Sometimes Pushing Boundaries With My MS Management Pays Off

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 made me think that perhaps it’s time for me to reevaluate things.

Let’s turn back the clock to last Friday.

The party was in central London. We stayed at my in-laws’ home on the outskirts of the city, which is a 3.5-hour drive from where we live.

As anyone who’s had a urinary tract infection (UTI) will know, they tend to sneak up on you quickly and mercilessly. I was happily packing in the midafternoon when the telltale tingling and sudden incontinence announced itself. An hour later, when we were supposed to leave, I started thinking that maybe it was a sign I shouldn’t go.

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That was the first rule I bulldozed through. Usually, I’m right to listen to my body. Nevertheless, two hours later, equipped with antibiotics — which from previous experience I knew would kick in as quickly as the UTI had begun — and my trusty incontinence underwear, we were on our way.

We arrived several hours later than planned, and I was tired and still uncertain if I had made the right decision.

The next day, powered by modafinil and amantadine, the fatigue medications I’m experimenting with in myriad doses, I got dolled up in a navy blue dress and red shoes.

The next rule I broke was not properly planning. I generally live by my father’s rule that “perfect planning prevents piss-poor performance.” However, I was caught up in the UTI drama and assumed that in the big city, staff at the train station must see mobility scooters all the time. I forgot to follow the requirement of requesting assistance ahead of time to get on and off the train, which you can do via a mobile app. Nevertheless, all was well, and the staff members were accommodating.

Digging the dancing queen

The bridal shower kicked off with a cruise on a party boat down the Thames River. With the loud music, competing conversations, and outdoor heat, it quickly became clear that MS sensory overload would be an issue for me. Luckily, I kept it in check by spending much of my time on the open deck.

Because I’m not as mobile these days as I’d like to be, I make a point of avoiding dancing, which for me means doing little more than what I call the “dad shuffle.” I find that wanting to do more than I can inevitably leads to disappointment. But this time, the bottomless bottles of prosecco, coupled with my mother, grandmother, and aunt all on the dance floor, persuaded me to give it a try. That’s the third rule I broke.

The problem was that we were on a rocking boat, which rendered my walking stick useless. How these tipsy ladies, who were loving life, effortlessly danced the day away in 4-inch heels on a rocking boat is beyond me.

When I finally decided to make my way to the dance floor, something truly beautiful happened: A fellow member of the party took me by the waist and whispered in my ear that she would support me, which allowed me to dance as best I could. I was taken aback by this as I didn’t even know this person. I think that sometimes the drive to be self-sufficient with a disability can make us forget that there are genuinely beautiful people in the world who want to help.

When the dancing finished, we docked, disembarked, and reassembled at a local bar. Because I had only intended to have one drink with the party before returning to my in-laws’ house with my husband, I had packed only one extra pair of incontinence underwear. But the drinks were flowing, the mood was light, and I didn’t want to leave. Yet having no other underwear to change into, I began to say my goodbyes, which is when I broke my fourth rule.

Another lovely lady I hadn’t really spoken to much previously asked me why I was leaving. Without really thinking about it too much, I told her the truth, which is something I usually wouldn’t do with someone I didn’t know. Bladder issues are something I tend to keep close to my chest.

Another unexpected and heartwarming thing happened: Two of the ladies said they were going to buy me more so that I wouldn’t have to leave. I was so moved. Since my RRMS diagnosis, I have never been in a group of people — especially people I didn’t know — and felt so included.

Sometimes the saying “rules are meant to be broken” is bang on the money. Upon reflection, perhaps if we don’t occasionally challenge our rules and boundaries, how else will we grow?

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.