Tag Archives: Trigeminal Neuralgia

The miseducation of…

2a368fe3a25dc33b8327e836159894ecIt’s all been a bit crazy since that first day of the New Year came peeking from behind that cold, frosty door. It’s now an icy, jaded Saturday morning in the north-west of Dublin, and the RBS Six Nations rugby tournament just started.

Utter bliss so. Red cheeks from absolute delight.

On Monday, I have a new appointment with my neurologist, and with two separate eye doctors in hospital a few days later. Somebody should let me hire a very fancy suite in the hospital, as there’s no point going home and back again twice afterwards, especially since my energy supply is limited.

Am I dreading my neurological check-up? In a way, yes. After 8ish years on my DMD (Disease Modifying Drugs) Copaxone, it just doesn’t work anymore. The four-month relapse last year was proof enough. The idea of relapsing again is a scary one indeed, so I aim to find the right words and ask for an upgrade of my therapy. Continue reading

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 or paragraphs. Life’s the story; my family, friends & MS gang, my inspiration.

This year will mark my fourth year of blogging, although mentally blog ‘posts’ are now called ‘articles’ and blogging turned into ‘writing’. No, it’s not a matter of being arrogant, being a social climber, or being above ‘mere’ blogging. Writing simply became a lot more than blogging.

Writing became a lifestyle. Continue reading

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

Death: a fearful thing

2008

I was afraid.

Each time I experienced gastrointestinal changes, I tried not to worry. But I did.

Even when I tried to get this worry down on paper, I failed to finish two consecutive sentences. One sentence if I allowed my interior monologue to perform a James Joyce oration without punctuation.

That was not me however. I usually didn’t let chaos overwhelm me. My path of life had on regular intervals been paved with chaos, so I was well-used to it. 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

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