I’m thirty-one years old, alone and I live with chronic fibromyalgia pain and fatigue. Don’t feel bad about me. Don’t feel bad about me. This isn’t the death penalty. Has this been a challenge? Yes. I do not get myself wrong, I have days when I can’t do all this, but stay with me. I have a life vision that is what I want to live, and I refuse to allow my invisible disease to stop me.
My fresh year at college was officially diagnosed. University. A time to learn, to grow and to enjoy. It’s time to recall, error, and truly begin to live. Let me tell you that. Let me tell you. I did that. I did. University was incredible. I have been living at the campus, making friends, learning a lot about myself, the world and about what I wanted and what I want to do. I have all the experience of college. And there was no fun stopping. I realized that while I have this terrible problem, I don’t have to run or ruin my life.
This is an extreme example, but I’ve always dreamed of skydiving, yet I didn’t know if it’s a fine idea because of my illness. Is my body going to be too stressful? Will it exacerbate the pain? What about the rapid changes in altitude? I stopped interrogating and began to live. I have gone 4 times now, and plan to go much further.
I’ve joined my friends in an adult kickball league. I’ll camp, hike, and go to the beach. I walk around the city in which I live and I’ll go to breweries and brunch. I spend some days hopping with friends around Philadelphia. I go on dates. I just go on dates. I volunteer. I’m aunt (in my opinion the coolest aunt), I keep up. I’m aunt. I’m running, I’m keeping babies down, I’m bending down. We’re playing, we’re laughing. I go to the fitness center and take yoga and kickboxing lessons. I’m going to baseball and soccer games. I just tailgate. I tailgate. I go to games for picnics. In the winter, I go to sleep and play in the snow.
You don’t need to show ignorant people your disease.
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When you’re having bad days, it’s difficult, because people see you and see everything they do. They look like “normal person.” They see all your snappers, Facebook and Instagram posts from you out and around. Then you’ve got a day you can’t get out of the couch. You start to ask whether you really are “diseased” or just lazy or are searching for an excuse to cancel plans. You see how much you enjoy your life and live it, and you and your integrity start questioning it. You’re asking yourself so much. Have I got too hard to push myself? Shouldn’t I go to this concert? Should I skip the festival of beer? The answer is NEVER. Do not skip it. Do not skip it. Go. Take pleasure. Live.
Many people don’t understand what you’re experiencing. This is more than just physical pain. Depression, fear, fiber fog. The balance between good and bad days is unfair. You need to embrace them and enjoy them when you have good days (or even okay days). While fighting so horrifically, any person in pain or not should be confined to their houses and beds. It is so important to spend your life mentally and physically. It is YOUR life, nobody else is to enjoy it. Go to dinner. Get a drink now. Go bowling. Go watch that film. Don’t be scared. If you get something out of what I have to say, you’ll never excuse yourself for having fun in the face of this invisible disease. Living is your life and you are as entitled as anybody else to enjoy this. This is a lesson I have to remember every day, but my life has never been better since I embrace that attitude.
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