Author: Sy

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

Quote from Goodreads

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

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

Carry-over Fatigue

Recently, I started to notice that daily life activities have been draining me of energy at a higher rate than my normal baseline. So, over the last few weeks, I have been observing my daily activities more closely and what I discovered is that depending on the way your particular disease responds to fatigue there seems to be a bit of carry-over. Carry-over fatigue is caused by the previous day or days activities that cause fatigue in the present. I noticed that once fatigue has occurred, the fatigue must be addressed if not that the fatigue will carry-over until exhaustion and as we all know once that level is reached recovery becomes exponential longer. So, what can we do about this?  Well, the solution is not that simple. This takes time to learn what causes you to reach fatigue and to understand when you may need to rest. I noticed for me that I always have an indicator that I am tired whether it is an unusual pain, my Charcot Marie Tooth symptoms worsen but most likely there is some sign that your body is giving you that you need to take a break. I have tried this myself, this has helped me to not have as much carry-over fatigue on a daily basis. Chronic illnesses do not have a magic fix but if we can move a step closer to feeling better then we have accomplished something great for that day. I will leave you with this quote “Rest is not idleness, and to lie sometimes on the grass under trees on a summer’s day, listening to the murmur of the water, or watching the clouds float across the sky, is by no means a waste of time.”
― John LubbockThe Use Of Life

Quote from Goodreads

Invisible Anxiety

As a person with chronic health issues, I find myself with invisible anxiety. This anxiety is not seen by others but it is felt by me. I only notice it after I become very anxious. This invisible anxiety would present itself as frustration. I don’t feel that frustration is the best way to deal with this so I am trying to find a way to manage my anxiety in different ways. One of the reasons I feel that this invisible anxiety exists is because as a person with a disability I always feel less than. I try to push myself to be something I am not and may never be. As a consequence of pushing oneself, I become exhausted and this is when my anxiety begins. If I address it at that time, I may be able to calm myself down but if there is a life event that does not allow for a period of rest this anxiety begins to carry over. As this anxiety carries over it will reach a tipping point which in my case means complete exhaustion and rest for an extended period of time. The reason I feel that it is invisible anxiety is that during these days people usually do not see or hear from me. So it seems like I am always doing ok but in reality, that is the one good day I had that week. I do not have a disability that can be masked but I continue to try to make the best of a difficult situation. I have learned that the best way to conquer this anxiety is to make it visible maybe not to everyone but at least to yourself. Once that is done and you brought the anxiety from the darkest to the light, you can begin to deal with your anxiety in real time instead of waiting until you have no choice but to deal with your anxiety.  I will leave you with this quote “Our anxiety does not empty tomorrow of its sorrows, but only empties today of its strengths.” ― Charles Haddon Spurgeon

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 gave me 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

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

What is a Spoonie or The Spoon Theory?

I learned a new word this weekend for people that struggle with chronic illnesses such as myself. The word is Spoonie or Spoonies. At first, I thought that was a beautifully odd thing to have on your profile but I have friends that love Sporks so it did not seem unusual to me. Then, I became instantly curious about that the word might mean and started looking for all the information I could find about the Spoon Theory. So, a Spoonie is a person living with chronic illness, that identifies with Christine Miserandino’s Spoon Theory. Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion… sometimes having an abundance, other times coming up short.  I really like this word and this theory, I think that sometimes it is really hard to explain what it is like to have a chronic illness. I found a youtube video from a while back that explains the spoon theory and how it became a symbol of chronic illnesses. I hope you can share this video or article with anyone in your life that has a chronic illness or family and friends that may need some help understanding your daily life with a chronic illness.  I think that is the Internet has become a great tool to express what it is like to live with a chronic illness. I hope you find this story inspiring and maybe you will write the next great story or chapter for chronic illness awareness.  I will leave you with this quote  “Start by doing what’s necessary; then do what’s possible, and suddenly you are doing the impossible.” -Francis of Assisi

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

Quote Via Goodreads

(C)2018  Sy On Life