Tag Archives: Trigeminal Neuralgia

Lifetime membership

Silver imageRuth Humleker, a profoundly political, strongly opinionated and utterly fearless woman once said, “I can change only myself, but sometimes that is enough.” With her words often on replay in my head, I think back to that day.

Yes… t-h-a-t day in April 2005.

Diagnosed. Officially a lifetime carrier and member of a band called multiple sclerosis. Question is, what will you do with that membership? Use it? Abuse it? Throw it out?

As it turned out, soon after t-h-a-t day, I knew I would be using this broken vehicle as a tool of some sorts, perhaps to help others. And yes, yes… you can stop whispering “anyone but yourself!” Continue reading

No end to trigeminal neuralgia

b61ee3bf0e7ee52d0332a9f29cdf1143Oh dear.

It was indeed that time again.

“When I’m good, I’m really good, but when I’m bad, I’m even better,” Mae West once said. Now I don’t know much about Mae West, but I see her as an all-out cowgirl, slinging guns left, right and centre. In that respect, Mae, girl power, and let us all be great when we’re good, and even worse when we’re bad!

While I’m sitting here, typing fine long sentences, I’m almost giddy of pain, and the left side of my face feels like it’s being pulled way west in the direction of the Atlantic Ocean. My left eye feel like closing up shop for a week or two, and my brain is slowly being stir-fried. Yes, that is what trigeminal neuralgia feels like.

It’s not always like this though, as trigeminal pain can translate in different ways. It can feel like the ice bucket challenge, an earthquake, and monsoons as well as just… Mae West’s “when I’m bad, I’m even better.”

Silly girl, of course (me, not Mae West). I’m an idiot. Here I am, telling people to take care of themselves, telling them to take some time off from their MS as it’ll be there long enough, but do I listen to myself? Continue reading

The social swing of life

social-mediaLife isn’t viewed through our own two eyes anymore. We now let a smartphone be the first witness of things happening around us. We learn about other people’s lives, not by talking to, or observing them from a sun-drenched patio with a cool drink in front of us. Instead, we check out our friends’ Facebook pages and read their blogs. Direct communication seems a thing of the past. Continue reading

Not my face!

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. Continue reading

A powerful letter to my MS

Multiple Sclerosis.

You’re here.

Not residing anywhere else but here, inside me. Nine years and counting. Probably a lot longer if you really want to play dirty.

Why did you choose me when there were so many other people you could have picked? You were probably out for vengeance for working too hard and resting too little. You probably thought it would be fun seeing me cry at the bottom of the staircase when I was so tired I couldn’t climb it anymore. Did you know, did you truly believe it was slapstick-funny? Continue reading

Dear Santa

Dear Santa,

I don’t want much this year. I don’t want my body to hurt anymore when I get hugged. To have no facial pains so I can smile again. No more neuropathic pain, no more trigeminal neuralgia, no more severe fatigue so I can return to work. I want to feel pretty for a day. I want to have enough energy and patience to see the magic of this holiday through my family’s eyes.

Love,
Billie Continue reading

Raining roses

Back in blogging-land after a much needed break from writing and staring into my own little world. There were doctors’ visits and hospital waiting rooms, a very slow stroll through Dublin Zoo as well as lots of sleep and trying to lose weight before the Christmas holidays arrive. Friends came and went, and books were tossed aside after reading half a page. On a more exciting note, I ended up on www.writing.ie, the home of Irish writing online, with something I wrote about writing. Feel free to check it out here!

I finally convinced myself to stop and take stock with the words “Being this overly, mentally busy doesn’t work for me anymore,” because deep down I knew I had arrived in Klutz Central. KC, the final destination and home of being unable gathering and storing new information while having the energy levels of a sloth on Valium, really is the hometown of my bedroom.

Continue reading

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 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. Continue reading

The road to diagnosis

It was a cold, dark February morning in 2005 and once again, my eye and facial pain was back. The antibiotics my old GP gave me the week before did not work at all, and he seemed clueless about what could be wrong with me. In the few weeks before trying out another round of antibiotics, I had seen a dentist, went to the Eye & Ear Clinic and I had seen a homeopath, yet nobody was able to give me a clear answer. The only person somewhat clear on what was wrong with me, said that I needed to have my immune and central nervous system checked out. Fast. She was an intuitive healer, and turned out to be 100% correct.

On my way to work that morning, just before driving past our local hospital, I decided I had to do something about the continuous pain that had been troubling me for the last four or five months. If my GP was not going to be proactive, at least I would, so I got off the bus and walked towards the hospital, wondering if I was either going stir crazy or if I was doing the right thing.

Continue reading

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