A Painful Tour

For today, let me take you on a tour. This is no ordinary tour, no art masterpieces or stunning mountain vistas, no historic alleys or monuments. Instead, I am giving a tour of my pain.

Yes, you heard right. A tour of my pain. After a week of answering “How are you?” with “I’m doing really great” and everyone automatically assuming this means I am 100%, healthy, cured, and able to go like the Energizer Bunny, it is time to take everyone on this tour.

This is not meant to be a gripe session. I hate complaining. This is meant to be a reality check for my loved ones. When you live with what many term “invisible illness”, your daily reality of what is a good day and a bad day is completely different from the average healthy person. My good day means I am successfully managing my condition and pain enough to be productive at work, stay on top of chores at home, and pursue some of my hobbies. But I am still in pain, still fatigued, still unable to pursue the crazy multi-tasking life of modern America. My reality is different from yours.

So let’s commence with this brief tour of the pain I am experiencing at exactly this moment in time on a “great day”.

– My mind is surrounded by a threatening fog, hovering in the recesses and waiting to strike. This means I’m thinking very clearly for me, but still need to write down everything to make sure I don’t forget something important. I can read and engage in critical thought and make decisions, but I can’t do so in an environment of information-overload. I need a calm, quiet environment to be able to focus.

– My neck aches. Most of my pain and stress centers here. It’s a pulsing, throbbing kind of ache.

– Just sitting in my chair, I don’t feel pain in my shoulders, but if you lightly push on them, sharp pains will cascade throughout my back and neck.

– There is a spot in the middle of my back that is actively throbbing.

– My lower back is experiencing a fatigued pain – even sitting up takes too much effort sometimes and all the pain of that effort channels into my lower back.

– Every time I take a flight of stairs, my knees and joints complain.

– My feet experience sharp pains in the arches.

Thank you for taking this short tour with me. Hopefully this helps illustrate what a “great day” is for me. Now imagine a “bad day”. This is my reality. I share this not to make everyone feel bad or pity me; I share this so the next time I say I need to take it easy for an afternoon or weekend, I don’t have to explain myself. I never want to feel guilty for managing my condition so that I can have the best quality of life that is possible.

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About chronictraveler

Chronic Traveler starts as a dream, one that I thought I had lost, but that has slowly changed into a mission to realize and live that dream every day. In December 2007 I became seriously ill and the doctors did not know what was causing my illness. I had to stop teaching as my life tumbled into a never-ending nightmare of doctors, hospitals and tests. Finally, in May 2008 I was diagnosed with a chronic condition - fibromyalgia. I was only 26 years old at the time. I have had to give up teaching, and now work part-time at a performing arts center as I learn how to manage my condition and improve my quality of life. What helped me through the months of uncertainty and sickness, and continues to inspire me, was a new focus on what truly mattered to me: family, friends, gardening, the arts, and especially travel. I have always fed my soul by traveling, ever since I first stepped off the plane at age 16 in Kathmandu, Nepal to help with an orphanage's building project. Meeting new people and experiencing how they live and how they view the world infuses my life with a richness I was so afraid I would lose when the doctor first said, "You have fibromyalgia". This blog is my story, as I begin to forge a new path. I am embracing my life as it is, with the fibromyalgia pain and fatigue, and learning to do what I love regardless. It may mean I have to go slower and take more naps or breaks! But I am determined to learn how to travel and experience the world, and hopefully what I learn will help others like me who believe their medical condition stands in the way of their travel dreams.
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4 Responses to A Painful Tour

  1. hiddenlives says:

    I like this “My reality is different from yours.” I, too, live a different reality due to chronic illness.

  2. wendyburnett says:

    THANK YOU . . . My usual response to anyone except the folks I live with is, “I’m fine,” and the most my husband and roommates usually get is, “I’m having a bad day,” or “ehhhhh.” It’s very rare for me to actually come out and list all the stuff that hurts, although I may ask for help with something with “my hands are acting up,” or “can you . . ., my back isn’t happy.”

    The folks at work get even less information, even if they notice me limping. My stock answer is, “it’s just my arthritis, no biggie.” (Everyone understands arthritis, most folks have no clue about fibromyalgia.)

    • chronictraveler says:

      I’ve learned that if I speak up too much about what I’m actually experiencing, people start to treat me like the boy who cried wolf, so I usually downplay it as wells. But that has consequences too, like everyone being frustrated or surprised when I bow out of social or family outings. It’s a tightrope and I’m still struggling to find a balance.

      • wendyburnett says:

        I’ve been doing this for about 15 years, and I don’t think there IS a balance. People don’t really want to hear it, and if you tell them anyway they DO tend to treat you like you’re exaggerating or faking, but then if you DON’T tell them they get all pissy when they want you to do something and you can’t.

        What’s really fun is when you get, “why didn’t you let me know a week ago that you weren’t coming?”
        The answer I WANT to give them is: “Excuse me, I don’t know how I’m going to feel in an HOUR, let alone how I’m gonna feel next WEEK! Can you tell me how busy we’re gonna be at work, or what the weather will be like, or if I’m going to actually be able to sleep the night before? How about whether I’m going to get a migraine; or something else is gonna break and stress me out, triggering a flare? What, you don’t know the answers? Gee, then what the HELL makes you think that *I* should know those answers a week ahead of time?”

        Of course, I’m usually nice about it and just apologize, but man it would feel GOOD to just cut loose on them sometimes. lol

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