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

Quote from Goodreads

Dating With A Disability

I have seen a lot of posts over the years about trials and tribulations of dating with a disability.  This has always been an issue for me as well. I never felt like I was worthy of someone’s affection. I always felt like I needed to overcompensate for my disabilities with intelligence and/or humor because I felt that no one would accept me with all of my problems. I tried this method for years and even had some success but as my disease progressed it became harder to hide. I made a lot of mistakes but I learned from them. One constant that I noticed was that most of the people I dated never mentioned or seemed to feel like I was less than anyone else. I finally came to the conclusion that I was causing the problems in my relationships because I did not allow myself to be my true self. I always thought that when they find out how sick I am they will leave me so I might as well start to push them away now. This inability to be who I was caused daily anxiety, stress, and frustration that had a negative effect on my relationship. In the end, I succeeded in pushing that person away with no hope of reconciliation. I regret that now not because I am not happy with my life but I never wanted to make someone feel less than the amazing person they are. I realized that accepting yourself and having the confidence to be your true self is the first step in finding another person to be in a relationship with. So for people with chronic illnesses like me, embracing our true selves as the special and amazing human beings that we are is the most attractive quality we can have and it does not require anything more than what we are at this very moment. Eventually, you will find the right person for you and they will love you for the person you truly are. I know this is possible because that’s what happen to me and I have never been more myself and happier than I am right now. I will leave you with this quote “ Too many people overvalue what they are not and undervalue what they are.”– Malcolm S. Forbes

Quote from The Positivity Blog

Are You Even Handicapped?

Recently I was parked in a handicap spot with my placard clearly showing in the window and about to get in my car when someone yelled “are you even handicapped?” This person could not see my scars from the corrective surgeries as a child, the two years I was in a wheelchair and I had to relearn how to walk or even the  AFO’s I had on my feet at the time.  I was offended but it made me think what is handicap suppose to look like and why do people always feel the need to comment. I have seen on many of the CMT forums of people having notes left on their cars shaming people with CMT for using handicap spots. I am very upset that people feel the need to comment on someone else’s medical condition. I am sure none of the people commenting or leaving notes are medical professionals but yet there is a stigma for people without an extremely visible disability using ADA accommodations. This is pure ignorance. I have always said CMT is an invisible disability which causes a lot of judgement from friends, co-workers, family members and society. Personally, I have been called a procrastinator,  lazy, unmotivated, worthless, and even a hypochondriac. I am used  to the judgement now and I have accepted that on my good days I seem “normal” to people but under that so called “normal” is nerve pain, calluses, bruises, joint pain,  body aches, etc.  People with CMT or any invisible disease or disorder struggle everyday trying to just make it through the day but trust me, no amount of hatred, judgement, or negative views can compare to the amount of emotional stress we go through on a daily basis. So, the next time you see someone using a handicap spot, ramp, elevator or other ADA accommodation,  remember you have no right to judge someone because if you were in their position you would not like to be judged for doing what is best for you.  I will leave you with this quote “The handicapped are not on trial. Those of use that live free of such limitations are the ones who are on trial.” – James E. Faust