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.Read More
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.Read More
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 […]Read More
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.Read More
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.Read More
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 […]Read More
“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.”Read More
“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.”Read More
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.Read More
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.Read More
“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.”Read More
Types ° Typical TN ° Atypical TN ° Pre-TN ° Multiple-sclerosis-related TN ° Secondary TN ° Post-traumatic TN (trigeminal neuropathy) ° Failed TNRead More
This post features a long, infochart, which you can find when you click →Read More
“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.”Read More
“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.”Read More