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
I have been away from my blog for a while. I know that many blogs nowadays start and never continue but I am hoping this will blog will be different. I have been going through a lot since Sept 2016 but it has become a little bit calmer as of late. I have decided to try again and I will continue to try until I get it right. I feel like people with anything chronic such as illness or pain, understand a good day is usually right after a really bad one. I am hopeful that I will have more good days than bad this year. I will leave you with this quote. “If you are going through hell, keep going.” ― Winston S. Churchill
Quote via GoodReads
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
I am a person who likes to get a deal or so I thought. Am I really getting a deal or am I really get the benefits of the price I pay? I have been reviewing my life and monthly expenses and started to realize that some of the areas I saved on I needed to cancel because I was not using them. Now, this is not a breakthrough moment, if you don’t use it, cancel it. However, I wondering if the reason I was not using them is because I had gotten such a great deal that maybe I did not pay attention to whether I would pay more if it was the right fit for me. So, I discussed this with a few friends and concluded that many other people sacrificed their preferences for the price even if they could afford the higher priced service that would satisfy what they were looking for. I was surprised that other people along with myself continued to use a service that we disliked solely based on the “deal” we were getting. So, I started to examine things with a new perspective regarding products and services. I changed a few areas to different products or services that fit my needs the best and found that things that I had cancelled or not used, now were things that were used almost daily. I completely understand that many people including me look for the best deal but now I look at what is best for me and see if I can find a deal for that. I will leave you with this quote “The way to wealth is as plain as the way to market. It depends chiefly on two words, industry and frugality: that is, waste neither time nor money, but make the best use of both. Without industry and frugality nothing will do, and with them everything.” ― Benjamin Franklin
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
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.
- Make the Bed – This seems like it’s a little thing but every day it can add to the day’s accomplishments.
- 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.
- 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.
- Stretching – I struggle with this daily but I am trying to stretch at least a few times a week.
- 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.
It been almost 3 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 my illnesses that I not been able to communicate so clearly. This has allowed people close to me and beyond a new perspective on what its like for me living with a chronic illness and what effects it has on my daily life. I have had people that have known me my whole life that did not know I was battling a chronic illness which was very surprising to me. So, I think that this proves that using this platform has been a good for awareness. It a good thing for people to hear Charcot Marie Tooth, Scoliosis and Stenosis so if they hear it from someone else they may have some familiarity with subject or at least know someone that has it. I am truly grateful and greatly appreciate all my social media followers, blog 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