Powering through those ‘it’s the MS’ days with humor and support

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by BioNews Staff |

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Five photos showing individuals with multiple sclerosis, who are sharing their real-life stories during MS Awareness Month, are hung with clips on a string above the words 'MS Community Spotlight.'
Alexis Mendiola being given a  first Ocrevus infusion in March 2023. (Photos courtesy of Alexis Mendiola.)

Alexis Mendiola is shown during a treatment infusion in March 2023. (Photos courtesy of Alexis Mendiola)

Day 2 of 31

This is Alexis Mendiola’s story:

March 2021 will forever be bittersweet to me. Though my heart sank when my neurologist said those words we all hate to hear, I decided right then to never again take anything for granted or let the little things get to me.

Alexis poses with her husband, Emmanuel.

Diet, exercise, and daily reminders that I can walk, cook, bathe myself, and do the “normal” things we all take for granted are now my priorities. The days when I cannot are the ones that remind me that I’m not in complete control of my body. But with a supportive family and friends or family members who also have multiple sclerosis, I can power through.

It’s never easy asking for help, especially as an independent person who wants her children to be independent as well. My husband is my crutch on my worst days. His love for me has never wavered in the 19 years I’ve known him. Getting my walker, putting me in the wheelchair until my MS symptoms subside, or helping me get to the toilet or bed shows me he is not afraid of my vulnerabilities or of what my disease means for us. On these days, I get angry at MS. I allow myself to sit with these feelings, then move on.

I’ve always felt that a sense of humor is necessary in life, and even more so since my MS diagnosis. When I drop a dish, forget a word, trip, or fall, I laugh and say, “It’s the MS.” My neurologist approved me for a handicap placard, which is also very humbling. But now, my husband and I joke that we get to park closer to places. I’ve even joked: “It pays to have MS.”

After my first ever steroid infusion to reduce flare-up symptoms March 2021

Mendiola sporting a mask in March 2021 after a first steroid infusion for an MS flare.

“How are you doing?” is a repeat question, with an ever-changing answer. Today, I am well. I can clean the house and play with the kids on the floor. Yesterday, I was barely able to stay awake, and could not walk to the toilet by myself. Tomorrow, who knows? I do exactly what I can when I can. I need to be present for my children, prioritizing rest, not my house.

I think about all the people in support groups, including the one I started, my friends, and others with MS who struggle mentally with the guilt and sadness of what they should be able to do. Life is the unexpected. I am a better person for having MS, as I now appreciate even the smallest things in life.

In recognition of Multiple Sclerosis Awareness Month in March, the MS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, and Pinterest for more stories like this, using the hashtag #MSSpotlight, or read the full series.