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