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.
- 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.
- 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.
- 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.
- 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.
- 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
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 Lubbock, The Use Of Life
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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 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
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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
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
I am a talker because I am a reader. I read a lot so I can talk about a subject in most social situations but I am uncomfortable almost all of the time at social events. As a child, I spent a lot of time by myself, reading, drawing, listening to music and I felt the most comfortable that way. However, since I can talk about a lot of subjects at great length, people assume I have to be an extrovert. However, this year I discovered I was an introvert. I spent most of my life trying to be an extrovert and messing it up badly but being an introvert seems natural to me. It all started when I purchased a book called The Introvert Advantage: How Quiet People Can Thrive in an Extrovert World by Marti Olsen Laney. This was an eye opener for me. I was not sure what I was but I knew that social events always seemed to drain me of whatever little energy I had at the end of the day. One of the many interesting topics in this book is about energy. This was something that was really interesting to me. I have struggled with my energy level on a daily basis and I could never understand why in certain social situations I was energized and in certain situations, I felt drained. In the book, Marti Olsen Laney discusses how the type of person you are such as being an introvert or an extrovert has a major effect on the way you create, process, and restore energy. I was surprised to find out there may be a few more reasons for why I did not have a lot of energy in my daily life besides my chronic illness. Over the last 6 months, I have observed myself and adjusted my social and personal relationships, and other aspects of my life to focus my life as my true introverted self. I have noticed a major improvement in myself, my relationships and my overall life. Now, I must say I do not feel more energized but I have noticed that I am not as hard on myself and do not push myself to be extrovert if I do not feel it would be a good fit for me. Also, my energy does not get as drained as quickly, do not get me wrong, I am still exhausted at the end of the day because of Charcot Marie Tooth but the speed at which I am using energy is slower. Overall, I am just more accepting of who I am and what I am comfortable with in my life now that I know that I am an introvert. I will leave you with this quote “Within you there is a stillness and a sanctuary to which you can retreat any time and be yourself. —Hermann Hesse” ― Marti Olsen Laney, The Introvert Advantage: How to Thrive in an Extrovert World
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