Tag: Charcot Marie Tooth

Do you accept yourself?

Have you ever asked yourself if you have accepted your life with a chronic illness? I hadn’t until a few weeks ago. I spent a lot of my time dealing with things that occur in my life and trying to overcome the trials and tribulations of having a chronic illness. I thought because I am going through the motions that I had accepted my chronic illness. I was kind of shocked when I thought about it. I have been sick all my life and I have yet to accept my chronic illness. If I think about the surgery I had in March 2018, my doctor stated all the problems that he was repairing because of my illness but I still didn’t accept it. I know I have a chronic illness but I think that if you don’t fully accept your chronic illness, it may become difficult to heal some of the emotional hardships caused by your chronic illness. Although the physical bumps and bruises healed, the emotional ones have not. You must also heal the mind and the soul, not just the body. I have been only working on accepting myself and my chronic illness for a short time but I have seen the benefits of self-acceptance. I recommend you try to work on your self-acceptance and see what it does for you. I will leave you with this quote “The worst loneliness is to not be comfortable with yourself.” ― Mark Twain

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Why having uncomfortable conversations should be part of your 2019 resolutions

This year you should have more uncomfortable conversations. This a resolution that many people forget about every year. I feel this just may be the thing that you need for more personal growth in 2019. You can learn so much more in these uncomfortable conversations. I noticed that after the conversation ended we both felt our perspective was heard. This is a very important part of a conversation. For many people, to be heard is more important than someone just listening. An uncomfortable opinion can be a good or bad thing depending on the situation. I have had many uncomfortable conversations about my chronic illness. Most of the time when I mention Charcot Marie Tooth, I have to relate it to Multiple Sclerosis or Muscular Dystrophy so people can understand what it is like. The shocked look that people have says it all. They tell me “But you don’t look sick” like that is a compliment. I think that this year it is important to see things from different perspectives more than ever before. Have a calm conversation with someone that may not share your opinion. Make sure the other person is open to being heard and you are open to the same. Being uncomfortable is not always a bad thing because in the right circumstance it may end up turning into a life-changing experience. I will leave you with this quote “A person’s success in life can usually be measured by the number of uncomfortable conversations he or she is willing to have.”Timothy Ferriss

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2019 has began. Now what?

The start of the year can be a stressful time. I woke up yesterday and today feeling the pressure to start things. The people around me also seemed a bit more rushed than in the days prior. This created a feeling of tension for me which I am trying to manage better this year.  I had decided prior to the end of the year that I would try something new.  I am going to try to schedule things I need to do weekly. I know this might seem like no big deal but for me, it is! I was never able to stick to a schedule in my life so I hope that this year will be different. I am going to not think about the new restrictions that could occur but the freedom and the joy of accomplishment I will feel when things are complete.  I struggle with restrictions because I always felt my CMT created a lot of aspects of my life that were restricted. However, this past year, I learned that schedules and restrictions can create even more time. This sounded crazy to me too when I first heard it.  I am proud to say that it is true for me.  I started this toward the end of 2018 so I have a bit of rhythm going into 2019.  I would recommend you try it out. If it doesn’t work you can always go back to what works for you. I wish you all the best for the rest of the new year.  I will leave you with this quote “You gotta make it a priority to make your priorities a priority.” ― Richie Norton

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5 lessons I learned this year – 2018 Edition

This year has been another life-changing one for me. I said that last year but it’s true this year as well. 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. I am going to reflect on 5 lessons.

  1. Be kind to yourself and others. This is something I strive for on a daily basis. I believe that the universe is filled with energy and if you would like to get good energy and vibes from the world you must put the same energy out into the world. I have seen how this has greatly impacted my life for the better. I know with a chronic illness some days are tough but I encourage you to try this in the new year and I am sure you won’t be disappointed.
  2. Try new things. I tried a lot of new things and pushed myself out of my comfort zone. This was good for me. I encourage you to try new things this year and you might be surprised how many of the new things you love that may also make your life much easier.
  3. Find the right fit for you and nobody else. I notice that what works for me may not work for others. You are probably thinking, Duh? Am I right? I look for places that give me good vibes so I encourage you to do the same. If you have found your groove in the world in all the aspects of your life, I applaud you for that. If you are like me and have not figured that out yet I recommend that you keep searching for the things that feel right to you.
  4. Listen to your body. I said this last year but I think this needs to be mentioned again. I have noticed that when I spent less time thinking about what is good for my body and more time trusting that my body knows what it needs I have better days. I like to work on the basics of a happy life such as good sleep, diet and most importantly a healthy environment. This will give you a safe space so your physical, mental and emotional health can thrive.
  5. Worry less about the things you cannot control. This was very hard for me. I am a worrier and very opinionated. I would spend a lot more time thinking about solving other peoples problems more than my own. This created more problems than solutions. If I spend more time solving some of my problems, I feel better physically and mentally about the situation. Take the time to take of your needs more this year.

I am hopeful that next year will bring new experiences and new lessons that will help me move forward. I hope to share those ne experiences with you. 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 importance of mental toughness when you have a chronic illness

Physical toughness has always been something I felt was important.  With my chronic illness, there are a lot of bumps and bruises that I endure on a daily basis. Today I would like to discuss the importance of mental toughness when battling the daily struggles of a chronic illness.  The daily stresses on top of the stresses caused by our health with a dash of the holiday season can make a typical tough day into a very stressful or even an overwhelming day.  On days like these, it is hard to make the people around you understand what you are going through.  In the past, I have called my daily struggle with chronic illness the sickness slide. My day is a constant struggle of trying to reach the top of the slide only to slide back down to different levels. This creates a tedious and sometimes repetitive pattern to try to recreate some of the successes I had in the past. Whether that success is less pain or more energy, I am always hopeful that a good day might be right around the corner as long as I have the mental toughness to keep going. However, as many of you may have experienced, chronic illness can change day by day or even hour by hour depending on your illness. Also, most people do not realize that a lot of people with chronic illnesses may have multiple illnesses. I personally have Charcot Marie Tooth, Scoliosis, IBS and Eczema, In addition, I also I have other ailments from surgeries such as hip tendinosis and localized muscle weakness and repetitive motion injuries like a strained bicep. Lastly, there could be side effects from medications, allergies and/or environmental changes like the changing of the seasons that can all affect how I feel.  Most people notice my CMT because it is the most pronounced and visible. Also, all the conditions I mentioned above are happening concurrently so I cannot just deal with them individually.  I usually address the ones that are bothering me the most for that day.  So, as we are nearing the end of the year, I hope that you and everyone around you know what kind of mental toughness it takes for you just to make it through the day.  I understand we do not do this by ourselves, some of us have support systems. I am personally very grateful for my support system.  The earnest is on us to create, maintain and build our mental toughness to hopefully improve our daily lives living with a chronic illness. I will leave you with this quote  “You can have anything you want if you are willing to give up the belief that you can’t have it.” – Robert Anthony, Positively Positive 

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Planning To Go Out With CMT – Holiday Edition

First, let me start by saying I am a fan of autumn and the holiday season but this year has been a bit more stressful than expected. I feel like every day is building on top of one another to create this mountain of stress. I am hoping to get my climbing gear and begin my climb to the summit but that has not happened yet. This was a year with a lot of surprises and as a person with CMT, I prefer a more planned approach because I need to have a plan in place for the things that could happen such as bad weather, unusally placed stairs, slippery floors and find out if the event has ADA accessibility. This is something new for me this year, I would normally just go with the flow. This worked for me most of the time but a few times I paid the price of a week of rest but at a minimum, it would cause stress that would upset my stomach and create body aches. This became progressively worse as the event continued so by the time the night ended something fun had become something that was another bad memory in my holiday past. I told myself this year will be different and I got my wish kind of because it is unlike any other holiday season before it. I find that a detailed plan helps to create a feeling of preparedness which helped my understanding of the situation and realize I had done all I could do to make the best of this occasion and it is time to trust myself and enjoy the party. I did enjoy the party even though things were not perfect and unexpected things happened like icy curbs and wet mopped floors which are not the best for someone with CMT. However, I made it through and so can you! I would just say it will take some extra planning…I never thought I would say that but it has helped me reduce my social anxiety a lot.  I wish you good luck in making the best plan for you this holiday season!  I will leave you with this quote “Plans are of little importance, but planning is essential.” ― Winston Churchill

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Knowing Your Limits

I have been not feeling 100% in a few days now. I normally try to make the best of it on days that I am in pain such as this one. I decided I would write a new post about knowing your limits. Now, I am not great at this but today, I am attempting to have a rest day because the left side my body hurts from the neck down to my hip. In addition, my scoliosis is not happy today so I am leaning on that side as well. Overall, not a great day to do the things I might normally do…I know I am using the word normally but I want to assure nothing is normal about it.  This winter has started off a bit rough. I have had to were boots more than expected and I can’t seem to find a shoe that is not a boot to fit my Charcot Marie Tooth feet…but I am sure we all understand the pain of shoe shopping with a chronic illness. Today, I had a moment of clarity that I had reached my limit. This was a surprise to me that I knew when to stop. You might be asking yourself why is that a big deal because I am not completely exhausted yet. When I usually stop it is because I am very fatigued, have extreme pain or just plain old exhaustion that is preventing me from getting out of bed but this time I saw what was on the horizon. I am taking a day off before the universe decides to make me. This has always been something I have struggled with. When I was younger I would push myself and I would need a week full of rest just to recover. I am trying to learn this chronic illness. I was born with the disease but I was finally diagnosed correctly a few years ago and I am still learning what I have to adjust based on what I know now.  I understand that normalcy is out of the question when you have a chronic illness but making your life better based on good decisions can help ease the trials and tribulations of have a chronic illness. I know it is hard to voluntarily rest if you have a bit of energy but your body, mind, and soul will thank you. I will leave you with this quote “Everyone has the fire, but the champions know when to ignite the spark.” ― Amit Ray, Enlightenment Step by Step

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Morning Fog

Somedays I wake up to what I describe as a morning fog. This fog is debilitating with speech, cognitive and motor skills that subpar at best. In addition, I have a higher amount of physical pain than I have on “normal” days. I try to be a fairly positive person about my disease but on those days, it is difficult to find the strength to do much of anything. It feels like my mind and body are in complete chaos and I have not yet found a way to recenter myself.  I also feel the emotional fears that come along with my disease. These days are little indicators that my disease may be getting worse rather than staying the same as I would hope. I struggle with the thoughts in my mind making the morning fog even foggier than before. This is a vicious circle for a person with my disease creating an endless loop of mental pollution and physical pain that becoming toxic to my being. Now, I am not saying that this will not pass but in that moment it is all I can think about because as much as I try to ignore the fact that I am really sick I promise you my mind, body, and soul remind me that I am not well. I write this post to hopefully strike a cord that may help you better understand what it is like for someone that has a chronic illness in hopes that it will help you help yourself or others that struggle to just get through the day. I will leave you with this quote “To find truth, one must traverse a dense fog” ― David Dweck

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The Mysteries of Chronic Illness

I had a tough week so far. I have had a brain fog, fatigue, body aches, and pain in multiple joints all week. I always wonder what is causing this sickness slide to happen. I find myself struggling to do things that I can normally do. I try to keep myself on a schedule in order to track if any variants affect my well being. However, the interesting thing about having a chronic illness is that I could do the same thing every day and end up with a completely different result.  This is extremely frustrating to me.  I believe with a chronic illness a good day is feeling the same based on your individual baseline and a great day is when you feel better than your baseline. Lately, I have been feeling like I am going backward and this is a very scary thought. My disease is degenerative and when I have a bad day I can’t help to wonder if this is my new normal. I am trying to be more positive today. I am trying to think of ways to ease some of the daily problems that occur with Charcot Marie Tooth and Scoliosis but the best medicine has been a positive outlook on life and the day. I find that even though it is hard some days to find the beauty in the little things in life, it makes the big things more palatable. I will leave you with this quote ” We can complain because rose bushes have thorns, or rejoice because thorns have roses.” ― Alphonse KarrA Tour Round My Garden

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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

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