Am I Lazy or Is MS Actually to Blame?

By Matt Allen G

5 min read

Most people living with multiple sclerosis have probably experienced the feeling that others think they are lazy. Or maybe they have flat out been accused! At the very least, I'm sure everyone has encountered at least one other person with MS who has shared this experience. It can be painful to feel like you're being looked at as a human sloth due to your inability to "keep up" because if you have MS, you can't help it. MS commonly causes people to not be able to do the things they once could. But lately, I've been catching myself wondering if I really am lazy.

Are people with MS lazy?

Why do people think we are lazy? Well, in my opinion, this is an easy question to answer. People tend to believe what they see. I think it's human nature. With that in mind, what do we know about symptoms such as fatigue, spasticity, pain, or vertigo? They're invisible. You can't see them, which means the people around you only get to see you "lying around doing nothing." They see the 'what' but not the 'why.'

Making assumptions based on appearances

Since people usually accept the easiest explanation as the most likely explanation, you can see why they would jump to the conclusion that you're just being lazy. I find this really frustrating, but I do understand it. I'm sure I've made similar assumptions based on appearances even when I know that you can't judge a book by its cover. That's just how our brains work. It's up to us to catch ourselves in moments like this and seek the entire picture before reaching a conclusion.

It's symptoms of MS fatigue

This all leads to one of the most challenging and irritating parts of everyday life with MS: trying to explain to people that there is something there, even though they can't see it. It's unfortunate, but this is a burden that falls on us - the ones living with this illness. It can be really hard to explain something that we ourselves don't entirely understand. But I guess it's just another responsibility that came with MS. Having to teach others around us about a disease we are often still learning about ourselves. Sometimes we succeed, but a lot of the time we don't. That is one more thing in life with MS that we don't have much control over.

But what if it's not MS?

Despite everything I know, and despite the fact that I would tell anyone else saying what I'm about to say that they are wrong, I have caught myself wondering...am I? Am I lazy, or is it really just my MS? The thought comes from a small part of my brain, but it actually raises many questions for me. Questions like, "Why do I feel lazy?" "What am I doing to make myself feel lazy?" and "What can I do to stop feeling this guilt?"

Why couldn't I get more done?

I've literally been having a hard time falling asleep at night because this question has really been weighing on me lately. I lie there thinking about everything I accomplished for the day and wondering why I couldn't do more. Why I didn't exercise. Contemplating how I might be able to get more done tomorrow. Listening to my inner-monologue debate, whether it's a matter of how or if I can achieve more. Because maybe it really is just me? Perhaps I really am just lazy?

What I know and feel don't always match

This is just one example of how MS can cause conflicting thoughts and emotions. I know I'm not lazy. I hate it when I'm not busy. I hate feeling like I wasted another day. I could never live a life of idle luxury without losing my mind. I know about and have felt the benefits of exercise, especially when I compare it to how I feel when I don't.

At the same time, I often feel like I can't keep up with my responsibilities in life. Sometimes I feel like the world is asking way too much of me, sometimes. So, at times I feel like I am lazy and subconsciously using my MS as an excuse. This all leads to the heavy feeling of guilt that's been keeping me up at night. What I know and what I feel about my MS don't always match.

Trying to make sense of how I feel

Turning back to my bedtime reflecting on the day and trying to make sense of the mess of thoughts and feelings I've been living with, the answer seems obvious. I'm currently not doing as much as I did even just six months ago. I'm not going on my morning walks, I'm not leaving the house to run errands, and I'm not exercising the way I should be. It would be easy to blame this on the pandemic, but that's an excuse that can quickly be debunked with ease. The only blame I can actually attribute to that excuse is how it "shook up" my routine.

Getting back over the hump

Just because things are different and maybe even a little more complicated doesn't mean they are impossible. I know I can still do most of those things - I'm specifically referring to exercise - even if they aren't as easy or comfortable. But because I'm not? I've found myself back at the bottom of the hill you have to overcome to feel the positive benefits of exercise. I think if I can get back over that "hump," I'll start feeling less lazy and more productive because getting the amount of work and healthcare chores I've gotten done lately doesn't seem to be helping.

Something for people with MS to keep in mind

I could be wrong, but at this point in time, I really feel like the fact that I've not been moving as much is the reason I'm wondering if I am actually just lazy. Which I'm not. But I feel like I am. I wonder if this example of conflicting thoughts and emotions is something that others have been dealing with lately? If it is, maybe we have a sort of mental/emotional health issue on our hands in the MS community? Or perhaps this is one of those "no-duh" situations that everyone already knows about, and I'm just barely catching up to this reality.

Let me know in the comments if you can relate to any of this and if you have any tips for others dealing with this feeling.

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Tommy Bellas Member
I do not consider myself lazy, my wife as well. I am mostly bedridden. Meaning it starts to really hurt if I sit up longer then twenty minutes. Despite being on Tramadol all day long. But when I can, I will get in my wheelchair and do the dishes, or help prepare the dinner. When I can that is. Most days it takes effort to even move my arms to write, as writing is my passion. Most days it takes effort to finish a chapter of a book I am reading. I try, I struggle, I scream in my head. I just want to do stuff. I just want to live my life. It won’t let me, it hovers over me and watches. It waits and swoops in and takes it away when you decide on a course of action. Be it my eyes, my strength or even my speech. Yes, even the speech. Something trying to talk is an accomplishment. Going into detail about the movie I saw last night is challenging sometimes. I don’t consider myself lazy, I have determination, I have dreams. This disease will try its hardest but I will never give up.
1. Matt Allen G Moderator & Contributor
 I totally understand, especially the talking part. But you have a great attitude!
mkwhite35 Member
I have definitely been asking myself this- well, I think/look at it differently. The question I have to ask myself- Am I truly MS tired? Or am I using it as an excuse to not do things? And I'm not someone who likes sitting around, in general (or at least I never did), but now, it's easy to lose time when I have the tv on (and I tell myself I'll watch just one more tv show so I can see what happens... Damn the easy bingeability of Netflix and other streaming sites), or I'm log into this game or that to "do something real quick" or I'll log into Facebook and get completely distracted.... And next thing I know, the day is fine and I really have nothing to show for it. Now sometimes, it's ok to do that because I'm really MS tired and need to do the things that don't involve a lot of thought our movement. But sometimes, I just need to getting going and do the things I enjoy and get some exercise in too, because it really is being used as more of an excuse/just being lazy. It isn't always easy to know the difference, which makes it harder (for me at least) and I definitely know that I would be happier doing stuff. For me, it's getting out of some bad habits, and making sure I still watch that line and not push too hard to get too many things done because that's when I'm truly, honestly MS tired and get into the bad habits.
1. Matt Allen G Moderator & Contributor
 I wonder the same thing at times; am I really tired or am I just using it as an excuse?
audra-lyn Member
definitely hits the nail on the head.
liz-sagaser Member
This is a painful reality for me as well. 7-10 days a month I struggle hard core with fatigue and mental fog...I am in the midst of that period of time right now, and it is a daily struggle to put one foot in front of the other. I am a single mom of 2, work full time from home at an intellectually stimulating job, and I loathe feeling like an exhausted dummy for 1/3 of the month. I generally make a conscious choice not to wallow in guilt about these days. I do the best I can, take it one day, sometimes one hour at a time, and on these days I have to be okay with just getting by. I don't have any more than that to give. But sometimes doubt creeps in, and I mourn the loss of..energy. Get up and go. Pep. Sharp wits.
1. Janus Galante Moderator
 It sounds like your days are incredibly full <a href='http://liz.sagaser' target='_blank' rel='noopener noreferrer ugc'>liz.sagaser</a> and what you say makes total sense. To make the choice not to feel guilty about the exhaustion and all that goes with it. Some times you just have to take it one day, one hour, one minute at a time. You can only give what you have to give at the time. I get the mourning the loss of energy, clarity of thinking and just plain being able to do what you used to be able to do. Thanks for sharing your post...Janus
2. Matt Allen G Moderator & Contributor
 I can't even imagine trying to raise kids with fatigue PLUS work a job! That is more than I can handle for sure, keep on keepin' on!
hydec Member
With or without MS, everyone has the tendency to have laziness. I use a wheelchair outside of my house, and people in my life tell me I do more than they do. But, I definitely have days that are lazy. And, just like the rest of the free world, I’m entitled to those lazy days. If anyone thinks a person with chronic fatigue, disability resulting from MS, spasticity, chronic pain is ‘lazy’, then they aren’t worthy of inclusion in your life. It’s 2020. No excuse for ANY ignorance.
1. Matt Allen G Moderator & Contributor
 Well, if they are willing to listen to me explain how MS affects people, but they still think I'm lazy? I agree. But there are lots of illnesses out there that I know nothing about so I can't expect everyone to know about MS. It's all about their willingness to listen and learn
nancyw421 Member
Matt, you nailed it. I notice that after a busy day, the next day, I just want to hang out in my recliner and veg. Then I feel guilty for not accomplishing anything. Or at the end of the Day, there is more I “should” do, but I just can’t make myself do it. But, the next morning I get it done with no problem. For me, the specific thing is taking care of laundry. My washer is in the basement. So at the end of the day, there could be a load still In the washer, the dryer or waiting to be folded. I could go to bed feeling guilty about it. Or on other days, all I have accomplished is doing the laundry and I can go to bed, thinking, at least I did the laundry. Insert any other task In place of laundry and you get my drift.
1. Matt Allen G Moderator & Contributor
 That's exactly why, some days, I write down every little thing I do. Ate breakfast. Brushed my teeth. Got dressed. Fed the Fish. "ok, at least I did SOMETHING today"
chong61 Member
Matt, Yep I am lazy, I don't do much anymore. I too lay at night trying to get to sleep and telling myself tomorrow I am going to clean one place in my house. I see cobwebs and white dog hair on top of my lamp and I promise myself that will be my goal just one day at a time. That one day never comes. I do not do any exercises, I don't have any balance unless I am holding on to something. I have my home with everything lined up I can hold on to and navigate, nothing in the middle just the walls. The cobwebs and dog hair are still on top of the lamp, maybe I can convince myself to just do that one tiny little deal tomorrow. For me tomorrow never comes. Not complaining, just happy that I can navigate in my home with a cane or walker, but tonight I will tell myself again to clean the cobwebs and dog hair and that will be my schedule for tomorrow. That dog hair never bothers my companion, it's his white hair on that lamp. If it does not bother him, then I am not going to worry either. Arvilla
hcvasusan Member
I too see a difference from pre-pandemic til now. Making the changes to get back on the hill towards progress is a huge challenge. I used to be (pre-diagnosis) very busy and I want to get some of that back. I feel some is possible.
carolina-girl Member
This is exactly how I feel. I have to force myself to do things. You are not alone.
shelleyd Member
Excellent article, Matt! I struggle with the exact dilemma (as many others with MS do too)! I remember reading in the Swank Diet book (I think that’s the one) many years ago, that MS seems to strike “go-getter” types of people. If that’s who we are, no wonder why we are also so hard on ourselves! I feel your pain!!
mlg329 Member
Thanks, Matt for another article that helps with what I have been going through. Last year at this time I was packing and moving to a place so my granddaughter could come live with me. Due to my landlord passing away, we had to move again in May. Since the move in May, I have really had issues of getting my energy back. Where I use to have a ‘lazy’ couple of days every couple weeks, it seems I now only have a couple of productive days a week. Thankfully it does seem to be getting better. Thank you for sharing because it does help knowing that what I am feeling is real. God bless and keep all of you!
tracidl Member
You have nailed my inner monolog 100%. I used to be a legal assistant and a busy mom and could multi-task 24/7. Even just a mere 7 years ago after a massive heart attack, I exercised like a mofo. Now.... I do my best. Sometimes I don't live up to my own expectations and its HARD to get past it. We have a valid reason for fatigue....but are we abusing it? I say I doubt it. You probably do waaay more than a lot of people with MS and it doesn't sound like you are in a wheel chair...sooo maybe we can be happy about that and lighten up on ourselves? I'll try if you will!
nene1986 Member
I struggle with this daily. However, I do a have both extreme ends of the support system. What I mean is I have some who will coddle me and others who will push me to push beyond my limits. I try not to give in to the coddling side. I have my symptoms but I push past them. Everything I have researched about ms tells me to keep active over everything else. That's not to say we all don't have our own personal limits. I can't do a lot of the things I used to do with ease anymore but there are many things I push through. Until my body makes me stop I won't. In my own personal experience when I was first diagnosed I had woken up numb from the waist down. I was terrified that I had damaged my back seriously. This was my first known exacerbation. The numbness, prickly, dead weight feeling lasted 3 weeks. Since I had no idea what was going on I went on leave from work for fear of irritating whatever was wrong. By the time my feeling came back I had confirmation that there was nothing that could be further damaged by my work and frankly I couldn't afford to be off any longer as this was unpaid leave. I returned to work only for the numbness to return a week later. I did not take off from work this time. I couldn't. I pushed through working for a high volume small retail store where, in most cases, I was by myself. It was hard especially when I had to be on my knees, which when you can't feel them, kinda feels like rolling on balls that are hovering above the floor..its odd to say the least. The numbness finally went away 1.5 weeks later. Now, the difference was my activity. I am no doctor but I do know that for me, pushing just a little further each day has helped me tremendously. I think the important thing is to know yourself, set your goals and stick to <a href='http://them.Yes' target='_blank' rel='noopener noreferrer ugc'>them.Yes</a>, I do have bad days and yes I take days to rest when needed. I understand my limits but I don't accept them. Besides...tell me you don't go 50 in a 45??? Lol. All kidding aside, ultimately do what is right for you. Are you comfy? Good! Are you satisfied? Good! Opinions are like a******* everyone has one. And just like a fart sometimes they make noise. Wave it away and go about your day! You got this!
eggladym1 Member
I can relate. There are days when I get a lot done. Still not as much as I used to get done in a day, but I feel good about what I was able to accomplish. Then there are those other days that if I can get my dishes done and a little exercise, then that's all she wrote. I, too, start feeling like I'm just lazy. I don't sleep continuously through the night. Some nights I'm up more than other nights, so I think that is part of the "lazy" feeling. I always think about what I want to get done the next day, and in my head, make a plan as how and in what order I want to do them. Some days, I accomplish most of the list, but sometimes I feel like I'm exhausted before I even get started. Although, according to my mom and 3 sisters, I get more done than most "healthy" people. So I try not to label it as lazy. I know there will be days I can accomplish a great many things and there will be days, my accomplishments will be minimal. As long as I can get up, put my feet on the ground, move, and get something done, then I'm not lazy. You just have to get in your head, that starting and finishing minimal tasks is what you can do today and hopefully tomorrow will be better. But don't label yourself as lazy.
whobooski Member
I was just having this sa
leap Member
I definitely understand the feeling. Ten years ago I had a full time job and three side jobs. I didn’t have any time to rest. Now I can’t work full time even when my brain tells me to push through it. I have come to terms with myself not being the same anymore. I’m taking the approach of looking at the glass half-full rather than half-empty. I am focusing on the things I am still able to accomplish, as small as they are. Like doing laundry, learning to cook, taking out the trash, tutoring my son with physics and algebra. Who knows, maybe since I’ve got PPMS I’ve gotten used to symptoms being there all the time, never getting normal again. I’ve done an effort to accept it and try to move forward. Wish you all the best.
whobooski Member
I was just having this same conversation with myself 2 days ago. I MADE myself get up and exercise and do dishes. I was wiped out and took a nap. I didn't do much the rest of the evening, and fell asleep at 9. My husband teases me about falling asleep so early even after a nap, but he understands. I too feel like I am being lazy, and questioned if I was using the MS as an excuse to just "lounge around watching TV". I am coming to the realization that I am NOT who I used to be either physically or mentally, and I am learning to deal with it day to day. When I speak to my husband during the day and tell him I am tired, he always encourages me to take a nap. Don't feel bad for the lazy days. You have a choice: enjoy the day and TRULY relax or force yourself to do the things that need doing and pay for it tomorrow! Good luck, and hang in there!
twnelson07 Member
Thank you so much for your post! You've almost summed up the exact feelings I've been experiencing the past few months. I am still relatively newly diagnosed (next month marks 4 years with RRMS). But still, you would think that I would have gotten used to experiencing so much fatigue and starting being less hard on myself, right? Hahaha... nope! If anything it feels like I'm even more hard on myself for it! However, it really makes me feel less alone when other people with MS share their experiences dealing with fatigue and wondering about things like "am I just being lazy?" But I have to agree with you! We can't help the way our body makes us feel. We can only try to do our best each and every day.
maggydoots Member
The one good thing about the pandemic is staying home and resting and not having to feel bad or explain it. I do exercise 6 days a week whether I want to or not because of MS, but mainly because I am having other osteoarthritis issues. I am scared if I don't exercise the worst will happen. Right now I am having new flooring installed. Everything had to be moved including the stuff on the walls. I look around and see the dirt. It overwhelms me that I will have to clean walls, windows, etc and put all that stuff back. Reaching out for help is not easy for me, but I may have to this time. That is keeping me awake as I have always stayed on top of the house myself. I feel your pain, but I rest when I am tired. I am over explaining it to people who don't understand or aren't interested in educating themselves about MS.
sophiekerr Member
Precisely! I feel terribly lazy and don’t do much more than watch TV every day. It’s the exception if I walk my dogs. I not only have MS, I’ve had an unlucky 2 years of other health problems as well—parathyroidism and Parkinsonism—which I wouldn’t wish on anyone. I’ve had MS for 23 years and my walking has slowed down a lot. And I get overheated so fast! Anybody else?
1. sophiekerr Member
 Thank you for the hug! I can’t walk very far either without pain in my back, so I know how you feel! Even emptying the dishwasher tires me out. Taking a shower tires me out. When I see normal people walking briskly by me or watch my sons run after the dogs, it amazes me! But I wasn’t always this way.
2. Janus Galante Moderator
 Sometimes it's amazing how often we see a post and can immediately see our own situation in it sophiekerr. Yes, the not being able to walk as far, as much and with the gait you once had and getting overheated is something I can definitely relate with. Also reading your post about watching how your sons run or people walking briskly by you...it mesmerizes me when I see people move fluidly on t.v. wether dancing, or running. My heart goes out to you for the other health problems you have... you are most certainly not alone here. We're here for you and are with you. Thank you so much for taking the time to post. It's so appreciated...Janus
msswimmer Member
Society puts a lot of pressure on us to perform at a high level day in and day out. It is important for us living with MS not to feel the pressures of how we see society wanting us to act and perform, but more importantly to be kind and forgiving of ourselves. MS can be very challenging and it is always with us everyday we awake. I have found great beauty and appreciation for life and every day now that I have excepted my MS for what it is and what it has done to my ability to function at full speed every day. My MS has really gotten me to slow down and smell the roses, and great they actually smell.
kimberlybthatsme Member
Oh my gosh I could have wrote this article myself bc this is the dialogue I've been having with myself and my husband lately. Is it MS? or is MS making me lazy? I can tell you that since my diagnosis (2016) I've looked back over the years (and those are 54 years to be exact) and I can pin point days where I felt like I've had the wind in my sails taken away. I remember in my early 20's being barely able to move let alone keep up with my 1 year old just starting to find his own momentum. I would literally think it was my diet. I would remember thinking I have so much energy today (when the norm was barely having any) and thinking what is going on, what is different what did I eat today and I would mimic exactly what I ate the for the next full week and nothing...I was right back to feeling the same lethargic way. I would just push through life (other things as well stuck out that I now know was MS but let's stick to this topic). I was born into a family where you sucked it up and worked and moved on. You didn't go to the docs or hospital unless you had something broke or you were dying. I finally started going to docs in my late 30's just to be called crazy by every single one of them, so I stopped going. I started going again in my late 40's and finally the diagnosis came and I was so excited to know I wasn't crazy. But then you hop on that rollercoaster of emotions after being diagnosed (again, another topic). I still go through days were I ask myself if I'm lazy or is my MS making me lazy or lazier or is this just MS and I am not to blame. It's so hard for us because we have to fight the stigma of being disabled, being judged by others and judging ourselves. I just have to keep reminding myself that I have an amazing life where I am able to stay home, have a husband that is very supportive and provides for me...not everyone can say that...with or without having MS . Thanks so much for this article and reminding me that yes, I do have a disability and it's called MS!
michraf1 Member
This is perfect! Explains me to a T today. Have not exercised for the past 2 days. did not even have the energy to get upstairs and change today. Just watched TV and slept. That's usually reserved for afternoons! Movement and exercise definitely help. Hopefully I will get back to it tomorrow! I plan on it anyway.
kafern89 Member
Hi Matt, I just forwarded this article to my brother and sister who probably think I am lazy because of the way I feel so much of the time. Thank you so much for helping so many!
1. Janus Galante Moderator
 Forwarding articles to loved ones can be an effective way to "explain" to them exactly how you feel when words just won't do it kafern89. Hopefully this will help your brother and sister to better understand what you have to deal with and the different ways m.s. can affect someone. Please keep us posted...Janus
birdworker1 Member
Matt- Thank you for this well-written article. Your reasoning could apply to anyone with any number of serious physical and psychiatric disorders. Most have felt lazy and many were called lazy. Besides MS, I have a neuromuscular disorder called Charcot-Marie-Tooth. I have had symptoms of this disorder since I was very young. I was called lazy, "'fraidy cat" for not liking to climb trees and such theories as to why I had trouble walking as I rode my bike too much. Riding my bike actually allowed me to keep up with siblings and friends. I was mis-diagnosed at age 12, but I at least had a medical explanation for what I experienced. Through childhood, I often stopped running with siblings, cousins and friends well before they did. Again, being invited to feel lazy. I was not correctly diagnosed with Charcot-Marie-Tooth until I was in my 40's. I was diagnosed with MS at age 60. As my body began to further decline, I began to feel lazy again. It wasn't until I began to do simple tasks around the house that I began to find my mental acuity and energy level rise. MS is far worse for me than Charcot-Marie-Tooth ever was. But laziness is not part of the equation.
jekt074 Member
I can't believe your message came up today, because I am feeling exactly the way you describe every day lately - especially today! We have been having outdoor church services for months. As of Nov. 1st we will move back inside, so today I began doing my usual indoor jobs to get ready. I am so exhausted and actually feeling painful just doing the things I always did prior to COVID. I am wondering what's been wrong with me and today I realize I have lost ground in my fight against MS. I don't know what to do. I feel like an appointment with my neurologist is a waste of time, because he usually says that fatigue is a side effect that he can't change for me. I also need tips for dealing with this. I'm feeling pretty useless. I've lost a lot of strength.
1. shithappens Member
 I feel exactly the same Maybe We just need a jumpstart to try and get bk on track hope you get to on track soon
2. nharding75 Member
 I can relate!!! I’m a school counselor and we’re wrapping up our 2 week fall break, I feel like I haven’t accomplished a thing in 2 weeks!!! I beat myself up daily because of it!!
pattyo Member
And if wondering if it's MS that makes me feel lazy isn't enough, now I also ponder is it just part of my normal aging as well? Diagnosed 5 years ago at 46 years old, a nurse who works at least two jobs for the last 15 years, married to an amazing man for 28yrs this Halloween ?(however husband has a brain injury and all the fun that goes with that), raised two loving and strong boys mostly alone for last 10yrs, along with a host of all the other curve balls life throws us. After functioning on that high level for so many years, independently, it's easy to think that it's only laziness and not MS or age that will put me on the couch without doing anything when I'm not working. Should I push myself more? I don't know. Some days it's a hard yes when others are a meek no, just can't do it. Although my boys, husband, and family tell me how "amazing" I am because I "just keep going", I don't share their sentiment. With 40 lesions on my brain, 3 cervical, and 2 thoracic I'm able to still do the work I love (Hospice RN) although not to the level I would be proud of because I see the differences in my performance where others may not. I just try to take the good with the bad most days although things are pretty screwy here in WI at the moment! Do what you can when you are able to- I guess that's my mantra right now. Just not in the community, not in a group, and not without a mask for the sake of us immuno-compromised people trying to care for your loved ones!
wookieefaced1 Member
My wife suffers from MS, and from the struggle against believing she's lazy. She often complains that the didn't get enough housework done(she loves tending to our home, somehow she finds her fulfillment in it). She's one of the hardest-working people I've known in my life. When she's able, she's up and about, outstripping me in her work pace. So I have to remind her that "we do what we are able. Anything beyond that is impossible, so don't beat yourself up over what you are unable to do in a day."
Stacy01 Member
Matt, I would like to tell you that you will eventually get past the fillings of guilt, but I have been diagnosed for almost forty years, and I also feel guilt when I don’t do things I feel that I should. My dear husband is still trying to convince me that I am the only person who thinks I am lazy. I, of course, do not believe him, because this guilt must come from somewhere, and I prefer feeling guilty for being lazy to feeling guilty for having MS. Ridiculous, I know, but real!
shasha7500 Member
Yes, I completely relate to the part that others think I'm lazy. But as to other part, do I ask myself if I'm lazy or is it MS, well I never have to wonder about that. I've never been lazy and I'm not lazy now, I know it's MS. And I completely hate it when people who don't know I have MS don't understand that I'm not lazy. It stinks all the worse because I do everything myself and now I can't. It's not fair that people can say what they want and we can't do what we want.
uga81 Member
I retired at 55. BORING! I've always had a side gig and a 40 hour job. So, I started stocking shelves at Publix, Frozen Food. At 59 I found out I have MS. You all know how your past falls in place once you know. MS is the reason I love working in the Frozen department. It is great excercise, excercise I get paid for, and with enough caffeine can do. When I get home it's a different story. I just can't do what I enjoy.
1. carrietrost Member
 I was thinking of applying to work at a grocery store myself! One of my first jobs at 16 was a cashier at a grocery store. I am 53 now , have owned my own business, been a buyer for many tennis and fitness and golf shops , have had a wonderful career that I had to quit because of MS. Every time I think I want to get a job and go back to the work force, I get in to one of my funks and I say to myself “see, this is why you can’t work!” But I keep thinking it would be so fun to work part time , no pressure, in my grocery store where they play fun dancing music! Wonder if I could actually have the energy to make it to work every day?!?!?!
2. Janus Galante Moderator
 This sounds intriguing carrietrost! Do you think you'll go for it? Is your grocery store near to where you live? It does sound like fun! Please keep us posted....Janus
seapr01 Member
I am feeling exactly the same way. I am questioning myself about why am I procastinating thing and having lack of interest in completing tasks. Now I have a better understanding.
aviendha Member
You have an important point. It’s a cycle in the bad way. I am a therapist I can see my pattern but still I am stuck with it. Constantly overthinking about what I could have done, why I didn’t do or if I could do better way. We all have stereotypes in our minds about ‘what must done’ so we think we have to fit in this stereotypes; about being a partner, employee, parent... we can’t fit in our standards we are not perfect. This is the main conflict I think. We had hopes and dreams and plans about life but it didn’t work out that way. I can’t worry about if others believe me because I am dealing with myself! We have to start at this point I think we have to redefine perfection.
1. Matt Allen G Moderator & Contributor
 I think we have to learn to set realistic expectations for ourselves. I would love to be a mixed martial artist, but that's not in the cards life gave me. Therefore, I can't beat myself up over the fact that I can't keep up with a mixed martial artist. Now scale that concept down to more realistic instances. I would love to do many of the things my friends do, but those things just aren't in my cards. I have to, I think, learn to play the cards I do have the best I can.
2. aviendha Member
 You are right. This site helps a lot. Sharing heals us. We are challenging so many ways but also we all are special. Because we know exactly what the life means what the health means. If we look at the right point we are stronger than healthy people because we try to change adjust adapt... realize what life really about. And sharing our stories grows our spirit. Thank you so much!
stephanie1119 Member
I liked the article about am I lazy. I feel as if I am because I can only seem to get one or 2 things accomplished on most days. A grocery shopping experience wears me out. Have started using online options more and I love it.
1. Matt Allen G Moderator & Contributor
 I can't always accomplish much on any given day either. On those days, I write down everything I accomplish throughout the day, even things like "brushed my teeth". That way, at the end of the day, I can see that I actually did a lot more than I thought I did and then, hopefully, the next day I might be motivated to try to make today's list just a bit longer than yesterday's.
2. carrietrost Member
 Matt, You are so smart to write down every “little” thing you accomplish. Anything is a milestone for us now. I think accepting our “new normal” is the biggest challenge. Basically, I feel none of us have. In our minds, we all still view ourselves as the vibrant, youthful, pre MS individuals we all were. We just need to accept we are still those fabulous people with a slight change. Once we accept it, and truly accept it, we won’t need to feel as though we have to make excuses or feel guilty about feeling lazy. We will know that this is how our bodies are now. They are beautiful and need more beauty rest! My husband tells me all the time to just relax. I am constantly apologizing to him for not feeling well and having to rest all day (or 3 or 4 days) he says stop having so much anxiety about it and relax. Watch movies and relax. If I can honestly accept it , accept this is what my life is and not feel like I should be out there running 5 miles like I use to , or working 40 hours like I use to, keeping the house clean , etc... then my life will only get better. I don’t have to make excuses for anyone. If there is someone who doesn’t understand and they are going to judge me, let them . It doesn’t matter. I am just so glad that you made this post because now I know I am not alone !!!! We all are feeling the same way.
james-a Member
Good story I can relate to past and present. I have SPMS diagnosed in 1999. I spent the first nine years in a wheelchair, didn't do much of anything. One day I felt the urge to get up off my backside and do something. It was slow going at first but every day I did a little more to where I am now. It seems the only time I sit is when I'm driving or getting ready for bed. I cannot idle for thirty minutes. I am restoring to vehicles, woodworking, and working on my house. My daughter was diagnosed last April with RRMS one week after her 20th birthday, I was 45 when I got my diagnosis. All my daughter does is sit around doing a whole lot of nothing as I do too much of everything. She is where I was back in 99. This leaves me wondering how she sees herself when she compares what I do to what she does. I see my daughter as a very intelligent beautiful young lady with an excellent future ahead of her. To others, I would think she appears to be lazy and complacent. I don't look at her this way. My daughter like me had a curveball thrown at her that turned life upside down. MS affects us all differently. I know that what I am doing now can be taken away, I'm 65 I had a good life but for the sake of my daughter, I hope it never happens because it will affect how my daughter sees herself now and what the futurer may hold for her.
1. Matt Allen G Moderator & Contributor
 I think that so long as she knows that YOU understand that everyone living with MS is different, she won't feel that kind of guilt. So long as she knows that YOU are not holding her to any kind of standards based on what you can do today. Then, on days where she inevitably feels down about this, just take some time to remind her that it took you years to get where you are. For her? It could take way less time because, again, everyone is different. I know for me when someone expresses understanding of my situation, I feel a lot better. Way less guilty. Anyway, I'm not a father, so I don't know if any of that even works. I can only tell you how I feel based on what I've been through. Keep on keepin' on!
30cqlg Member
I feel the same way I wonder if I'm lazy. I am surrounded by everything that I always wanted and because of circumstantial depression of not being able to do the things you think you can do when you're sitting around thinking about it. The story changes when you try to do what you thought you could do and it ruins your day. MS just sucks in so many ways. Others will never understand. Sometimes I wish I could what someone experience one day of what we go through. People's attitude would change then.
1. Matt Allen G Moderator & Contributor
 I would be lying if I said I never found myself wishing the same thing. Just ONE DAY would be all it takes to change how anyone thinks. Just ONE.
2. graveyardwalker Member
 If I may quote The Joker: 'All it takes is one bad day to reduce the sanest man alive to lunacy. That's how far the world is from where I am. Just one bad day.'
stephaniect Member
Hi Matt, Well said about fatigue aka “ being lazy”. On top of everything we gotta go through in ms, it’s easy to over look for me. I’ve had ms for just over 10 yrs now and I’m now seeing how it’s affecting me working and can’t gather my thoughts finish a book a started 5 yrs ago. When I hear that “lazy” comment I ignore it because they obviously don’t understand what fatigue is.
1. Matt Allen G Moderator & Contributor
 I usually try once to briefly explain that it's my fatigue but after that? If they still don't get it enough to cut me some slack? I just ignore it too because I literally don't have the energy to try to explain again and again until they understand.
graveyardwalker Member
THANK YOU so much for writing this. It was timed EXACTLY right for me!! I mean...don't get me wrong...I go through this sort of thing ALL THE TIME in my nearly 2 decades of MSing. But this week in particular has been INCREDIBLY stressful. I have about 8 or 10 **MAJOR** things that need to be done...and yet I see the days just floating by, one after the other, and deadlines keep passing, and things aren't being done! I feel the same way, that people just think I'm lazy, or irresponsible. It's hard enough for my FAMILY, who lives with me, to understand the kinds of fatigue and particularly the *cognitive* issues I've been struggling with. I feel like the other people that I'm supposed to be doing things for are maybe just humoring me by saying "they understand" (how could they possibly when *I* don't?), & I hate having to preface everything with "I can't --XYZ-- because I have MS". :-/ I swear sometimes saying it just makes me feel like a leper. It's been SUCH a hard concept to put into words, and I appreciate SO MUCH you writing this, and it being published by a major (& my favorite) MS publication!! I feel like it VALIDATES my feelings & behaviors so much and it has helped to lift some of my *own* guilt. I read it to my family & I feel like it gave them more to think about...like seeing it all in a different way. I even added to the description for them: "It's like I'm telling you that a ghost just closed that door over there. You can't see it. *I* can't see it either, but I just KNOW that it was a ghost. I can't prove it, of course. (But I know there are people out there who believe me & feel the same way!) Your natural thought is to find the logical explanation. 'It must be some trick. Somebody's attached a string to the doorknob & is pulling it.' But it's not. It's a GHOST." So now, besides "spoons", I have a new word I can use to explain my inexplicable behavior. It's my ghost again...keeping me from --XYZ--, or making me fall asleep on the sofa after taking RIDICULOUS amounts of (prescribed) meds to keep me awake + coffee + a good night's sleep, etc. Now if I could just find an exorcist...
1. nancyw421 Member
 I love that line, now if I could just find an exorcist.
2. Matt Allen G Moderator & Contributor
 THIS. THIS is EXACTLY why I write. I'm so glad you feel validated, a little less guilty, and that you found it worth sharing with your family. You've inspired me to keep writing. Thanks!
markt Member
Hi Matt, What you have written is something I have been struggling with for a long time and its not going away or getting better. I was always the person that could do the work of 5 and even make it look easy because to me it always was be it computer related or hammer related I got things done. nothing was beyond my ability. Now after almost 9 years with MS none of this is true, as far as what I can actually do, but what I think I can do is still fighting with my, why can't I do brain and its truly something that keeps me awake and is depressing for me. I have a wonderful supportive wife and family that will say great things about the small project or whatever I did happen to get done ,what I would say is 10 min of work, I find myself sitting around thinking of all the things I feel I should be doing but unable to do even 10% of it. I have always pushed thru things that were in my way but now I don't have any push. Fatigue is no joke and is invisible as the vertigo and pain thats always there. All of us with MS have many things going on inside at any given time and its so hard to explain it to someone else as many have written in this site about. But it is something that we must deal with, I don't have any answers for this as everyones different but for me I am trying to reshape my thinking and trying to dwell on things that give me JOY or at least make me happy and not think about what does not. And if you ask hows that working for me ...well I would say I stink at it but I am trying . thanks for the great article Mark
1. Matt Allen G Moderator & Contributor
 I think I would say the SAME thing. I TRY to focus on what I can do, and I try to do those things 120 percent, but still, my mind always ends up switching back to thinking about what I CAN'T do. How I CAN'T do more. So like you, and many others I'm sure, I'm trying to overcome that. I think it's just a learning PROCESS, not something that changes like the flick of a light switch. Glad you connected with the article!
seaattle Member
Such a great topic. On my good days I overdo it and end up causing my own bad days. On my bad days I push myself to do something, anything to have some sense of accomplishment and make sure I’m not being called lazy. Not completing daily household chores is never an option, at least not due to MS. A rush of traumatic childhood memories on punishments, both physical and emotional, overtake me and drive me to do them no matter the pain or weakness level. So many emotions of guilt, shame, self loathing fill my mind on days I do the bare minimum of household daily chores alone. I’m afraid to be deemed useless and tossed out like I was as a child, so I push and end up making the bad days cause worse days and a vicious cycles continues until I get a few good days to catch up. Then on the next bad day, I repeat the cycle again. My therapist hasn’t helped. I hope someone here has an answer that would help, even just a little. Living day to day with these fears has become so overwhelming, especially since the pandemic.
1. Matt Allen G Moderator & Contributor
 I wish I had the answer, but I'm kind of in the same boat. Even if no one is treating me like I'm lazy or useless, I still hold myself to such a high standard because if I lie around doing nothing? I can't help telling myself that I'm lazy! I get so overwhelmed with guilt brought about by myself. I am often my own worse enemy.
2. Matt Allen G Moderator & Contributor
 You are absolutely right, but you also highlighted one of the main reasons knowing what you said to be true isn't enough for me. "We all fear that we will come to a time where we can’t push it any longer." When I'm doing nothing all day I wonder what I'll think when the day comes that I literally can't do certain things. I imagine myself looking back on those "lazy days" and think, "wow Matt, you COULD have but you didn't... I wish I had that option now"
jamiemol Member
I was diagnosed at 15. I am 39 now. For years I could not work more than 10 hours a week. I used a cane to help walk. I have 4 kids and was a stay at home mom. My husband worked. 3 years ago I started Ocrevus. The cane is gone. I have been working full time plus since last December. 2020 has been rough. I am a home health aid. No one wants to work so I have been working 65+ hour weeks. I refuse to go down though. So I push harder. When I get tired I just tell people that I am lazy. Easier that way.
1. Matt Allen G Moderator & Contributor
 Wow, I'm glad Ocrtevus has worked out so well for you, amazing! Just be sure to not push yourself TOO hard, as I'm sure you know, that's such a common "mistake" for any of us living with MS.
mseverchanging Member
Matt, 48 replies and going. Think you nailed this one. Society as we know it, has put us in little boxes saying we have to accomplish everything in that box, and on the timeframe. My mind has many of these boxes still filled with non accomplished items. Not lazy, just can not do. A 6 ft piece of plywood, with the help from my partner was replaced on our house. A simple task, but hours to do, and then paint. That was our day. I think of a contractor that could of replaced all panels needing done before 10am. In my mind I thought we could do more, but good we stopped when we did, just pure exhausted, or fatigued. Yes a MS item, not related to testosterone, or anything else I can think of. If we overdo something, it can take weeks just going by, before simple items gets done. JoeY
1. Matt Allen G Moderator & Contributor
 Oh man, yes, that is the worst. Feeling like you have to meet certain expectations from society. I know they can't apply to everyone because some of them have- random example -something like MS. But still, I can't help holding myself to those standards.
punktomom Member
Thank you! I think we all need to hear that we’re not the only ones feeling like this... at least I do! So hard to deal with not feeling lazy on those extremely low energy days. Well written, Matt!
1. Matt Allen G Moderator & Contributor
 It's hard to not feel like we are the only one, so I'm glad this post helped show that we aren't!
mark24p Member
I'm right with you. I wonder if I'm using my MS as an excuse for being lazy. I can't always see my motives. This shows me that my brain isn't functioning as well as it has in the past.
jamiemol Member
I don't know. Sometimes I think I am just lazy.
carrietrost Member
You described me exactly ! I just wish I knew how to break the cycle of “laziness” quickly. Sometimes it can take weeks to break out of the “funk”. If anyone has ideas please share!!!
1. Matt Allen G Moderator & Contributor
 I would love to hear tips and advice as well, thanks!
carrietrost Member
I felt pretty good yesterday and took my daughter shopping for a new maternity outfit and then she had a gender reveal party last night. I was home pretty early and didn’t even have any alcoholic beverages . I still couldn’t get out of bed today and do a thing !!!! It is pretty depressing that you can’t really function after one evening of social activity.
1. carrietrost Member
 Hello! Baby Girl!! Due Feb 19. Very exciting since it’s the first grand baby.
2. Janus Galante Moderator
 What a wonderful little Valentine to look forward to carrietrost. I'm so excited for you, you must be over the moon! I'm hoping that you've started to feel better and that some of that energy is back! Wishing you a great day today..Janus
greatexp Member
I'm so glad you wrote about this. Reading all the comments helps me realize that we are not alone. For me, the worst part of the "laziness" is disappointing my husband. He love to invite people over for dinner, but has virtually stopped because he knows my reaction will be one of dread. Will I have enough energy, mental and physical, to make it through the evening and to do all the cleaning and cooking beforehand? Will I be able to keep up with conversations? Will I mix up words and look like an idiot? Will I need to go to bed at 7:30 and leave him with the guests? Though I know he understand as best he can, he is still disappointed that I can't do what I used to do - working nonstop all day until crashing at night. He used to think I was Wonder Woman, but I'm not there anymore. I know friends and family can understand somewhat, but I always feel they must think I am lazy, even when I try to explain. MS has certainly given me much more empathy for others with hidden symptoms and chronic or serious conditions, but I may need to work on understanding for myself. Thank you for your writings which always inform, challenge, and make us feel less alone.
not found
I can relate, Matt. I have felt guilty in the past when I haven't completed a task or met my own expectations because the pain in my back is telling me I need to rest. Also, I have felt lazy for not doing anything outside, because even though I feel great, I know that going outside in heat and humidity will set me back for days. We have to keep in mind that our body is always using and in need of energy to keep us healthy, heal damage, etc. Giving your body a break is good for you, not being lazy. Having MS has forced me to change my expectations of myself - what to do, how much to do, how to do it, when to do it, etc. - to be able to let go of guilt and fight depression. Anyone who hasn't lived in your shoes is wrong to criticize. I was diagnosed 17 years ago. The past year has been worse and I haven't been able to work since February. Soon I'll find out if I'm in the "disabled" category. It's hard for me to accept. I bring this up to tell you that counseling has helped me to look at my life differently - not as a failure or not trying hard enough. One last thing...when I have come out of a relapse and know I could exercise but just don't feel like it (I'm as human as the next guy), I lower my expectation to be able to get started. Maybe tell myself that exercising for 5 minutes instead of 30 will be enough today. And in my world, dancing in the kitchen with the radio on counts! You're not alone. Be good to yourself and keep moving. 😀
1. Matt Allen G Moderator & Contributor
 This is a great example of advice that I would give people in my position despite the fact that I might not be able to totally follow it myself yet. I KNOW it's true, but for whatever reason, I still struggle with it. Thanks!
trea Member
i think you just wrote my blog Thank you for your words. The sitting around thing is something I'm not good at. I don't like TV but I love to read but haven't finished a novel since spring 20. 🙁 Time for me to find a book and get lost again
1. Matt Allen G Moderator & Contributor
 I used to read all the time, but MS has greatly affected my attention span and the visual symptoms don't help either. I'm trying to slowly start reading again but it's tough.
2. colette4 Member
 Matt - I was/am a reader. I used to love to read all the time. Besides, the fatigue, my eyes are having trouble focusing and it just seems hard to read. Makes me saf.
kimmyk Member
Not one person has ever told me I'm lazy, quite the opposite actually. For years, and even occasionally today I am my worst enemy by feeling guilt for not getting everything done. After 10+ years with MS I now realize there are actually very few things in life that MUST be done, if the house gets dust bunnies so be it! If friends or family have an issue with my speed then they can 1) do it for me or 2) go pound sand.
judyvarley Member
Anyone with difficulty reading please go to some of the sites where you can download Ebooks which is at least preferable to not reading at all. I have been an avid reader since childhood starting with reading cereal boxes. I just had surgery on both eyes to remove cataracts and am waiting for the final release from my eye doctor to get glasses. I have astigmatism that is so bad that I still can't really read yet. Ebooks takes away the pain of not reading.
bkboo Member
Yes, I feel lazy.. blah blah blah...I also question that to myself ...pfft..but when I say that out loud its absurd for me to think. I am not...I dont do as much as I use to albeit age, MS, depression, etc so exhausting! MS is a hard disease to figure out and I have it so Im sure its confusing to others. But I have to remind myself who gives a S...I am not a lazy person. I let myself be and stop judging myself and that can take work on my part. And what others may think...and you know its really none of my biz. I have to remind myself. Can relate Matt!
1. Matt Allen G Moderator & Contributor
 You are right. Ultimately? It doesn't matter what others who don't understand think, just what YOU think.
kristier1979 Member
Soooo you mentioned that the pandemic shook everything up. Yus!! I stopped trying to explain this to anyone. The pandemic shook my life and dumbed it upside down. It took me years to get into the routine where I was able to feel semi normal being on SSDI & not working. Then the pandemic! My husband is home and everything is you are right SHOOK UP. My routine is non existent. Makes me feel horrible. I hate all of it. Thank you for writing this 
1. Matt Allen G Moderator & Contributor
 I hate that we can relate but it does feel "good" to know it's not just me... I wish I knew what to say, but I still haven't figured out how to escape the pit of quicksand this has all made me feel I am stuck in. All I can say is what you just said; I hate all of it. Keep on keepin' on though, right?
lily Member
After reading your story and so many of the comments, I can relate. I keep saying “there’s too much gravity!” Everything I do feels exhausting. I feel like I move in slow motion, and that’s become my speed. I’ve learned to live with it, after 13 years since my dx. If I took a shower AND washed my hair, I know that’s going to take a lot out of me. If I can do anything else that day, maybe a load of laundry, maybe clean the kitchen sink, that’s a bonus. I’ll look back and say, “I had a productive day, and I’m proud of what I did.”
1. Janus Galante Moderator
 Lily reading your reply when you said "there's too much gravity!" brought this image to mind. <a href='https://multiplesclerosis.net/news/fatigue-survey/' target='_blank'>https://multiplesclerosis.net/news/fatigue-survey/</a> It was a survey that the editorial team did in March, but I just remember that the picture really was worth a thousand words! I am SO glad to read how you go about your day and end up being proud of the things you accomplished! Thank you so much for your post...Janus
2. Matt Allen G Moderator & Contributor
 Yup, I totally get you. As far as feeling like "there is too much gravity"? I feel like, upon waking up, gravity is close to normal but as the day goes on, hour by hour, the gravity is increased until I have to sit or lie down. At that point, it's like my body is made of lead. I feel so heavy!
rene2 Member
Right now for the past year I have the same exact problem . I was always a mover and went to exercise 3 times a week . I even walked every day . Now I sleep longer and I don't do very much . It's very frustrating . I'm with you, confused.
1. Erin Rush Community Admin
 "Frustrating" pretty much sums it up perfectly, <inline-mention user-id="3991917" username="rene2"/> ! I am sorry MS has drained your energy levels. Please know you are most definitely not alone in this! Best, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.
2. Matt Allen G Moderator & Contributor
 Yeah, to make everything I said more frustrating, it's like I need so much more mental rest than I did before. I used to be able to get so much done in a day and now it's like I can only get a few things done before my brain is totally burnt out making me want to do... nothing...
kimberlybthatsme Member
<inline-mention username="Matt Allen G" user-id="4043727"/> I have been grabbling with this for a few months now. I literally say out loud, is my MS making me lazy? I know I have MS, I know I'm progressing but I still feel like my limitations are making me a lazy person! My old self could run 100 circles around me now. The days I literally do less than a few things during the day, I feel useless and lazy. I think people who lean more toward an A personality think more like this than any. It's hard going from 100 mph to 2 mph.
1. Lori Foster Member
 It's a hard adjustment, for sure, <inline-mention username="kimberlybthatsme" user-id="3958502"/>. But it's important to listen to you body and give yourself a break. In everything you do, you are working so much harder than most. Sending lots of gentle hugs your way. - Lori (Team Member)
CommunityMember3334 Member
This is so true. You are not alone. Ive been told that I dont need ALL the medicine Im taking, you still sleep 12 hours and take a nap, so its not working. Ha! I just love to sleep all the time, can't go play with my grandkids, go shopping, keeping a clean house, go out to eat, cancel invitations that I've been looking forward to for weeks...yeah thats fun!
1. Lori Foster Member
 How frustrating, <inline-mention username="CommunityMember3334" user-id="5839359"/>. Wouldn't it be nice if they could live just one day in your shoes? Gentle hugs! - Lori (Team Member)
CommunityMember3334 Member
Yes that would be delightful.
LoraHigginbotham Member
This is exactly how I feel. So glad you shared this. I keep telling myself I can do more. I used to do more, why can’t I now? I recently have had a major amount of stress and I kept pushing myself. I would take a day to rest then right back at it. Guess what? Yep I am in the middle of a full blown exacerbation. On top of that I have a sinus infection that doesn’t want to go away. I’ve got to do better about listening to my body and not worrying about what others think about me. 
1. Lori Foster Member
 Hi <inline-mention username="LoraHigginbotham" user-id="3983588"/>. I hope this exacerbation is short-lived and that you can finally kick that sinus infection. Has that stress factor been resolved or will it still be there when you recover? Thinking of you and wishing you the best. - Lori (Team Member)

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