Misty Monday
Right now I’m in from some kind of self-inflicted, being-stuck-syndrome. Thankfully, it only happens a few times a year. I am gasping for air and checking if I’m still alive every 10 seconds. It’s stifling my bones and putting my knickers in a twist. So I am listening to Lady Gaga. To lift my spirits.
MS Ireland National Meeting Day 2013
Last September, I was invited by the Irish MS Society to take part in a panel discussion at their National Day in Galway. I happily accepted because we all know that I never say no to having a good chat. The topic of the National Day was ‘being active and interactive’, and the panel discussion covered employment, exercise, being online and volunteering. Trevis Gleason, well-known in the MS stratosphere and a new addition to the Irish population, interviewed four people with MS: Grace, Anne-Marie, Mark and myself. These are the videos covering above topics. We were all a bit nervous (no, really?! :)) because of being filmed, but we all did very well.
My brother’s silence
Grief, a tear in my mind when others talk about their brother. A hug I cannot feel anymore. A future we will not share anymore. There is a silence I cannot place, memories that are beginning to fade. The silence he leaves behind, follows me in places in Ireland I know he would have loved, he would want to return to time after time.
MS News: November 2013
Thirty pieces of positive MS news published in November to brighten your day! Multiple sclerosis appears to originate in different part of brain than long believed Steven Schutzer, a physician and scientist at Rutgers New Jersey Medical School, has now found an important clue why progress has been slow – it appears that most research on the origins of MS has focused on the wrong part of the brain.
The Spoon Theory
Today I was reminded of a story I heard of a few years ago about a girl who lives with lupus and who tries to explain to a friend what life with a chronic illness, especially fatigue, is like. It is told in a very powerful and imaginative way that will hopefully shed a better light on how fatigue affects people living with MS, lupus and other illnesses that take a toll on daily life. In my view, it is the best piece of writing about fatigue I have ever read. As you know, one of my main disabilities is severe fatigue which is sometimes so energy-sapping that walking from my bed to the fridge asks for a rest in between. From the moment this level of tiredness became troublesome,…
Raining roses
Back after a much-needed break from writing. There were doctors’ visits and hospital waiting rooms, a very slow stroll through Dublin Zoo as well as lots of sleep and trying to lose weight before the Christmas holidays arrive. Friends came and went, and books were tossed aside after reading half a page. On a more exciting note, I ended up on writing.ie, the home of Irish writing online. I finally convinced myself to stop and take stock with the words “Being this overly, mentally busy doesn’t work for me anymore,” because deep down I knew I had arrived in Klutz Central. KC truly is the final destination and home of being unable to gather and store new information while having the energy levels of a sloth on Valium.
The right to die (updated)
"In the end, the truly sad thing is courts denying people the right to live their own life and deal with death when someone is so obviously tormented. Sanctity of life is a personal matter, what you or I see in this is not up to a court to decide. Not now, not ever."
