The duality of MS

Woman beach

In ever memory of physical betrayal and every second of dislike of my illness, I am still intrigued by its complexities and continue to care for all its nuts and bolts.

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Noise sensitivity in MS: Turn off your voice!

Vintage

If sound intolerance were a 2005 Marks & Spencer food porn ad, people would refer to it like this: “This is not just sensitivity, this is a hyperacusis noise sensitivity.”

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In search of my MS Zen

Despite having my inner dialogue running into philosophical mayhem, parameters on what I perceived to be acceptable have been reset, and my inner dialogue needs a fix as an intuitively sharp anguish took over my mindset last week.

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Sleep and MS… It’s what’s (not) happening!

Imagine standing all dolled up at the front door, excited to go to the film you’ve been dying to see. That doesn’t do it for you? Replace ‘the film’ by ‘finally buying the boots you’ve been waiting for’ or by ‘rushing out to buy a new power tool’ to finally set up new furniture.

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Starting over

Clock vintage

Sacrificing your life for a chronic illness never comes easily. You learn to compensate and decide how reliable your judgment is based on what you can put in physically, mentally and emotionally. Quite often, what lies within you is mentally infinitely stronger than anyone might realise – even yourself –  because, until that point in time, you have been at your worst already.

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I am not my brain

Brain MRI

“What’s wrong with my brain?” doesn’t automatically mean, “Is my mind, my soul therefore broken as well?”

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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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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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MS, Inc.

Perhaps losing my only sibling over a decade ago recreated the perspective on life I once held. It poured resilience into a mind that required to be strengthened for the many years ahead. Hope became the antidote to being tired of always being sick and tired.

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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

pexels-photo-48566

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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MS Anxiety

Research shows that MS-related anxiety usually happens shortly after being diagnosed, while some doubt it does not result from the physical process of MS itself.

Not so fast, buster!

I begged to differ.

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Paper dreams

Have you ever wondered, “What exactly is my purpose on our little shining blue ball floating around in our vast universe?” Have you? Congratulations, so have I! It took me the better part of my teenage years to get to the stage where I thought, “Yes! Eureka! Yes, I found out what I am doing […]

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MS News: March 2017

Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017 Society Releases Statement on American Health Care Act National MS Society Urges Lawmakers to Oppose American Health Care Act Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part […]

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UNCRPD in Ireland – begging for change

Over the years, many extraordinary, inspiring people with disabilities have shown how they have rocked the world in their unique way. What the likes of Trump might regard as incompetence, I have seen extremely able, courageous people who have raised the bar not only for themselves but for others as well. They are living proof that having a disability is not the end of the road. There is, in fact, a whole world ahead of you. It might be good to remember these strong words from Michelle Obama, “When they go low, we go high.”

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Then & now

“Following that, I hit writer’s block faster than you can say ‘ABC’. That writer’s block has reached the ‘XYZ’ stage, so I’m nearing a muse that sounds, tastes and smells like coffee.

Starbucks.

Where I am funnily always full of ideas.

Away from notebooks and pens, I scrapped another item from my bucket list in September.”

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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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Ignorance

Oh, people will stalk you on Facebook on their smartphone, but do not ask them to find unprejudiced, trustworthy websites to learn something about your condition on that very smartphone. Quite often, they “will do so when they have time,” despite having their phone in their hands 50 times a day.

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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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What a difference a needle makes

Needle anxiety. We all went through childhood being afraid of injections. But why would someone have needle anxiety when what you’re about to self-inject every day, in fact, slows down the progression of your chronic illness? Although my emotions regarding needles do not amount to belonephobia, I have gone through moments where I simply could […]

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That thing people call ‘summer’

“It’s just another one of those very paradoxical facts of life: as a person with MS, you lack vitamin D. The only way to get good vitamin D into your body is to spend time in the sun. If heat sensitivity is part of your long list of MS symptoms, though, you can’t sit outdoors in the sun because your other MS symptoms get worse. Result? You choose to stay out of the sun, and therefore continue to lack vitamin D.”

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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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Hope cures old wounds

“The illness is mine, but the tragedy theirs,” when asked how my family feels about my condition. When I entered the MS academy, I read the small print and knew it wouldn’t be a 365-day holiday. However, I tolerate MS. There’s no resentment or blame, no more heartache, guilt or doubt. I find solace in seeing science produce more and better research results and medication. Clinical trials are moving forward at a pace that will eventually lead to an easier life with an illness that is as fickle as MS.”

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MRI scans, hope or defeat

A war zone. It seemed like a war zone. Sound effects of an AK47 gun amid MRI vibrations and banging noises usually taking place on construction sites. Tinnitus adding an overlay I can miss like never before. Magnetic resonance imaging is a godsend to ill people. In regards to MS, it gives a clear view […]

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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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Lifetime membership

“Looking back at my physical self between the end of November 2009 and today, my MS took a fairly big step backwards twice. With hindsight being 20/20, retiring was the right thing to do. I cannot even begin to think where I’d be medically had I not retired, so if you want anything to work out in your life, then please let it be your early retirement.”

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Depression?

“There is indeed no shame in being depressed. It can happen to any of us, for any reason and at any time. Nobody is protected from those deep, dark clouds in your mind. Inspired by my friend’s words and strength, I hope to keep the circle of hope for better days going. When all is said and done, let’s be the heroes of our own darkest of days.”

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Oh, yes, the Blog Awards irony!

Oh the irony! That pure, untainted irony that just sits there grimacing at my lack of energy and overabundance of trigeminal neuralgia, today of all days! “What?” you ask. You who spends time with me, you know that I often live with sarcasm – I’m still DSF, a Delightfully Sarcastic Female after all. Not only […]

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