When it comes down to awareness-raising and thought-provoking initiatives in the health charity sector, fresh ideas are often hard to find.
Not so for Joan, a dear friend of mine. After her original Selfie Book idea created by her regional MS branch for World MS Day in 2015, Joan wanted to expand this Facebook idea and create a book for newly diagnosed people. Her own diagnosis – raw, no counselling, no management plan or words of inspiration from others who already walked down the same path, was something she wished had gone differently. In short, Joan was looking for a sign of hope, and something “telling me how people can get on with living a good life and that it wasn’t the end.”
You know you’re on to something when you recognise your medical file from afar, even when it’s tucked between 15 other colourful medical records.
Sadly, this is a fact that even World MS Day on Wednesday, May 30th can’t heal. Nevertheless, as a global community of approximately 2.3 million people with MS, being part of the solution – a.k.a. spreading awareness and pushing for a cure – can be infinitely rewarding. On WMSD, I feel an even greater purpose to be part of that solution, whether it is by attending disability-related meetings and spreading the word afterwards, or simply by becoming more conscious of the problems people with MS and other disabilities are facing in the world today.
To mark World MS Day 2017 here’s a flashback moment from 2015!
“As sobering as this post sounds, I tolerate MS. There’s no resentment or blame, no more heartache, guilt or doubt. I find solace in seeing science produce more and better research results and medication. Clinical trials are moving forward at a pace that will eventually lead to an easier life with an illness that is as fickle as MS.”
‘Hypochondria? It’s the only disease I haven’t met yet.’ One of the easier jokes I can actually remember as I simply don’t do can’t remember 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.
Have you ever wondered, “What exactly is my purpose on our little shining blue ball floating around in our vast universe?”
Congratulations, so have I!
It took me the better part of my teenage years – if not very young adult life – to get to the stage where I thought, “Yes! Eureka! Yes, I found out what I am doing here!”
Translated, it sounded more like this, “I know where I am going to live!”
Part of the master plan that had been hiding in my unconscious mind had already been set in motion, albeit drifting rebelliously between my conscious and the harder to access unconscious level, before mischievously appearing again.
“Oh, you can bet I am willing, I am usually more than willing. When physical restraints curb your potential, you realise that you want so more from your own life, and out of your own reality. Life is moving forward outside your medically induced world, and you feel annoyed when healthy people don’t realise the worth of their bodies, their unused potential.
It simply reminds you that being chronically ill sucks.
It’s energy being depleted in all the wrong places. There is no uptake to being ill. There is no room for maneuvering when you’re faced with an illness that will -quite literally- be there until you draw your last breath. Do take it from someone who’s already stared death in the face because of it; it is so not all it’s cracked up to be, honey.“
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”→
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