as often anymore.
Walk a Myelin My Shoes 