Some days I go through life like a half-baked version of Cinderella. There’s promise at 8 AM, but by 11 AM my fairytale book is closed until further notice. In the background, that all-important clock keeps ticking forward, but my body is in a rut: sleeping, eating, exercising, resting, more eating, more sleeping and back again. And that Cinderella shoe? Taken by someone else altogether. Very … Read More The truth about Cinderella
Can you recall what life was like before this craziness started? Nope? Neither can I. There is a bit of mental derailing going on right now. Fatigue is back with a vengeance. I am so excellent in not sleeping well, that when I do, it’s a reason to organise a party, or rather, a pyjama gala. Sponsored by MS. And it’s undoubtedly impacting my … Read More Do I have stupid written on my forehead?
I believe it’s fair to say so that the ‘Living Like You’ as well as the ‘MS & Me’ writers share the same gratitude. Being nominated by the public means you are owed a big thank you for not just having our back, but also for sharing our words with hundreds of people. Your voice – though often unheard – means that MS isn’t a lonely illness, but a shared concern.
Have you ever wondered, “What exactly is my purpose on our little shining blue ball floating around in our vast universe?” Have you? Congratulations, so have I! It took me the better part of my teenage years 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 … Read More Paper dreams
Highlight still on American Healthcare Act, the replacement plan for the Patient Protection and Affordable Care Act (ACA) released by Congress on March 6, 2017 Society Releases Statement on American Health Care Act National MS Society Urges Lawmakers to Oppose American Health Care Act Reducing Out-of-Pocket Cost Barriers to Specialty Drug Use Under Medicare Part D: Addressing Researchers find patients’ annual financial burden under … Read More MS News: March 2017
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.
Today, I joke about not being perfect or about my mind behaving like a repetitive software update that refuses to stick after a few busy days. I may add that my bones rattle and that I have a Club Med-type relationship with three different hospitals, my primary care physician and my pharmacy. Or, I forget my name, fall asleep at fancy receptions, need an hour to cut three peppers and two onions and sometimes need to nag to myself to get things done.