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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Stumbling into the New Year

The last post I wrote was about not rushing into starting things for this year. This has turned out to be a very ominous post. A week after my post I started to have toe and knee pain related to my foot deformity. It turns out that I will need surgery. Now, I know what you are thinking…what a bummer but I try to be in good spirits when I receive unexpected news. As people with chronic illnesses, we understand that something little can always be a bigger issue.  I am hoping that this will lessen some of the chronic pain that occurs on a daily basis. Whatever the case, I plan to make the best of this situation and hope that I will be able to start my resolutions after I recover. I will leave you with this quote “Look ahead, because life is before you, not behind you, or else you stumble!” ― Mehmet Murat ildan

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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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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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Invisible Anxiety

As a person with chronic health issues, I find myself with invisible anxiety. This anxiety is not seen by others but it is felt by me. I only notice it after I become very anxious. This invisible anxiety would present itself as frustration. I don’t feel that frustration is the best way to deal with this so I am trying to find a way to manage my anxiety in different ways. One of the reasons I feel that this invisible anxiety exists is because as a person with a disability I always feel less than. I try to push myself to be something I am not and may never be. As a consequence of pushing oneself, I become exhausted and this is when my anxiety begins. If I address it at that time, I may be able to calm myself down but if there is a life event that does not allow for a period of rest this anxiety begins to carry over. As this anxiety carries over it will reach a tipping point which in my case means complete exhaustion and rest for an extended period of time. The reason I feel that it is invisible anxiety is that during these days people usually do not see or hear from me. So it seems like I am always doing ok but in reality, that is the one good day I had that week. I do not have a disability that can be masked but I continue to try to make the best of a difficult situation. I have learned that the best way to conquer this anxiety is to make it visible maybe not to everyone but at least to yourself. Once that is done and you brought the anxiety from the darkest to the light, you can begin to deal with your anxiety in real time instead of waiting until you have no choice but to deal with your anxiety.  I will leave you with this quote “Our anxiety does not empty tomorrow of its sorrows, but only empties today of its strengths.” ― Charles Haddon Spurgeon

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