MS and PTSD: not all in your head

model-of-human-brain

Life with MS is an is an ever-changing intimate tale of loss and redemption and of love and forgiveness within your relationship with yourself. Not one day should be the same, and not one minute can go lost to idle words or feelings.

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What singing taught me about life with MS

Black & white image singlng

It is hard to explain the following depth of reality. One morning shortly after my diagnosis, I woke up and thought, “From now on, I will wake up sick every day, and I need to accept that I will never get better again – unless a cure is found.”

That level of new normals isn’t easy. Then again, finding something black to wear while standing in front of a wardrobe filled with black clothes only, isn’t either. The same goes for the many pairs of black shoes, black rings, and necklaces.

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You will survive!

To this day, 13 years post-diagnosis, I am still prone to having conscious/unconscious battles. I am past the “woe is me” period that tried to knock me sideways at first, but I still have pacing issues that lay bare any ineffectiveness I attribute to myself.

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Where is my left cheek?!

Fatigued girl hands on her face

Trigeminal neuralgia feels like a vicious affair, and it is still hard to know who came first, TN or MS. Being a lover of Shakespearean drama, they would tell you they arrived around the same time.

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The truth about Cinderella

Some days I  go through life like a half-baked version of Cinderella. There’s promise at 8 AM, but by 11 AM my fairytale book is closed until further notice. In the background, that all-important clock keeps ticking forward, but my body is in a rut: sleeping, eating, exercising, resting, more eating, more sleeping and back again. And […]

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Mental or physical, your choice

“Is life with MS that comfortable, then? God, no. Absolutely not. You just have to learn how to live with it. Somehow I found a way to tap goodness from those negative connotations because I listened to its actual narrative by refusing to make a mountain out of a molehill. So, even when facial pain is also called “the suicide disease”, even when MS fatigue can knock me senseless in less than five minutes, and even when I feel awful inside despite not looking sick, I am just cool with the whole lot because there simply is no other way.”

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How (not to) be sick!

That’s me. I forget how to be sick. The fact that physically I am crumbling under a lot of neuropathic pain, can’t frown my forehead into cute wrinkles, have no feeling on the top of my scalp, have constant bees in my ears of tinnitus, stabbing facial pain and intense fatigue, is something I refuse to show anyone carrying a medical degree. It’s a survival instinct of sorts.

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Are you Cinderella yet?

“Seeing the world with fresh eyes every morning is something other people do. I try to get my innate sense of curiosity and wonder going when I wake up, but my enthusiasm only reaches as far as, “Oh look, both my eyes are open!” I re-evaluated my night-time activities, so, as those dubious sleep and pretend-to-be-awake-games only lead to more excessive MS fatigue.”

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Silence! (or how to break me using sounds)

Pink headset hearing

“So yes, we all have a bit of that sh*t-life-syndrome every so often. Sadly, we cannot unlearn our illness or symptoms like we can unlearn unwanted behaviours. What a drastic symptom like this does teach us, though, is how we can best create a workaround that should lessen its impact on us.”

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I’m an ex and I’m lovin’ it!

“I used to be a lot of things. Busy. Book addict. Ireland lover. Passionate. College student… and perhaps a tad crazy also. But then friends started saying that I was “slowly turning into a blonde”. Physical discrimination on the basis of hair colour aside, I felt they had a point.
Concentration skills went from hero to zero. Walking from the couch to the fridge a massive undertaking. In tears in front of the staircase after work because I had to sleep for an hour before being able to scale its height.”

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The miseducation of…

“Ergo, the benefits of having MS is that I met my other, weaker self, and I learned how to be strong and wise before my own eyes, and at the speed of light. Even E.T. couldn’t follow me on his BMX bike. He tried, the little fella, but lost my phone number. Go figure.”

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2015: Year of the Pen

We’re a few days into the New Year already, and I’m looking forward to sitting down in Starbucks Ireland once again. Parker pen, a large latte and carrot cake to take me through the thoughts in my mind while a new notebook waits for thoughts that sound like words; with emotions that sound like sentences […]

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The social swing of life

“It’s easy for relationships to become frayed because people interpret your life from their own 2-D perspective on a laptop, smartphone or tablet, and not from shared, interpersonal communication or experiences. Perhaps active listening has become unintentional hearing. Feeling compassion every so often turns to judging.”

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A powerful letter to my MS

bouquet of pink flowers beside white ceramic mug

“I thought you were just another Monday morning case when you walked in,” my consultant said, followed by lots of apologies and the promise that I would be very well taken care of.”

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In the arms of Morpheus

Ah Dublin, where everything is fancy and fair, where the sun can wipe out the feel of cool grey stones of its houses and where things just get better by hearing the sound of a jig or reel. Not so this morning. Fancy and fair… only if you would let me stay under my duvet. […]

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Do mobile phones cause multiple sclerosis symptoms or other brain damage?

Twenty years ago, SMS messaging was used for the first time on 3 December 1992, when Neil Papworth, a 22-year-old test engineer for Sema Group in the UK used a personal computer to send the text message, a “Merry Christmas” wish, via the Vodafone network to the phone of Richard Jarvis. Colloquially called a text message in […]

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