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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The five-second MS rant

Girl sad on a rock

When physical restraints curb your potential, you realise that you want so more from your life. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential.

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Trigeminal Neuralgia Awareness Symposium, Dublin

October has finally arrived, which means that the 4th International Trigeminal Neuralgia Awareness Day is almost upon us. On October 7th the Light Up Teal campaign will see buildings across the world light up in a teal hue, with many buildings in Ireland joining the awareness campaign. So far, confirmation of 34 structures has been received, including […]

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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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TN triggers, symptoms & diagnosis

“Other disorders that cause facial pain should be ruled out before trigeminal neuralgia is diagnosed. Some disorders that cause facial pain include postherpetic neuralgia (nerve pain following an outbreak of shingles), cluster headaches, and temporomandibular joint disorder (TMJ, which causes pain and dysfunction in the jaw joint and muscles that control jaw movement). Most people with TN eventually will undergo a magnetic resonance imaging (MRI) scan to rule out a tumour or multiple sclerosis as the cause of their pain.”

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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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Detailed Trigeminal Neuralgia info

Types ° Typical TN ° Atypical TN ° Pre-TN ° Multiple-sclerosis-related TN ° Secondary TN ° Post-traumatic TN (trigeminal neuropathy) ° Failed TN

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Medical terminology?

“Because fatigue does not show a relationship with how many plaques your MRI shows, it is often hard to gauge, even though it does predict later brain atrophy in the posterior parietal cortical lobes. Also, MS fatigue comes in two different varieties, the primary and secondary type of fatigue.

During functional MRI scans for physical and cognitive tasks, it was clear that inefficient reorganization of a damaged central nervous system took place. MS fatigue is also a medical fact, so, and is associated with other neurological symptoms.”

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Eyes of sorrow

“I am utterly afraid of losing my eyesight completely. The pleasure I assign to them is felt every minute of every day. Reading a book, watching the sun set behind the mountains, seeing a flower open during the day, catching those few rays of sunshine in grey clouds… I am often in awe of the images my eyes capture and send to my brain. These images tease and taunt, are overjoyed or full of sorrow, want more or have enough.”

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