Giving up?!
But, MS is the keeper of secrets. Not just for a day, but forever. So, rewrite your narrative, embrace its playful game of cards waiting for you to chase triumphs during times of adversity.
Sleep and MS… It’s what’s (not) happening!
Imagine standing all dolled up at the front door, excited to go to the film you’ve been dying to see. That doesn’t do it for you? Replace ‘the film’ by ‘finally buying the boots you’ve been waiting for’ or by ‘rushing out to buy a new power tool’ to finally set up new furniture.
How are new medicines approved?
If you have MS or any other chronic or acute illness, you might be dependent on pharmaceutical intervention at some stage. But, how exactly do your medicines arrive in your hands once they passed the clinical trials stage? The EMA (European Medicines Agency) own scientific committees will scientifically assess the clinical trial data. Once this stage is finished, the EMA gives independent recommendations on medicines. When they receive a green light, i.e. when the benefit of the medicine is greater than its risk, the EMA gives its approval to the EC, the European Commission. This means it can be authorised and can now be marketed across the European Union, including the EEC, the European Economic Area.
Pull up your big girl panties!
Let me count… Roughly speaking, I was diagnosed with MS about 5000 days ago. That’s one fair bit of experience under my hood, right? But… When talking to people, new or otherwise, it can be difficult telling them you’re living with an incurable neurodegenerative illness. Sometimes it feels like being in an uninterrupted car crash, minus the brakes, seatbelt or the steering wheel, especially when they add their own preconceived ideas about MS based on hearsay or pop-culture folly. Even if you’ve been living with MS for a decade or for just one day, you’re occasionally hitting walls of guessing, worries, disbelief and/or anger at each turn. You’re in denial. (they’re probably as well at first) You’re angry. (there’s a fair chance they are trying to remain cool under pressure when you…
You retired at age what?
So, yes, I retired at age 36,5 and it will never be what I envisioned when I moved to Ireland. I ‘ve crashed and burned, stumbled and found hope in tiny triumphs and friendships larger than life that will stand the test of time.
Bliss, the MS-way
I long for autumn since the first few warm days. I long to walk in Phoenix Park, kicking up fallen leaves that have been building up under large oak trees. The changing of colours in nature is invigorating, it serves as a token that life goes on, that seasons come and go, each year bringing new fragrances and new stories waiting to unfold.
The beauty and cruelty of words
What we hold dear about putting pen to paper is the urge to create something out of nothing, quite often to slow down a fast-paced society where the purity of words have become chaotic and yearn to become meaningful and treasured again.
