Why I love advocacy (and you should too!)

No matter when you were diagnosed, there might be moments when you feel like screaming at the top of your lungs when symptoms take a little too long to disappear, or because people are just getting on your nerves.

Or, you hope that someone will hear your silence, listen for unspoken, forgotten words while others are deliberately left unsaid.

In my case, there are times where I pray that some will understand how deafening my silence needs to be right now.

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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. We all want the opportunity to stay active human beings. Not wanting to be is foreign to my character and it quite possibly will be for as long as I live. Still studying is just one part of that action plan.

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Where is my left cheek?!

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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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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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.

If people would at least show some respect, many people with chronic or terminal illnesses would live easier lives. After all, knowledge is power.

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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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I don’t miss myself

So… Rugby world cup. At last. England in a fashion faux-pas. Coin toss aside, they resembled players of Wales, China, Japan or Kyrgyzstan (Fijian, red is Fijian). Mum’s nine day visit to Ireland now over. Visited Dublin Zoo once again. New camera making me rather shutter-slow, hence prevalent photographic bonding with rear ends of several […]

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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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Not my face!

In a world of selfies and size zero clothing, a negative body image can weigh heavily on healthy people, never mind disabled people. Being ill in itself often makes you feel less desirable. In the world of MS, where wheelchairs spread doom and gloom to those that get hit with that tag, body-image requires a whole new level of acceptance.
I firmly believe beauty is limited to time and space. In addition, it only runs skin deep and definitely doesn’t reveal true worth.

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International Trigeminal Neuralgia Awareness Day

International Trigeminal Neuralgia Awareness Day on October 7th 2013: Today is the first Trigeminal Neuralgia Awareness Day, please watch this video and sign the petition to get the World Health Organisation to add this to their ‘Health Topics’ lists to get more research and funding into this debilitating symptom: http://www.ipetitions.com/petition/trigeminal-neuralgia-awareness-day/ http://www.tnnme.com/ ©Willeke Van Eeckhoutte and […]

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Trigeminal Neuralgia Awareness Day

Tomorrow is the first Trigeminal Neuralgia Awareness Day, focused on bringing awareness about facial pain disorders. This year I have gone through severe TN attacks myself and I therefore want to spread awareness about Trigeminal Neuralgia, also called “the suicide disease” because of the severity of pain experienced. Please check out this video and these […]

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