This post features a long, infochart, which you can find when you click → Continue reading
One of the many issues ill people struggle with, is trying to explain how or what their clinical symptoms feel like. Vice versa, and after another round of being a guinea pig during clinical excellence exams for already established doctors, it was clear that many people request non-medical terminology from their doctors also. Continue reading
With World MS Day 2015 now gone for another 365 days, I shared a few words yesterday about one of the things I hardly ever talk about in regards to my own MS: the day I woke up without sight in my left eye, and the subsequent fear of permanently losing my eyesight.
We use our eyes to learn, navigate, assess and appreciate. They help our brain understand our environment and sometimes, as peculiar as it sounds, we use them to listen. Continue reading
‘Hypochondria? It’s the only disease I haven’t met yet.’ One of the better jokes I can actually remember, as I simply don’t do long ones.
MS? Awkward, puzzling, easier said than done, and the type of illness that carries this tagline, “The illness is mine, but the tragedy theirs,” when asked how your family feels about your condition. Buzzwords that don’t exactly calm down an overactive mind.
Any illness is unwelcome, that much we can agree on. MS can strike in so many different ways that your life often resembles a war zone. When I entered the MS academy, I read the small print and knew it wouldn’t be a 365-day holiday. But, if one good thing has come from being diagnosed ten years ago, it’s the perception that no matter what happens, life goes on.
And boy, does it go on. Continue reading
But then friends started saying that I was “slowly turning into a blonde”. Physical discrimination on the basis of hair colour aside, I felt they had a point. Concentration skills went from hero to zero. Walking from the couch to the fridge a massive undertaking. In tears in front of the staircase after work because I had to sleep for an hour before being able to scale its height.
In short: I knew I was ill.
It turned out I was ill. Continue reading
It’s all been a bit crazy since that first day of the New Year came peeking from behind that cold, frosty door. It’s now an icy, jaded Saturday morning in the north-west of Dublin, and the RBS Six Nations rugby tournament just started.
Utter bliss so. Red cheeks from absolute delight.
On Monday, I have a new appointment with my neurologist, and with two separate eye doctors in hospital a few days later. Somebody should let me hire a very fancy suite in the hospital, as there’s no point going home and back again twice afterwards, especially since my energy supply is limited.
Am I dreading my neurological check-up? In a way, yes. After 8ish years on my DMD (Disease Modifying Drugs) Copaxone, it just doesn’t work anymore. The four-month relapse last year was proof enough. The idea of relapsing again is a scary one indeed, so I aim to find the right words and ask for an upgrade of my therapy. Continue reading
Ruth Humleker, a profoundly political, strongly opinionated and utterly fearless woman once said, “I can change only myself, but sometimes that is enough.” With her words often on replay in my head, I think back to that day.
Yes… t-h-a-t day in April 2005.
Diagnosed. Officially a lifetime carrier and member of a band called multiple sclerosis. Question is, what will you do with that membership? Use it? Abuse it? Throw it out?
As it turned out, soon after t-h-a-t day, I knew I would be using this broken vehicle as a tool of some sorts, perhaps to help others. And yes, yes… you can stop whispering “anyone but yourself!” Continue reading