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,…
Life begins at the end of your comfort zone
Sometimes I just don’t feel like talking about what goes on mentally or physically. Not being able to sleep properly doesn’t do much good either, so writing about everything that has been ruling my day, was rather hard to do. Having MS is no mean feat… If your MS is anything like mine, then I’m quite sure that you know what I’m talking about. Or maybe not, because people with MS can differ from person to person as no two people are alike symptom-wise. A lot of people are in the relapsing-remitting stage of MS which means that you can have a flare-up (also called relapse or exacerbation) and then you’re mostly symptom-free for a while until another flare-up happens. Seeing as MS is a chronic and degenerative illness, you…
A new dawn, a new season
September 1st… There is some security in hearing those words. September 1st reminds me of my first days in school, of the start of autumn and winter, of the coming of Halloween and Christmas, of curling up on the couch under a blanket and with the candles and the open fire lit… There’s something in those last few months of the year that make me long for them all summer long. I am glad the warm or hot summer temperatures are gone again for another 6 months or so, and even though I love summer… the temperatures are my biggest enemy. My reasons for loving autumn and winter have nothing to do with being a negative person, because I am not. Physically, my body cannot take anything more than 17°…
MS fatigue… the invisible monster
MS fatigue… The most common, yet most difficult to detect a symptom in multiple sclerosis. Aside from feeling exhausted, having to explain people over and over how different it is to normal tiredness, you often get a stigma assigned of “yeah, yeah, you’re just being lazy” or “sure, now keep walking, it’s probably not that bad.” Not everyone will express their opinion out loud, but people will think about why you’re “just not making a bit more of an effort”. MS fatigue is more or less an invisible symptom and it’s hard to explain exactly what it feels like. Some people will stop talking, walking or you will notice changes in their behaviour. Unlike normal tiredness fit people feel after exercising or working 8h a day, MS fatigue is an…
What MS feels like in your mind
What multiple sclerosis feels like on a mental level? How does it affect your mind? These are questions many people wonder about: those with MS, wondering how others feel with the illness they share. Or people without MS, like your family, your friends, just curious how you are feeling. And then there are those that ask that question as well because they don’t believe a word of what you’re saying. These are questions I sometimes ask myself, because the symptoms come and go, change and get better or worse. Disappear altogether while new ones appear. So what goes on in your mind with the constant changes? Knowing what MS feels like if you have MS yourself, that makes you an expert patient… of yourself. I’ve met all three types of people;…
Why Ireland?
People often ask me: “Why Ireland?” And tongue-in-cheek, I think, “Do you have a day or two so I can explain?” It goes back years, if not decades. I remember as a kid in the library under our apartment, how I traveled through Ireland by sitting down and watching pictures in big books on Ireland. I could not imagine that the Ireland in the travel guides was the same island of Ireland we used to see on TV at night, where people were killed in bomb attacks and house fires in the north, where people were executed for their religion, their beliefs. Of course, the news reports were about Northern Ireland. Somehow I was attracted to the underdog, and in my eyes Ireland was that underdog. I’ve always had a…