Happy 2018!

Happy New Year!

Happy 2018 image

“We spend January 1 walking through our lives, room by room, drawing up a list of work to be done, cracks to be patched.

Maybe this year, to balance the list, we ought to walk through the rooms of our lives… not looking for flaws, but for potential.”
(Ellen Goodman)


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2018. 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.

The paradox of our time

(This essay appeared under the title “The Paradox of Our Age” in Words Aptly Spoken, Dr. Moorehead, 1995)

The paradox of our times

Is that we have taller buildings, but shorter tempers.

Wider freeways, but narrower viewpoints.

We spend more, but we have less.

We buy more but enjoy it less.

We have bigger houses, but smaller families.

More conveniences, but less time.

We have more degrees, but less sense. Read More

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

MS, Inc.

Perhaps losing my only sibling over a decade ago recreated the perspective on life I once held. It poured resilience into a mind that required to be strengthened for the many years ahead. Hope became the antidote to being tired of always being sick and tired.

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. Read More

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.

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. 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

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. Read More

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 please, stop wanting to be sick! If you – as a healthy subject – feel dizzy when standing up, feel stiff or just tired, try making common sense of what your body is telling you. You stood up too fast, you should exercise more, and you should perhaps sleep a tad more also. Your body told you it’s one big piece of machinery that regulates itself as we speak and is using common sense to get you back to your usual, fit and healthy self.

“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. Read More

Magnetic voices

Life with MS is about adaptation. What you can do, however, is listen to the voice of reason, no matter how hard it might seem. It might say that you will need time, rest, medicines, a decent medical team and a seriously good dose of positivity to go through life.

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.

Read More

15 Essential MS Websites (2017)

 

  1. Barts MS Blog
  2. Multiple Sclerosis on Neurology Times
  3. MS Trust
  4. Shift MS
  5. National Multiple Sclerosis Society (US)
  6. Multiple Sclerosis Association of America
  7. Multiple Sclerosis Research News
  8. Multiple Sclerosis News Today
  9. MedMerits: Multiple Sclerosis Center
  10. Healthline, Understanding Multiple Sclerosis
  11. Multiple Sclerosis Society (UK)
  12. The MS Society of Ireland
  13. MultipleSclerosis.net
  14. Medscape Multiple Sclerosis
  15. Very well: Multiple Sclerosis

© 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.

20 Best Personal Blogs about MS (2017)

Personal blogs are a great way to get to see what is hiding behind the mask of life with MS. While each person with MS is different, writers often connect with readers on a shared human level, away from hospitals, neurologists and other physicians.

These are some of the best personal blogs in 2017, written by real people with real multiple sclerosis issues.

  1. Positive Living with MS
  2. Life with Multiple Sclerosis
  3. Ugly Like Me
  4. MS Ireland Blog
  5. Living Like You
  6. Tripping Through Treacle
  7. Overcoming MS Blog
  8. Enjoying the Ride
  9. An Empowered Spirit
  10. Lady with MS
  11. Wheelchair Kamikaze
  12. My New Normals
  13. Carnival of MS Bloggers
  14. You Don’t Know Jack about MS
  15. Broken Clay
  16. BHHWithMS
  17. MS Connection
  18. Love My MS Life
  19. Daves ActiveMSers Blog
  20. Everyone Here is Jim Dandy

© 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.

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

Browse Categories

%d bloggers like this: