• 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 … Continue reading

  • 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

What others don’t know

The MS community is well known for its openness and 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, to teach and sometimes to right 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. Continue reading

Featured On page updated

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

Featured On

© 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

No end to trigeminal neuralgia

b61ee3bf0e7ee52d0332a9f29cdf1143Oh dear.

It was indeed that time again.

“When I’m good, I’m really good, but when I’m bad, I’m even better,” Mae West once said. Now I don’t know much about Mae West, but I see her as an all-out cowgirl, slinging guns left, right and centre. In that respect, Mae, girl power, and let us all be great when we’re good, and even worse when we’re bad!

While I’m sitting here, typing fine long sentences, I’m almost giddy of pain, and the left side of my face feels like it’s being pulled way west in the direction of the Atlantic Ocean. My left eye feel like closing up shop for a week or two, and my brain is slowly being stir-fried. Yes, that is what trigeminal neuralgia feels like.

It’s not always like this though, as trigeminal pain can translate in different ways. It can feel like the ice bucket challenge, an earthquake, and monsoons as well as just… Mae West’s “when I’m bad, I’m even better.”

Silly girl, of course (me, not Mae West). I’m an idiot. Here I am, telling people to take care of themselves, telling them to take some time off from their MS as it’ll be there long enough, but do I listen to myself? Continue reading

Shortlisted, and shortlisted again!

10157340_727226263966742_4615679532628949535_n

The writing gods have been very kind this week, and there’s a definite silver lining feeling attached to it.

Not only has the MS Ireland group blog, who I also write for, been shortlisted in the Blog Awards Ireland 2014 competition, but I’m shortlisted in the two categories I was nominated in with my own blog.

Everyone in the MSI group is ecstatic, and it just makes you want to do more, write more and just achieve more. Continue reading

Brain facts

history-of-multiple-sclerosis-01-pg-full

BrainFacts.org

BrainFacts.org – Neuromyths

SharpBrains

(If you find a website you think might or should be added here, please email me on billie@ireland-ms.com)

© WVE and Ireland, MS and Me, 2011-2014.Unauthorised 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 WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

 

Clinical trials

images

ClinicalTrials.gov

Drug Discovery & Development

(If you find a website you think might or should be added here, please email me on billie@ireland-ms.com)

© WVE and Ireland, MS and Me, 2011-2014.Unauthorised 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 WVE and Ireland, MS and Me with appropriate and specific direction to the original content.

 

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