Hidden Symptoms of Multiple Sclerosis We Just Don’t Talk About – (which happens to be all of them)

By Susan Russo

I recently visited my local CVS store. As I was in the checkout line, a gentleman and I struck up a conversation. Our discussion eventually led us to the topic of multiple sclerosis. I mentioned to him that I have MS. With a startled and unbelieving expression on his face, he said, “You have MS? No way, you have MS! You aren’t walking around like a drunk person!”

I just stood there with my mouth agape and proceeded to give him my best eye roll possible. (Eye rolls usually prompt a vertigo attack from me, but it was worth the risk). Then he asks me, “Are you sure you have MS?” I was so stunned by this ridiculous comment that I wanted to throw myself onto the floor or slam into a wall, but I politely refrained.

As I finished paying for my items and stepped away from the line, I noticed a woman giving me the, “girlllll….go-get-em-kick-his-butt look” for asking me such a stupid question. Finally, I said, with the utmost respect for his ignorance, “Yes, in fact, I do have MS.”

Believing our conversation had ended, I headed for the store exit. But this guy apparently decided to push the issue and said, “What are some of your symptoms, if you don’t mind me asking?”

Actually, I did mind, completely, but being the really nice person that I am, I said, in the longest run-on sentence I could muster, “I have burning and electric shock sensations, severe dizziness, vertigo, trouble putting my words together, fatigue so bad, I call it my “wet noodle” phase, extreme mood swings including periods of outrageous, uncontrollable laughter and moments of such despair, I think I’m in hell itself. I also have constant ringing in my ears and oh, yeah, I almost forgot, a really strange sensation of hot water being poured inside me, if you can believe it, and don’t even get me started on the incessant itching in my feet!” But hey, at least I’m not stumbling around like a drunk person!

He looked at me like I was absolutely insane, and said “Wow. That’s a lot of weird stuff. I don’t think you should talk about it because people probably won’t believe you.”

Exactly!

At this point, I wanted to smack this guy all the way to China, but, instead, I said, “God Bless you sir and have a nice day”, then, I said, “I will pray for you. You’re gonna need it.”

Here’s the thing. So many of us with MS don’t want to talk about it. Especially those really weird, unexplained sensations. Because, like the gentleman in the CVS store, people simply do not believe you. And sometimes, that even includes our own medical professionals.

I once told my doctor I could feel electric shocks in my legs along with a “biting foil” sensation. He said, “Well, I don’t know what that is, but I don’t think it’s a symptom of MS.”

Here’s the deal. Some of the most not-talked-about effects of MS are the worst and most difficult to handle, especially if our “truth” is not validated.

We want someone to just listen; to really hear what we are experiencing and acknowledge it’s existence.

When we are denied our “truth”, this says to me that my disease is not real. Well, I’m here to tell you, my MS and it’s plethora of ongoing reality is real. Period. End of story.

So, to that I say, talk about your unseen silent symptoms of MS. Share them with those who love and care about you. They will listen. They will believe.

And if they don’t, just do what I do. Roll your eyes in the back of your head, wave your hand, put a little “sass” in your step and say, “WHaaaatttt-Evvvvvr!”

Then, quietly walk away and pray you didn’t just set off a major episode of vertigo.

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Cognitive Changes

This month we’ve been talking about MS symptoms that aren’t spoken about or mentioned as often as other symptoms within the MS community. Some of the symptoms highlighted so far have been issues with incontinence and bowel and bladder challenges. On the My MSAA Community peer-to-peer forum, we recently asked a poll question about which commonly overlooked MS symptoms individuals would like to learn more about, and one of the results has been cognition. Though many individuals are experiencing this issue, it’s still not one discussed very often, and it’s hard not to wonder why.

With the multitude of research that has been – and continues to be – done on MS, issues with cognition are still questioned and sometimes aren’t even associated with the disease itself. Individuals often ask if MS can affect their cognition and thinking when they notice certain changes, and the answer is unfortunately yes – this, too, is another area that MS can influence. If parts of the brain that control judgement, memory, thinking, and reason are affected by MS disease activity and inflammation, then symptoms can manifest and cognitive changes can occur. Sometimes individuals do not know that cognitive changes can be a symptom of MS and they ask if there is something else going on, or is it due to getting older/the aging process itself, or stress, etc. Bringing this and other types of symptoms that aren’t discussed as frequently to the forefront will help increase awareness of them being related to MS, and in turn, start conversations on how to address them.

There are several types of feelings that can be provoked by cognition changes due to MS, and embarrassment is a feeling that oftentimes accompanies this symptom. Individuals can feel self-conscious and uncomfortable if they’re experiencing issues with their memory and thinking—especially when interacting with others or trying to fulfill work or relationship roles. Shame and guilt can be other feelings associated with cognitive difficulties too. People feel they should still be able to do certain things and not have to ask for help or admit they can’t do what they once did. It’s very common for these types of feelings to emerge when it comes to such an impactful symptom that can effect day to day situations so easily. But knowing that you don’t have to feel ashamed or guilty if it does occur is key – and so is knowing that you can talk about it with others who are supportive and can identify with you, as you are not alone in this symptom issue.

MS sets out to be a thief not only of physical body functions, but also of mind operation as well, and it’s to no fault of those affected. It’s important to recognize if you are experiencing cognitive changes or challenges, and to bring it to a healthcare professional’s attention so you can work together to try and address it. MS may have its own agenda, but you can show your power with proactive steps in symptom management and self-care and awareness.

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There’s an Earthquake Happening Inside My Body

By Penelope Conway

When someone mentions multiple sclerosis, a lot of people immediately think of numb body parts, walking difficulties and fatigue. Those symptoms are fairly well known, but there is so much more to this disease and so many more struggles that we endure daily – sometimes silently – that should be talked about and shared.

To me, multiple sclerosis feels like an earthquake went off inside my body and different body parts are experiencing continual aftershocks.

I remember one day when I was sitting on my couch typing out an email to a friend and my right hand began shaking uncontrollably. It was weird and scary all at the same time. I literally had no control over it. It seemed to be flopping about like a fish out of water.

I sat there staring at it thinking “Okay, you can stop now.” After some time it finally subsided a bit but still goes on these crazy binges from time to time that I have no control over. I have a weighted wristband that helps contain the tremors but even wearing that doesn’t stop them entirely. There’s always a slight shakiness going on.

Because of multiple sclerosis my body has been known to jerk and twitch without being provoked, I’ve thrown things across the room unintentionally, and once I even kicked someone…although that one could have been on purpose. I’ll never tell.

I also have this weird thing with my ears. They ring constantly and there’s a repetitive flutter happening in my right one like when water gets trapped in your ears while swimming and it’s trying to work its way out. Someone could be talking to me and instead of listening to them, I’m thinking “stop ringing, stop fluttering, just STOP!”

There are times when I may want my legs to move and they won’t, or need a hand to function and it rebels, but when sensation is out of whack too…that’s an entirely different level of weird. I have two fingers on my left hand that feel like ice all day long even in the heat of summer. I also have this strange feeling of water dripping down my cheek from time to time. I know it’s not real but I find myself constantly checking just in case.

Then there’s this strange feeling I have of bugs crawling across my skin and an incessant itching feeling in my arms that won’t stop with scratching, rubbing or creams…all happening inside my body where no one can see.

It kind of becomes like that old saying “If a tree falls in a forest and no one is around to hear it, does it make a sound?” Well, I can tell you for a fact that if the nerves in your body break and no one can see the damage, they really do make you do weird things.

Don’t let your body’s craziness drive you crazy in the process. It’s hard dealing with an out of control body. Sometimes you want to scream at it and at your entire life…”Stop! Just STOP!” But life goes on and nothing ever seems to stop. Know that you aren’t alone. There are others of us who understand and face this unseen monster too in some very weird and strange ways.

Normal is no longer what it used to be.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Mel’s Ice Cream Sandwich Cake

Do you love ice cream?  I do!!!

I am always looking at easy ways to impress my family with quick and delicious desserts in the summer.  This one is always a crowd winner.   Here is a simple summer dessert using ice cream sandwiches!  You can use your favorite  ice cream sandwich flavor and customize toppings too.

Ingredients

  • 1 12oz container of whipped topping
  • 1 jar of caramel topping
  • 1 jar hot fudge sauce
  • 1 package of ice cream sandwiches (box of 12)
  • Sprinkles or favorite topping

Directions

Unwrap the ice-cream sandwiches and lay them into a casserole dish or a 9×13 baking dish.  You may have to cut some of the sandwiches to fit your size dish.

Heat the hot fudge sauce in the microwave and pour over ice cream sandwiches.

Pour caramel sauce over the hot fudge sauce.

Add whipped topping on top of caramel sauce. Use a spatula to spread it evenly.

Top it with sprinkles or anything you like on ice cream (Cookie pieces, chocolate chips, pretzels or candy).

Put into the freezer for at least 1-2 hours before serving.

Cut and serve!

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B & B

By Doug Ankerman

Let’s be frank.  You have MS.  I have MS.  So we have that in common.

It also means we may have similar problems when it comes to B & B.  No, not bed & breakfast.  B & B as in bowel & bladder.

Yeah it’s not enough that MS throws a wrench in the works with our gait, balance, vision, emotions, memory, dexterity and much more – but it also takes a swing below the belt with potty stuff, namely lightning-fast urgency to go and crushing constipation.

But after over 20 years of shared bliss with multiple sclerosis, I’m used to it.  In fact, the bowel and bladder have become such an influential part of my life, I carry their picture in my wallet.

Every day my bowel & bladder taunt me, tease me and pick on me like two older brothers raze the youngest sibling.  So I must stay close to the little boy’s room.  At times it’s like being tethered to the toilet.  I feel like an astronaut on a spacewalk, only getting so far away from the ship.  Or the bathroom in my case.

As a result, I believe my bladder has some type of built-in sensor, like a urological GPS unit.

It knows the location of every restroom near and far.  And like a dog, I must leave my mark in every one.

Another element of MS you probably already know…is the closer you get to the bathroom – the more urgent you have to go.  Sometimes my urge is so strong I begin the whole “unsnapping, unbuckling and unzipping” process before I get the door closed.

And be warned as the “festivities of going” usually begin as soon as your foot crosses the threshold of the bathroom.  The bladder figures “Hey, I’m in the war zone, might as well fire the first shot!”

I could go on why we MSer’s are so consumed with our “B & B’s”, but what’s the point.

We really aren’t that fond of these vital organs, they simply control our every movement…Strike that (Poor word choice)…MSers must keep close tabs of every nuance of our faculties.

Just add it to everything else we have to be aware of, right?

Keep fighting.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

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Umm, I Have a Question…

All this month we’re highlighting some of the least talked about symptoms associated with MS. Some of which can also be some of the most embarrassing symptoms to arise from an MS diagnosis. While there is a lot of territory to cover, one of the things that remains the same is that it’s often difficult to discuss these symptoms with friends, family, or even a heath care professional. It’s one thing to mention to your doctor that you are feeling dizzy or having difficulty with heat, but it’s a far different thing to mention that you are having concern over loose bowels or sexual desensitization. While not easy conversations to have, here are some tips and hopefully helpful tactics to use when you have to bring up some of the lesser talked about concerns you may be experiencing.

  • Use Your Own Words: Too often we try and get technical or complex in our explanations of medical concerns. But explain the problem to your physician or medical team in words you understand and using language that allows you to explain what is going on.
  • Be Honest: It’s habit that when someone asks how we’re doing we’re almost totally conditioned to say “Fine, I’m Fine.” But leaving out details or not wanting to burden your physician during a visit could spell out trouble for you down the line. Be honest about what has changed or is new with you when you speak with your physician or medical team and let them know what’s going on.
  • Don’t Miss Appointments: I know this one can be difficult depending on your situation. But making your doctor’s appointments with some regularity gives you an opportunity to be more comfortable with them and for them to get to know and build a rapport with you. Missing appointments too often leaves gaps in your chart and care that might make spotting or explaining unusual symptoms or embarrassing concerns more difficult to confront
  • Keep Records: There are lots of things we document – when our car needs an oil change, when our kids have soccer games, that meal we had last night on Instagram. We document everything from what we buy, to what we think, and everything in between. Make this apply to your health also. Document changes you notice, feel, experience and any information you can attach to it. This may seem a bit much but when you need to recall how long the mouth dryness lasted or your vision was tunneled you will be glad you kept good records. Having a tracker like the My MS Manager app can help you keep all your notes in one place and have them to refer to when you talk with your physician
  • Know That You Aren’t The Only One: We often don’t want to discuss embarrassing or strange things that occur to us or we experience as part of our health, for worry that we’re the only one having this problem. Even if it is a rare side effect or symptom, the odds are you are not the only person who is experiencing it. Put your mind at ease and know that of the hundreds of thousands of others living with a diagnosis, the chances you are the only one are pretty slim.

There are a bevy or symptoms that are less experienced than the more well-known ones, but that doesn’t mean you shouldn’t discuss or get answers for them. Knowing who to ask your questions of is another good point to remember (we’ll call this a bonus one). Deciding to have medical conversations with a medical professional or asking mental health related questions of a therapist or counselor give you the best chance of getting some answers. Yes, your neighbor or relative may be able to answer them for you, but making sure to connect with the right people is key to addressing many of the concerns you may have.

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Who Wants to Know?

By Lauren Kovacs

MS has so many symptoms that it is hard to pick one that is talked about the least.  I will pick the most embarrassing, potty issues.  Admit it, no one touches this with a 49 1/2 foot pole.

Doing “the pee pee dance” is not often brought up.  Most moms can pick out a kid doing it though.  Dancing is not usually an MS thing either.  A pee pee wiggle or shift is all many of us can do.

One minute you are fine and the next minute the dam is about to blow.  Not much warning is how most of us roll.  Ladies after your period, I know you are draining off that bloat.

Your skinny jeans don’t fit because of the bloat.  Skinny jeans are hard to peel off quickly when you got to go, NOW!  You can’t wear them any way.  Leggings are a nice alternative.

I was never a fashion plate.  Being trapped in girls sizes never allowed for much sexy  dressing.  Being tiny does, in fact, carry some serious disadvantages.  Getting things tailored is not exactly practical for me.

Now, I am looking to replace my cute zipper/button shorts with the pull-on style. Easy off when I really got to go.  Plus, pulling them down or up, with one hand while using the grab bar for stability with the other is easier.

While athletic shorts are not super flattering, they give me a fast pass to board the potty. Bikers shorts underneath then help keep an incontinent pad in place.  That is a mental crutch for me.  It is there just in case.  I only employ that strategy on long trips. I worry about peeing myself a lot.

Now I stop to tinkle at every place possible.  It drives my husband and sons batty.  My young iron bladder was replaced long ago by pregnancies and age.  Then throw the MS into the mix.  Bad combo.  Kind of like when my son dips watermelon in ranch dressing.   The combo is never good.

On a trip to Canada a few years ago, I used the potty every chance I got.  My husband joked that I peed my way through Toronto.  Maybe, but I felt secure in my bladder.  I never worried about the dam breaking.

I can’t think of potty accidents as being no big deal or just an MS thing.  It can be crippling to plan around and deal with.  The worry and fear of potty accidents are very scary monsters. They are very real monsters for MS folks.

I always make sure my bowels are clear, before I leave the house too.  I get up and begin my day, before everyone else.  This gives them the signal that they need to be clear.  Gross, but still an unspoken MS thing.

I carry extra pants/shorts in my purse.  I roll them and secure with hair ties. Guys may have to carry a man bag.  Sorry dudes.  Some things you can’t stuff in your pockets.

I went from a diaper bag with stuff for the kids/babies to a large purse.  The kids are older now, but tissues, sunscreen, Purell, Advil, Band-Aids, cough drops, and the like are always needed.  In a way it is the family bag.  Someone always needs something and my purse has it.

Prepare for the worst. One thing I learned from my sons in Boy Scout is to always be prepared.  My purse is heavy, but someone is always digging through it.  They make fun of its weight, yet my purse is essential to the entire family.

Worrying about potty issues will not rain on my parade.  If the storm comes, I am prepared.  Make room for worries like fatigue and heat and not potty issues.  Try and live the wee bits of life that you can.

Trying is all we can do.  Ask a fellow MSer what they do about potty issues. (Go for someone of your same sex.  Plumbing matters).  Chances are that most will be happy to share.  It is mortifying when you have an accident.  Have a plan in mind. I am the typical “worst case scenario” lady, but at least I try to be prepared.

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Dealing With Embarrassing Symptoms: Constipation

By Stacie Prada

When MSAA asked if I wanted to contribute something for their theme this month I knew I had a lot to say, but I was uneasy being frank about a topic that would be on the internet for anyone to judge. It was exactly that reason why I didn’t play it safe and just talk about embarrassing symptoms generally.  Because I felt a bit of fear sharing my experiences with constipation, I decided it was the perfect one for me to discuss.  Courage gathered and challenge accepted. So here goes…

There’s no glamour in being good at living with a chronic illness, but there is dignity in exhibiting confidence and acceptance of the reality of living with an incurable health condition. Aging gracefully is met with admiration, and I maintain that living confidently and openly with an illness is worth undertaking.  People living with an illness deserve to live a life without shame or feelings of inadequacy for circumstances beyond their control.

Constipation is a common multiple sclerosis symptom. It’s embarrassing, and it’s an uncomfortable topic to discuss.  Try to get over the embarrassment of bowel problems.  If the doctor doesn’t have previous experience with an embarrassing issue, it won’t be the last time.  You may be teaching the doctor something that will be useful for the next patient.

People that have helped me with different aspects of MS constipation over the years have been my Primary Care Physician, Neurologist, Physical Therapist, Urologist, Naturopath, yoga instructor, people in my MS Self Help Group, and close friends who have had their own experiences or been caretakers for their parents.

The MS Self Help group I’m in doesn’t ever respond, “T.M.I.,” or shut down a conversation when they’re uncomfortable. They may get quiet and let others speak, but I’ve never seen someone tell a person the topic isn’t appropriate. Meetings are a perfect resource and safe environment for sharing our specific problems and learning what other people do.

People are trying to be helpful when they diagnose your problem.  They’re sharing what worked for them in the past, and they’re excited that they might be able to help you. With constipation though, it’s necessary to look at the consistency of your poop before deciding how to fix it.  Most treatments assume you’re constipated because medications are hardening your stool or you’re not getting enough fiber or fluids in your diet. Sometimes those suggestions can help alleviate constipation. But with MS, that may not be the cause or remedy.

Sometimes the problem isn’t the consistency of stool; it’s that the poop should be able to move but won’t. Your fiber intake and hydration level can be perfect and your poop can be the perfect consistency, but the inner and outer anal sphincters may not be operating on command.  The problem can be that the nerve messages flowing from the brain to the anus aren’t getting there to let a bowel movement happen naturally.  It can also be that spasticity is refusing to let the muscles relax. If poop is the right consistency, then more fiber doesn’t help with this.  With laxatives, you can get the poop to a diarrhea like consistency to alleviate unsatisfying bowel movements.  While it’s a relief to empty the colon, it’s a roller coaster approach to dealing with constipation.

Pooping regularly and easily requires the perfect combination of good stool consistency and the anal sphincters functioning correctly. When the poop is good but MS lesions are blocking nerve messages or spasticity is wreaking havoc, there are a number of things that can help:

  • Self-diagnosis: Learn how to detect the root issue causing constipation. Is it stool consistency, malfunctioning nerve messages or something else?
  • Schedule: Allow time for coffee, tea, or medications to take effect before you need to be somewhere.  It may require getting up earlier and taking more time in the morning.
  • Movement: Stretch, twist, and move the mid-section to shake up the system to help induce a bowel movement. Exercising on a stationary bike, elliptical, or treadmill is good since you’re likely to be close to a bathroom when you feel you need to go.
  • Self-massage: Look on the internet for “self massage for constipation.” There are a lot of videos and suggestions for how to massage the abdomen to induce a bowel movement.
  • Breathing: Look on the internet for “breathing exercises for pooping.” Focusing on breathing and moving the belly can help focus attention away from the sphincter, relax the rest of the body, and trigger the involuntary muscles that can help a bowel movement.
  • Gut health: Probiotics and prebiotics can help maintain regularity, and they come in a variety of forms from pills and liquid supplements to fermented foods and yogurt.
  • Bowel training:  Learn what each muscle in the pelvic region feels like when it’s tightened and when it’s relaxed in order to better control them. Kegels can increase the strength of the muscles and the ability to control them. Biofeedback with a trained professional can help with learning how to better control the external anal sphincter.  The internal sphincter isn’t under voluntary control, but learning to relax the muscles in the area can help with bowel movements.
  • Pooping position: Make sure to sit in a position that isn’t making it harder for the body to have a bowel movement. A foot stool like a Squatty Potty creates a squatting position while sitting on a toilet so that the colon is straight and not kinked.
  • Supplements: Senna and magnesium are among the many, many laxatives available in pill, liquid, and tea form available to soften stool if needed.
  • Enemas & Suppositories: Saline enemas and glycerin suppositories can be effective for emptying the bowels when constipation lasts too long and immediate action is needed.
  • Botox injections and muscle relaxing medications are treatments that can help neutralize the effects of spasticity which is another common MS symptom that can lead to constipation.

The body is an engineering marvel, and when it works well it seems super simple.  When things stop working as well, it takes a lot of self-discovery and research to figure out what’s going on. Embarrassing symptoms are frustrating, because they drastically increase the discomfort quotient and reduce the options for gathering treatment options.

Learning to overcome feelings of embarrassment will go a long way to diagnosing and finding treatments for symptoms.  Be courageous.  Be confident in your duty to advocate for your well-being.  Be a good example and resource for others who may need to find their own courage to do this someday.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with multiple sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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June 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2017-18 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Susan Russo – Pearland, TX
Love Unconditional
Susan Russo - Love Unconditional

About the Artist:
“I was diagnosed with RRMS in 2001. This disease has changed my life in an amazing way. Funny how diseases tend to do just that. You either give up or battle on. I choose to battle on.

I’m not perfect. I have rough days. I cry. I get angry. But then, I pick up a paint brush and I start to create whatever I am feeling. I get lost in a beautiful world of lines and shades and colors. The creation of something visually beautiful helps me to refocus on the fact that I am so much more than my MS.”
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What do you want people to know about MS?

Living with a chronic condition like MS can be very difficult and frustrating.  Explaining to others what it’s like to endure life with MS can be even more frustrating.  Our community members have shared with us what they wish others knew and understood about MS.

Of the many symptoms that trouble those with MS, one of the most common that is misunderstood is fatigue.  MS-related fatigue is hard to understand, yet it is so important for family, friends and caregivers to comprehend.  All of us have experienced fatigue at one point or another, but MS-related fatigue is like no other.  MS fatigue is significantly different than fatigue experienced by those without MS and it is important to recognize the differences.

“MS related fatigue is not the same as being tired.”
“MS fatigue is not caused by losing out on sleep.”
“MS is exhausting and can cause extreme fatigue and horrific pain.”

MS fatigue is present no matter what. The simplest of tasks become incredibly difficult, and it takes so much energy to do things that others take for granted.

“Simple tasks like taking a drink or going to the bathroom are unbelievable difficult.”
“No amount of sleep or rest will help my fatigue.”
“It’s not like you are too exhausted to do something, it’s that you are too exhausted to do anything.”
“I’m not lazy, I just hurt and need to rest.”

Although fatigue is one of those invisible symptoms, it can significantly interfere with a person’s ability to function at home and work.  Our community members dealing with MS want others to know that fatigue is a real issue and it affects their daily life immensely.  MS-related fatigue can cause cognitive impairment, clumsiness, and poor balance.

“Fatigue is something I encounter at some point every day of my life.”
“My fatigue occurs on a daily basis.”
“Fatigue can come on suddenly, which means I have to cancel plans on short notice.”
“My fatigue comes on easily and suddenly and can worsen as the day progresses.”

Our community members shared with us that along with their fatigue, comes stress, anxiety and depression. The frustration can bring on anger and impatience.  It is so important for family and friends to understand where this is coming from.

“Pain makes tolerance hard.”
“I get so frustrated with myself and I get angry with others.”
“I have less patience for people and things.”
“I never used to be short on patience, but in recent years, my fuse has gotten very short.”
“At times, my anger can rise more quickly and there are fewer filters.”
“I snap at everyone but don’t mean to.”

Our community members also wanted others to know the true “invisibility” of MS.

“I may look fine on the outside, but I feel terrible on the inside.”
“MS makes you appear normal on the outside, but wreaks havoc on the inside.”
“Others can’t necessarily see our limits, as we see and feel them.”

It is also important for our family, friends and caregivers to know that MS is a constant battle.

“It’s on my mind always, even when I feel well.”
“MS is something you think about every day.”
“It’s unbelievably hard to live with-mentally, physically and emotionally.”
“This is not something I chose.”

Finally, our MS community members wanted others know that life is not easy and every day can be a different challenge!

“It’s a roller coaster…you have ups and you have downs, twists and turns, except it’s never fun.”
“No two people progress the same.”
“It can knock you off your feet at any time.”

One common theme that came up frequently from our community, and stands on it’s own as a constant reminder:

“It’s out of my control.”

 Educating the people in your life, though often challenging, can help you receive the empathy and understanding you so deserve.

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