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.
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.
Do you ever swear you smell smoke or cigarettes but there's nothing there?