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.” ―
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Category: Chronic Pain
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.
- 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.
- 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.
- 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.
- 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.
- 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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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
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,
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
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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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 Karr, A Tour Round My Garden
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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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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
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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