2018 has began…now what?

I start every year with the same hope and joy and by the end of the first week I wonder why I even tried to change things. However, this year I am trying a new approach instead of diving in I am taking my time starting my resolutions. I have realized that it is never a lack of effort but maybe the fact is that we are following the past into the same problems. So I am not starting anything new until at least February 1st or even later. What is the rush? I would rather start later and stay on course than start quicker and end up burning out. So good luck everyone if you started now or you are starting later. I wish you all the best for the rest of the new year. I will leave you with this quote “Just because the dates change, does not mean you have to change. The continuous path towards self-improvement is a timeless process.” ― Brittany Burgunder

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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

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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

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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

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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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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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Does Monitoring Your Habits Benefit Charcot Marie Tooth?

I am reading a book called Better Than Before: What I Learned About Making and Breaking Habits By Gretchen Rubin. In her book, she talks about Monitoring. She states this about monitoring and why it is important. “Monitoring is an observational strategy. It doesn’t require that I change what I’m doing, only that I know what I’m doing. This is crucial to habit formation, because once I recognize what I’m doing, I may choose to behave differently“. I started by going to GretchenRubin.com and downloaded her Daily Time Log. This not a very rigid log, it’s about every half an hour and you can print it out and write on it as needed.  I wondered if seeing how I spent my time would have an effect on how I used it. I have never been very good at keeping track of anything but I thought this may be an interesting experiment for me. I will leave you with this quote “But if one observes, one will see that the body has its own intelligence; it requires a great deal of intelligence to observe the intelligence of the body.
Jiddu Krishnamurti, The Flight of the Eagle

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

Managing Expectations With Charcot Marie Tooth and Scoliosis

I am my own worst critic. I have been this way for as long as I can remember but as I get older it seems to be getting worse. The gap in life between me and the rest of the people in my life is widening. As I am getting older I am getting more sick than people around me or maybe I have always been this sick and time has finally caught up with me. Either way, I feel that my expectations should not be focused on the negative but should be moving toward the positive. This thought pattern may not necessarily be a problem for most people today but in my case I want to feel like things have not changed at all when they have dramatically changed. I think it’s human nature to try to keep things in order by repeating some of the same habits that you have done in the past but what if those habits do not apply or you are unable to do them in your current life. I always expect that I will be able to function the same way or similar to people of the same age but unfortunately for me that is not the case. So, I am starting to learn how to manage my expectations of myself. I will not be able to do what a person my age or even possibly older can do because of CMT. I know what you are thinking, you are giving up, you should try harder but that’s not it at all. I am finally fine with not having any expectations. This does not mean I am floating through life like a cloud in the summer sky. It means that when I expect to do something and I do not feel up to it the next day or even later that day I feel like I have failed. This feeling of failure is caused by my expectation of me being able to do something that I want to but am unable to because of CMT. As a person with CMT, I am not sure how I feel day by day or even hour by hour so for me to have this unrealistic expectation will ultimately create the pressure to push myself too far. When this happens, I feel myself getting more sick and I feel like I have failed myself and others. I am starting to learn how to manage my expectations on a daily basis or even hourly basis. I spend a lot of energy thinking about all the things that are going to happen instead of saving my energy and appreciating the things that are happening now. I am going to manage my expectations to create an updated version of myself in which the critic is not an enemy but it will no longer exist. I think that we should expect our best but not expect that best to be more than what we can handle. So, give yourself a break and manage your expectations so you can prevent yourself from being in the endless loop of negative thoughts and feelings. I will leave you with this quote “I’m not in this world to live up to your expectations and you’re not in this world to live up to mine.”
Bruce Lee

Trying to Get Unstuck When You Have Charcot Marie Tooth and Scoliosis

Today, I am starting a new Oprah and Deepak 21 day meditation experience. It’s called Getting Unstuck: Creating a limitless life. I started meditating over a year ago as a way of dealing with the some of the symptoms of Charcot Marie Tooth Disease. I think it has helped me be less focused on the negative effects of CMT and bring more positivity into my life. In a few of my prior posts I mentioned a lot of lessons I have learned through meditation. I prefer guided meditation because it helps me think about areas of my life that I am not focused on. This allows me to expand my spirituality, mindfulness and focus on others areas of my life besides CMT. I think the 20 minutes a day that I truly focus of my meditation practice is time that I know will help me in my day and I have had multiple examples when my meditation in the morning has directly correlated with some of the issues that occur that day. This gives me a new perspective on the situation and it creates a different outcome which was more positive than the alternative. I am exciting to start the new 21 day meditation experience and I am hopeful for what I can learn about myself.  I will leave you with this quote “In the midst of movement and chaos, keep stillness inside of you.” – Deepak Chopra.