Living with multiple sclerosis (MS) means dealing with flares. Flares occur when symptoms worsen for at least 24 hours. To be considered a flare, it also must occur 30 days or more after the last attack.
We wondered what cues your body gives you about flares. We asked our community on Facebook, “How can you tell that you are experiencing an MS flare?” We got more than 250 responses, so it is clear that there are many ways flares affect you.
The day you receive a multiple sclerosis (MS) diagnosis can feel surreal. It is common to be in denial and want to ignore it. But over time, you start to see that your symptoms match what the doctor explained would happen.
For most people, there is a moment when they cannot deny their symptoms or their diagnosis anymore. And life goes on.
To find out more about what that moment looks like, we turned to the MultipleSclerosis.net Facebook page. We asked the community to fill in the blank: “You know you have MS when _____________.”
More than 250 people in the community responded. Here is what they said.
Continue readingIt may come as a surprise to many people that multiple sclerosis (MS) affects eyesight. But those living with MS know it can compromise parts of their vision, including depth perception.
MS affects the muscles in the body, sometimes including the muscles around the eyes. Having eye muscles that are weak or damaged can lead to complications like dizziness or vertigo. Like MS itself, these visual problems get worse with fatigue and stress.1
To find out more about the issues the MS community faces, we reached out on the MultipleSclerosis.net Facebook page. We asked, “Does patterned flooring or wallpaper ever make you feel unstable or put you into a feeling of vertigo?”
More than 200 people responded. Here is what they shared.
Continue readingLearning how to live with MS takes time. Only through experience can someone learn which things in their environment trigger an MS flare. Many of these triggers can come as a total surprise.
To find out more about your experiences, we reached out on the MultipleSclerosis.net Facebook page and asked the community to fill in the blank: “I was surprised that ______ causes my multiple sclerosis to flare.”
More than 400 people responded. Here is what they shared.
Getting a multiple sclerosis (MS) diagnosis early in life can present unique challenges. Many teachers and principals are still learning how to best help students with MS. Also, young adults may not know how to act with a classmate who faces problems they do not understand. For young people with MS, this can cause a strain on their social life.
To find out more about these challenges, we asked our MultipleSclerosis.net Facebook community members: “Did or do you have MS as a kid, teen, or young adult? What was or is school and social life like?”
More than 150 people responded. Here is some of what they shared.
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Visits to the doctor are part of living with multiple sclerosis (MS). Whether you go routinely or once in a while, it is an ordeal. When you get to the office, you encounter challenges. We wondered what would make the visits better.
To learn more, we turned to community members on the MultipleSclerosis.net Facebook page. There, we asked you to answer this prompt: “Fill in the blank: If I could make the doctor’s office more MS-friendly, I would ____.”
You had some inspired ideas for changes.
Continue readingMultiple sclerosis (MS) is a progressive disease. This means symptoms worsen as time goes on. Thinking about the future can cause anxiety. You worry about what happens in the future.
We recently provided space for sharing those concerns on the MultipleSclerosis.net Facebook page. There, we asked community members to tell us: “What’s your biggest fear about aging with MS?”
More than 600 responses revealed several common threads.
Multiple sclerosis (MS) impacts the body in many ways. Is difficult for those on the outside to understand. There are certain things only other MS warriors fully comprehend. Connecting with others living with MS feels affirming.
To learn more about these unique issues, we turned to the MultipleSclerosis.net Facebook page. We asked community members to complete this prompt: “Fill in the blank: _____ is something that only someone with MS would understand.”
One of you captured it well: “When we say, ‘I don’t feel good,’ this has an entirely different meaning.”
Continue readingAre they for real?! Most multiple sclerosis (MS) commercials feel completely disconnected from your experiences of living with the condition.
We wondered how you would improve them, so we turned to MultipleSclerosis.net and asked community members to get creative! We asked our community to fill in the blank: “If you directed a commercial about MS, it would include ___.”
With more than 300 comments, they had some great ideas!
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There is a shift in the quality of life when managing a chronic condition. That is no different for those who live with multiple sclerosis (MS). There are always new challenges to overcome and new physical limitations to face and fear.
It goes without saying, managing daily life with MS takes a significant mental and physical toll. Activities and simple tasks that once were taken for granted, now take so much energy and strength.
We were curious about the impact chores have on those who live with this impactful condition. To learn more, we turned to the MultipleSclerosis.net Facebook page. We asked community members to tell us: “What household chores or tasks tend to be the hardest due to MS?”
With nearly 900 comments, let’s see what those with MS have to say.
Actions that involve prolonged bending or standing are difficult for you. It is hard to maintain balance when standing. Your body starts aching, and the room starts spinning. This can be frustrating because many tasks involve being upright!
“Yard work. Cannot do bending and standing up.”
“Cleaning the tub! Leaning my head down then standing up makes me dizzy and off-balance.”
“Loading the dishwasher throughout the day and then unloading it.”
“The worst is grocery shopping. Too long on my legs, and they swell, cramp, and go numb.”
MS drains your energy. Trying to complete any chore is exhausting. You need to rest after tasks that once took no time or thought.
“Putting everything away is exhausting, and where I am alone, it just piles up.”
“Vacuuming, so I bought a Roomba. Love it!”
“Sometimes, I don’t have the strength to brush my teeth.”
“Changing the sheets and taking a shower. Both wipe me out.”
Many of you experience flares when you overheat. From the weather, exertion, or standing over a hot stove, heat is a struggle. You find tasks done around heat or that cause you to sweat challenging.
“Any outside work in the summer months.”
“Sweeping and mopping because I get hot.”
“Dishes! I love cleaning, but the hot water has me overheated in seconds.”
“Cooking is hard because any and all heat drains me.”
It is often hard to maintain focus with MS. Brain fog settles in, and you forget what you are doing. Chores requiring mental focus wind up half done or overlooked.
“I do alright with physical chores. It’s the ones that require my brain that get me into trouble!”
“For me, creating and sticking to a meal plan and paying the bills. I have to set up bill pay from the bank as soon as the bill shows up. If I don’t, they are late, and I end up paying fees.”
“I forget where I’m up to with a recipe and adding ingredients, or if I’m making something from memory, I forget what I’m making!”
Muscle weakness and losing coordination result from MS. Tasks requiring motor skills are tough. Navigating steps, lifting, folding, or meal prep require attention and extra time.
“Laundry! Folding is so hard!”
“Getting up on step stools.”
“Peeling potatoes is really hard for me.”
“Climbing steps with laundry baskets.”
“Dusting is the worst. I knock everything over. I’ve broken almost everything breakable in my house.”
Maintaining everyday chores with the limitations that come with MS can be mentally difficult. Please don’t ever hesitate to ask for help if it’s what your body needs. Resting your body and recognizing your limitations is not a sign of weakness – though that’s what society leads you to believe. It’s performing an act of service to your body that holds you up daily.
There is connection in community and we appreciate everyone’s insights. A member affirmed the value of this space and responses to the prompt.
“Thank you to everyone who posts. It makes me feel less crazy when I can see others have the same challenges. It’s so nice for me to be able to say ‘Me too’ and be able to relate.”