My Muddy Multiple Sclerosis

My Muddy Multiple Sclerosis

Attempting to describe what living with Multiple Sclerosis is like can actually be a very difficult venture. Cognitive problems, limited knowledge about the disease among many people, and the invisible nature of many of our symptoms all contribute to this difficulty. It’s no wonder we love to say that “you don’t get MS, until you get MS”. This struggle to provide a way to relate our experience to others is always on my mind. I’m always looking for new ways to describe my experiences with this disease. Lately, the word that comes to my mind a lot is “mud”. Living with MS is like living with mud, everywhere. Mud in my brain when I’m trying to think or talk. Mud all around me when I try to move my body. Mud always sapping my energy as I try to muddle through it. Mud, and on some days, even quicksand, seems to be a great descriptor for numerous areas of life with MS.

Splattered with mud

Trying to move through thick, gooey, oozing, cloudy, sloppy mud seems like a pretty accurate comparison to me. The ratio of dirt to water may vary each day, or even each hour, that we try to navigate through it, but it’s always there. No one else can see or feel this mud, but I assure you, for someone with MS, it’s very much present and in our way. We love to use the phrase “cog fog” to explain some of our cognitive dysfunction. I’ve always felt that, while that’s a great description, it lacks a bit because fog can disappear quickly. For someone like me, it’s more like my brain is trying to move and see through mud. Even when I do have some moments that are clearer than they were, my brain still has some mud on it. Mud doesn’t clear away as easily as fog does, it gets everywhere and sticks around. That’s exactly how I feel, even when my brain does seem to be functioning correctly (or rather, more correctly than before). My good moments, my times of “clarity”, are never really clear, they’re never what they were in my first decade and a half with the disease, and most certainly not what they were before that (I suppose this is a different kind of “dirty” thought). My cognition is always splattered, in some way, with mud.

Feeling submerged

Physically, using mud as a descriptor really works. Many people have had to plow through thick, heavy, unforgiving mud at some point (or at least have an idea of what that is like). For me, it isn’t just walking through mud (though that is certainly part of it). Some days, it feels like I’m submerged in a giant vat of mud. It almost feels like the air around me is mud, surrounding me, never letting me go. Every movement, no matter how minor, is impeded by a dense and heavy mixture of soil and liquid. Simply trying to pick up a glass of water can feel impossible when struggling through this ever halting stew. I think that’s something people don’t think about, it’s not just my legs, it’s everything, my arms, my hands, some days, even moving my head is incredibly difficult.

It slows us down and drains our energy

This life spent trudging through mud, no doubt, has an impact on our energy, on our fatigue levels. It’s no wonder that it seems to take us so much more energy to accomplish even the smallest of tasks. Moving through mud will always take more energy than if it weren’t present. For people with MS, that invisible mud is always there, trying to slow us down and drain our energy. The next time someone with MS says they’re tired, think of that: try to imagine if you went about your full day, but did it wading through mud, with every single action you took. I think that gives a better idea of what our fatigue is like.

So, yeah, for me, living with mud is a great way to describe my life with Multiple Sclerosis. Thinking, moving, doing anything is a bit harder than it used to me. Living my life is now is now akin to navigating a massive, thick, gooey, wall of mud. Somedays I get through it, other days, it’s just too thick and I have to give up and hope to fight another day.

Thanks for reading!
Devin

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Comments

View Comments (44)
  • Doobek
    10 months ago

    Thanks for sharing Devin. I was diagnosed with MS in 1991, so been living with it several decades.
    I can relate to everything you’ve said about fatigue and relating it to mud. Great comparison by the way! Wish I’d of thought of it. lol Couple comments. One is I was a Psychiatric and Mental Health Nurse with National Certification in it. The psychiatrist would often refer to a patient’s thoughts as being lucid. I thought about that and how others could label ppl with MS as not being lucid and mentally stable. Is somewhat frightening on one hand. Another comment would be to say, for me, I’ve often wondered “what if” I never returned to some level of normalcy where mud and fatigue are concerned?

  • joannmaxwell
    11 months ago

    I always so appreciate how you explain every day challenges. I love the imagery of the month. It is so right on! But some days it feels

  • joannmaxwell
    11 months ago

    That didn’t come out right. I was going to say I love the imagery of the mud. And then I was going to say but some days it feels like quicksand!

  • Devin Garlit moderator author
    11 months ago

    Thank you joannmaxwell! Very much appreciate it! And I very much agree, there are many days where it’s like quicksand all day!

  • Steve1
    11 months ago

    Your article certainly rang true for my own existence with Primary Progressing MS. I forwarded it to my wife and daughter for them to better understand why I am the way I am. It perfectly described what I deal with. It was such a relief for me to be able to do that! Thank you so much, Devin.

  • Devin Garlit moderator author
    11 months ago

    Thank you SO much Steve1, nothing makes me happier than to hear that someone has been able to share something I wrote with a friend or family member to help explain their own situation. That’s 100% why I do it!

  • Debrahoff2
    11 months ago

    Been meaning to respond to this sooner but the mud in my brain was preventing the words from forming. I so relate to all these analogies about feeling like I’m walking through mud, quicksand and on good days, water. So tired of hearing from friends without MS, it’s normal to forget names and thoughts and to feel stiff as we age. People without MS simply can’t relate which can be such a frustrating and lonely place. While I continue to try to stay positive when the lights go on and I have a good day, the reality is there is way too much unpredictable mud, and I’m so glad that I have this group so I feel like I am not swimming or drowning in the mud all alone. Thanks for starting this conversation Devin!

  • Devin Garlit moderator author
    11 months ago

    Thanks so much Debrahoff2! I completely understand that frustration, when people are dismissive of symptoms. Just one more reason I love getting the conversation going here, with others who actually get it!

  • NLG30
    11 months ago

    These are great descriptions with both the article and comments. Mud and a suit of sand are so true to me…as I struggle to stay on my feet trudging through quicksand laden with cinder blocks. It is so tiring to keep pushing, but that’s what I do. The tinnitus in both ears, the flickering distorted eyesight, pain throughout my body, burning like fire and ice, bladder and bowel dysfunction, balance and barely walking very slowly with a cane. Fatigue is always there, exhaustion from pushing through my day. This is such a fight. The only ones that get it are the ones that have it!!

  • Devin Garlit moderator author
    11 months ago

    Thanks so much NLG30! I love pieces like this because in addition to my own description, others will often share theirs, which is exactly what I hope for when I write it. Not only the new ways of describing it, but also the camaraderie and realization that there are many others that actually do understand. That’s something we don’t often see.

  • AnywhereOutOfThisWorld
    11 months ago

    I completely agree, invisible mud as someone commented. As I sit here, I have as usual the tinnitus (ringing in my ear) & I look back on my day. It took just about every ounce of energy I had to in hot weather go to the grocery store and shop. I noticed as others looked at me parked in handicapped parking as if why is she there. Their judging eyes never bothered me really but of course I notice it. No one knows what we deal with, they don’t hear in my case the ringing in my ear, nor can they tell how tired the event of shopping is for me. They don’t know the struggle, until they see us using a cane, walker or wheelchair. Even then, they still don’t know all of it. We are all warriors I believe, in our own ways. We do what we can, through mud or sludge we trudge onward. In many cases (as in my case) people in our own families may not even take our Ms seriously. My own mother has mocked my Ms on many occasions and she is a retired nurse. I have had other family members basically cut off contact with me when I told them of my diagnosis last year. Still despite all that we endure we trudge on, it’s a storm, a fog, some days a hurricane, other days a monsoon. If those who doubt our struggles could even for one days walk a mile in our shoes, they might have a chance of understanding. Until they we will remain silent warriors, invisible may be our Ms, not invisible is what it is to each and every one of us every day.

    “She was suffering so keenly that she wanted to arraign the universe at the bar of her pain.” – L.M. Montgomery (from her book ‘Emily Climbs’)

  • Devin Garlit moderator author
    11 months ago

    Thank you so much for that AnywhereOutOfThisWorld! There is a special connection for those of us with this disease, particularly those who have had it a while. We are the only ones that can really understand what our life is like. Our disease comes with an added and extra punishment, that few outside of us can understand what we go through. It makes every struggle, even harder than it should be. Hang in there and thanks so much for reading and commenting

  • Sue
    11 months ago

    Great description of the torture of M S. I have read so many people who put a bright spin on a devastating disease. M S slows us down. We make noise if we can walk. Our eyelids get heavy and our vision gets blurred. Food doesn’t have that zing and often slips off the fork and leaves a guilty trail.
    M S has not made me appreciate what I have left. It makes me angry that every day the trudge, the mud gets harder and sloppier.
    Thank you for sharing the foul, dirty truth, rather than a sanitized lie.

  • Devin Garlit moderator author
    11 months ago

    Thanks so much Sue! I think most of my writing steers clear of the bright spin. There is always so much of that out there. I don’t look at my view as negative, just “real”, that’s what I strive for anyway. I’d always rather read something real, something that lets me know, “hey, this person gets it”, that something designed to uplift me. Just knowing someone else gets it, is uplifting enough for me.

  • cantstopwontstop
    11 months ago

    Devin,

    Love the way you wrote this. Describes a lot of feelings of the present, past, and maybe the future. So many of us can connect on these terms. This is somethint I needed to read today!

  • Devin Garlit moderator author
    11 months ago

    Thank you cantstopwontstop! Appreciate you reading and taking the time to comment!

  • swampdoctor dave
    11 months ago

    Devin, you have come up with a great analogy to how it feels to have MS. More people can relate to the idea of slogging through mud easier than trying to figure out what cog fog means. If you don’t mind, I am going to start using your “mud” idea to explain my MS condition next time I find the opportunity. Thank you for the very “unmuddy” thoughts on our condition!

  • Devin Garlit moderator author
    11 months ago

    Thank you swampdoctor dave! Appreciate it!!!

  • Jan
    11 months ago

    Devin, I appreciate a good read and will therefore stick with this blog. Like your article and your very apt analogy to mud. I agree

    And I may piggyback on that one and call what I deal with lava because my feet typically burn. And it appears that lately I can add on edema because of lack of walking. So I hung on dearly to a cart at the store today. It was an accomplishment not being in a Mart Cart. But also daunting in showing me just how challenging this has truly become.

    Anyway, nice article. And in this life the value we provide to others can have important impact. Thanks.

  • Devin Garlit moderator author
    11 months ago

    Thanks so much Jan! I can certainly echo that lova analogy, my legs often feel like they are on fire, so that very much works for me.

  • Jan
    11 months ago

    Thank you for your reply. And although everyone truly is different in what works, and that is okay, for me personally I am not part of a support group, on purpose. I tried one a few years ago and while the people were very friendly, I’m just not of the mindset for that and instead appreciate reading helpful MS-related items such as this blog. In it, I think you impart positive value.

  • sevensix
    11 months ago

    For us former military fellas it is mud, blood, and the crud that motors us through the goo.
    Military service provides the necessity for discipline, the development of situational awareness for survival in battle. MS is the creep that sneaks up behind you in the night, or the cowards who flanks you unseen, perhaps direct confrontation head-on. It’s vital to have a buddy to watch your “six” while waltzing through the mud giving us the advantage of the proverbial high ground. Once you are at the top stay there because everything else is down hill from there. Did MS topple you from your lofty perch? It did me. MS is a mean enemy, cunning, ruthless, also claiming the high ground, constantly picking a fight with you. I’m good at fighting; I don gloves and do it everyday.
    I’m new to this site. From what I have read folks here are fighters, geared for resolve,
    tough to the core. Good people, you. What a privilege to be associated with great folks with a common cause fighting the good fight!
    -sevensix

  • Devin Garlit moderator author
    11 months ago

    Thanks so much sevensix! Thanks you for sharing, love it!

  • Azjackie
    11 months ago

    Thank you for the piece and to everyone for their acknowledgement. No one in my local support group suffered these experiences. I thought either I have something other than MS or I was losing my mind. Even my neurologist looked at me rather than speaking. Now I understand he was only listening to understand not document a suggestion for my facility enrollment.

  • Devin Garlit moderator author
    11 months ago

    Thank you Azjackie! I think your experience is all too common. The variety of symptoms among those with MS can make it difficult to find people (even people you would think would) be able to understand.

  • bethybright
    11 months ago

    I always used wet cement as my go-to analogy for most of the same reasons. When it is no longer wet and I am stopped in my tracks, then I need to chisel myself out and watch as newly poured cement starts being poured in all over again and the cycle starts over. I like your mud analogy too! Nicely done, Dev.

  • Coolcow
    11 months ago

    I use the wet cement imagery, and then it hardens to blocks around my feet.

  • Devin Garlit moderator author
    11 months ago

    Thank you bethybright! Cement is another fitting example, I love it!

  • 7ibi2m
    11 months ago

    Spot on comparing to mud! For me, I also would like to add depression to that. It’s a never ending merry-go-round for me. A tough MS day can quickly lead to feeling helpless n worthless. Depression loves hopeless n worthless n before you know it I’m on the proverbial horse that will never win the race. I don’t think people can understand until they have ridden that fake pony around n around.

  • Devin Garlit moderator author
    11 months ago

    Thank you 7ibi2m! I 100% agree about depresion, that is very much part of this for so many of us.

    https://multiplesclerosis.net/living-with-ms/its-time-to-get-real-about-depression-and-suicide/

  • tfs
    11 months ago

    Muddy Waters! I went back to my bluesy youth and listened to a few pieces – inspired by this apt description. I wonder if an hour glass filled with sand could ever imagine being bogged down by the sludge we negotiate. Loved this piece, Devon.

  • Devin Garlit moderator author
    11 months ago

    Thanks so much tfs!

  • Carol
    11 months ago

    tfs.

    Muddy Waters, I haven’t heard that name or that band for a very long time. There were a great blues group.

  • Lily
    11 months ago

    Devin, that is a very good description! I sometimes say “there is too much gravity”!
    I was at an AAN convention, which is a neurology convention for lay people.
    They had a booth with a carton of milk, filled with sand, and a box of cereal, filled with sand to show how it might feel to make something as simple as breakfast.
    Sometimes I think if a person wore a suit made of sand, then had them go thru their day, they might get a glimpse into the life of someone with MS. Of course, you know they would be complaining about how heavy it is, but they might just get a glimpse.
    It really is all about “you don’t get MS, until you get MS”.
    I stopped trying to explain it to people because it is my journey to understand and not theirs.

  • Devin Garlit moderator author
    11 months ago

    Thanks Lily! I love hearing about those types of examples, like the milk and ceral boxes filled with sand!

  • jn99
    11 months ago

    Yes, mud! And it drips all over the page when I am doing something that should be/used to be simple like creating an invoice for a client or ‘simple’ math.

  • clsuhre
    11 months ago

    Funny, just the other day (before I ever read this) I described negotiating my day as though I were knee-deep in mud. I’m grateful I don’t have many cognitive problems, but my body and legs understand the feeling to pressing through mud all too well.

  • Tess
    11 months ago

    To make it more happy in my mind, I’m gonna think [thick creamy, rich, dark chocolate] instead. Hahahahaha. But yes, your metaphor is perfect. It’s also like walking in a pool or the ocean too. Hard to move freely.

  • Fayje
    11 months ago

    Invisible mud in both physical and mental spaces…

    What an accurately fantastic metaphor.

    Haha, thanks for giving me a good phrase, “invisible mud,” to describe the feeling.

  • Devin Garlit moderator author
    11 months ago

    Thank you Fayje!

  • Nancy W
    11 months ago

    Today has been the muddiest day in a long time. I got up and tried to order my groceries online. But, the app has changed and I had trouble sorting it out. First splatter of mud. I ran low on time, so I am not really sure if I ordered everything or too much of everything. It is very muddy in my mind. Next, I picked up some friends to drive to a luncheon and we got there early. While we were sitting in the car, another group of friends in another car pulled up next to us and opened their windows to talk. But, she forgot to put the car in park and it inched forward and almost hit my car.

    We went into the luncheon and stood around for awhile waiting for our assigned tables and then sat down to eat. It is hard to fit in at a table where I only know 2 other people at the table and I am the youngest one there. After a couple of hours, I could not stand the background noise anymore and started to get dizzy and foggy, (or should I say muddy) so, I asked someone else to take my friends home and I left, driving very carefully.

    It is discouraging to go to a senior luncheon where I am 62 and look good and all these people older than me can handle it better than I can.

  • Devin Garlit moderator author
    11 months ago

    Thank you. I think seeing people our own age doing things we can’t is a common issue for many of us (as is their judging us when we can’t). It’s a struggle at any age too

  • Tess
    11 months ago

    I hear you. I’m 59 and walk with cane. I always try and dress nice and stylish and people look at me weird, like why does she need a cane? Why does she park in the handicap spot? Don’t judge people.

  • Carol
    11 months ago

    Tess, I know what you mean. I don’t know what is going through their minds, but like you said, people are judging us.

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