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The One Liberating Thing About My Chronic Illness

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Every day I don’t know what to expect. My body seems to be playing a game called “Guess the Symptom.” Raging pain or nagging pain? Feeling energetic or feeling fatigued? You guessed it, fibromyalgia can be massively unpredictable and draining. Fighting with it is like throwing sand on the beach.

As with all chronic illnesses, it’s with you for life. But that doesn’t mean life has to become all serious and your life is over. Oh, hell no, it’s not!

A couple of things have happened to me since my diagnosis and gradual and ongoing acceptance (It fluctuates, and I’m never 100 percent committed to the fact that it will always be there, loitering in the background.) 

Work, well, that more or less ended in the form I’ve always know it. No more 40-hour weeks. I just spend time at home with the family. Money is very, very tight — to the point of nonexistent. My doctor keeps asking me if I’m depressed, and to be honest, I’m not. I’m really not.

Although the pain gets me down, the plus has been I’ve rediscovered myself and redefined myself. It’s like a creative process. It’s amazingly liberating. So when I’m having a less painful day, I go through my old clothes and jewelry and see what new outfits can be made from them and figure out what can go to the charity store. Or for maximum excitement, I pop something on eBay.

Since there’s no real spare cash with no more corporate job, my hair is now dyed at home. That means I can try the colors I’ve always wanted like luminous red or emerald green.

When I’m having a pain day, I’ll try to read stories online during the moments while I’m awake. I’ll look up a subject on anything that catches my interest. I’m now fluent on conspiracy theories, the history of the band Rammstein and pagan festivals. I’m also reading everything I can about body piercing. When I’m ready, my next profession is going to be a piercer. So you know whatever floats your boat!

The bad days also involve YouTube videos and music. I can’t emphasize enough how much music helps me with the pain. Most of the music I listen to is metal, so it doesn’t have to be relaxing sounds and whale songs.

There are ways and means of enjoying yourself without leaving home, without Netflix and being on a tight budget. It’s important to manage your pain, so don’t lose yourself to your diagnosis. You’re so much more than that.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Originally published: July 18, 2016
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