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.

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.

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

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.
