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 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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Being Comfortable With My Disabilities and Decisions

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

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

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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