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 Victory in Defeat

In my life, I have seen more setbacks than successes but within the setbacks, there is a bit room created for improvement. We have all struggled to find our way in this tough world but I think having a chronic illness at a young age gave me the grit I needed to push through. Failing happens, losing happens even if you think you did everything right you may still lose. This is the risk we take with any endeavor we embark on. However, in the defeat, the opportunity to learn from your mistakes can be found. I know it seems a bit cliche but some cliches are cliches because they are true. Over the last few months, I have found that in major defeat there is a ripple effect that occurs that can be felt throughout your entire personal ecosystem. I have felt the ripple and it was difficult and continues to be but I found a victory. This victory is clarity, not like an ah-ha moment but more like I am sure that this is where I need to be at this point in my life. This renewed sense of purpose has created a new path for me to follow going forward.  I have always struggled with contentment which has not changed but what makes me content has and will forever be altered. I will take my victory in defeat and take this lesson to the next stage of my life with hopes that this lesson can help continue to guide me to greater peace and happiness. I will leave you with this quote “Pleasure is always derived from something outside you, whereas joy arises from within.” ― Eckhart Tolle

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The Misconception of Powering Through

I have been sick my entire life. Since I could remember I have heard people say you can do it just power through it. Now, I am a big believer in persistence but when it comes to certain areas of your life such as your health and well being this may not be the best course of action. As a person with a chronic illness, I have been told over and over that I am lazy, unmotived and pretty much a worthless human being. Unfortunately, I wish I was paraphrasing that last part but I am not. I was misdiagnosed when I was younger which gave everyone the impression that I was just not trying hard enough to get better but I was. I had scoliosis as part of my CMT and since I was overweight doctors told me that it was because I was overweight. I had so much stress as a kid because I was overweight but I found out that had nothing to do with it. Some types of CMT including mine cause scoliosis as well. I spent my life powering through and getting worse until one day I could not deny that something was very wrong and I got rediagnosed with a completely different disease.  Medical advances have allowed my diagnosis to be seen clearer than before. It was hard not understanding what was going on with me and it would have helped me immensely to know what disease I really had. I know that dwelling on the past does not help anyone especially me. I want to forward and to do so I learned that consistency at a level that is right for you is more important than powering through. I think that I have a lot to learn but I know a win for me is to keep trying and not powering through on something that will surely do harm to my well being. I will leave you with this quote “When you run your own race, don’t worry about the next person’s pace; mind yours, after all this is your own race not theirs.”
― Gift Gugu Mona

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Being Comfortable With My Disabilities and Decisions

Denial is a powerful thing. I was in denial for almost 25 years that I was very sick. I made choices from a place of denial. My frustration came from that same place. The thought of me not being about to fix myself made me feel out of control. I tried for years to fix myself and when I could not I felt worse than before.  I recently made a big change in my life and after I made the decision and all aspects of it had been finalized I began to tell everyone in my life about what I decided. I was nervous because for me this was a life changing and difficult decision but when I told everyone they were relieved. I was surprised to find out that everyone was happy for me and felt I had made the right choice and wished I would have made it earlier in my life. I did not know that they felt the stress that I felt. After a few weeks of coming to terms with all that has happened over the last few months, I realized that being comfortable with yourself is a powerful thing and It’s effects may reach further than you could imagine. I am looking forward to being comfortable with myself from today on and I learned the best gift I can give to myself and everyone else is to be my true self and do what is best for me. I will leave you with this quote “The moment will arrive when you are comfortable with who you are, and what you are– bald or old or fat or poor, successful or struggling- when you don’t feel the need to apologize for anything or to deny anything. To be comfortable in your own skin is the beginning of strength.” ― Charles B. Handy

The High Road is Never Flooded With Regret

Over the last week, I have had a few circumstances that required me or a loved one to be a better person. What happens when a bad thing happens to someone that hurt or damaged your life or well being without any concern for your feelings. Are you suppose to treat them better than they would treat you? I say yes! I think you have to be true to yourself if that means treating someone better than they would or have treated you than so be it. You are a good person and as long as you are not letting that person take advantage of you or harm you in some way, being a better human being than them is more about you than them. So, don’t feel bad about being a good person to the people that have wronged you. The high road is never flooded with regret. I will leave you with this quote “Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world.” ― Desmond Tutu

How My Blog About Charcot Marie Tooth and Scoliosis Has Helped Me

It has been a few months since I started this blog and I have learned a lot about myself and others that have both illnesses. I started this blog as a way to document someone living with CMT, Scoliosis, and Stenosis and the tips I would find along the way but what I discovered was something completely different. I was inspired by the communities that are helping and supporting one another. The people I now follow, read, and learn from all came through me starting this blog. Also, writing a post about a subject made me look at the subject more objectively which has helped me discover causes for issues that have plagued since childhood. This blog has given me a way to express some aspects of these illnesses that I not been able to communicate so clearly. This has allowed people close to me and beyond to understand aspects of living with a chronic illness and what effects it has on my daily life. I have had people that have known my whole life that did not know I was battling a chronic illness which was very surprising to me. I am not concerned with people knowing or not knowing if I am not well but it is a good thing for people to hear Charcot Marie Tooth,  and Scoliosis so if they hear it from anyone else they may have some familiarity with the subject or at least know someone that has it.  I am truly grateful and greatly appreciate all my social media followers, blogs subscribers, family and friends that have taken the time to read my blog and I hope you will keep reading my posts and continue to follow me on this journey. Thank you so much. I will leave you with this quote “After nourishment, shelter and companionship, stories are the thing we need most in the world.”― Philip Pullman

Being Yourself

Sometimes being yourself can be the hardest thing to be. I have always been a bit different. I have a different perspective on the world. I never really followed any particular path but I always seem to land where I am suppose to be. CMT has made me realize that sometimes our weakness can our biggest strengths. I feel that the unique person I am can only come from being a person with CMT. I think that when you are being yourself you encounter a lot of people that try to discourage you from being yourself but if you stay true to yourself, the reward will be worth the strife. I find beauty in moments that I may not have paid attention to. I marvel at the simplest things that other can do that I cannot and I appreciate the things I can do that others may not be able to do. It is easy to be influenced by society’s pressure to conform but just like a lump of coal that has pressure applied to it a diamond can be created. Being myself is the most powerful thing I can be and I have learned that I am not willing to give my power away for any reason. I have done this in the past only to regret it. I know that sometimes life will test me but I feel that I have failed a lot of those tests in the past. I have discovered that being myself is the cheat sheet of passing all of life‘s tests in the future. I will leave you with this quote “To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” 
― Ralph Waldo Emerson

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