Trying with CRPS: What Do You Do?
By Autumn Strand for the RSDSA blog.
687 days ago I was robbed. Nothing of any monetary value was taken but something much more priceless was: my health.
When you think about the value of things and what they mean to you, I believe that one’s health is often overlooked. That is, until it isn’t anymore.
Before I fell and got RSD/CRPS, I was a college student studying journalism at the University of South Florida and I loved it. It was challenging in a way that took me completely out of my comfort zone, made me think about things with a different outlook and was the most difficult thing I have ever done but I really thrived on it because it was a dream being realized. I have never been what you would call a “social butterfly,” but I had friends and I did things that made me happy. I went to concerts frequently and in the short time I was at my university I saw Elton John, The Lumineers, Imagine Dragons, The Neighbourhood and Luke Bryan in concert (to name a few). Nothing would make me happier than to go to a show and watch live music. This was my drug. I would drive all over Tampa exploring new places and doing new things. I would make the 3 hour drive to Jacksonville to see my family and do fun things with them. The only thing that held me back was my imagination.
Fast forward to now.
I speak a lot about what has been taken from me. All of the things I mentioned above have been taken from me, but also so much more. Pain is now the theme of my life instead of happiness. My drug is no longer music; it is a wide array of things that are supposed to make me feel better. Spoiler alert: they don’t. I couldn’t even consider going to a live music show now because the music would cause me to not only have a tremor, but it would cause severe pain. I cannot drive around anywhere for very long because a paroxysm is sure to hit me at any moment. One of my favorite things used to be driving around with the windows down and the music loud. Now it’s more like driving to the doctor with the music very low. Music and driving weren’t the only things taken from me though. Every single aspect of my health was. I wake up in pain every day and go to bed in pain every night. No matter how many hours of sleep I do or don’t get I am exhausted. I am talking about the hit by a train and then run over by a semi, beaten to death while having the flu kind of exhausted. Every day. I am always nauseous to some degree and live off of ginger ale and saltines. I have to think about every move I make so it will (hopefully) not cause me to have a tremor. I get hot flashes so severe I look like my face and neck have been blistered by the sun. I can’t shake someone’s hand or give a person I love a hug. I can’t bake, write, use a knife, use scissors, knit, go to concerts, sleep, cook a meal or even find a comfortable position to sit or lay down in. Even typing this blog post has caused me an immense amount of agony. The list seems to never end. And bonus… any recounting of my days and/or pain sounds legitimately awful and also a tad pathetic to me which just makes it that much worse.
I often think about this question, when everything causes pain, what do you do? The only thing I can come up with is, you do your best. Some days, I cannot do much more than breathe, but then other days I get dressed and look like an actual human woman instead of an extra on “The Walking Dead.” I try my best to have hope for a future when there will be something that will make me feel better and I will be able to return to school and seek out my dreams. I am optimistic for a life where happiness replaces pain. One day, I will get over the anger of what happened to me and move on to what I can have instead of what I do not. Until then, I will try my best. To quote my all-time favorite heroine Scarlett O’Hara: “After all, tomorrow is another day!”