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Some Days Are Worse Than Others

No two days are the same and some days are better or worse than others. The fight just never seems to go away, and it begins anew every morning.

Some days I can muster the courage to fight, and other days I go to bed and have a nap.

Positive self-talk goes a long way

On the days when I can find the courage, it is the result of using positive self-talk and practicing gratitude every day. It is not lost on me that I have survived what should have killed me and I am lucky to have this life.

Upon finding the courage, I drink it in. I feel strong and brutally push through, making those days seem easy.

Getting good sleep

There are days when I just can’t control myself. My breathing is labored, and my body seems weak.

These are my nap days, and although I would like to bypass the nap, my body just won’t tolerate staying awake. I use my BiPap when sleeping, and some days I can sleep for a few hours and wake feeling entirely better.

It causes havoc with going back to bed at night, and I know these nights that the damage is done, and I won’t sleep well.

Weather plays a part in how I feel

For me, the weather plays a big part in how I feel from day to day. I have evidence-based information that proves the weather matters to me.

It is scary because this is the part that I can not control. On hot and humid days, rainy days, or days that are extremely cold, I am down and out, even when I stay inside.

Sometimes I don’t even realize that the weather makes me scared that my symptoms are progressing and I am losing control.

Being mindful when eating

I now know that what I eat has a big impact on how I feel. It is not enough to eat a clean diet; we must also be mindful of the amounts we eat at each sitting.

Breaking meals into two parts about an hour and a half apart helps our diaphragm move easier. Having too much of anything is not good for us.

It scares me that eating a dinner of roast beef and gravy is now taboo because I have eaten that every Sunday all my life.

Taking care of ourselves

One of the scariest parts of taking care of ourselves is our personal hygiene. Regardless of your preference for a shower or a bath, the combination of hot steamy water and the effort that we put into cleaning ourselves leaves us breathless.

More breathlessness makes it all the scarier. If we don’t learn to control our breath in the shower or bath, we tend to avoid them.

We begin to feel ashamed of ourselves for not being able to jump in and out of the shower.

Managing fear

I recognize that fear is just fear of the unknown, and the more I learn about this disease and how to manage it, the less fear I feel.

Editor’s Note: We are extremely saddened to say that on January 7th, 2024, Barbara Moore passed away. Barbara’s advocacy efforts and writing continue to reach many. She will be deeply missed.

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