Learning 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.”
Sometimes, explaining multiple sclerosis (MS) to people who are unfamiliar with the condition is frustrating. The clinical definition does not fully capture the reality.
The trend “Tell us without telling us,” or “tell me without telling me” asks people to share how they match a set of criteria or are part of a group without explicitly stating it. This trend allows people to make pointed statements that play with stereotypes, define characteristics, and share inside jokes – that includes those living with multiple sclerosis.
When we recently asked community members on the MultipleSclerosis.net Facebook page: “Tell us you have MS without saying you have MS,” the responses were amazing. This prompt struck a chord. With more than 1,000 responses, the creativity of the community certainly presented itself!
Falling is a way of life with MS. Your balance and spatial awareness become compromised. You can trip over the slightest thing or nothing at all!
Living with MS causes your brain to feel muddled. You forget words. You say the wrong word in place of what you want. Dates, tasks, names, or passwords that you have known forever suddenly vanish from your memory.
“Exhaustion” does not begin to cover the depth of fatigue MS brings to your life. Formerly simple tasks wear you out for hours, if not the entire day. You find yourself needing lots of rest.
With MS, you run warm. You feel hot and sweaty when others are cold. Hot weather makes the symptoms worse. Trying to keep your body temperature comfortable requires much effort.
Most people living with MS are familiar with the MS hug. It feels like a tight squeeze around your chest. It comes on out of nowhere and is extremely painful.
The regular need for the toilet is part of your life with MS. You experience incontinence. Leaving home requires forethought and planning around your bathroom needs.
Living with MS means frequent MRIs to monitor lesions. Comfortable or uncomfortable, the tube becomes familiar. Your image results look dramatic.
While all of this is a comical and light approach to what life with multiple sclerosis can entail, we know there is so much more. We’d like to thank those with MS for sharing wonderful insights into life with a chronic condition. We appreciate the honesty and such willingness to share.
Living with multiple sclerosis (MS) means you are all too familiar with magnetic resonance imaging (MRI) tests. Some people dread getting an MRI, while others are not fazed by the procedure.
With more than 1,500 responses to the MultipleSclerosis.net Facebook prompt, “Do you ever fall asleep when getting your MRI?” there were folks in each camp! There were straight “yes” or “no” answers, while many of you shared why or how you could or could not sleep through an MRI.
Here we share some of your insightful comments!
One thing about MRI machines is they are loud. Whirring, grinding, banging – there are many words to describe the sound. Some of you find the noise soothing. You go to sleep with the MRI functioning as white noise. Others find the noise too loud to tune out. It is jarring and keeps you awake throughout the entire procedure.
For those of you who sleep, you sleep hard! A few community members said updates from the tech wake you. Some of you said that the tech has to intentionally wake you since your sleep rhythm disturbs the imaging.
Several of you mentioned enjoying MRIs as the time is all about you. Nothing is allowed in the room with you, which means the time is entirely your own.
The MRI tube is very narrow. For those who are claustrophobic, MRIs can be challenging. Many community members shared that they need a drug to help relax during the procedure. You mentioned several drugs that help you get through the process.
MRIs typically require you to lay still on your back for a long time. Several of you mentioned struggling with the process. The MRI is uncomfortable, and being on your back is painful.
Many also shared using meditation as a calming technique. For some, that leads to sleep! For others, it keeps you focused and calm through the MRI.
We appreciate all the ways you engaged with this prompt! MRIs are part of life with multiple sclerosis (MS). Sharing how you handle the process helps everyone feel less alone.
Life with multiple sclerosis (MS) requires lots of preparation and thought. There is much you need to successfully navigate each day.
We wondered what items, real or imaginary, help get you through a day. We asked community members on our Facebook page to tell us: “If you could create an everyday MS bag (think Mary Poppins pulling a lamp out of her purse kind of bag) that held everything you would need to be prepared for your day, what would be in it?”
You had some “practically perfect” responses!
Managing MS means keeping prescriptions and over-the-counter drugs with you. Flares and pain can arise at any time. You feel like a portable pharmacy.
Temperature regulation can be challenging with MS. Many of you frequently overheat and sweat profusely. You would pull items to help you stay cool out of your magic carpetbag. While more of you need cooling items, some of you need items to keep you warm!
Often people in your life do not understand the nature of MS. It is wearying having to explain the disease over and over. Several of you wished for the ability never to explain this disease again.
Comfort items were high on your list of things to pull out of your bag. These items help you feel supported navigating life with MS. Flares with MS are miserable. These items soothe both mind and body.
Many of you enjoyed using Mary Poppins’ magic in filling your MS bag! It is fun to dream big about what you could pull out of a bag when there are no rules. Your creativity and imagination are impressive!
We appreciate all the responses you provided to this prompt! From the serious to the silly, we enjoyed hearing what you would pull out of a magical MS bag. Thank you all for participating and being part of the community.