You retired at age what?

Old clock

So, yes, I retired at age 36,5 and it will never be what I envisioned when I moved to Ireland. I ‘ve crashed and burned, stumbled and found hope in tiny triumphs and friendships larger than life that will stand the test of time.

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MS News: January 2018

MRI brain scan

Your monthly MS news is back after spending a few months in the cooler. It will continue as before, with highlights, news on research and clinical trials as well as lifestyle, diet and mental and emotional health. If you found an article you want to add to this post, please let me know. Highlight! 5 […]

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MS News: April 2017

Research worker

The latest MS news about clinical trials, research, treatments, mental & emotional health, diet and lifestyle, including highlights from Barts MS Blog

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MS News: March 2017

Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017 Society Releases Statement on American Health Care Act National MS Society Urges Lawmakers to Oppose American Health Care Act Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part […]

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0% responsibility – 100% accountability

Today, I joke about not being perfect or about my mind behaving like a repetitive software update that refuses to stick after a few busy days. I may add that my bones rattle and that I have a Club Med-type relationship with three different hospitals, my primary care physician and my pharmacy. Or, I forget my name, fall asleep at fancy receptions, need an hour to cut three peppers and two onions and sometimes need to nag to myself to get things done.

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Single and chronically ill?

Couple holding hands

You can channel your inner delightfully, dazzling diva while wearing pyjamas, dog-shaped winter socks, leg warmers and your turban hair towel.

You can drag your duvet to the living room, watch Romeo + Juliet and cry for an hour afterward because Leo died when he shouldn’t have (Damn you William Shakespeare!)

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200 days

“To many, life with MS can seem like a book where letters have been replaced by numbers or where the cover can be too hard or too soft for its content. Because of this, I don’t want them to see what MS can turn into. I refuse to show them that there is no cure, I refuse to give them a reason to give up on me. In my view, it is very much a case of the illness being mine, but the tragedy theirs if I let them.”

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Being real!

Despite chronic pain and fatigue issues, I am making the best of my life, and I am doing everything possible to be the best version of myself as I can be. All I ask of you is some understanding of what I am going through, and know that every bad day is only making me stronger. Some days, though, I want you to hold my hand or hug me and tell me that everything will be OK.

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Conversations with myself

Nevertheless, positivity, when faced with chronic illness, is not a cure. It never will be. That doesn’t mean I can’t slander myself, right? Hitting the nerve, as it were. If my central nervous system is allowed to hit me, I am as authorised to hit back. Three times over.

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I want…

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorized 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 […]

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Ignorance

Oh, people will stalk you on Facebook on their smartphone, but do not ask them to find unprejudiced, trustworthy websites to learn something about your condition on that very smartphone. Quite often, they “will do so when they have time,” despite having their phone in their hands 50 times a day.

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But you don’t look sick!

We have all been there, at the receiving end of ignorance and unwillingness to understand what life with an invisible illness is like. © Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2016. Unauthorized use and duplication of this material without express and written permission from this blog’s author and owner are strictly prohibited.

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Let’s be frank

“Too many times we like to blame others for our own problems. Situations and people create our experiences, but these situations and people don’t create you. Understanding our past helps us to distinguish why we hold on and repeat self-destructive behaviours.
When we feel anger, resentment and other non-positive emotions, the only one we annoy is ourselves. So, choose taking ownership over blaming others, happiness over negativity, a new way of life over just remaining in a rut.”

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Responsibility hurts

“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 reminds you that being chronically ill sucks. It’s energy depleted in all the wrong places. There is no uptake to being ill. There is no room for manoeuvring when you’re faced with an illness that will -quite literally- be there until you draw your last breath.”

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Older, and dafter too!

Another year older today, and another year dafter too. Kookier. Most definitely away with the faeries. Never one to take myself too seriously unless needed, I am taking my new number in my stride. Having family and friends I love and who in return, seem to like me enough to give me a place in […]

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Multiple Sclerosis: The First F____ed Fortnight

Originally posted on Republic of Emma:
The early days are the most ‘challenging’ as in it is like a dirty dangerous whirlwind where emotions, words and all sense of self goes whizzing around. The day I walked into Mullingar Accident and Emergency room, I was wearing my jeans and a t-shirt that had seen better…

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Blurred notes to self

“Being strong doesn’t however equate to always being chirpy and seeing and hearing continuous pastel birds fly around my head. Everyone’s allowed to get cross for whichever reason. If or when the reason is valid enough, we contain the situation, talk it through and move forward.”

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The miseducation of…

“Ergo, the benefits of having MS is that I met my other, weaker self, and I learned how to be strong and wise before my own eyes, and at the speed of light. Even E.T. couldn’t follow me on his BMX bike. He tried, the little fella, but lost my phone number. Go figure.”

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10 Lessons I’ve Learned in 2014

“Don’t change because others tell you to, just be that limited edition that you know you truly are. Don’t be afraid to break the mould.”

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