Tag Archives: Writing

Paper dreams

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Have you ever wondered, “What exactly is my purpose on our little shining blue ball floating around in our vast universe?”

Have you?

Congratulations, so have I!

It took me the better part of my teenage years – if not very young adult life – to get to the stage where I thought, “Yes! Eureka! Yes, I found out what I am doing here!”

Translated, it sounded more like this, “I know where I am going to live!”

Part of the master plan that had been hiding in my unconscious mind had already been set in motion, albeit drifting rebelliously between my conscious and the harder to access unconscious level, before mischievously appearing again.

Continue reading

[Throwback Thursday] Balancing life and a chronic illness

Oh, you can bet I am willing, I am usually more than willing. When physical restraints curb your potential, you realise that you want so more from your own life, and out of your own reality. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential.

It simply reminds you that being chronically ill sucks.

It’s energy being depleted in all the wrong places. There is no uptake to being ill. There is no room for maneuvering when you’re faced with an illness that will -quite literally- be there until you draw your last breath. Do take it from someone who’s already stared death in the face because of it; it is so not all it’s cracked up to be, honey.

To read the whole post, please go to: Balancing life and a chronic illness

©WVE 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 WVE and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

UNCRPD in Ireland – begging for change

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The last few months, I’ve read and watched more political news about Donald Trump than I could stomach. As a result, shortcut rambling and biased vernacular on Twitter now linger in my own vocabulary when I try to write.

While it is true that you cannot bring about transformation by using blank expressions or hyped-up buzzwords that portray unfairness, ignorance and baseless conjecture, there is a limit to what is morally and personally allowed. It’s fair to say, so, that I have never been so amazed and shocked by any politician in such a short time frame. More annoyingly, because I love psychology so much, I keep going back because I want to know more about Trump’s state of mind.

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Then & now

While events on the political world stage the last few months weren’t exactly vivacious or dignified, a lot has happened in and outside my own colourful, little Irish bubble also. I didn’t have a foul-mouthed Donald Trump breaking down my every word, but I equally didn’t have an eloquent Obama and Air Force One to drag me away from crime-ridden, questionable places. “Life,” in a way was, just like Einstein once said, “like riding a bicycle. To keep your balance, you must keep moving.”

Even while moving, however, at times I felt the pedals slip from under my feet, resulting in losing balance mid-air. Ungracefully, so. Continue reading

Books? Great medicine!

10420388_896873597031395_6750446769718581885_nWhen I look back on life, books have always played a pivotal role while growing up, through the good days and the bad, and in sickness and in health. If it were not for the many hours spent with my nose tucked deep in books in the downstairs library in our apartment, my life would not be the same today. It would similarly not be the same if my mum had not let me ‘read’ our atlas so many times, its spine became battered and bruised, and all pages near the maps of Great Britain and Ireland were falling out as if Boudica herself had rampaged through them.

Years later and by now living in Ireland, books continued to be my backbone and often saved me from emotional distress before or after surgeries, diagnoses and retiring from work. Some were a hard rock to hold on to while trying to stand firm against unwanted medical test results that would change the course of my life. Some were a ‘do not disturb’ sign while others the perfect antidote to something called ‘uncertain days’. Continue reading

Raw

9273d650cde5389d43728b0d611c0a96Social media often finds me catching my breath because of its reach, its intent and its questioning behaviour towards the mindset of the people they follow.

After tweeting about the content of my blog, I received a rather ignorant private message from someone asking how raw my content, or I, can get and if I wanted to elaborate.

On my blog, ‘raw’ is A Powerful Letter to My MS; Death, A Fearful Thing?; Waiting and My Brother. These were pivotal words that had to be written from an emotional perspective as learning to accept a chronic illness sometimes comes with letting go of life as you once knew it.

Others say that Let’s Be Frank; Ignorance; and Hope Cures Old Wounds are realistic enough to prove that life with a chronic illness is not just about being ill, but about society judging someone’s illness also. Getting a raw deal, in other words. When somebody receives a neurodegenerative diagnosis, the lives of those living with the person who was diagnosed will change to a certain degree. Not only that, each person affected will have a theory on what that illness should be like, and how they should handle it.  Continue reading

World MS Day 2016

c42bdf6a253c4de6518ad04cbfc60affAs each day passes with life with MS, it’s worth noting that quite often, there is still a large information gap to be filled on a medical, emotional, societal and political level. Like many other disease groups, the MS community wants to enhance “Life with…” once a year in a bid to give more insight in what people without MS may otherwise take for granted.

In the past, I’ve written about World MS Day on my blog, as well as on the Irish MS Society’s blog and on Novartis’s MS blog. As a person living with the illness day in, day out, highlighting it has become a moral obligation. Continue reading

Balancing life and a chronic illness

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Imagine this… You are chronically ill, but every time you have a physical setback, your body can heal itself without input from your GP, neurologists, hospitals…

Our mind has the power to heal heartache and/or to show strength in times of need, yet our bodies lack that magnificent paradox. The answer lies in how we look at our emotions; are they your friend, or foe? And how do you view your physical body?

After some feeble attempts trying to write a few paragraphs the past few weeks, I was sent back to the drawing board after each occasion. Not good enough. Already done this. Needs more research. Too tired. Continue reading

PLEASE VOTE! MS Ireland company blog shortlisted!

MS & Me, the group blog of MS Ireland for which I also write, has been shortlisted

for the Blog Awards 2015 edition in the company Best Health and Wellbeing category!

We need YOUR vote though to become a finalist.

*** The PUBLIC VOTE is now open for the 2015 Blog Awards Ireland! ***

Voting will be open for TWO weeks from Monday, 7th September!

The PUBLIC VOTE will be worth 30% of the overall mark.

The other 70% will be decided by a panel of judges.

Please cast your vote below by clicking here,
or on the colourful Blog Awards image below!

Thank you!

Ava, Diana, Trevis, Joan, Declan, Aoife, Lucina, Helen, Niamh, Emma & Willeke

Please share…

Blog_Awards_Shortlist_iPiccy_Painting

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About Willeke

Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological services in Ireland. By highlighting difficult issues that come with a MS diagnosis, she hopes her words and tenacity can bring justice to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.

©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized 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.

#bloggies2015 – Longlisted! Again!

Image Awards Longlisted 2015And then there was that other happy thing that happened today: the longlist publication of the Blog Awards Ireland 2015 competition. I have YOU to thank for entering my blog, and for continuing to welcome new posts and ideas. Needless to say, I equally welcome the time you spend reading and commenting on my blog.

Because this is my 3rd time being longlisted (and because I am my own harshest critic), my next goal is finding my name on the shortlist. That’s when I feel most comfortable, a little bit of a challenge, you, my laptop, that urge and the ever-present need to champion patient rights and raise public awareness on what life with an invisible illness is like.

Each day, in fact, I wish I could write more. I can’t be oblivious though to the fact that the very reason I started writing, is a chronic, neurodegenerative illness. The urge to write is a very definite one, yet it is often tempered by painful eyes, obtrusive fatigue and intense facial pain.

But… onwards and upwards we go.

After all, the secret of learning to be sick?

Love your life more than your pain.

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Image thumbnail About MeAbout Willeke

Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological/MS services in Ireland. By highlighting difficult issues that come with such a diagnosis, she hopes her tenacity can bring some dignity to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized 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.

Time to go our separate ways

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We are having a divorce of sorts.

Because of the ever-growing volume of my blog, and WordPress slower as time goes on, I’ve finally decided it’s time to move blog posts about Ireland, books, writing etc to a new blog called Kick-Ass Ireland! After all, this is a blog about multiple sclerosis with facts, figures, information sheets and my journey with MS.

Ireland, books and writing does take up all my thoughts, but for now posts related to them are better housed elsewhere. The next few weeks will be busy, and I will sit down and put some serious thought in how to expand my blog once those weeks are over. Continue reading

Use it or lose it!

Life with MS?

“60% hospital visits to keep the national health department satisfied, 10% sweat, and 0% tears.”

When I’m told that 30% is missing, I agree.

“30% is memory loss, which rather proves a point.” Continue reading

#strongerthanms with MS Ireland

World MS Day image 2015

“So, how’s the book?”

I don’t lack ambition to keep on writing, but I have an over-abundance of low energy levels, so I must ask people to use their patience… patiently when dealing with me.

Like all cowards, the illness I write about lurks in the dark within my central nervous system, and it sometimes rises to the surface in unflattering ways. My body does a good job in concealing it for now, but every so often I worry about it rising to the surface and staying there… permanently. Continue reading

I’m an ex and I’m lovin’ it!

Image VoltaireI used to be a lot of things. Busy. Book addict. Ireland lover. Passionate. College student… and perhaps a tad crazy also.

But then friends started saying that I was “slowly turning into a blonde”. Physical discrimination on the basis of hair colour aside, I felt they had a point. Concentration skills went from hero to zero. Walking from the couch to the fridge a massive undertaking. In tears in front of the staircase after work because I had to sleep for an hour before being able to scale its height.

In short: I knew I was ill.

It turned out I was ill. Continue reading

10 Lessons I’ve Learned in 2014

New Year’s resolutions are about looking forward to 2015, but I want to stand still for a few minutes to look back at 2014. Many positive things happened on the writing front, but sadly, as Isaac Newton’s third law of motion goes, I ended up with a four-month relapse. Action and reaction played out in perfect unison, so.

After a very relaxed Irish Christmas and New Year’s holiday, 2015 is off to a great start. Determined not to let 2014 end in utter silence, the following 10 lessons can perhaps be a guide for this year also.

If people can’t handle you at your worst…
‘Normal’ life without a chronic, neurodegenerative illness can be hectic enough. However, if you have an illness that causes a progressive loss of neurological functions, life becomes truly demanding and gargantuan. So stand up for yourself, and quote Marilyn Monroe if need be, “If you can’t handle me at my worst, then you don’t deserve me at my best.”  I’ve come to live by that maxim, and it’s empowering once you know you deserve better people in your life. Continue reading

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