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

Quotes from Goodreads

It’s been along time…

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

If Then Dilemma

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

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

Does Monitoring Your Habits Benefit Charcot Marie Tooth?

I am reading a book called Better Than Before: What I Learned About Making and Breaking Habits By Gretchen Rubin. In her book, she talks about Monitoring. She states this about monitoring and why it is important. “Monitoring is an observational strategy. It doesn’t require that I change what I’m doing, only that I know what I’m doing. This is crucial to habit formation, because once I recognize what I’m doing, I may choose to behave differently“. I started by going to and downloaded her Daily Time Log. This not a very rigid log, it’s about every half an hour and you can print it out and write on it as needed.  I wondered if seeing how I spent my time would have an effect on how I used it. I have never been very good at keeping track of anything but I thought this may be an interesting experiment for me. I will leave you with this quote “But if one observes, one will see that the body has its own intelligence; it requires a great deal of intelligence to observe the intelligence of the body.
Jiddu Krishnamurti, The Flight of the Eagle

Managing Expectations With Charcot Marie Tooth and Scoliosis

I am my own worst critic. I have been this way for as long as I can remember but as I get older it seems to be getting worse. The gap in life between me and the rest of the people in my life is widening. As I am getting older I am getting more sick than people around me or maybe I have always been this sick and time has finally caught up with me. Either way, I feel that my expectations should not be focused on the negative but should be moving toward the positive. This thought pattern may not necessarily be a problem for most people today but in my case I want to feel like things have not changed at all when they have dramatically changed. I think it’s human nature to try to keep things in order by repeating some of the same habits that you have done in the past but what if those habits do not apply or you are unable to do them in your current life. I always expect that I will be able to function the same way or similar to people of the same age but unfortunately for me that is not the case. So, I am starting to learn how to manage my expectations of myself. I will not be able to do what a person my age or even possibly older can do because of CMT. I know what you are thinking, you are giving up, you should try harder but that’s not it at all. I am finally fine with not having any expectations. This does not mean I am floating through life like a cloud in the summer sky. It means that when I expect to do something and I do not feel up to it the next day or even later that day I feel like I have failed. This feeling of failure is caused by my expectation of me being able to do something that I want to but am unable to because of CMT. As a person with CMT, I am not sure how I feel day by day or even hour by hour so for me to have this unrealistic expectation will ultimately create the pressure to push myself too far. When this happens, I feel myself getting more sick and I feel like I have failed myself and others. I am starting to learn how to manage my expectations on a daily basis or even hourly basis. I spend a lot of energy thinking about all the things that are going to happen instead of saving my energy and appreciating the things that are happening now. I am going to manage my expectations to create an updated version of myself in which the critic is not an enemy but it will no longer exist. I think that we should expect our best but not expect that best to be more than what we can handle. So, give yourself a break and manage your expectations so you can prevent yourself from being in the endless loop of negative thoughts and feelings. I will leave you with this quote “I’m not in this world to live up to your expectations and you’re not in this world to live up to mine.”
Bruce Lee

Why asking for help may be the best thing you do today?

I have trouble asking for help even for the smallest things. I feel that it is a sign of weakness or worse, a feeling of failure or defeat. I have always felt this way. I am a stubborn person so I would rather do it myself than admit defeat at the hands of a small grocery bag that I am unable to carry. I will fumble, struggle and almost tumble just to prove I could do it until the bag breaks because it took so long for me to carry it. I always had an uncomfortable feeling when I asked for help which eventually became an insecurity because I knew I was different. I hoped that if I did this small aspect of daily life it would make all the other things less noticeable but I was wrong because my body paid the price soon after for my bad decision. I would be in pain for days or even worse I would injure myself making  me immobile for weeks or even months. All of this aftermath just because I could not admit that I need help. In my mind, I felt like I was doing the right thing but it was 100% the WRONG. Now, don’t get me wrong, I am not saying that you should not attempt to do things but if you attempt them and you feel like this is a stretch for you or there is a very good chance this might not be a good idea, your instincts may be telling you this may not be the right decision. You need to ask yourself “is it worth it? If the answer is no then the task being complete does not outweigh the risk. I think that sometimes because of my disease I take on more than I can handle on a day that I am feeling good and regret it the next day when I am feeling bad and cannot complete my task by the promised timeframe. I notice another thing as well,  I want people to offer to help instead of me asking but if you wait for other people including family they may never ask. This may cause anger, frustration and resentment on your bad days but they don’t know when, how and in some cases why you need the help.  I have learned that you may need to ask for help in certain times in areas that your disease limits you but you can help other people in areas as well. I think balance is the key to asking for help. You must give as much as you receive if you can of course. Also, remember, giving or being help could be a funny story, emotional support or even just a positive attitude because depending on your disease physical help may not be an option. I have found that if you help someone as much as you ask for help both people seem to be fine with it. Only when people feel that the situation is one sided that they feel like this a bad situation for them. So, help where, when and how you can in a way that you can do consistently because doing something once and never again will not help both people in the long run. I will leave you with this quote “When we feel weak, we drop our heads on the shoulders of others. Don’t get mad when someone does that. Be honored. For that person trusted you enough to, even if subtly, ask you for help.”  by Lori Goodwin.