So she says she’s learned little hacks to help her feel a bit more comfortable when she’s out and about. “Often one of the first things I do when I arrive at an event, party, or gathering, is find the seats,” she says. “That way, if I start feeling tired, I know right where to go and can buy myself more time at the gathering.”
“I space things out.”
Verena Frydberg, 43, breaks things up to make them feel a bit less taxing. “I schedule rest periods between my activities,” she tells SELF. “For example, if I’m going to cook, I get my groceries delivered. I choose ingredients that are already prepped, like chopped onions and chicken that’s pounded thin or cut a certain way. This helps me minimize my time in the kitchen.”
Frydberg also gets ready differently than she would have in the past. That means showering the night before and even resting pre-event in the outfit she plans to wear since getting dressed can be a tiring task for her.
“I learned this about myself years ago,” Frydberg says. “I would spend all day prepping to entertain and leave getting myself ready to the end when I was too exhausted. Then I’d feel uncomfortable about how I looked the whole time we had guests. This was not good in my book, so I figured out how to switch it up.”
“I’m incredibly honest.”
Landis says she’s very open with loved ones about how she’s feeling. “I’ll say to them, ‘This is what triggers me, and sometimes I don’t know why I’m not feeling well,’” she says. “I’ll be incredibly honest and say, ‘If I cancel on you, it’s not that I don’t love you.’”
But she’s still careful not to use MS as a reason to just cancel on people. “I don’t want to use my MS as an excuse or a crutch,” she says.
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Martin says she’s also learned to be open about what she’s going through—and to learn the power of the word no. “I used to hide my symptoms and try to pretend that I was fine and just endure,” she says. “But I always ended up paying for it later and probably missed out on more because of it.” Now, she says no when she’s really not feeling up for something, which allows her to show up fully at other times.
“I stay home when I really need to.”
Elizabeth Giardina, 45, tells SELF that she also really struggles with fatigue when she has MS flares. “It is almost like everything is heavier and more [tiring], so walking feels like more of an effort,” she explains. “I also have a hard time with cognitive abilities. It sometimes feels like I am running in circles because my brain has a hard time focusing on completing what it set out to do.”
Stress typically leads to flares for her, so she’s learned to take a step back during the holidays. She used to feel like she “had to do everything” during this season. “I live a bit further than most of my family so I would often be cooking huge meals and then transporting them to another family member’s home,” Giardina explains. “It got to the point where I realized I was just taking on too much.” Now she gives herself some wiggle room. “I still cook but try to take at least a few of the days around the holidays to stay home. It is too hard on my body to be doing the cooking and the traveling.”
“I put myself first.”
It can be hard, but Landis says that “putting yourself first is the most important thing” when it comes to getting through the holidays as someone who lives with MS. “At the end of the day, it’s your body that’s going to have to deal with the consequences,” she says. She recommends picking up the phone and calling someone if you need to skip a gathering, so you can have a verbal conversation. “If they don’t understand, then they weren’t really a good person in your life anyway,” she says.
Michelle Tolson, 49, also believes in the power of being firm with your boundaries. “There are times that I push through the fatigue and there are times that I know I can’t do it,” she tells SELF. “I am always honest with my friends about how I am feeling. Having a solid support system is so important when living with a silent and progressive disease like MS.”
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Source: SELF
