Tipping the Scale: When Today’s Choices Become Tomorrow’s Consequences

Beth Ullah avatar

by Beth Ullah |

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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 since starting Lemtrada (alemtuzumab) treatment in 2018. Of course, I still have MS flare-ups — sometimes daily, sometimes less frequently.

If I’m having a good day physically, my baseline involves using a scooter to go out or into town alone. It’s strange now to need my wheelchair. But on bad days, you won’t see me at all because I can’t leave the house.

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My baseline for more invisible symptoms, such as sensory issues and fatigue, is less predictable. I usually have some level of numbness from my chest to my feet, but I’ll experience sensations on a sliding scale between numbness and hypersensitivity. This may include feelings of burning, pins and needles, running water, and pain.

Fatigue is another given. For instance, despite my best intentions and medication, I was unable to write this column when I sat down to do it yesterday. Sometimes there is a trigger, but not always. This time, I can’t identify one. A fatigue trigger could be something as elusive as a long, deep conversation with an old friend several days earlier, or an issue that’s been causing me to overthink and worry.

My physical baseline, however, often resets overnight. If I’ve done too much, such as vacuuming, cleaning, or anything that renders me unable to walk in the evening, I’ll usually be back to my baseline by the next morning. But my tolerance for physical activities is low, and I don’t get much warning before reaching my limit. When I don’t see it coming, it’s like the opposite of a jack-in-the-box: One minute I’m cooking, and the next I’ve crumpled to my feet.

My tolerance has definitely improved since MS stormed into my life and left me paralyzed. Now I rarely let myself reach that point of tipping the scale over. It’s part of the reason my scooter has been revolutionary for me.

I struggle when there’s a lot of activity packed into a short time, such as when my husband and I visit family or friends or have people stay at our home. I often forget how tiring simply talking is. Coupled with the fact that I’m an introvert, I need my fair share of alone time to reset.

Big gatherings are also difficult to navigate. I’ll often be found seeking solace in a quiet corner rather than participating in the hubbub.

I tend to go off alone for a bit of respite from gatherings. If I don’t, I’ll find myself teetering on the edge of sensory overload, and that’s not a fun place to be.

People often ask me why I attend parties, see friends, or go out when I know it will have an impact on the following days. Simply put, if I didn’t shoulder the consequences of these things, I’d never do anything or go anywhere. And that’s a life I wouldn’t want to live.


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.

Comments

Leanne Broughton avatar

Leanne Broughton

I am now secondary progressive MS. I am somewhat an introvert, accentuated by the pandemic. I am just coming out of my shell. I am an only child, now 62 yrs old, so being alone has never been a problem. My husband and I are considering a cruise to Alaska with my 40th reunion from nursing school. By responses there will probably be about 30-40 people. I am thinking of getting a scooter to get around. Still concerned about Covid 19 though we are vaccinated. I was on Ocrevus until 2020 so am worried of my poor response to vaccinations. On the otherhand it is about the quality of life.

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Beth Ullah avatar

Beth Ullah

Hi Leanne,
I am meaning to do a column about covid-19 specifically, my reintegration into day to day life after isolating for 18 months pre covid, which was necessary, despite my introverted-ness. You're so much more in control in a scooter than you are in a wheelchair. You can move away from people and it offers a wider 'personal space' boundary too. It took me a few years to accept that it was a better alternative to my wheelchair, for several reasons.

And for what it's worth, my ethos of late has been 'there's no point living, if you're hiding away'. Well within individual guidelines, of course. Our immunities are very different and only you can know what you can handle. I'm just saying, don't let it hold you back. Also, you could look into hiring a scooter first if you aren't sure about it long term. Or even just for the cruise.
Good luck and I hope you get to enjoy your cruise as much as you should.
Beth

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