“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?
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?
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!
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!
There is a lot about MS that is difficult for “healthy” people to understand, and one of the most frustrating things is that it can be really difficult to make plans in advance. You just never know how you are going to feel the following day, or even the following hour. One of the amazing contributors at MultipleSclerosis.net, Matt Allen G, wrote a wonderful article about his frustrations with being unable to make plans with friends in advance, and then some people not understanding why those plans may have to change at the last minute. Matt’s words really resonated with our community, and so many other people shared their thoughts and experiences with us. Here’s what our community had to say:
It’s emotionally draining
- My head tells me I can do it but my body won’t let me. For me this is the worst. I look around during my house and there is such that needs done but I just can’t. Depressing.
- I get so sad and discouraged when I see people posting pictures of everywhere they go and the fun they have…and I do well to get to the store once in a while.
- This is one of the hardest parts of staying in the family dynamic.
MS Doesn’t Care
- MS doesn’t care if your children need you to drive them here, there, and everywhere. MS doesn’t care if you got all dressed up and now you need a nap. I have gotten all dressed for church and then as my husband is backing up the van I ask him to stop as I need to go back in the house. Then I take a nap, fully dressed, too tired to undress.
- I have an international trip coming up, and the anxiety alone is killing me, but I figure you only live once. If I let this disease deter me from making plans and living my life as best I can while I still can I’ll always regret it. Tomorrow is not promised to anyone. You never know when there’ll be a “next time”.
- I never know when I am going to feel better; 10 minutes good, then it’s downhill.
- I always get trip insurance and have used it. It takes the pressure off. Make sure it covers pre- existing conditions as most don’t. I think it is Travel Guard. You have to purchase it within 2 weeks of booking a flight or trip. Really truly despise this part of living with the monster.
- My experience has been to make plans with the people who understand that I will do what I can. I go, do what I can and find happiness that I did what I could and had an experience that I will remember.
- I stopped making plans because I never know how I’ll feel. One day at a time.
- Fatigue and meltdowns make it so difficult to do things around the house. I’ve learned to do things as I can because pushing to finish anything isn’t possible for me.
No one understands
- This sums up my life perfectly. I HATE the unpredictability of this disease. Especially when “I look so good!” but my body’s numb. Or I can’t lift my leg. People just don’t understand what its like. No matter how much they try to empathize they’ll NEVER understand it. Like the phrase goes, “no one Gets MS Until they GET it”.
- This is something I wish all my family and friends understood.
- No one understands what MS is doing to you… You have to listen to your body. You will lose people because they just don’t understand… Keep positive and Never ever give up!!
- I wish my grown children would understand this.
I won’t let MS run my life
- It never stops me. I’m going to Thailand, jumped out of a plane, to work I drive a modified car, and I play wheelchair basketball for my local team.
- One day at a time is all you can do.
- It’s not about having a good day. It’s about having a good minute!
What about you? Do you struggle with planning? Do you find that friends and family don’t understand?
Communicating the full impact of MS to friends and family is a daunting, and often frustrating, task. Looking fine and being fine are two very, very different things. This concept rang especially true for our phenomenal contributor, Matt, so he wrote an amazing article titled “Please, Tell Me Again How I’m NOT Disabled”
Our community completely agreed and responded with abundant feedback. Here are just some of the frustrating experiences encountered by our MS community:
No, you don’t “understand”
- I get easily frustrated when a close friend or a direct family member would say they understood, and then get mad or angry when I’m having a relapse.
- I’m in the painful process of a relapse and my family doesn’t understand the facts of any of this. Especially the fact that NO ONE is more frustrated than I am.
- If you don’t understand, at least be human and try. That’s all we ask.
- Sometimes I want to scream, “Stop telling me you understand when you have no idea!”
I might look fine, but I’m not
- I look normal but feel destroyed inside.
- When people tell me I look fine I just respond with “that’s because I don’t wear my brain and spinal cord on the outside.”
- Had to “talk” to my relatives to tell them that just because you look normal doesnt mean you feel normal.
- I just hate the “you look good” comment. What should I look like?
I’m not lazy!
- When your support system doesn’t ‘get it’ and accuses you of laziness, it is infuriating. I hate not being understood.
- I tell myself how pathetic and lazy I am. I don’t need to hear it from everyone else.
- I can’t live up to your expectations. I can’t even live up to mine, and it’s so frustrating.
- It’s amazing to me that people with MS have to fight so hard to “prove” just how disabling it can be
How about you? How has your experience been communicating to friends and family about your MS?
MS has a profound impact on so many aspects of the lives of those living with this condition, both big and small. While the “big” stuff is talked about more frequently, like treatments, doctor appointments, etc, the “little” stuff is just as important. One of the contributors at MultipleSclerosis.net, Devin Garlit, recently wrote an article about the unexpected perils of showering with MS. The simple act of showering can really be taken for granted when you don’t think about all of the factors involved. Between slippery surfaces, temperature changes, and even needing the energy to stand up for an extended period of time, showering with MS is not simple, nor easy. Our community members really identified with Devin’s sentiments, and they even shared their own thoughts and experiences with us. Here’s what they had to say:
Balancing in the shower is a real challenge
- I can’t close my eyes to wash and rinse my hair unless I’m hanging on for dear life! I close my eyes, I fall! I started showering at night so that all I have to do is get ready for bed. A morning shower will destroy my entire day.
- Washing my hair scares me. I get so dizzy.
- Thank God for the three grab in my shower. Closing my eyes and looking up makes me dizzy, so I have to hold on.
- Thank goodness for shower chairs, grab bars, and hand held shower heads. Still taking showers can be exhausting. I miss my baths. I loved laying and just soaking in the tub.
- Balancing is such a challenge. I’m not glad that anyone else goes through it but I’m glad to know I’m not just loosing my mind. I thought it was just me. Even looking up at my son’s drone flying around in the sky I must find something to hang on to.
- I do the swaying thing and usually fall backwards. I’m thankful for a small shower as when I fall back I end up just leaning on the wall.
I make adjustments to cope with the struggles of showering
- I too have resorted to every other day and shower the night before if I have plans the next day. We adapt and adjust. Thank you again. Blessings and positive vibes to you.
- MS made me give up baths 10 years ago and had to give up showers 3 years ago. Sponge baths are all I can manage. MS is an evil thief.
- I’ve had to start showering at night and I hate it! I’ve also scalded myself when my brain fog had me turning off the cold water before the hot, ouch!
- I started using a shower stool about 2 years ago because it helps. It’s hard to stand long enough to shower.
- I have learned to work with this by only showing in early evening in case it increases the fatigue. Important not to shower unless someone else is home – safety first.
- I sponge bathe, and shower once a week. Showering takes so much out of me, the heat, the slipperiness, the drying off. If I need to do something the next day, I shower the day before, and sponge bathe the next morning to freshen up.
- I’ve got an anti-slip mat & grab bars in our P-shaped shower-bath.
Showering can be painful
- Sometimes the water hurts or feels like it’s burning hot and it really not. When I take a shower I need 2 hours after to rest then I can get ready. I so hate MS.
- It’s amazing that the water from a shower can actually be painful – people who don’t have MS just don’t understand.
- It is very hard to explain to people why showers cause me pain and make me so tired that I often cancel plans and need to lay down.
- I have burned my skin from not being able to feel how hot the water gets. I definitely can’t stand to shave my legs anymore or I will end up outside the shower on the floor.
Showering is exhausting
- It is so frustrating to have to rest after a shower. I do use a shower chair, and luckily we have sliding shower doors. Though not supportive, it helps to have something else to steady yourself with other than just a shower curtain. I used to love soaking in a hot bath, but I haven’t been able to do that in years. I still have a shower every day, but it’s a struggle some times.
- It’s exhausting! I’m considering a shower chair, but it’s hard to accept that I might need that. Balance, brain, fatigue – it’s hard to believe this is my reality.
- I have issues with getting very weak with showers and nearly passing out before I am done, barely making it to the bed to lay down sometimes. I take lukewarm showers too. I also have repeated steps as well.
- The shower has been an issue for me ever since I had my first child. It’s so frustrating having to rest after taking a shower. I feel like I spend my whole day resting between every little thing. I would shower at night but I sweat so much in my sleep it’s pointless.
- Showering is an Olympic event…all the hurdles are exhausting.
What about you? Is showering a challenge? Do you have any tips to make it easier? Please, share your thoughts with us in the comments!
Webster’s Dictionary defines MS as: a disease of the nervous system that causes the gradual loss of muscle control. But for anyone experiencing multiple sclerosis on a daily basis, you know that’s only half the story. Our fantastic contributor, Stephanie, wrote an article about the “Lesser Known MS Evils” and the community loved it.
Here are some of the odd, unexpected symptoms our MS community experiences:
“It itches, it burns, it’s even numb!”
- The itching has been the most annoying for me. It always happens in one part of my back, and doesn’t stop with scratching
- My hands itch all the time. I always thought I just had dry skin!
- I get itchy skin all over my face and even my eye lids!
- My tongue has felt burnt since I was diagnosed a little over 2 years ago.
- The burning has been so bad
- It literally feels like I’m burning. I get so hot and sweat just pours off me!
- I can never tell if I’m cold or hot!
- Sometimes the left side of my face just decides to go numb.
- I get so much numbness. You would think if it’s numb, it wouldn’t be able to hurt. But nope. I get both
“It’s like my body forgets how to…”
- Nothing like having to explain that my body “forgot” how to swallow
- I had trouble swallowing when I first was diagnosed. Took me hours to finish dinner!
- I regularly choke on my own spit.
- Mine mainly happens with drinks, especially warm ones, and every so often I “choke” for no reason. It can be especially embarrassing at work
- Finally some validation for being a “Low Talker!” Now, when my husband says, “Why are you screaming at me?” I can justify it!
- The cadence of my speech has definitely altered over the last 2 years.
- My voice has been shot for years and I can’t seem to pronounce basic words anymore
- Sometimes my body forgets if it was breathing in or out…not a good feeling, especially when I’m alone.
- I definitely experience the breathing and swallowing issue, that is so painful and scary
- Itching is one of my worst also my handwriting has gotten so bad.
- Oh the handwriting. On bad days, my penmanship looks like a 5 year old attempting to write with their non-dominant hand.
- The only way I can describe it is like a short-circuit feeling in your head.
- My family has been the saying that I’m losing it. YES! That’s exactly how I feel!
- It’s like pregnancy brain…but ALL THE TIME
How about you? Any strange symptoms you’ve experienced from your MS? Maybe ones you didn’t even know could be due to your MS? Share with us in the comments!
There’s no doubt that weather can have a marked affect on MS symptoms, but the question we posed to the MS community is: which season is worse for you? The community was evenly split between the two seasons-–for some, the summer heat can be unbearable, but for others, the bitter chill of winter is enough to make you research human hibernation.
See what they had to say and which faction you below to:
Baby It’s Cold Outside
- Everything is sensitive
- Even a slight chill causes bone-shattering pain for me
- Even temps of 50° can leave my feet blistered with frostbite. My shoes in winter are 2 sizes bigger, just to accommodate extra socks.
- My skin feels like it’s covered in needles
- Can’t control the spasms
- Cold causes major muscle spasms in my feet, legs and back!
- My legs hurt from muscle spasms and I’m even more clumsy because my hands are numb
- Cold makes me spasm more
- My muscles are stiff and painful
- Just being outside for 10 minutes in the snow and I lock up like a mannequin in a window
- The cold kills my hips
- My cold body feels stiff and won’t move
- My legs are in constant pain in the winter
It’s Getting Hot in Here
- Humidity is my kryptonite
- Humidity is like wearing cement boots
- When you add humidity to heat, I’m a dishrag – just done for the day
- Humidity is intolerable – like having an anchor tied around my waiste
- Heat sucks the energy right out of me
- It’s a struggle to walk; I feel weak like I’m melting.
- It makes each foot feel like 200 pounds
- I have such a hard time walking; I call it drunk legs
- I wilt like a weed in the Sahara!
- Heat makes my muscles like wet noodles
- I can’t think straight
- Heat shuts me down
- Heat causes my brain to just go flat, like I’m in a steam fog
- My brain just doesn’t work in the heat
Stuck in the Middle with You
- Any extreme temperature is awful
- Extreme temperatures, either way, affect me very badly
- Heat makes me feel rubbery and the cold makes me walk like Frankenstein
- I hate extremes of both – heat makes me fatigued, cold makes me numb
- I thought I hated one, now I hate the other
- I used to say that heat was my kryptonite. It still is, but now I find that any mildly extreme temperature whacks me out
- It used to be just heat but last year the cold was very hard too
- My MS hates the heat, but I hate the cold.
The general consensus amongst the community seemed to be that 65-70 degrees is the ideal temperature, so spring and autumn take preference. But how about you? Which camp do you fall in—hater of heat or contempt for cold? With the colder months approaching, here are some tips to ensure you’re prepared for the impending weather!
Tick, tick, tick…boom! That’s the sound of explosive “word vomit,” the result of a broken brain filter, the final moments of a shortening fuse. Many MS-ers have experienced this 0-60 build of anger in situations that would normally cause little concern. So, our fabulous contributor, Lisa Emrich, decided to do a little digging and see if this shortening fuse was actually linked to MS. Her article was a hit! While the research data may not be clear-cut, the community’s reaction certainly was:
This is so me!
- THIS IS ME!!! I have a very short fuse and very little “filter” on what I say when I “blow.” I don’t mean to act like that and it upsets me when I lose it, but I can’t seem to stop it either.
- This is me, too. I’m a really nice, caring person but…with a really short fuse. I also tend to speak without thinking, which has gotten me in trouble.
- I’m the same way! And I don’t mean to be. I have never been like this before and when I say “it’s the MS” I get the “yeah, right” look from some people.
It’s worse when I multitask.
- I find that when there is too much going on around me I cant keep up, and it is so aggravating!
- If I’m doing just one thing and then end up having to multitask AND answer questions or listen to someone talk, I break down.
- My fuse goes when there are multiple people/activities demanding my attention. I’ve discovered that I can only focus on one thing at one time. When that one thing is taken care of, then I can usually move to the next thing.
Sometimes I just want to scream “Shut up!”
- As soon as it starts I try to tell people to stop and hush for a bit, but they don’t understand, or they roll their eyes, or they keep talking,. Then they comment on how they AREN’T talking. My point is, there is never silence, and sometimes, I need silence.
- The fact that people in the office feel the need to yell because they don’t seem to have inside voices just makes it that much worse.
- Some people just know how to push the hell out of my buttons!!!
My poor family gets the brunt of it.
- The only way for me to deal with it is to declare to my three teens “I’m way off my A game today, so please bear with me.”
- I am so frustrated, and it is ruining my relationships with people, especially my poor child!
- I’ve found that too many demands for my attention at one time creates a very unlovable person—my family puts up with a lot.
- I hate it. It requires, love, patience, and understanding from the spouse!
I’m not me; this isn’t who I am.
- I have done a complete 180 since my diagnosis in 99. I used to have a REALLY long fuse, but I’ve started snapping more and becoming more passive-aggressive.
- I don’t even know who I am anymore!? It’s so hard.
- I can blow up in a second if things aren’t the way they’re suppose to be, and that’s not me!
- I never had this issue before. Now I tell people that “my bitch switch has a hair trigger.”
Does this sound familiar? Have you experienced an inexplicably short temper? Share your experience with us!