Ah yes, you know the term.
In proper Wikipedia language, it reads “An argument or other discussion that has continued ‘to [the point of] nausea.” In Irish slang, “We are bloody well tired of talking or hearing about it.”
And that, dear reader, we are. Severely sick and tired of hearing that the Irish government will ratify the UNCRPD by a specified date, only to find out that they very silently forgot to live by that promise. Needless to say, having the gift of the gab in Dáil Éireann is an advantage, yet those we elected to represent our very needs refuse to use that gift when it matters most. Continue reading “UNCRPD, Ireland’s ten-year moral outrage”
I agree it has been fairly quiet here. A lot has happened the past few months which required the usual RRS, the almighty Rest, Relaxation, and Sleep. New things are still taking shape, so do hang around or drop me an email.
💋💋💋 Pucker up in the meantime in February! Go RED to KISS GOODBYE TO MS, the global fundraising campaign, supported by MS Ireland also. Donate €4 to MS research when you text Smooch to 50300 💋💋💋
New posts will appear soon, though, so keep an eye on your email or WordPress account!
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It’s been rather quiet down here. The past four to five months, I’ve been involved in disability rights campaigns and had a long much-needed Christmas and New Year’s break. I’m now back to passive campaigning in some form or another while having the flu… it’s never boring in MS-land.
With the Irish election campaign in full swing, it’s difficult combining high-powered fatigue issues and other MS symptoms with the amount of advocating I want to do. The first and second are, as most of you know, difficult to tackle, the latter not acted upon enough. I’m still dedicated to writing for my blog, though, and also for the Novartis and Irish MS Society blogs.
There is one thing I would like to highlight. In my belief, disability rights are something we all need to fight for because sooner or later, we will all be confronted with it. Quite often people portray to care about those with chronic illnesses and disabilities, yet they don’t. Either we are “not accountable in steering our country forward,” and therefore, are seen as “a burden on society.”
This has to end
By the time of my MS diagnosis 2.5 years after moving to Ireland, I already knew about the state of Irish health services after ending up with a knee injury, appendicitis, and endometriosis. Clearly, the focus of the Irish government between 2002 and 2010 was solely directed at job creation, providing new housing and playing golf games with bank managers and celebrities. Continue reading “Disable Inequality”
Some days I feel like a half-baked Cinderella. There’s some promise at 8am, but by 10am my fairy tale book is closed until further notice. In the background, that all-important Cinderella clock keeps ticking forward. My body is in a rut: sleeping, eating, exercising, resting, eating, sleeping and back again.
And that Cinderella shoe?
Taken by someone else altogether.
In other words, and very much like a psychological broken record, I keep finding out that I am 100% present, but physically I am a goner. Continue reading “Are you Cinderella yet?”
Sometimes things happen in life you never saw coming. And sometimes, you feel utterly defenseless because you simply couldn’t step in to help.
But what if you create something good out of something so bad?
Continue reading “Volunteering, a worthy cause”
Ah, public transport in Ireland… Two-track train stations without elevators or escalators. Buses with seats for supposedly elderly or people with disabilities. Crutches or walking sticks that should indicate some form of disability…
People with disabilities have all been there. Literally too tired to walk another mile, they find steep, rusty, wet and windy staircases over train tracks instead of escalators and/or elevators in train stations. Absolutely, public transport in Ireland is slowly moving into the 21st century, with new footbridges being built with elevators inside them, but still… constructing and/or adapting them is not happening fast enough. Continue reading “Irish public transport: access all areas?”
This year is the European Year of the Brain, and 2014 also marks the 25th birthday of the EMSP, the European MS Platform.
Unequivocally and visibly astonished, that’s what I am right this minute. The quality of yet another MS organisation and the hard work they do, makes me want to jump up and down. Digging deeper into the work of the EMSP because of their upcoming two-day conference in Dublin, I can only say one thing: ‘People with MS are in very, very good hands, with people with- or without MS standing up for them wherever they are.’
Continue reading “EMSP Spring Conference 2014, Dublin”
The MS Trust posed me a great question, asking me to help spread a word about the UK Awareness Week that runs from April 28th to May 4th. I do love a challenge, so anyway I can help from my keyboard, I happily attack!
So, do you feel like a challenge? How about a fun way to raise awareness regarding MS? Check out the UK’s MS Trust website to be inspired, take a stance and do something worthwhile. MS Trust’s Awareness Week and we want you involved!
The trust was set up 21 years ago, and is celebrating this by inviting everyone to join their 21 day challenge and sponsor, shout and help others spread the word about MS Trust’s Awareness Week from April 28th to May 4th. Continue reading “MS Trust 21 Challenge”
Last year I attended a meeting in Leinster House, the seat of the Irish government, organised by the Neurological Alliance of Ireland (NAI) to highlight the sad state of neurology in Ireland. What I heard and saw that day is still very much etched in my memory because of the impact it had (see blog post of 2013 here).
It was with keen interest so that I attended the launch last week of the results of the 2014 national survey called ‘Living with a Neurological Condition in Ireland’ organised by the NAI in the Mansion House, Dublin.
Continue reading “The sorry state of neurology in Ireland: one year on”
Injection needle, fridge. Taking out another pre-filled syringe to ward of future multiple sclerosis relapses.
To others? A scary thing, a daily habit they could not fathom.
To me? Now, the fluid of my life. For my life. Continue reading “Injecting object”
Not residing anywhere else but here, inside me.
Nine years and counting. Probably a lot longer if you really want to play dirty.
Why did you choose me when there were so many other people you could have picked? You were probably out for vengeance for working too hard and resting too little. You probably thought it would be fun seeing me cry at the bottom of the staircase when I was too tired to go upstairs. Did you now, did you truly think it was slapstick-funny?
Continue reading “A powerful letter to my MS”