My name is Dave and I’m Beth Shorthouse-Ullah’s husband. We had spoken about the possibility of writing a column that looks at the experiences of partners of people who have multiple sclerosis (MS). But instead of sharing a thought-provoking piece from another perspective, today I sadly announce that Beth…
The “invisible” symptoms that are common with relapsing-remitting MS and many other chronic illnesses can be the bane of our lives. It’s difficult enough to manage them, as they’re constantly fluctuating like a changing tide. But in some ways, it’s even more difficult to explain them to…
“You only begin to grasp the import of an event – and its larger implications vis-à-vis your life – long after it has entered into that realm marked ‘memory.’” — Douglas Kennedy, “The Moment“ I am reading my first book since multiple sclerosis (MS) fatigue reared its…
“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.” — Dan Millman I’m now living with multiple chronic illnesses. Lately, time has been rushing past like a ravenous flood, or standing still like a lonesome statue. In…
As an adult, it hasn’t been easy for me to get into the Christmas spirit. Planning festivities and buying gifts don’t come naturally to me. Perhaps it’s because adult life never ends, whereas as a student, I had holiday breaks that signified the beginning of the season, allowing me to…
Ten years ago, my husband and I lost our twin girls during my 18th week of pregnancy. In some ways, it feels as though this decade has flown by in the blink of an eye, but in others, it feels as though an eternity has passed. Several years before I…
Just like a surgeon’s prize hand or a ballerina’s plié, my mind has been my most valued asset. That’s been true all my life, through realizing my passion for science, achieving my undergraduate degree in biomedical science, and even keeping myself sane during the dark days of paralysis following…
It’s in my nature to get a little reflective around significant dates, such as New Year’s and the changing of the seasons. I love that these occasions represent change and starting fresh. So celebrating my seventh wedding anniversary on Aug. 29 has made me rather contemplative, more so than in…
Last week, we welcomed a wonderful person into our family. My not-so-little brother got married! The wedding was beautiful — so beautiful that I couldn’t let myself feel it all in the moment. Who wants to hear the loud, ugly crier?! (I did my happy crying loudly in the ladies’…
Having grown up in the countryside, I’ve been around animals my entire life. We always had dogs and cats, and I learned how to ride horses. It was tranquil and storybook. When I left home to take a trip or attend university, I experienced a void only the animals in…
My brother is getting married in two weeks, so last weekend, I attended my future sister-in-law’s bridal shower in London. When it came to managing my relapsing-remitting MS (RRMS) on the trip, I pretty much broke every rule I live by. Surprisingly, taking risks paid off for me, which…
As anyone with chronic illness knows, leaving the house requires planning. There’s much more to think about than what’s visible, especially if you’re relying on public transport. In the days preceding last week’s appointment with my multiple sclerosis (MS) nurse, I was contemplating just how long it’d been since…
“So can you lift me up/ And turn these ashes into flames/ ‘Cause I have overcome/ More than words will ever say.” — Kate Voegele My relapsing-remitting multiple sclerosis (RRMS) diagnosis stole my life from me. The reverberations of this unwelcome thunderbolt were astounding. Coming to terms with a…
“Without leaps of imagination, or dreaming, we lose the excitement of possibilities. Dreaming, after all, is a form of planning.” ― Gloria Steinem For as long as I can remember, my father has always had a saying: “Perfect planning prevents piss-poor performance.” Much to my husband’s frustration, though, I’m still…
“A holiday is an opportunity to journey within.” — Prabhas Last week was only my second weeklong holiday since my relapsing-remitting MS diagnosis in 2017. My husband and I have had weekend getaways here and there, mainly to visit family. Of course, COVID-19 has placed a huge restriction…
Imagine this scene: There’s a rowdy crowd of nearly 40,000 people in a rugby stadium with music blaring over the Tannoy speakers. Newfound numbness spreads throughout the majority of your body, and on top of that, you can hardly see. That was the perfect myriad of factors to elicit my…
In relapsing-remitting MS, relapses and exacerbations involve a worsening of symptoms or the appearance of new ones for 24 hours or more. My disease baseline has changed many times over the years, but has never returned to how it was before my symptoms began. I’m intrigued by how…
Like watching a scale tip up and down, I’m constantly assessing how any choices I make could affect how I feel tomorrow, or even later today. Although my multiple sclerosis was as aggressive and unstable as a hurricane in my first few years with it, I’ve found a baseline…
The thought of summer approaching both worries and excites me. I’ve always preferred the changing of seasons and fair weather to the height of a season, even before my MS diagnosis. I prefer change and the idea of starting anew, as if it might be a remedy to the…
“The carousel never stops turning.” – the TV drama “Grey’s Anatomy” At the 2019 European Patients’ Forum Congress in Brussels, which focused on patient involvement in healthcare, attendees were invited to write down a list of goals they wished to achieve in the next 12 months. After rolling my…
Without hesitation, I would say that my bladder and bowel issues have been the hardest symptoms to manage and overcome following my MS diagnosis. It comes down to one thing: the fear of having an accident in public.
There is an ongoing difference of opinion between my husband and me regarding my general outlook on life. I consider myself to be a realist, whereas he thinks I tend to err on the side of pessimism. I’m an overthinker. I’ve always felt things incredibly intensely. Interestingly, when I read…
“‘Cause I would never break your heart/ I would only rearrange/ All the other working parts will stay in place.” — Biffy Clyro, a Scottish rock band If you’ve spent any time in a hospital, you know that it never gets completely dark. There’s always a light flickering somewhere, a…
“Serendipity. Look for something, find something else, and realize that what you’ve found is more suited to your needs than what you thought you were looking for.” — Lawrence Block When the world was thrown into lockdown at the dawn of COVID-19, I was already an old hand at functioning…
“Mirrors don’t lie. They only show a part of truth.” — Lara Biyuts I’ve written about how my reality feels jagged compared with actual reality. I wrote, “The woman looking back at me isn’t whom I perceive myself to be.” I’ve been pondering this recently. The realism of reality With…
“Most of the time, the greatest rewards come from doing the things that scare you the most. Maybe you’ll get everything you wish for. Maybe you’ll get more than you ever could have imagined. Who knows where life will take you? The road is long, and in the end, the…
“I close my eyes/ Only for a moment then the moment’s gone/ All my dreams pass before my eyes, a curiosity.” — Kansas, “Dust in the Wind” The dark cloud of fatigue first swept through my mind toward the end of 2018. I was no stranger to physical fatigue,…
“In order to rise from its own ashes, a phoenix must first burn.” — Octavia E. Butler You know that feeling of waking up in a strange place, and it takes a second to remember where you are? Imagine that coupled with not being able to move from the neck…
“You know that place between sleep and awake, that place where you still remember dreaming?” — James Matthew Barrie Being diagnosed with relapsing-remitting multiple sclerosis significantly changed my perception of myself and the surrounding world. This drastic shift has been overwhelming and difficult to accept in many ways. The…
“Hey, man, I’m alive. I’m taking each day and night at a time/ I’m feeling like a Monday but someday I’ll be Saturday night.” — Bon Jovi Multiple sclerosis (MS) medications can generally be separated into two categories: disease-modifying therapies (DMTs) and those that help to manage symptoms. While…
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