Humans Multiple Sclerosis

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When it comes down to awareness-raising and thought-provoking initiatives in the health charity sector, fresh ideas are often hard to find.

Not so for Joan, a dear friend of mine. After her original Selfie Book idea created by her regional MS branch for World MS Day in 2015, Joan wanted to expand this Facebook idea and create a book for newly diagnosed people. Her own diagnosis – raw, no counselling, no management plan or words of inspiration from others who already walked down the same path, was something she wished had gone differently. In short, Joan was looking for a sign of hope, and something “telling me how people can get on with living a good life and that it wasn’t the end.”

She introduced her Humans Multiple Sclerosis project to the Irish Minister of Health and received a small government grant to develop her original Selfie Book idea. Continue reading Humans Multiple Sclerosis

0% responsibility – 100% accountability

1ebc241f7cb451636a9ff3ccedcf4945Imagine this… Some time ago you were finally able to give answers to these two questions, “Who am I, and what is my purpose in life?” While admitting the questions were rather philosophical as well as personal, you are suddenly thrown back to square one, and you once again want to find out who and what.

Ouch.

Like most people, my answers came and went as every meaningful tide in life left a new imprint on my senses. Continue reading 0% responsibility – 100% accountability

MS News: July 2016

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Researchers at Queen’s University Belfast have begun a £2 million research programme to investigate reversing the damage caused by Multiple Sclerosis.

Highlight!

  1. Childhood MS: A guide for parents
  2. Queen’s University Belfast Awarded £2M in Bid to Reverse Myelin Damage in MS
  3. Exploring Multiple Sclerosis from the Inside

Continue reading MS News: July 2016

Multiple Sclerosis: The First F____ed Fortnight

A very beautifully written post by my friend Emma, who goes over her first few hours and days after her MS diagnosis.

“There’s no doubt, it has been raw, it has been ugly with cursing and swearing, lost relationships dodgy decisions. But I everyday I make peace with myself, I give thanks that I have another moment to live. Because there were times when I didn’t see any hope. I was soaked in blood, sweat and the tears of a thousand years.” (Republic of Emma)

Continue reading below…

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 days. Two weeks later, not only was that t-shirt gone, the Emma who walked into A&E had disappeared, stepped into a bizarre place of chronic illness and dis-ease.

Daring-Greatly2

Multiple sclerosis- multiple scars? I had brain damage? Those fifteen seconds, when those words went from the consultant’s mouth to my ears, a little part of me died… I picked up the pieces of my broken heart but I still think of old Emma sitting on the edge of the hospital bed and the new Emma, getting up and stumbling, in a post-traumatic shock way, into a new life, a new way of…

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MRI scans, hope or defeat

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A war zone. It sounded like a war zone. Sound effects of an AK47 gun amid MRI vibrations and banging noises usually taking place on construction sites. Tinnitus adding an overlay I can miss like never before.

Magnetic resonance imaging is a godsend to ill people. In regards to MS, it gives a clear view on what is physically going wrong inside the brain, spinal cord and optic nerves. Add some contrast fluid, and yours can lit up like a Christmas tree, just like mine did this morning. Or so I was told.

Sudden, loud sounds twitches my head involuntarily. The upstairs part of my body locked in a mask, I now realise how Leo felt when he played The Man in the Iron Mask. Continue reading MRI scans, hope or defeat

Making Sense of MS

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One of the many things people newly diagnosed with MS (PwMS) look for is information on what their illness will have in store for them.

From thinking back to when I was discovering what MS might be like, I remember an overwhelming feeling of “where on earth do I even begin?” when I finally went online. I was numb and in denial but knew I had to find out more if I wanted to create a realistic idea of it.

Approximately 5,000 people are newly diagnosed with MS each year in the UK, and for this reason, the MS Trust commissioned the “Making Sense of MS” resource to highlight the need for more information at the time of diagnosis. Continue reading Making Sense of MS

That daily fight

MS Love Life imageSometimes it seems that the hardest battles you will ever have to fight will be the battles with yourself. You strive to get through hours of hard grinding for upcoming exams, or you want to get fit after Christmas and New Year’s parties. We’ve all been there, and the older you get and the harder you seem to try, the more difficult it gets.

I’m no stranger to being my own worst enemy when it boils down to fighting health issues. As years go by, and the wiser I should become, I simply cannot turn it into a ‘Remember when I finally learned my lesson?’

After my MS diagnosis in 2005, I told my ex-employer and ex-colleagues countless times, ‘This time I know what to do and next time I will not work too hard, too long, too much etc.’ after being off sick again. Seven years later, I am still telling friends and family the same thing, even when I had to quit my job in 2009 because of my MS. Oh, I do know I have to pace myself, but when will it ever stick? Continue reading That daily fight

World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself to slow down and take stock? Or tell yourself to dive head first into living?”

Dear me,

“You have mild MS…”

“Mild” is good, “mild” means that I can keep on working, “mild” means that I will be able to live with it.

“It is just “mild” so nothing is wrong with me…”

I remember every single minute of today, of my diagnosis. What was said; done; not acknowledged.

I was told I would have to change my lifestyle. I think these words are even worse than hearing I have mild MS. I don’t want to change my lifestyle, and besides, how do you change your lifestyle?

How, when all this started?

Denial is setting in because I don’t want this illness inside me, I want to live, to travel, to study, to work.

To work. Will I tell my employer?

Will I tell my colleagues, friends, family?

Denial somehow turning into joy because I am not imaging the symptoms I have because the consultant in hospital thought I was “just-another-Monday-morning-I-don’t-want-to-go-to-work-today” case when I checked myself in hospital just weeks before my diagnosis. Joy because it is not a tumour. Joy because I want to live, because I need to live.

So here I am now. An illness that cannot be cured, and I am told to change my lifestyle. I am not going to because this is my life, and I want to live. And I will. I will work, and enjoy life, every single second of it. Because this life is only just beginning.

“You look after yourself, girl…”

I am, and I will, no matter how far this illness will take me.

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. 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.

World MS Day 2012: Letter to my newly diagnosed self

Two years ago, the organisation of World MS Day, asked us to write a letter to our newly diagnoses self, no matter how long ago we were diagnosed: “If asked to write a letter to yourself today, to be read on the day you were first diagnosed, what would you say? Would you tell yourself to slow down and take stock? Or tell yourself to dive head first into living?”

Dear me,

“You have mild MS…”

“Mild” is good, “mild” means that I can keep on working, “mild” means that I will be able to live with it.

“It is just “mild” so nothing is wrong with me…”

I remember every single minute of today, of my diagnosis. What was said; done; not acknowledged.

I was told I would have to change my lifestyle. I think these words are even worse than hearing I have mild MS. I don’t want to change my lifestyle, and besides, how do you change your lifestyle?

How, when all this started?

Denial is setting in because I don’t want this illness inside me, I want to live, to travel, to study, to work.

To work. Will I tell my employer?

Will I tell my colleagues, friends, family?

Denial somehow turning into joy because I am not imaging the symptoms I have, because the consultant in hospital thought I was “just-another-Monday-morning-I-don’t-want-to-go-to-work-today” case when I checked myself in hospital just weeks before my diagnosis. Joy because it is not a tumour. Joy because I want to live, because I need to live.

So here I am now. An illness that cannot be cured, and I am told to change my lifestyle. I am not going to because this is my life, and I want to live. And I will. I will work, and enjoy life, every single second of it. Because this life is only just beginning.

“You look after yourself girl…”

I am, and I will, no matter how far this illness will take me.

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. 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.