Tag: facial pain

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.

Between you and me, do you often feel like a medical enigma? Or like a thespian in a strange, perilous play, even?

Notice the face?

For obvious reasons, I haven’t shared this picture since it was taken at the end of 2006.

“So, why share it now,” I hear you ask. That is a very valid question. You see, my mind is stuck in a rut, the kind of rut that takes you to Dr Google who will tell you that you will be dead by the end of the week even if the only medical thing you do is sneeze once or twice a year.

Dr Mozilla is as inept as a neurologist, as he might inform me I will make the end of the year if I stay offline for at least four weeks. Considering that today is December 3rd, he does have a point, but not one I care to examine any further. Read More

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 that Cinderella shoe?

Taken by someone else altogether.

Very much like the 11 AM dip in your energy levels, mine resemble a psychologically broken record: I keep finding out I am 100% present, but physically I’m not all there. Read More

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.

image anxietyJust this morning I was described as an annoyingly independent and stubborn oddball.

I can live with that; I presume more people would agree.

What they do not know, however, is that for the better part of 13 months, I chose to hide a painful side of my emotional and mental frame of mind. In fact, I simply refused to give meaning to it.

MS-induced anxiety.

Hints were dropped here and there, but I never told anyone about the fear that gripped my throat every time excruciating, knifelike facial pain (trigeminal neuralgia) took hold.

When TN attacks, the area around my left eye and the inside of my left ear as well as the inside of my eye become target practice for lightning bolts looking for a different kind of light show. Or, the stabbing pain turns into rubbery, burning numbness.

Neither are favourable.

Every 5 seconds piercing pain would turn my lively chatter into silence, and fear would grow stronger as time went on because people began to notice my absence because I needed a quick withdrawal from the outside world.

Anxiety grew to the point where I would only go outdoors wearing earplugs and sunglasses, and when I had a few Kalms tablets under my skin. Also, as a psychological issue, the stigma surrounding mental health made it difficult for me to speak up. In addition, I was also clueless about the fact that MS and anxiety are linked, making it a mental health issue about a chronic, physical illness.

I was more than surprised, so, when I read that research showed that MS-related anxiety usually happens shortly after being diagnosed, while some doubt it does not result from the physical process of MS itself. Read More

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.

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

Being Real image

I could call this a ‘letter to society’s ignorance’.

I could just as well call it a ‘letter to my stupidity’.

While I will ponder about a suitable title for this piece a bit longer, the topic is so well-known and dreaded, it is part of the dark fabric of life.

Read More

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.”

Almog albalach_Clock Flares_YEJqQwSome days I feel like a half-baked Cinderella. There’s some promise at 8 am, but by 10 am my fairy tale book is closed until further notice. In the background, that all-important Cinderella clock keeps ticking forward. My body is in a rut: sleeping, eating, exercising, resting, eating, sleeping and back again.

And that Cinderella shoe?

Taken by someone else altogether.

In other words, and very much like a psychologically broken record, I keep finding out that I am 100% present, but physically I am a goner. Read More

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 animals.

Otherwise, hardly left the house.

Sniff.

Thank you, MS. Living with a chronic illness is not all it’s cracked up to be. Chronic means chronic. I don’t get to choose the days, the hours, the moments.

Hence, a triad of medical events in the space of twelve days, now extended into a three-week period.

Flu. Impatient, it could not wait landing on my doorstep before that all important flu jab. Must remember that viruses follow idiotic timetables and adapt accordingly.

Seriously. Read More

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.

162974080234952360_x4ok1y8s_fSomeone once said “Babe, you may have MS, but you’re still sexy. Never forget that.”

Shortly after my diagnosis, my then-boyfriend uttered those very words. He must have seen me look at myself in a critical manner one too many times since returning home from a two-week stint in hospital, wondering if ‘MS’ really was written on my face.

Even though I don’t usually give in to superficial words like this, and don’t necessarily follow fashion to a T, hearing his words did wonders for my mind. The relationship didn’t stand the test of time, but sometimes I still say those lines to myself. Nine years ago, his words became a quick-fix mantra to pick myself up when I needed a boost. Read More

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 Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

 

Trigeminal Neuralgia Awareness Day

2013 Trigeminal Neuralgia Day image

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 internet pages:

http://www.tnawarenessday.com/ :

“The presumed cause of TN is a blood vessel pressing on the trigeminal nerve as it exits the brainstem. This compression can wear away the protective coating around the nerve (the myelin sheath). TN symptoms can also occur in people with Multiple Sclerosis (MS), a disease caused by the deterioration of myelin throughout the body, or may be caused by damage to the myelin sheath by compression from a tumour. Read More

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