5 lessons I learned this year

This year has been life-changing for me. The events of this year will impact my life in a way unlike any other year in the past. As I reflect on the events of this year I am hopeful that next year will bring more peace, joy, and happiness. I learned a lot about myself and others this year. Some good things and some bad but all of the moments had value because of the lessons that I learned. I am going to reflect on 5 lessons that I learned this year that will better prepare me for 2018.

  1. Everyday armor is added to protect you from adversity.  I understand that many of us have trials and tribulations just to make it through the day but we are strong for the struggles we have on a daily basis. Instead of viewing the struggles as a burden try to view them as pieces of armor added daily to help with the daily struggles of chronic illness. The more armor you have the less those struggles can affect you the next time they occur.
  2. Finding what works for you is all that matters. I spent a lot of my time in the past trying and reading about what works best for others but this past year I focused on what worked best for me. Whether it was a lifestyle, health or relationship choice I made a conscious decision to find out how each aspect of my life was affecting my well being and spent my time removing those toxic elements from my life. This has dramatically changed my mood and outlook on life. I am more positive and have a better understanding of what works best for me on a daily basis and I have seen the benefits in all aspects of my life.
  3. Living in the moment is where peace is found. Meditation teaches that living in the present is what provides the contentment and calm that most of us are looking for in our daily life. Chronic illness causes additional anxiety that may cause us not to be in the moment all the time. However, appreciating the moments when you are feeling better than the normal chronic illness baseline is so important to living a fulfilled life and why those fleeting moments should be cherished and not ignored.
  4. Listen to your body. I spent this year truly listening to my body. I loved my body on the good days and the bad. I did not dwell on the bad days as much as I use to instead I respected that my body was having a bad day and needed special attention.  Just like any other relationship the one with your body is personal and you must listen and responded like you would to any other loving relationship in your life. You must give your body respect and be loving in order to receive the same from your body.
  5. Life is shorter than you think. I know we have heard this all our lives that life moves quickly and you must stop to smell the roses but I have a different theory. I think that if you are in the flow of your life and on the right path the smell of roses will be the fragrance of your life and would not require you to stop and smell them. I spent a lot of my life doing what I thought I was supposed to do versus what the universe was gently nudging me to do. This blog is something that is in the flow of my life and when I sit down to write it never feels like I need to appreciate it because I love it that why I do it. I found more things in my life that make me have the same joy I have from writing this blog.

So, as this year comes to an end I am hopeful that next year will bring new experiences and new lessons that will help me move forward in my life’s journey and I hope to share those experiences with you with the understanding that you are not alone in your struggles with chronic illness or just in life. Best wishes and Happy New Year! I will leave you with this quote “Tomorrow, is the first blank page of a 365-page book. Write a good one.” ― Brad Paisley

Quote from Goodreads

The Hectic Holidays

I have always been a fan of the holiday season. Every year I look forward to the hustle and bustle of all things holiday but recently the holidays have become a source of anxiety. The holiday shift begins after Halloween with an increased number of people shopping, the pace people have is much faster and the changing weather which for me involves cold, snow and ice have become a concern for my physical safety. However, I can’t help but love this time of year. People are out with their families, friends, and others creating memories, some good and some bad for a lifetime. I feel like the holidays are a break from thinking about the tough day to day issues we all have to deal with in our lives. Even though I cannot experience it the way I did in the past, I still find joy in the new traditions that I have created to replace the ones my chronic illness will no longer allow me to participate in. As I move into the winter and holiday season, I am hopeful that things will go well and I am thankful and grateful to be able to the do the things mentally and physically for another year because next year I may not be so lucky. I will leave you with this quote “Cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously. And because all things have contributed to your advancement, you should include all things in your gratitude.” ― Ralph Waldo Emerson

Quote from Goodreads

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

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

Quote from Goodreads

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

Quote from Goodreads 

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

If Then Dilemma

I have a tendency to distract myself from what is truly going on with me. I’m not sure why I do this to keep busy or to fill a void that I am feeling but I don’t feel better. Often times after I have an episode ( as I call it) I feel the guilt of the purchase, or inability to follow through with the initial purpose of whatever I did. I end up feeling unhappier than before but yet I do not stop. I have a constant “if-then” dilemma which causes me to make decisions now that supposedly make me feel better later. I am working on not doing this as often but I struggle with it on days I do not feel well. This state of future happiness causes problems because what I have learned that the present is the only time you can have happiness so if you are hedging your decisions on the future like any bet you may win or lose. “Tomorrow is tomorrow.Future cares have future cures, And we must mind today.”Sophocles, Antigone

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

This Week Sy Suggests – Happiness Tips

Every week I try a few new things so you do not have to. This week’s top five suggestions are from Gretchen Rubin and Elizabeth Craft’s Happier Podcast.  They have a bunch of suggestions to try at home. I am going to give you the 5 that I tried this week.

  1. Make the Bed – This seems like it’s a little thing but every day it can add to the day’s accomplishments.
  2. One Sentence Journal – I have always wanted to have a journal and I have tried all types methods from a set time to 2 mins day but the one sentence journal was a success for me this week.
  3. Meditation – This has been something I have talked about in prior posts but I will continue to make this suggestion. Even if it’s 5 minutes a day, I always notice the difference in myself.
  4. Stretching – I struggle with this daily but I am trying to stretch at least a few times a week.
  5. Happiness Demerits and Gold Stars – I like this concept because listening to the Happier Podcast has made me think about what I do poorly or well when it comes to my own and the people around me when it comes to happiness.

Happiness is something that requires daily practice. I have tried a lot of different things and some things work and some things do not work for me. The success is from trying to be happier on a daily basis. If you continue to try new things to be happy those little things add up over time. I am no happiness expert when it comes to living with Charcot Marie Tooth, Scoliosis or Stenosis but I know that trying new habits and suggestions will have a positive effect on your daily mood. Let me know if you have tried or are planning to try any of Gretchen Rubin’s suggestions in the comments below.

How Having Charcot Marie Tooth Made Being Myself Easier

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