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Chronically Writing: Pacing

Writer's picture: saraelliemackenzie82saraelliemackenzie82

Yeah, About that. Chronic illness has a way to keep me from resting and running errands. The meme describes it best. I want to rest because I am too tired to be a human being, but I hurt too much to sleep.


In this edition of Chronically Writing, I want to talk about how I pace myself. Because the meme is a situation that happens very often, I have to work out the balance. Add in being at home almost 24/7 and having a husband who is also chronically ill and a special needs child, this is a must.


The biggest problem is that everyone wants me to be with them at the same time, all at once. I do not have enough pieces of myself to go around, not even for me.

It has been that way for years. Never mind the years I spent abused. Since becoming a mother to an autistic child, I've had to learn many things. Not only did our circle become much, much smaller, we learned that they did not want to understand our circumstances and judge us on those they experienced.


There was a point in my life where I was going to school and work full time, at the same time. Calvin was under 3 years old. My husband was also working (at the same place I did, by the way). We lived in northern Maine, so we had no family around, nor any reliable people we knew.


The biggest lesson was learning how to do things alone. The times it was just me and my son, I learned how to juggle being a mom, running chores, tending to his needs, etc. I always had safe places I could put him down, like a playpen where he could see me. However, the more needs he required, the more I had to plan. Initially, it was becoming numb to everything because I felt like everything had to be done. I did education and day job at the same time I was running a household, cooking and childcare.


It's trial and error. Unless there is total disregard for any child and complete abuse (no matter how pretty it looks on the outside), I think that any mom is a good mom, no matter who you are. I mean, I was a young mom. I like it now because I still have the energy to chase Calvin. He's also 12 years old and becoming more independent.

Even now, my husband and I are still working out our communication skills and how to divvy up the household. With chronic illness, it can change everyday. Today, I could be all right and run around to do chores. The next day, the rules could change and I am dragging myself out of bed with legs and arms like lead.


There are days when it is both. I have some spoons, use them, and sit for a while. Regain a few spoons, I am up again. Sometimes, like everyone else, I overdo it. Spend a whole day on my feet. Placed 1000% attention on Calvin and taught him social skills and how to be more aware.


Like I said, trial and error. But at the end of the day. I know that I did the best I could. Sometimes, it is with the negative emotions. Other times, I am the champ, the Queen of Cool. No matter what, I am on top of the world and I CAN figure out how to function in a world that has no empathy.

There was something I watched a few days ago. Nora O'Donnell on CBS was interviewing Oprah Winfrey. Yes, I get it. Some of us don't like her. But there was a segment about a book she and Arthur C. Brooks wrote. While it talks about the step-by-step guide, the interview had something that helped me.


It was about being a happy person.

Oprah said that everyone is a happy person...with negative emotions, like anger, depression, etc. That really got me thinking: if we were all happy, all we had to do was unlock the doors we've placed upon us to hide it. In order for us to truly have that happiness and empathy, we have to face all of the doors.


I've been working that into my pacing. Yes, I am a happy person. I just have emotions and a physical body that is behest by a disease that cannot be cured. That does not define me, the soul. We are not victims chained to our trauma.


If you want to learn more about the book, the CBS article is here.


Sorry this is short, everyone. I still have some serious cleaning and editing to do. I spent yesterday lounging for far too long. I am excited about the new season of The Crown and watching everything I can. I am excited about what's coming!!


Namaste, everyone. Have a great rest of your week!


 
 
 

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