• MS in numbers

    “Instead of going into the possibility of ending their life in a wheelchair, I refer to the opposite side of the scale. When they say “But 25% of people with MS will end up in a wheelchair!” I say “Perhaps, but that means that 75% of people with MS will not end up in one at all!” Continue reading

  • Irish public transport: access all areas?

    “At this stage, I thought “Do I really have to walk with my coffin under my arm to get a seat when I’m physically leaning on a walking stick while holding the handrail as if it was my best friend?”” Continue reading

  • The sorry state of neurology in Ireland: one year on

    “Governments past kept on suffering from their own kind of neurological illness, i.e. selective memory loss when these services so clearly demanded upgrades.” Continue reading

  • A powerful letter to my MS

    “You made each of us different. MS has 50+ different symptoms, and multiple sclerosis just wants you to go through it alone. I never asked for you, I never wanted you so I sure as hell want you gone. For good. But I figured you out though.” Continue reading

Ten happy MS years

Dodinsky quote with red flower

A milestone like no other. A curious, strange one indeed.

Ten years of living with MS.

Ten.

In fact, ten years and one week.

Reality suddenly became a very different kind of living. As strange as it sounds, it became a more fulfilled life, a happier one also.

Of course, I wasn’t prepared for a diagnosis that spelled trouble ahead; after all, MS is a neurodegenerative illness. There would be trouble ahead. And there was.

As Albert Einstein once said, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

It’s safe to say that I was that fish and I was trying to climb a tree the first year of my diagnosis. My neurologist said I needed to change my lifestyle. Seriously? I could have been knocked down with a feather of surprise.

I started working hard. Went out. Went on holidays. Did silly things. Serious things. Loved and lost.

Anything but changing my lifestyle. Of course.

Reality indeed was a different kind of living. But you know what? I loved every moment of it. Even after a superbug. Losing selfish friends. Gaining even better ones. Losing unreasonable boyfriends. Deciding I didn’t need a relationship in order to be happy.

Happy, even after relapses, 30 pills and 1 injection a day, even after reading terrifying stories or new research results that will spell disaster for some.

I love the person I’ve grown into. My mind, my soul and my life has taking serious knocks over the years, but I found my voice, my reason for being. I’ve family and friends who have my back, just as I have theirs.

If I want others to know about MS, I would say, “Life goes on. It really isn’t the end of the line.”

© 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.

Positive MS News: September 2014

image multiple sclerosis header news

It has been a big and very busy September for researchers, clinical trials and pharmaceutical companies. Early this month, the Joint ACTRIMS/ECTRIMS Meeting took place in Boston. For more, please check the extensive website of the conference. Continue reading

What you might not be aware of

Building further upon my previous post, “What we don’t know,” let’s open the “Surprise!” book of MS. Before you read any further though, I do want to say that I do not have below symptoms all at once, or on the same day. Some are more present than others, or less or more intense. Some happen once a week, others perhaps more.

You probably know by now that my main symptoms are still ridiculously strong fatigue and similar facial pain, so what you will find below is more or less just a slight blip on the radar in the scheme of things. Unless I fall off the staircase of course, which would be rather erm… well… just silly, n’est-ce pas? Continue reading

What we don’t know

The MS community is well known for its willingness to talk about their illness. I myself might share more than others might, but that, of course, is a personal choice. Being from a family where I am the first one with MS, I almost constantly feel a need to share, teach and sometimes to explain some differences in opinion on how to live with MS. In that regard, I sometimes have MS things on my mind, but when I go online, I can’t see them discussed in chat rooms or forums.

Take for example brain atrophy. The first time I heard about atrophy was at a MS Patient conference in May. In the nine years of being diagnosed, never had I come across, and never did anyone talk to me about MSers having a faster-shrinking brain. To my very surprise, I therefore learned that in people with MS, brain volume is lost around three to five times faster than in healthy people. Continue reading

Death: a fearful thing

2008

I was afraid.

Each time I experienced gastrointestinal changes, I tried not to worry. But I did.

Even when I tried to get this worry down on paper, I failed to finish two consecutive sentences. One sentence if I allowed my interior monologue to perform a James Joyce oration without punctuation.

That was not me however. I usually didn’t let chaos overwhelm me. My path of life had on regular intervals been paved with chaos, so I was well-used to it. Continue reading

Featured On page updated

Interested in reading more? Check out the Featured On page on my blog with links to guide you!

 Neurons firing to communicate

Click for news on how MS fatigue may be linked to regional brain damage

© 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.

 

Please help keeping the writer of this establishment caffeinated

D67E67A2-A1D9-4ABE-9D93-2E56390189F0-24007-00000188775ACDFBAh ladies and lads, you know I can be a bit kooky at times; hell, I can even get a little annoyed as well when things don’t go my way. I therefore won’t do it on this page. At all.

Where others might ask for the price of a pint, I don’t drink alcohol, so I won’t fall down on my knees begging you.

I also won’t fall down on my knees asking you for a donation of the price of a fag, as I don’t smoke. Continue reading

Big pharma’s friendship

It’s not like it was ever meant to be. I lived an almost frugal life, not in a penny-pinching kind of way but willingly not accepting any chemical products in my system. No cigarettes, no alcohol, no mind-altering hard or soft drugs. You get the idea, straight edge, but without the punk attire. With the help of my family’s diet, I lived a very healthy lifestyle, that much is true.

So what went wrong? How do you become the owner of a chronic, neurodegenerative illness nobody in your family has, despite the supposed genetic predisposition people with MS have?

Did I stress too much in my adult life?

Did I have a difficult childhood?

Did someone else in my family have MS without them being aware of it?

It’s hard to know when the cause of an illness is yet unknown to research scientists. Continue reading

Tiredness ≠ fatigue

Sunday 9.13am. While others are slowly waking up, I can barely keep my eyes open. In fact, I am sliding deeper and deeper under my duvet, with my laptop now at an awkward angle to type. Being wide awake since 1.30am – thank you so very, very much MS – has depleted my energy tank.

“So what?” I hear people say. “It’s Sunday after all.”

Yes, I do know how to read calendars and clocks. I even know how to reset the microwave clock when Ireland changes to a new daylight saving time. Please don’t compare healthy tiredness to medical fatigue, it’s like comparing microwaves to planet Mars.

Continue reading

Positive MS News: August 2014

 

gene-that-controls-nerve-conduction-velocity-linked-to-multiple-sclerosis-neuroinnovations

August 2014 has been a great month for people with neurological illnesses, as they finally saw their type of illness broadcast, and indeed, doused by ALS ice bucket challenges.

To quickly place ALS amongst other neurological illnesses, perhaps the most famous person with ALS is Stephen Hawking, a person hero of mine since my teenage years. ALS, also called MND (Motor Neurone Disease and Lou Gehrig’s Disease), is similar to multiple sclerosis, and has several causes. A lot of money has gone to charitable organisations supporting ALS as well as other neurological illnesses. Continue reading

1 2 32

comics, pop culture and related topics

MS. Diagnosed

Defeating Disease One Post at a Time

ZeitHeist

the pan-arts digital archive of the NOW

HBR Blog Network - Harvard Business Review

Business bloggers at Harvard Business Review discuss a variety of business topics including managing people, innovation, leadership, and more.

Alzheimer's, Parkinson's and Multiple Sclerosis

Getting to the Root Causes of Neurodegnerative Diseases

Dr. Kent

Herbal Specialist

dorothymooreblog

This WordPress.com site is the bee's knees

Chris Brake Show Podcast

Indianapolis Podcast | Indiana Talk Radio Show

craftedincarhartt

a blog about women who do amazing things

Rizhen Topic

Art, Culture, Quotes, love, Sport, Trending Topic

The Red Rush Blog

Nitric Oxide Performance Shot

Fiction All Day

Writing and Life ~ by David Ben-Ami

Im ashamed to die until i have won some victory for humanity.(Horace Mann)

havau22/ IF YOU CAN'T BE THE POET, BE THE POEM...LIFE IS NOT A REHERSAL,SO LIVE IT.

joanjordan

Smile! You’re at the best WordPress.com site ever

Neuroskeptic's Blog

Just another WordPress.com weblog

Shane O'Mara's Blog

brains, behaviour, society

The Irish Brain Council

A voice for all areas of brain science in Ireland

Follow

Get every new post delivered to your Inbox.

Join 1,150 other followers

%d bloggers like this: