MS News: January 2018

MRI brain scan

Your monthly MS news is back after spending a few months in the cooler. It will continue as before, with highlights, news on research and clinical trials as well as lifestyle, diet and mental and emotional health. If you found an article you want to add to this post, please let me know. Highlight! 5 […]

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MS, Inc.

Perhaps losing my only sibling over a decade ago recreated the perspective on life I once held. It poured resilience into a mind that required to be strengthened for the many years ahead. Hope became the antidote to being tired of always being sick and tired.

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MS News: April 2017

Research worker

The latest MS news about clinical trials, research, treatments, mental & emotional health, diet and lifestyle, including highlights from Barts MS Blog

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MS News: March 2017

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 […]

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0% responsibility – 100% accountability

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.

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Single and chronically ill?

You can channel your inner delightfully, dazzling diva while wearing pyjamas, dog-shaped winter socks, leg warmers and your turban hair towel.

You can drag your duvet to the living room, watch Romeo + Juliet and cry for an hour afterward because Leo died when he shouldn’t have (Damn you William Shakespeare!)

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200 days

“To many, life with MS can seem like a book where letters have been replaced by numbers or where the cover can be too hard or too soft for its content. Because of this, I don’t want them to see what MS can turn into. I refuse to show them that there is no cure, I refuse to give them a reason to give up on me. In my view, it is very much a case of the illness being mine, but the tragedy theirs if I let them.”

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Being real!

Despite chronic pain and fatigue issues, I am making the best of my life, and I am doing everything possible to be the best version of myself as I can be. All I ask of you is some understanding of what I am going through, and know that every bad day is only making me stronger. Some days, though, I want you to hold my hand or hug me and tell me that everything will be OK.

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Conversations with myself

Nevertheless, positivity, when faced with chronic illness, is not a cure. It never will be. That doesn’t mean I can’t slander myself, right? Hitting the nerve, as it were. If my central nervous system is allowed to hit me, I am as authorised to hit back. Three times over.

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