• Are you getting enough?

    “So yes, we all have a bit of that sh*t-life-syndrome every so often. Sadly, we cannot unlearn our illness or symptoms like we can unlearn unwanted behaviours. What a drastic symptom like this does teach us, though, is how we can best create a workaround that should lessen its impact on us.” Continue reading

  • Use it or lose it!

    “I much prefer a writer’s slow process from that one, flickering half a sentence in my head to it eventually making it into my handbag’s notebook or onto the internet. After all, writing in Ireland is a national illness, or a survival instinct of sorts. A lot of ideas come to me by my own form of public crowdsourcing; listening to people and picking up a few words here or there, thinking those words could eventually become a new piece.” Continue reading

  • Fake it ’til you make it!

    “Your conscious mind gives your unconscious the task to change your outlook on life, and it is slowly being bent into thinking you’re a champion within your own league.
    The beauty is this: the brain in fact doesn’t really know the difference between your mind’s visualisation and reality. And therein lies the power, not the slightly negative connotation of wanting-to-be/do-something, but the positivity of having or being it already. If need be, fake it ’til you make it!” Continue reading

  • That thing people call ‘summer’

    “It’s just another one of those very paradoxical facts of life: as a person with MS, you lack vitamin D. The only way to get good vitamin D into your body is to spend time in the sun. If heat sensitivity is part of your long list of MS symptoms, though, you can’t sit outdoors in the sun because your other MS symptoms get worse. Result? You choose to stay out of the sun, and therefore continue to lack vitamin D.” Continue reading

  • Hope cures old wounds

    “The illness is mine, but the tragedy theirs,” when asked how my family feels about my condition. When I entered the MS academy, I read the small print and knew it wouldn’t be a 365-day holiday. However, I tolerate MS. There’s no resentment or blame, no more heartache, guilt or doubt. I find solace in seeing science produce more and better research results and medication. Clinical trials are moving forward at a pace that will eventually lead to an easier life with an illness that is as fickle as MS.”
    Continue reading

  • I’m an ex and I’m lovin’ it!

    “I 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.” Continue reading

What a difference a needle makes

Copaxone imageNeedle anxiety.

Why would someone have needle anxiety when what you’re about to self-inject every day in fact slows down the progression of your illness?

Although my emotions regarding needles is not belonephobia (severe fear of needles), I have gone through moments where I simply could not press a needle in my skin. Using an Autoinject only made it worse. Pain doesn’t scare me (anymore). In fact, I’m going through a pretty rough time right now because of trigeminal pain. Knowing however, what the prerequisite was for having to inject myself on a daily basis, has, on occasion kept me from self-medicating. Continue reading

Positive MS News: August 2015

Bibiana Bielekova, MD, is the new director of UC's Waddell Center for Multiple Sclerosis and and associate professor of neurology. Reference Jan 06 "Findings".

Vitamin D research was once again a recurring news story this month, with more studies linking lack of vitamin D to MS.

Also widely reported was the news Novartis bought GlaxoSmithKline’s remaining rights to Ofatumumab, an investigational multiple sclerosis medicine, for up to $1 billion.

Highlight!

  1. Gene study finds link between multiple sclerosis and low vitamin D
  2. Gene study backs up link between vitamin D and multiple sclerosis risk
  3. Low levels of vitamin D may cause multiple sclerosis
  4. Vitamin D deficiency direct cause of multiple sclerosis (MS): Study

Continue reading

#bloggies2015 – Longlisted! Again!

CKC3m6sWUAEnJyt.png largeAnd 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.

___________________________________________________________________________________________________

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

screenshot-devineireland wordpress com 2015-08-26 17-38-15

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

Mental Health Organisations – Ireland

difference-between-extroverts-and-introverts
Aware
Aware provides support & information for people who experience depression, anxiety or mood disorder and their concerned loved ones.

72 Lower Leeson Street, Dublin 2
Tel: (01) 661 7211
AWARE Helpline: 1890-303302
Support Services
Email: info@aware.ie
Continue reading

10 ‘Little rebel, me’ mistakes I made since my MS diagnosis

Image by Willeke

Are you a list person? I am, that’s a given.

After wasting time on websites like List Challenges, I thought, ‘Well, how about the ten worst things I’ve done since being diagnosed, with a follow-up on the best things I’ve done since that day in 2005?’ Quotes are added to underline my thinking, ideas or just as some way to kick-start goodness in my life.

Once the 10 best things have found their way onto paper, I will link them to each other here if you want to read lists for a while!

Continue reading

MS, 50 shady ways of being sick

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I miss the sound of rain on my bedroom windows. Not one to feel depressed by bad weather, I physically start to thrive once more autumn-inspired weather sets in after those long, miserable months when temperatures were above 17°C.

My Spotify account on my smartphone is bloated with new soft jazz and Norah Jones tunes to accompany me on walks, and I cannot wait for those days to arrive. I can almost feel a tinge of cool air already. Sadly for those sun worshipers looking to add more cancerous rays of sunshine in Ireland, summer has been rather so-so. Continue reading

Are you getting enough?

No… no… put that wild thought out of your mind. You, my dear, are thinking of something else altogether. There are no sexy half-clad people involved. No Massive Attack or something more contemporary playing in the background. No soft light that shows your funny left side in a better light.

In fact, what I would like you to focus on, is the place of my dreams.

A library. A museum. A near-empty supermarket.

Dublin Zoo at 9.30am. The Irish countryside. An empty park.

All this, and then just a little bit more. Continue reading

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