Multiple Sclerosis....."But You Look So Good!"

Multiple Sclerosis...."But You Look So Good"

I frequently hear the words, "But You Look So Good!" We all like to be told we look good, don't we? That's often our goal as we are preparing ourselves for the day and leaving home. For people with MS these five little words pack a powerful punch. I have always wondered what is the best response to give when this is said to me? Sometimes I just smile and quickly nod my head a little forward while closing my eyes then bring my head back upright saying nothing. Sometimes I smile and say, "Thank you." I know when people say, "But you look so good" out loud to me, in their heads they might be saying these words, "....for someone with MS" right afterwards. Even the doctors, nurses and therapists that I have had over the years say these words, too. I don't take it personally or get offended by this because I get it.  Most people just do not understand what MS actually is and they are uncomfortable asking questions. I wish everyone would read my last blog post on facts about what MS is and/or to ask me all the questions that are stirring around in their heads. Though you can NOT see my Multiple Sclerosis symptoms, let me tell you they are quite alive and real inside of me. People who have "invisible" MS symptoms, like me and many others have a unique set of problems. With the symptoms being invisible, some people assume that you don't REALLY have a disease. Unfortunately, this can undermine one's confidence and relationships, therefore leaving great discouragement. When other things are added in people can't see your feelings of uncertainty, frustration, fear and anger...WOW! Does this unwanted friend that follows me around all day every day infuriate me! Common "invisible" MS symptoms that are hard to see are fatigue, pain, cognitive problems like memory loss or trouble solving problems, weakness, blurred vision, numbness, prickly or tingling sensations, heat sensitivity, dizziness, and bladder or bowel problems. Everyone experiences fatigue. I like most people with MS am hit hard by a kind of fatigue that can be overwhelming. This is so hard to explain. I guess the best place to start is to tell you what it isn’t. Fatigue is not sleepy tiredness. It won’t be sorted out by having a good night’s sleep or a nap in the afternoon. Fatigue is worse for some people than others. It can vary from one day to the next so predicting what you can do is really hard. Bad fatigue for one person might be really struggling at work. For someone else, it could be barely being able to walk to the mailbox and back in order to get the mail, despite being at home resting all day. For another person, it might be getting from the bed to the toilet only by clinging onto furniture and door frames. Fatigue is a big deal. But this just says🍼what it is hard to do when you have fatigue. What does it actually feel like? It feels like I am falling in quicksand. It's a viscous, heavy, pulling feeling, but if I fight it I sink deeper. It feels like the sound of many loud scratchy string instruments increasing in speed and yet out of sync while the outside world seems distant and fading.  Fatigue makes me feel weighed down as if  I am trying to walk in a muddy river up to my chest in heavy, wet clothes carrying a backpack full of rocks. The fatigue makes me feel as if I am hooked to a vacuum cleaner and all the air is sucked out of my body. My brain goes fuzzy and I can’t think clearly. My balance gets rocky and my legs feel heavy and clumsy. The next invisible symptom I experience is pain.  There is a constant upper body burning pain that increases or decreases according to stress and heat.  There is also an aching pain in all of my muscles and a squeezing or girdling pain around my body. I have prickly, tingling and numbness sensations which varies in location on my body. Forget being in the hot sun at all. I cannot tolerate the heat. I feel all the symptoms rising up to attack me at their worst. I usually choose what I do, when I do it, where I do it according to the temperature outside. I have found myself going somewhere then ending up in the heat and it is too hot. I get a bit panicky trying to get home before I collapse. The heat
 makes me feel like I am melting, turning to mush on the floor; kinda like when Dorthy from the Wizard of Oz throws water on the Wicked Witch of the West then the witch shrinks and melts into a puddle on the ground. I am slow to talk about all of these MS symptoms, but I especially drag my feet when talking about the bowel problem that MS slings at me. The bowels?  Well, they essentially work so slowly and sluggish that when I go to the bathroom without much of a problem. I want to do a little "yahoo poop dance,"  On the flip side though, the dirty dark side, I regulary have to clean out impactions that MS glues inside me. 

How I look and feel do not match. Having these invisible symptoms requires me to constantly adjust to the differences between how I feel "inside" and how the world reacts to me when I "look so good."  It is tough to feel powerful, competent, assertive, like I got it all together and beautiful when I do not feel well. My goal though is to keep on trying and trying and trying even when it is so so tough to do.