A man’s illness
A man’s illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy. (Lauren Bacall) © Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2012. 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 Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.
World MS Day 2012
Tomorrow is World MS Day, highlighting the need for more research, better medication and spreading awareness of what MS is and what it does to people who have it. I often think that MS is a “lonely” illness. Because a lot of symptoms are misunderstood and/or not taken seriously by people who don’t have multiple sclerosis, MSers have to educate people in their environment about it. That doesn’t always go easily, and it often takes months if not years before some people finally realize that MS is a serious condition… “Lonely” because very often people around you simply do not know what it feels like to have maddening eye pains, or extreme fatigue. This is not because those people are not ranked high on the IQ ladder, but because some…
World MS Day 2012
Tomorrow is World MS Day, highlighting the need for more research, better medication and spreading awareness of what MS is and what it does to people who have it. I often think that MS is a “lonely” illness. Because a lot of symptoms are misunderstood and/or not taken seriously by people who don’t have multiple sclerosis, MSers have to educate people in their environment about it. That doesn’t always go easily, and it often takes months if not years before some people finally realize that MS is a serious condition… “Lonely” because very often people around you simply do not know what it feels like to have maddening eye pains, or extreme fatigue. This is not because those people are not ranked high on the IQ ladder, but because some…
Gilenya in Ireland, part 2
It’s been a tumultuous week. I didn’t win the lottery or meet my knight in shining armour, but I had my MS/neurological check-up in one of Dublin’s biggest hospitals. It created ripples of emotions, questions and very few answers and as expected, Copaxone will remain my disease modifying drug (DMD) for the next few… hhmm… years perhaps? I expected – or hoped – to hear about new drugs on the MS-horizon as there are silent whispers about more new meds coming out later this year, but none of that happened. Off I went so re-adjusting my beliefs, my hopes and my dreams. I just wasn’t happy about having to stay on Copaxone; in my eyes it just wasn’t effective anymore. I should have known better. My neurologist has studied at…
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…
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…
Gilenya in Ireland… or not?
Looking through the window and wondering when and how it all began… Did it creep up on me or did it just hit me with a ton of bricks? Honestly? I think I know when it all started, but then again, there have been past flare-ups or exacerbations long before that, even if I didn’t know what they were at the time. Hindsight is a wonderful thing if you know what to look for. It does not matter anymore how it all began. Maybe it was fate, but do I really believe in fate or do I just say I do? People often refer to the diagnosis of multiple sclerosis like an unwanted houseguest turning up on their doorstep, an unwanted guest who will be there until their last breath,…