“Oh, oh, oh, it’s dynamite!”
© The Mighty
Man in Christmas market
As my brother-in-law and I complete our impromptu dance routine to the latest BTS hit (mainly to embarrass our daughters), I stop and think I’m going to pay for this tomorrow. After all, even something simple can have major ramifications for my daily struggle with rheumatoid arthritis.
My life has been anything but normal, so why should my days be any different? I was diagnosed with RA at the age of 15, so few things have impacted my life on a daily basis more than arthritis. You never quite know what the day will hold when you have this chronic illness, which is extremely unpredictable.
As I woke up the morning after the “dance party,” I lied there in bed, a little nervous to move. Waking up with RA, you never quite know what you will feel. Will I be stiff? How much pain will I have? Will I be able to accomplish the things I need to accomplish? Do I need to take it easy this morning, or do I just push through the pain and do what needs to be done?
For many people fighting this disease, these questions are the most prevalent and on the forefront of many peoples’ minds. Sometimes you can trace your pain to something you did that might not have been wise, but many times you cannot. Left to the mercy of your own body, you are never quite sure what will cause your joints to flare; sometimes you know, but often it is a mystery.
That morning I knew exactly why I was in pain. I decided to have fun and be a little crazy last night, and I knew I would pay. Sure enough, I did. I could feel my stiff joints, and I knew today would be a struggle. Getting dressed, driving, writing, typing and even just walking would take more effort than they should — and would, at times, be more discouraging than most would know.
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As I slowly move to begin my day, simple tasks that should be quick take twice as long and often hurt when I am doing them. The more I move, the more my joints begin to loosen. I stumble downstairs (Why did I buy a two-story house again?), I sort my daily pills, and I begin my day with the handful of “little friends” that will help relieve my pain and enable me to make it through the day.
Too young to retire, I must keep working, I must keep moving, not only to provide for my family, but to also keep my body from withering away more quickly. It is a cruel twist of irony that exercise and movement are so helpful to fighting this disease, but exercise and movement are also often the most challenging things to do.
So on I fight, not only to accomplish the normal daily tasks, but also to keep this disease at bay. “Fight” is probably the best word to describe daily life, because it’s what battling this disease boils down to: fighting your own body daily.
“Unpredictable” would be the next word right behind it. You never know what you will be able to do and not do on a day-to-day basis. One day you can dance just fine; the next, you can barely walk without assistance. One day you can participate in everything you desire to; the next, you’re lucky just to be getting out of bed. Frustrating? Absolutely!
And that brings us to the third word: “appreciation.” The pain, the battle, the unpredictability, they all create one final thing: appreciation. Appreciation for the good days. Appreciation for the small victories. Appreciation for all the little things — driving, dressing, walking — that so often in life are done without a second thought.
A day with RA is anything but normal. It is hard. It is a constant battle, it is exhausting, and there are days when you are just done, because you are just so tired of the fight. But there are also days of small victories, days of encouragement from others, and days that are good and give you the strength, encouragement and hope to keep fighting and never give up.
A typical day? Not sure what that is with RA, because my day is anything but typical. But maybe in a sense, the atypical is actually typical. So I guess a typical day in a life with RA simply means you have no idea what will happen and what to expect. So we cherish the good days and fight through the bad ones — and simply try to keep going one day at a time. That is what a day in my life looks like.
Charles Mickles is an author and speaker. He has written Mine’s Parkinson’s, What’s Yours? and What Christmas Really Is All About? You can follow his story at www.minesparkinsons.com .