My Story- The Ugly side of MS

 MS is not a pretty disease by definition. There will always be beauty in its parts. There will always be lessons learned. There will be laughter. There will be friends made. Some days I get to encourage others, and that is amazing. Some days though. The ugly side is bigger. It is meaner. It is just harder. 

Recently- for the last 3 full weeks-I have dealt with that. The knocking down of my once too good immune system is hard. My sweet boy caught a cold. He shared it with me and I cannot recuperate. Upper respiratory became lower respiratory which became bronchitis.  Steroids. Doctors. More doctors. So damn grateful for my physician friends. The ER. I hate the ER. Not the people working it, they are heroes. The situation of the ER. The people who use it for their PCP driving the cost of healthcare higher. The chaos of the waiting room. The fear and anxiety. The needles. I hate it. I am thankful it exists, and for what they did for me. 

This last 3 weeks has taken a toll. It is hard to stay positive and laugh when all you want to do is cry. And, trust me, I have cried plenty. Then there is what being sick does to an MS body. It feels like you are working out nonstop when you are resting. Too bad it doesn’t burn the calories. :) my arms are heavy. Doing minimal tasks require maximum effort. Random numb patches. Random blurry vision. Muscle spasms. Not sleeping. It is hard. 

I like to be positive. I like to share the happy. I like to overcome and help others. I also want people to know that just because “you know so and so who has (insert any illness) and they are OK” does not mean that they are actually OK. They may not need you to do anything for them. We all just want normal. But I am not always ok. And I try to be honest with the struggles because others need to know they are not alone. No one wants to feel like they are failing at survival. We all need to know it is ok to grieve the process. 

Some days I smile and laugh and say I have MS without tears. Somedays I cry waiting to pick up pizza for my kids. Having to constantly recognize your limits because the one day you do not takes 3 days to recover. I am OK. I will always be OK. There is goodness in every single day. There is also something I lose in most days. And there is mom guilt. Wife guilt. Self care guilt. 

Tomorrow, I will be better. I won’t be so worn down. I will be rested. That permanently numb foot wont bother me. The numbness in my arm will be gone. My vision won’t be blurry. My smile won’t be missing. My laughter will be loud. My love will be big. I will play games with my kids after work. But today. Today is hard. MS can be ugly. And that is ok. 

Let me not be mistaken, I am OK. I do not need anything. I am just sharing my truth for those who care to follow this journey. We are good. Today us just a hard one❤️

Comments

  1. drakeskkJuly 5, 2021 at 4:29 PM

    Oh, how I love you! And, I am thankful that you don’t have any quit in you!

    ReplyDelete

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