Blindsided By Bad Days

When a storm is coming you can always tell it is on its way but in my case, I can’t.  My disease does not let me know whether the next day will be good or bad, there is no foreshadowing, no clouds rolling in so there is almost no way to tell what I may feel like tomorrow. Now, I understand this is the case with most people but your baseline may be higher so when you are not 100% you are still able to function pretty well. I would be content with a bad day or two but I end up having a bad week or weeks depending on how severe the bout might be.  During these times I am bed/couch ridden with barely enough energy to sit up. I would say it is similar to very bad flu which keeps you in bed for days until it passes.  I have tried lots of ways to predict when these bouts occur but the only thing I know for sure is that I will get sicker and I don’t know when or for how long but I will be sicker. It probably seems unusual to people without a disability to understand that I am truly blindsided by my bad days and have no control over this aspect of my life. I am not sick because external factors, I did not push myself too hard or have a rough week because every day I am pushing through and every week is rough. I have a disease that as a whole is difficult to manage with days of not as bad as yesterday mixed in.  I know, it could be much worse so I am not complaining about what I have but I just wanted to provide a little insight into why maybe I or someone you know may have an unusual pattern that even they cannot predict. I will leave you with this quote “When we go through unpredictable waters we are always in advantage, because many people cannot swim” ― Jan Jansen Easy Branches

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Morning Fog

Somedays I wake up to what I describe as a morning fog. This fog is debilitating with speech, cognitive and motor skills that subpar at best. In addition, I have a higher amount of physical pain than I have on “normal” days. I try to be a fairly positive person about my disease but on those days, it is difficult to find the strength to do much of anything. It feels like my mind and body are in complete chaos and I have not yet found a way to recenter myself.  I also feel the emotional fears that come along with my disease. These days are little indicators that my disease may be getting worse rather than staying the same as I would hope. I struggle with the thoughts in my mind making the morning fog even foggier than before. This is a vicious circle for a person with my disease creating an endless loop of mental pollution and physical pain that becoming toxic to my being. Now, I am not saying that this will not pass but in that moment it is all I can think about because as much as I try to ignore the fact that I am really sick I promise you my mind, body, and soul remind me that I am not well. I write this post to hopefully strike a cord that may help you better understand what it is like for someone that has a chronic illness in hopes that it will help you help yourself or others that struggle to just get through the day. I will leave you with this quote “To find truth, one must traverse a dense fog” ― David Dweck

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The Sickness Slide

The sickness slide is a metaphor that best describes what it feels like to be a person with Charcot Marie Tooth. I remember as a child trying to climb up the slide on the playground. I would move a few steps up the slide and I would slip and slide back to the bottom. Then, the next day I would try again and get almost to the top and my legs or hands were not strong enough to make it so I slide back down. Now as I tried over and over either I would get closer to the top or I could not even get past the first hump but I tried and slid down over and over with bruises and bumps until I had nothing left. This is similar to my daily life with Charcot Marie Tooth. I try every day to just make it through the day with a little success or no success at all but in hopes that one day I might reach the top of the slide. I don’t what is at the top of the slide because I have never made it but I know that life does not stop with my disease but it just adds more height and steepness to the slide. I won’t stop trying because even a little success is worth all the struggle and strife. I will leave you with this quote “Never, never, never give up.” ― Winston Churchill

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