Where is my left cheek?!

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. Continue reading “Where is my left cheek?!”

MS, Inc.

Completely out of the blue, someone recently asked, “Willeke-Maya, what is the spiritual currency of your MS?”

My reply arrived just as swiftly: “Spiritual what?! Is this philosophy 1-on-1 at the ungodly hour of 2AM?”

I left the question unanswered, but I have been thinking what a proper reply would sound like.

September came and went like it does each year. Counting down the days to cooler weather, family visits and our national MS conference. It doesn’t sound like much, but once airplanes and three-hour train rides get involved, it ends like this: knackered and wrecked, and under the duvet for days. Continue reading “MS, Inc.”

Understanding clinical trials

A clinical trial is a research study in which volunteers receive investigational treatments under the supervision of a physician and other research professionals. These treatments are developed by pharmaceutical and biotechnology companies who select qualified physicians, also known as investigators, to conduct clinical trials to determine the benefits of investigational drugs.

Clinical trials are usually conducted in three phases (I, II, III). Only a small number of people participate in phase I trials while the later phases involve a larger number of volunteers.

Clinical trials explained

To get involved in MS research in the US, please click here.


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. 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.

Central Nervous System (videos)

United

What do you think about this Tuesday thought, “Life has too many twists and turns?”

When MS is your sidekick, you certainly understand the concept of the ‘before-MS’ and ‘since-MS’ time in your life. In that brief moment between both, life as you once knew it had all but disappeared.

Many wondered how to bridge that gap.

Some failed.

More prevailed. Continue reading “United”

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. Continue reading “The truth about Cinderella”

Do I have stupid written on my forehead?

Can you recall what life was like before this craziness started?

Nope?

Neither can I.

There is a bit of mental derailing going on right now. Fatigue is back with a vengeance. I am so excellent in not sleeping well, that when I do, it’s a reason to organise a party, or rather, a pyjama gala. Sponsored by MS. And it’s undoubtedly impacting my thinking.

No, seriously, having MS is not a simple task, job or status.

It’s always there, in the background.

Or in the limelight.

In the shower.

In bed. Continue reading “Do I have stupid written on my forehead?”

Something’s on the way!

When you’re standing in the shower and you get a fab idea to write about, but can’t remember what it was 3 minutes later…

Something’s in the works, and it’ll be posted here by the end of tomorrow!

In the meantime, why not catch up with these…

Old alarm


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner are 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.

The five-second MS rant

“Oh no, what does that mean?!”

“Give me a break, please. Stop being so self-aware of every little nook and cranny in your body. Stop assigning it symptoms that are self-diagnosed. Stop wanting to be sick.”

“You want to feel pain? How about I lend you some trigeminal neuralgia laced with extra brain fog and energy levels that reach -50 at least.”

Yes.

This is a five-second rant. Continue reading “The five-second MS rant”

Magnetic voices

How many times have you been caught in the middle of an internal shouting match between your mind and an increasingly irritating body?

Whether it’s vision loss, disturbing fatigue or being unable to use your arms or legs properly, you know something’s amiss. That inner voice can be slightly more than torment, an evil nagging because you believe you are not living up to your potential anymore.

Fact is, we’re all one diagnosis away from a major illness. Health is not a something you can hold with both hands. You cannot put it on the kitchen table, in the boot of your car or give it a good old shake when you’re unwell.

Continue reading “Magnetic voices”

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