Tag Archives: MS community stories

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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The Invisibility of Disability

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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?

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Challenges With Showering When You Have MS

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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!

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Making Comparisons with MS – Community Feedback

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There are so many aspects of living with MS that are frustrating, and sometimes those frustrations occur when interacting with people who do not have MS. One of our amazing contributors, Ashley Ringstaff, shared her feelings about people comparing their experiences with things like fatigue, pain, numbness, and other symptoms with those symptoms in someone who has MS. Many of our community members shared their thoughts and experiences with us after reading Ashley’s article, “You Can’t Compare…”. Here is what they had to say:

“Healthy” People Just Don’t Understand

  • This is something that I just cannot seem to communicate to certain people who don’t have MS or have never been chronically ill. “Healthy” people just cannot empathize, and I know because I used to be one and now my experience is completely different.
  • The best is when people who know I have MS contact me and tell me they feel they are having symptoms and think they might have MS too – as if I can diagnose them! I try to see it from their perspective but it’s very difficult. ‪Also when I say I’m fatigued- they say they get that way too all the time! I want to explain to them that they have no idea. But I just smile.
  • When I try to talk to family members, they say they get dizzy, or they stagger around, etc. I just stop talking and tell them they should get checked out. Even my husband doesn’t totally understand what I go through on a daily basis. I just get so frustrated that I can’t do everything I use to do.
  • I hate that my best friend who I haven’t been able to see that much in the past year constantly compares my issue with MS to her chronic pain in her hip, telling me she knows exactly how I feel.
  • When I tell people I can’t be in the heat (for me it’s anything above 70) they say “I don’t like the heat either”. I just look at them dumbfounded. I want to yell “When was the last time you got warm and couldn’t lift your legs to walk or think yourself.
  • You know, it is natural to feel this way. I am a 15-year stroke survivor and am irritated when someone (who has never experienced a stroke) says they know how I feel. The best common factor I’ve found is any type of trauma.

It’s really not possible to compare

  • You can’t even compare your symptoms with others experience who do have MS, or for that matter, I can’t even compare the last time I had a given symptom to what I experience this time.
  • I know there are many people in the world with diseases that are even worse than MS, so who compares what anyway? Just try to feel good for yourself and forget about complaining.
  • It’s next to impossible to explain what having multiple sclerosis is like to people.

“Healthy” People offer a lot of unsolicited advice

  • They ask how I am feeling, so I tell them. The response is always “have you tried such and such” or “that happens to me, too.” Now I only share my symptoms and feelings with medical professionals and a couple of friends who truly do understand. Family? Forget it.
  • I love when people say “you would feel better if you lose weight or eat healthier” or the classic “exercise would make you feel great”. My family and friends mean well but don’t always say the right things.

“Healthy” People are just trying to relate to us – it’s harmless

  • I like to be more optimistic – I believe, most of the time, they are trying to relate. Unless they are significant in my life, I don’t try to differentiate.
  • I feel the majority are trying to empathize. Most just don’t know how to react when you tell them you have MS because they don’t understand what it means.

What about you? Do you find that “healthy” people try to compare their symptoms with yours? Share with us in the comments!

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Describing MS and its symptoms – Community Feedback

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Living with an invisible illness like MS can be so difficult in so many ways. It is very common for people with MS to express frustration when it comes to getting others to understand how they are feeling and what they are going through. One of the contributors at MultipleSclerosis.net, Laura Kolczkowski, wrote an article about how she describes her MS symptoms, and a great number of our community members responded. Here’s what they had to say:

This is how I describe my symptoms

  • The MS hug I have feels like the cramp you get when you have a coughing fit and your stomach or ribs cramp up. Also it feels like Braxton Hicks contractions. I’ve lost the motor skills in my right hand. Writing with a pen has become nearly impossible. Those are a few descriptions I’ve used.
  • They keep asking why am I not smiling? I say, “well its hard to smile when it feels like your being boiled in oil, but I will try and do better.”
  • When doctors ask me how do you feel, I say, “Worse than yesterday, better than I will feel tomorrow.”
  • It’s very hard to explain. When asked, “how are you?” I usually say, “I’m doing okay.” Sometimes I say, “I’m doing well.” I wish I could say that with sincerity though! I just don’t want to seem like a downer all the time.
  • I get tired of hearing, “what do you mean you don’t feel so good? You look great.” I just smile and say thank you and stop talking. It’s just easier.
  • I say I am doing unreasonably well.

It’s really difficult to get people to understand

  • It’s so hard to get people who are around you to understand. There are times that I feel like just getting up and going to the bathroom is a chore. I’m sure people now see me as lazy. I was once not long ago full of energy and got stuff done. Now, doing the dishes or going for walks wipes me out for hours.
  • I don’t bother “describing MS & its symptoms” anymore.
  • I have been diagnosed with MS for over 9 years and my husband who has been with me all of that time still thinks I am faking the fatigue because some days I do have energy! He will never get it!
  • If you can communicate MS symptoms, how awful you feel, balance issues, fatigue etc., then people friends view us as “crippled”, less capable, and then THAT is our label. I am still looking for the happy middle ground. I am not a crippled person every day and that is the difficulty others have problems understanding, even some professionals.
  • My daughter in law had said to me, “if you just get up and try to exercise..” How could I when I couldn’t even walk? My son would say the same thing – there’s nothing wrong with you. I know somebody that has MS and they don’t look like that.
  • I don’t bother “describing MS & its symptoms” anymore.
  • When I am having a horrible flair and my speech and walking are affected, then people act like, “oh, poor baby”, but days that I “look” normal and sound normal, I hear, “well, you must be cured.”
  • ‪ I also don’t bother describing MS symptoms any more. I just say I’m fine. Most people aren’t interested.
  • Unless you look absolutely pathetic a lot of people do not think anything is wrong with you. But I will still have a smile on my face and keep on being positive despite having MS. I am not letting it beat me.
  • ‪I understand people think if they can’t see the problem you don’t have one. Lots of time my back hurts so bad I can’t stand it, but if they don’t see it they don’t understand.
  • I choose to not tell people that I’m sick.
  • I actually I have been accused of trying to be manipulative. It’s terrible.
  • There are some people in my family who, if I’m wearing a brace on my foot/leg, and they think I’m just wearing it to get attention.
  • This happens too many times. MS is truly invisible except to us.

What about you? Do people assume you are fine because you don’t “look” sick? How do you describe your MS symptoms to help people understand?

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Community Thoughts on Missing the Way Things Were

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For people living with multiple sclerosis, it’s easy to dream of the life we had prior to being afflicted with this condition. So much of our everyday lives is shaped by MS, we often find ourselves missing the way things were. One of the amazing contributors at MultipleSclerosis.net, Marc Stecker (also known as the Wheelchair Kamikaze), wrote a poignant piece on missing his former self, called “I Miss Me”. We shared his article on our Facebook page and received a tremendous amount of feedback from our community about what it’s like to miss the “old you”. Here is what some of our community members had to say:

I’ve said the same thing to others!

  • Funny, I said that to my neurologist shortly after I was diagnosed last year.
  • I just said something similar to my sweetie the other day…that I would like to have my life back. I feel as though it’s been taken from me.

I thought I was the only one!

  • And I just thought it was me.
  • I really miss me!!!!!! I didn’t know there were others who felt this!
  • I despise that I “miss me” BUT am relieved that I’m not the only one “Missing”.
  • I always have moments of missing the old me. Glad it’s not only me thinking this way.
  • I say this so much, but when I try to put things on my page or try and explain how hurts, even my family ignores it. I was glad to see this and know I’m not alone. I say to myself every day I miss me.

I Miss Me too!

  • I miss me a lot!!
  • What a well-written blog which perfectly describes the life so many of us live. Or should I say have lived. I am amongst the very elderly whose future time on this earth will be very short. You too, will adjust constantly to your new normal.
  • I mourn and miss the old me. I can’t believe who I’ve become; however it’s a new challenge and who knows what I can be and what new experiences lie ahead that I would never have had. Stay positive guys.
  • I shared with a friend recently, “I miss me, who I used to be.” Her reply… “No, now that person is still down in there somewhere.” I’m exasperated. People really don’t know!!!
  • I just want the old me back!
  • Wow! This is the first time a tag line has smacked me in the face! Even though I’ve been very lucky, as I pondered this “I Miss Me,” I suddenly felt very sad. I do miss me. Even though I haven’t been “obviously” affected by MS, there are so many hidden things, the fatigue, weakness, ability to think quickly, balance, and stamina, that yes, I am not the “me” I once was. I do miss ME. Thank you for a great article.
  • What I miss about the old me is being able to do ANYTHING I wanted to do, when I wanted to do it!! Now, I have to accept the help of others, where I was the one always volunteering my abilities to those in need.
  • ‪I do miss most of the old me!!!! But I have welcomed most of the new me, with very few regrets.
  • I was missing for 15 years. I felt myself slowly slipping away, more and more the last 5 years though. It’s awful.
  • I understand just how you feel. I miss dancing a lot! Stay strong
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  • I miss myself so much! I just want to be able to be normal again and go to a ball game and climb up the bleachers and just walk around the yard without tripping in a hole and fix a meal or brownies without getting exhausted!
  • I miss me! I miss being able to bounce out of bed, being able to run, to dance to skip/hop/jump whatever! . I miss the reality of being able to chase my dreams. I miss me.
  • I have to believe that everyone misses the earlier version of himself or herself as they age, too.
  • Thank you for sharing. I say this a lot. I miss what I used to be able to do and can’t. I don’t even know who “me” is anymore. My identity was through my work and my child and all the things I could do for others and now I often wonder, “who am I?”
  • I am beginning to hate the new me!!!
  • I get so depressed if I start to think about original me.
  • I miss me like crazy!!!!! I say that to myself EVERYDAY
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  • I want to run, even though I was not a runner!
  • I read his blog, it’s so insightful. My every move is fraught with thought. I miss the “me” that was.
  • Great article! It’s depressing to think about what MS stole from me but I know there are others who have it worse than I do and I try to stay positive. Keep writing it helps to know I am not alone.
  • I want me back, but I don’t see that happening.
  • Just learning to accept there is a new me but so hard to let go of the old me.
  • Things that seemed so simple are now a struggle. Thanks MS–NOT!
  • I miss being me. Feeling like I can do anything. I miss having a job, and making money.
  • Wow, this is so powerful! I miss me and have been missing me for 16 years now! I don’t know how many times I say I want my OLD life back!

What about you? Do you miss a previous version of yourself? Please share with us in the comments!

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When people say, “but you look so good!”

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One of the more frustrating things about having an invisible illness like multiple sclerosis is having people tell you, “but you look so good!” It’s incredibly difficult to explain to others what it is like to live with MS, and because so many of the symptoms associated with this condition are not apparent on the outside, it seems impossible for those who do not have MS to understand. We recently posted a story from one of our community members who expressed her frustration about people telling her she “looked good”, and our Facebook community responded in support! Here are some of the comments that our community members shared!

People just don’t understand

  • I understand, I have had MS for 11 years and I hear it all the time, “you look good!” Well I don’t feel good! People just don’t understand this disease!
  • Don’t waste any more time trying to explain what you’re going through. Most people just don’t get it. If you have a support system, terrific. It takes too much energy to try to educate everyone you know about MS. Don’t be afraid to say NO. I’ve lived with MS for 25 years. In that time, most people I know have “gotten it” through my behavior and actions. Check with your local MS chapter. They have literature to explain MS. Join a good support group. It helps.
  • While these words are true most folks mean well its more an issue of them not understanding MS. They understand what they can see, that’s all.
  • I get “how are you feeling? You look good!!” almost daily. Some days I wish I looked like I felt so then maybe people would realize “oh, she’s a mother of four and looks like she feels terrible despite her busy/demanding daily routine”. Pep talks are good, and positive reinforcement is also good. Telling me I look good is pointless.
  • I always tell the people that I look so good at the outside because there is nothing beautiful left at the inside. It is rotten, so I will do everything to keep my outside pretty.
  • I just wish they could be in my body for one day!
  • That statement makes me feel like I do not have the right to feel bad, or to “sit out”. It says the person talking has a total lack of understanding of this disease.
  • It drives me nuts when I hear that! It diminishes my feelings. No, I don’t want to roll around in “whoa is me,” but heck, this is real.

People think I’m lazy

  • My family thinks I’m lazy and expects me to push through it. I’ve been a plumber for 25 years and a timber faller logging for 7 years… I could get disability, but I want to work, I just can’t over do it.

People mean well

  • I think many people mean well by saying it. The truth is, I don’t venture out when I don’t feel well. I had a cop question me using my handicapped permit earlier in the week – checking my ID against it and he said “these aren’t for convenience”. I told him that he should be thankful I felt like crap or I would tell him what I was really thinking.

I don’t feel like I look good

  • MS made me gain weight, changed my shoulder and my legs, and my eyes cross. My body hasn’t felt fit in years, so please don’t say that I look good
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I don’t mind if people tell me I look good

  • I don’t have a problem with people saying I look good. All I can say is thank you.
  • I still like to hear, “you look good,” even if it’s not true.
  • I rarely talk to anyone about how I feel because they “know exactly how I feel because they do too”. Even though they don’t have MS.

What about you? How does it make you feel when someone says, “but you look so good”?

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Thank You Readers! My One Year MSAA Blog Anniversary

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By Matt Cavallo: 

It was one year ago at this time, I started volunteering two blogs a month for MSAA. I was thinking about it today as my oldest son got ready for his first day of first grade. One of my first blogs was a back to school blog about parenting with MS, where I cried as I watched him go to school for the first time. I have shared many memorable blogs with MSAA since that time. From the one about a stranger “paying it forward” and buying my meal when he heard my MS story, to my recent birthday blog, each story is intended to provide inspiration and hope through my own journey.

My favorite part about writing the blog for MSAA is interacting with you, the readers. I have met so many wonderful people along this journey. Whether it has been through my personal website or social media, many of the readers of this blog have reached out to thank me for my contributions to this blog. I can’t tell you the tears of joy I experience from all of your feedback. It has been a pleasure sharing my stories here, and I it touches my heart that they are meaningful to you.

Thank you again for all the great feedback throughout the year. I promise to continue writing these personal blogs and sharing my stories and experience with you. Being able to connect with patients like myself makes it worth it. Together, we are making a difference in the lives impacted by MS. Take care and keep up the good fight!

Resource:
Parenting with MS – https://msaablog.wpengine.com/parenting-with-ms/

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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