Has Your MS Caused You to Embrace the Hermit-Life?

“I make plans, I cancel plans, all in the name of MS.”

“Friends just don’t understand, I’d rather just stay home.”  

MS can be overwhelming in so many ways that most others can’t understand or relate to.  Many individuals with MS find it can be exhausting and tiring to get out and socialize.  The constant forgoing of plans, canceling on activities that you may have looked forward to for weeks because of a flare-up, or the feelings of exhaustion and frustration that come along with your daily MS battles may push you more and more towards a hermit-like life. We recently shared an article with our community from our advocate, Laura, called Has MS Made You a Hermit? The response from our community members was amazing. Here are some highlights from what they said.

“I tend to push people away that want to help, forgetting this is new territory for them too.”

“Regarding help and independence, it’s annoying because OFTEN people want to help me when I DON’T want help, and don’t want to help me when I DO want/need help”

It’s challenging going places and dealing with people who insist on “helping”.  Sometimes, when you go out, others feel the need to constantly try and “help”, when, in actuality, you are capable of doing things on your own.  It just may take a bit longer than others, which is totally okay!  However, it can get taxing to continually try to explain this to others.

“I feel this way a lot, but sites like this keep me going and help me realize I’m not alone.”

“Thank you for speaking out with this piece. Once again, so relieved I’m not the only one.”

Social Media can also be emotionally exhausting on anyone, yet even more draining for those with a chronic condition.  It’s tiring for those that are researching facts and cures and deciphering between lies, truths and half truths.  Social Media can trigger many emotions when reading others comments and situations, and can cause a lot of confusion and frustration.  Conversely though, social media sites and communities like ours can often provide a safe social haven where you can get the social exchange you might occasionally want, without having to leave your home or expend a lot of energy!

“For me, it’s been easier to not go out and talk to people. Fatigue, cognitive problems and the fact that I really don’t enjoy social events that I would have had fun at before…”

“Been easier to hang out with my dog since she doesn’t ask questions.”

“I love my friends and family, but fatigue says I love my bed a tad more. And with Netflix, popcorn, and wine, I can’t say it’s not time well spent…”

At times, going out socially can cause apprehension and overwhelming feelings, as some attempt to go out for a fun social evening, yet try so hard to avoid negative conversations and situations.  It really can set you back and take a toll.  Sometimes you may just want a rest from all the exhaustion that these situations bring.  Especially if you feel like just getting through each day is a chore!

It is completely understandable if you just want or need to to stay in and stay to yourself to avoid the grueling challenges out there.  You know the balance you need, and what your body can and can’t handle.  It’s completely okay to say that a hermit’s life is the life for you when you need to!

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Some Things People Wish They Knew When Diagnosed with MS

This past month, we published an article by one of our advocates, Devin Garlit, that centered around things he wished he had known about how his MS would progress upon diagnosis many years ago.  In response, many of our community members affirmed not having expected many of the obstacles they have had to face since diagnosis, including cognitive and mood issues, the complex trial-and-error nature of MS treatments, the unpredictability of MS progression, as well as social and medical support, additional stress, and the need for sufficient financial planning.  We wanted to share what they had to say. MS can affect everyone very differently, so not all of these themes may resonate with you, but it seems many individuals in our community have converged around a few key issues.

Friends and Family Support

“The hardest thing for me to explain to friends and acquaintances is my (often) sudden need to stop engaging and seeking a place for “quiet time” in order to regain control of my thoughts and executive function. Sometimes I have to just blurt out, ‘I can’t think right now’”

“If I am overtired or overheated, my brain turns to mush. I need my husband around when I attempt new activities that require exerting energy in public. He watches over me carefully and can tell when I will need help. So, I don’t attempt challenges like bus trips or museums, or traveling to new places unless he (or some other understanding relative) is with me”

Cognitive Fog and Stress

“From one person in a STEM career to another, cognitive issues are definitely the most scary for me, and my most persistent symptom (well, and fatigue … but the cognitive fog is almost like an extension of fatigue), and are probably responsible for my recent job “re-assignment” that has left me devastated beyond words”

“Stress has always been present in life, it is just how you deal with it that is important and that is something I am working on. Maybe looking for a counselor or someone who I can talk to for some tips”

“Wow can I relate, especially to the cognitive issues. I wasn’t prepared for that”

The Unpredictability of Medical Support

“My first brain doc was diagnosed with MS herself and had to retire. Reading this was like reading a biography of my life with MS. About to switch health insurance and consequently, will be starting over with a new neurologist. This will be my 4th brain doc”

“Yes the doctor part is true and so is the stress. I just recently changed neurologists and will probably change again next year”

“The part about the doctors is so true! You must advocate for yourself. I was seeing a neurologist that had me coming in every month! It was getting ridiculous and he didn’t seem to care how I was doing just that I was on [the same medication]”

“I was not very well informed by my neurologist when I was diagnosed. He told me to google MS and do my own research about it—that was the biggest mistake. I scared the crap out of myself”

Although MS can affect everyone differently, it is very apparent that no matter where are person is in his or her battle, there are some common things people don’t expect.  Please keep sharing your stories and personal journeys with us.  By sharing our experiences, we may be able to paint a clearer picture of what life may be like for those who are just beginning on their battle.

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What YOU Wish People Knew About MS-Fatigue

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MS-related fatigue is not “regular” fatigue, but it’s hard to help people who don’t have MS understand what this type of fatigue is really like. We recently shared an article by one of our community experts outlining some things others may not know about having MS-related fatigue.  So many of our community members shared their feelings with us, so we wanted to capture some of their thoughts on what they wish others understood. Here’s what they had to say.

Wishing Others Would Simply Understand

“I know I work, and by the time I get off, my body doesn’t want to move, much less think. I can be somewhere and be just as lost because of the fatigue. I feel your pain that if you don’t have MS you don’t understand”

“Thank you so many times over. I started crying reading this. I have tried so many times to explain the difference between being tired and fatigue, I feel to no avail. My fiancé tries to understand but gets so frustrated with me when all I want to do is sleep”

“I have had this issue since my diagnosis, and like you said, when I say I am tired, people tend to go straight to their own tiredness and talk straight over me if I want to explain”

Cognitive Fog Troubles

“I am one of those who still work, but the stress of the job causes brain fog and cognitive issues and mental exhaustion. It’s not that I can’t do my job, it just takes me longer”

“More and more it’s not just physical fatigue, but a mental fatigue as well. My once very capable brain slows down to a point that the simplest math task or organization plan has to be figured over and over again until I’m annoyed and frustrated with myself”

“Spot on! I often find my brain sending me messages to give up. I can compare it to the feeling of sprinting until you can’t sprint any longer. Your brain tells you to stop, give up. The same is true for me with MS. My brain is telling me to give up”

Frustrations, Life Changes, and Never Giving Up Hope

“I always get the, ‘you’re just getting older.’ Hello!! I’m 34, how’s that old? Isn’t that like the prime of your life? People run marathons well into their 50’s!”

“On day after working, my then 10-year old son asked me to play a board game, I replied, ‘I’m too tired.’ He shot back, ‘mom you’re always too tired.’ That broke my heart”

“I can feel great, go out to dinner, order my food, and by the time it gets served, I’m so fatigued I don’t feel like picking up my fork to eat”

“You have the fatigue, but you still try to do things. It takes twice as long, since you drop things or are off balance. This leads to frustration, then anxiety, and full-blown stress. And your mind keeps playing the tune, ‘I wish I could feel good for just one single day.’ And to top it all off, it’s a beautiful day and you just want to enjoy it. The day in the life of a person living with MS”

“Remember that MS is not what defines us. We can still have a good life if we remain positive and keep trying. We CAN NOT let it get us down. We are all better than that. And for me, I try to remember that I am not in this alone, and sometimes that helps me get through the day… In between naps!”

Thanks to our community for your awesome responses. Keep sharing with us, and with each other, how you handle MS-related fatigue, and what you wish others knew about your struggles!

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When someone asks, “So, What Do You Do?”

We recently published an article by one of our community experts on how a simple small talk question can take on an entirely different meaning when battling a chronic condition.  Life with MS can make it extremely difficult, if not impossible, to continue working fulltime, often leading to career changes, unemployment, or life at home on disability.  This can make answering the common question, “So, what do you do?” incredibly challenging.  Invisible symptoms, seemingly good days, and the difficulty in trying to get others to understand your struggle can make your answer to this hard to put into words.  So many of our community members shared their own experiences with us after reading Devin’s article, and created some really great discussion.  We wanted to share some of the stories and responses we received!

Ways to Answer the Dreaded Question

“I am old enough now that I often just reply, ‘I’m retired.’ Then people look at me like I must have made lots of money and was lucky enough to retire early”

“I do facilitate workshops for those of us living with chronic conditions so that is an answer I sometimes give. I still hate the question though”

“Accept it. You are a fulltime caregiver…for yourself”

“So true, I feel like I’m always trying to justify myself to people! People see me and say, you look fine, you could work, but they don’t realize to be at that social gathering, I had to rest all week!”

How Life Without Work Has Impacted the Community

“I was an RN, and my role was to give comfort not get comfort from others. When I had to leave my last job, my world ended as I had always known it. I miss my used-to-be life”

“I couldn’t agree more. I’ve been on disability for almost 2 years now, and I hate every day of it. When I dreamed of not working, I didn’t dream of not being able to do anything else. I thought it would be fun! This is not fun. Feeling useless is horrible”

“I miss working! It is nice to be with other people. It allowed me to forget my MS for a little while until the fatigue would set in!”

Finding the Positive in the Struggle

“My family and friends want me to make ME the priority. This whole situation is rocking my world!”

“I was an electrical engineer. I spent a fortune on good education and then MS strikes. If there is any good in all this, it is that MS makes for a great friend filter. The friends that stick by you through the MS journey have been vetted and are truly friends”

“Couldn’t have said it better. Right now going through second round of disability approval! Never in my wildest dreams would I have thought I can’t work. Everyday is different, just don’t know how you are going to feel. One day, can’t get out of bed, next day feel like you could conquer the world. We just have to stay positive and hope we can take whatever comes our way!”

Regardless of how you answer this question, it was very clear to see from the community comments that you are not alone.  Even those who didn’t share their own experience often responded with a resounding, “SO TRUE!” or “This hit the nail on the head for me!”  Responses like these remind us why it is so important to be a part of our online community and support one another on this no-doubt challenging journey.

Let us know how you handle this question, or others like it, that can take on a whole new meaning when living with MS!

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Do You Live Life in an MS “Bubble”?

We recently shared an article with our MS community about living life in an MS ‘Bubble’.  So many of our community members expressed feeling similarly to the author, Ashley, and feeling like they retreat to a mental hideaway when stress and depression of MS becomes too much to handle.  Their responses were amazing, and we wanted to share some of them!

Preferring the “Bubble” to the Outside World

“The bubble is challenging sometimes, but it’s also safe. There are just some days where challenging myself isn’t worth the risk of falling, dropping things, etc. Trust me to know my limitations. I’m not lazy. I haven’t given up”

“Thank you for giving the perfect title to the place where most of us escape to from time to time as needed.  People may not understand why we retreat to our “bubbles” but they are a safe place for us no explanation needed”

“I also live a lot of my time in a bubble…I sit with my back to everything, and play 1 level of 1 game for hours on my laptop. I tell my husband and son that I need to zone out for awhile and thankfully, they understand”

“I mentally prepare.  No appointments, tell hubby having a recharge day, not doing anything.  Sit, drink tea, watch lots of TV and/or read”

“Being trapped so much is why I’m on social media so much…I miss getting out, but I also really appreciate these online acquaintanceships”

Hiding in Your Bubble Instead of Engaging with Others

“This is just me.  I definitely shut myself away in a bubble—90% of it was my illness, 10% was that I just found it hard to be around people. It’s hard to listen to everyone’s great lives when your own is crumbling around you”

“This is so true. I’m supposed to be meeting friends for lunch tomorrow, but my fatigue levels are terrible just now.  I don’t want to cancel and I don’t want to let people down, but I also don’t want to fall asleep.  It would just be easier to stay at home in my protective bubble”

“Sometimes people can be so cruel it makes me want to run home and stay there. I’m very comfortable by myself now”

Enjoying the Ability to Avoid Responsibilities and Daily Tasks

“Really! It can be challenging just thinking about moving or turning over in bed!”

“This is so right!  People just don’t get how hard it is to do the simplest things.  Like shower, get dressed, and go out.  The first to get done.  Maybe pj’s go back on and stay home is more like it”

“Thank you for saying it!  Get so sick of people saying that going out will be ‘good for me’.  NO it won’t!  It will exhaust me and make me feel ill for days, sometimes weeks!”

“Hermits unite!  Lol!  People with NO energy don’t wanna move…let alone GO somewhere…”

“It’s just easier to stay at home than to get dressed which tires me out more than I can say”

“It’s just easier…I don’t even want to go on vacation”

Not everyone reported feeling safe and comfortable in their bubble, however.  Some of our community members said they even try to fight the bubble as much as possible, and stay engaged and active.  Let us know how you view or use your personal MS bubble, and how it affects your daily battle!

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I Better Do It Now Before I Can’t—Community Thoughts!

Recently, one of our community experts wrote an article about the struggle to find a balance between taking advantage of fleeting, “good” days with MS, and potentially overworking your body to the point of putting yourself out of commission even longer.  We received an outpouring of responses from you in the community, ranging from “OMG! Me too!” to personal stories of finding your own balancing point.  Here are some the things our community had to say:

Feeling the Pressure of the Balancing Act

“Oh boy this is the story of my life!! I get that one morning that I feel good (not great) and I am on a mission. By the afternoon, I am starting to pay for it. Factor in the heat or cold, then it is a whole new story!”

“I do the same darn thing…will I ever learn? Those few and far between good days are so great and we can’t help but to take advantage of them. It’s like drinking too much and being surprised we have a hangover. But jeez, we pay for doing something not that fun, like vacuuming!”

“I have a ridiculously difficult time with my “time-to-stop” meter; I seem to operate in an all or nothing mode…if I can remember what “all” entailed in the first place!”

“Perfect timing for me to read this, “so true to my life” article. I’m having one of my “good” days and trying to accomplish as much as I can while I can. Funny how our minds can whirl with so much activity, but our bodies don’t cooperate”

Trying to Take Things in Moderation

“This describes me for sure. I feel so good about myself on those “good” days because I get so much done, but as we well know, another “good” day is always followed by “bad” days. So if things get done, fine. If they don’t get done, well that is fine too. This is one of those things you just have to accept when living with MS”

“I’ve had to train myself to “make hay while the sun shines” and (try) to accept that sometimes good enough is…good enough. I still struggle with overextending myself though”

“This is so true. You feel good and get started with one thing that turns into more as you go and always over do it. I want to do things like I used too, then the monster inside me kicks my butt down for days! We all do what we can on our good days”

“Depends on what I do—but one strenuous day I am out of commission at least the next day. Try to do what I can and after more than 20+ years with this beast, I have finally learned to listen to my body and stop most times when it gets to be too much”

Managing the Unpredictability of Life with MS

“Hardest thing for me is to figure out exactly how much I can do each day and not lose my tomorrow. One day I can accomplish a lot, but another day those tasks will put me down for a day or two. Thankful for my good days, but I HATE the inconsistencies of MS”

“I get so happy and excited when I feel quasi-normal. I try and do as much as I can. I do this constantly, then end up unable to move for a couple of days. Just when I feel I am understanding a rhythm to this truly wacky disease, it throws me for a loop. The learning curve is a slippery slope”

We were so overwhelmed by your great responses, and it’s clear that you are not alone in your battle to manage taking advantage of rare good days, while still taking care of yourself to prevent further setbacks.  Let us know how you manage this balance, or tell us about any of your experiences!

 

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MS and Loneliness

“If you see me out or even in pictures, there’s usually a great big smile on my face.  To say that I suffer from loneliness doesn’t seem to make sense.  There are so many times though, where I sit and think to myself that I’m alone, that no one really understands me.”

This was just one of the many powerful quotations our contributor, Devin, recently wrote in his article The Loneliness of MS.

Even if well-meaning people say they understand how multiple sclerosis is impacting your life, it’s unlikely they do. And after reading this article, our community shared an outpouring of comments expressing their similar experiences.

Below are some of the thoughts our community shared:

I can’t get out and do things with others.

  • “The part I find most difficult isn’t actually being alone but the lonely feeling you get because you can’t do the things you once did with family and friends.”
  • “Fatigue alienates me more from friends than my obvious disability. Once you say no once or twice, invitations stop coming.”
  • “I feel especially lonely talking about events. I have an event in November. My thoughts are consumed with if I’ll be up to it.”
  • “Lost a lot of friends because of MS related issues, and I cannot go out and see those I do have often because of MS issues”
  • “My friends are into a lot of summer events, but there are so many unknowns…I don’t know how hot and sunny it will be, I don’t know if there will be enough chairs for everyone…will there be easily accessible toilets…I really don’t want to ruin anyone’s day. So better stay home.”

I feel different from everyone—sometimes even those with MS!

  • “People just don’t get it. I don’t feel ‘normal’ and it can get really lonely.
  • “A friend introduced me to a friend of hers who was dx 20 years ago, so she can give me advice when I had just been diagnosed. I realized how we were not at all in the same place. It was nice to know she was out there, but I still felt alone in my experience.”
  • “I suppose that’s why support groups are usually divided in at least 2 separate groups: DX less than 2 years ago, and all the others. I think either group could really overwhelm, and possibly upset, the other group.”
  • “I feel very lonely. Even though I am not physically alone, I am still alone.”
  • “My family tries so hard, but every time they accommodate me, I just feel different, and I feel alone.”

It’s not all loneliness, though: some of you offered solutions for easing those feelings:

  • “I have made the choice to look at my MS disability changes in my life that everyone I know is going to face the same challenges as we all age, I am just ahead of the curve.”
  • “Having a dog does help some. For me any way.”
  • “Online communities make a huge difference. It’s not a perfect solution, but I often feel closer to my online friends than my other friends”

While it does not fix this impactful issue, many in our community took solace in the fact that they were not alone in feeling alone. Sharing your feelings and experiences with others online can be helpful. How about you?

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The Invisibility of MS

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Living with MS can be a daily challenge, even if other people can’t physically see the struggle. The invisibility of MS symptoms can be one of the hardest and most frustrating aspects of living with this condition, so when we shared some of the data about this subject from our most recent MS in America survey, many members of our MS community told us about their thoughts and experiences. Here is what they had to say:

The top issue faced, especially now that it’s summer? Trouble with the heat and the way it impacts your body:

  • My activity is restricted by the heat. Especially today when the temperature will be in the 90’s.
  • I would rate the intolerance to humidity at the top.
  • My speech gets slurry and my balance is off. I get accused of being drunk.
  • The heat makes my head swim and consequently, my balance gets really bad.
  • I have been feeling more and more fatigue due to my body temperature going from freezing to hot. Each time that occurs, I have less energy, less motivation to do something.
  • Summers are the hardest for me!!! The last two weeks have been increased fatigue, less energy, pain, and brain fog! Most people love summer! I used to, but now it’s the time I struggle the most.
  • Severe fatigue & the heat in Alabama are really bothering me!

Fatigue: it’s a huge (and invisible) concern for many:

  • Fatigue especially. It’s like the first trimester [of pregnancy] fatigue times 100!
  • I have fatigue every single day. It’s hard for my husband to understand that it’s every day. I have maybe 5 times a year that I feel like a normal person.
  • Yep, and the lack of sleep because of spasms equals more fatigue.
  • It’s hard for others to understand how you can be so tired doing everyday things. After doing a load of laundry, going grocery shopping and making dinner I am exhausted!

And some other symptoms that can’t be seen but definitely make life more challenging:

  • Don’t forget the bladder and bowel problems.
  • It’s the periodic blindness that sucks for me.
  • And the headaches are brutal.
  • Mood swings are really challenging..
  • The tingling symptoms scare me. I’ve had a couple of really bad relapses and I’m always afraid I won’t feel my body again.
  • Pain needs to be one for me – it’s about 99%.
  • My issues seem to be centered around fatigue, weakness, blurry vision and weird cognitive stuff like memory issues or not being able to think of words, or using the wrong word.
  • My wife, family and friends will never truly understand what it is like to have headaches and other symptoms on a frequent occurrence and why and how it affects my mood, energy levels and potential plans in a day.

Do these responses ring true for you? What invisible symptoms do you struggle with?

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What You Wish They Knew About Your MS

Many people have heard the words “multiple sclerosis” before, and probably know it’s a chronic condition, but so many do not know what it really means to have MS. We asked our community at MultipleSclerosis.net “What’s one thing you wish more people understood about MS” and the responses were phenomenal. Below you’ll read real experiences from people just like you that start to paint a picture of what MS is really like. These are the things people should be aware of; this is how we spread true MS awareness!

I’m Not Drunk!

  • My memory is not always good! My husband and children understand and are patient, but people who don’t know look at you like you are drunk or high
  • She’s not drunk. She doesn’t even drink. It’s the MS that makes her off balance sometimes
  • I am not drunk, I am not dumb, I am not lazy – I have MS
  • Don’t tell me I seem drunk when I trip – It’s not funny

I Miss My Active Lifestyle, Too

  • If only others understood how we miss our active life before MS. It’s bad enough that we often feel like a burden, being treated as one is pretty much the worst feeling
  • Sometimes I feel depressed not being able to do what I used to be able to do – others just don’t get it
  • People always knew me as being active, and now they never see me. I just wish they would come by sometimes. All I need is to know someone out there cares

When I Say I’m Tired, I’m Tired

  • When I say that I have to go home early because I am tired, I am really tired. It´s not because I am lazy, it´s not because I am bored or boring, it’s because I am tired!!
  • When I say I’m tired, I’m not being lazy. And when I say my body hurts, Aspirin will not help
  • I wish they understood that my tired is not like their tired, and my pain is not like their pain
  • Just because I look healthy does not mean I am and when I say I am tired and need to sit down, it’s not a joke! 

Every Day, Every Minute, Is Different

  • I wish they understood that every moment is different. I can be good one minute and not the next
  • I wish people understood that my mind and body change every moment of every day
  • One minute I could be fine, but then next I’m not. I put on a brave face, but don’t assume I’m “fine”
  • Don’t ask me how I am if you don’t really want to know

How about you? Do you ever feel misunderstood? What do you wish more people understood about life with MS? Share this article and your own stories and experiences to spread the word about what it really means to live with multiple sclerosis!

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MS Mood Swings

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You can only blame lack of sleep for so much before you start asking “Why is my mood so inconsistent!”  Turns out, it’s not just fatigue – it’s actually a common symptom of MS! As with many invisible symptoms that can occur with MS, mood swings can have a profound effect on relationships and emotional health as a whole.

Our phenomenal contributor, Devin, described this frustrating symptom perfectly in his recent article “Invisible Symptoms of MS: Mood Swings” and the community rallied behind him sharing their own stories and support.

It became clear that this is not uncommon, and while difficult to manage, having the support of other people with MS can make all the difference. Here are just some of the comments our community members shared:

Sometimes, even I can’t figure out why I’m upset

  • I never thought my mood swings could be MS- related. Sometimes I can’t explain to myself why I’m reacting as I am.
  • Since my diagnosis, I cry at every chick flick and even the Budweiser Clydesdale commercials! I can’t seem to get my emotions together sometimes
  • There are times I know I’m picking a fight with my husband about something stupid, but I don’t even know why I’m upset!

I just thought I was crazy!

  • I always thought it was just who I am. An emotional roller coaster with frequent break downs.
  • The problem is most people don’t know about this symptom, so I get more depressed because I feel like people think I’m losing your mind.
  • I always know when my meds aren’t working because I start to feel like I’m going crazy – then I have a lot of people to apologize to
  • I just thought I had gone crazy: I didn’t think it could be a MS symptom. It puts my mind at ease to know I’m not alone.
  • I thought I was just a raving lunatic!

Knowing why is one thing; managing these swings is another!

  • It feels normal in the moment; not until after that I look back and realize just how moody I was being. I know it’s the MS, but I don’t know how to control it
  • I definitely get moody, but what can you do? I just live with it and try to stay strong! Laughter is key.
  • I can feel it coming on – as soon as I start to feel practically homicidal I isolate myself in my room and wait it out.
  • Knowing my MS was the cause of my mood swings was a relief, but finding ways to conquer them is the next challenge.

How about you? Have mood swings impacted your life? Have you found any good approaches for managing these? Feel free to share with the community – you are not alone!

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