I am able, I am weak. I am some strength, I am none. I am being, I am thought. I am all things, said and done. I am born, I am died. I am dust upon the roots. I am grace, I am pain. I am labor of willed fruits. I am certain, I am doubtful. I am desperate for solutions.
I am a teenager suffering with Reflex Sympathetic Dystrophy or as I call it, RSD. You may know me personally or you may not, but who I am is not really important, only the fact that I live in chronic pain matters.
I need to tell you several things, including what I have learned from having RSD, but first I am going to tell you what it’s like to be a teen living with RSD.
Everyday, the average teenager wakes up, gets dressed, goes to school, talks to friends, participates in sports and other activities, goes home, does homework, and then goes to sleep. However, the RSD teenager is not able to do these things. Everyday I wake up and the first sensation of the day is pain. I get dressed slowly because clothes and socks are such agony to pull on against the skin. School is a blur and I go tiredly home since I can’t participate in any type of sports. When nighttime comes, the war between pain and exhaustion battle inside my body. Pain wins… sleep loses.
Are you beginning to understand me yet? Now, before you start making a stereotype of RSD kids, I need to clear up a few things that tend to be common misunderstandings…
RSD kids rarely look sick, maybe tired, but not sick. Please do not make comments such as, “ but you look like you feel better!” When I feel better, I will say that I feel better. Also, remember that like any other teen, I want to look nice I don’t want to look sick.
I have also received remarks like this, “ well you can’t be in too much pain if you’re still smiling!” Now, let me ask you this; have you ever been sick with a cold or flu? You are probably thinking about how grouchy and depressed you were in the five-day span of that cold. However, most of us with RSD have been in pain seven days a week, 24 hours a day for weeks, months, or years. I cannot be depressed all the time. I try to be positive and happy for my friends and family, even though there are times that I’m not as happy as everyone assumes.
I would like you to understand that RSD is a neurological disorder, not a psychological disorder. Remember that while depression may occur after RSD and might hinder recovery, depression does not cause RSD. Also, being sad or depressed after the onset of RSD does not mean that any of us are crazy… wouldn’t you be discouraged if you spent every day, every hour, and every minute in pain without ever knowing when or if you will recover?
Please don’t expect me to act the same and think the same as I did before RSD. Constant pain can make me annoyed and sometimes I get frustrated easily. Meds can make me drowsy, dizzy, or might give me headaches. I might miss school for doctor appointments or physical therapy. When I do come back to school I am often tired, so if I can’t carry on a conversation or concentrate in class, please try not to get impatient with me.
Have you seen me walking? Or have you seen me with shoes and socks on? Please don’t ask me absurd questions like, “ does that hurt?” Of course, it hurts. It hurts so much sometimes that I don’t think I can bear the pain anymore and I wish that I could just curl up and die. Please understand that I have to do things such as trying to wear a shoe or sock or walking to get even a little better. I know I have to do these things, but it is extremely painful because of the hypersensitivity. Please don’t act like you understand everything about RSD because you don’t. I don’t mean to sound so harsh, but reading an RSD brochure or looking through an RSD info site doesn’t make you and expert in pain until you have experienced it. Unless you are and RSD’er, please don’t try to keep offering me recent advice or a “miracle cure.” I understand you want to help me, but only I know what helps me and what hurts me.
An RSD’er once said that sometimes with RSD you have to take two steps back and one step forward. This statement holds a lot of truth to it. RSD is unpredictable and none of us who suffer with it ever know how we will feel from day to day. I think that is the hardest thing for anyone to understand though, except for those of us who suffer with RSD. Everyone thinks that once we get on the road to recovery, we should stay there… but RSD differs greatly from a football injury or a ligament strain and we are going to have many setbacks. One day, I might be able to move around a lot, the next I can barely get out of bed because the pain is so bad.
Don’t ever accuse me of not wanting or not trying to get better. You’re not with me all the time and you don’t know how much I have tried and continue to try to get better. Small things like trying to desensitize my skin and letting water from a shower flow over my leg or just lying my foot on the ground is an achievement for me, but of course no one ever sees that. They just want me to be able to jump one day and be healed. You don’t know the pain, the loneliness, the fear, or the nightmare RSD is. I remember the first time I was diagnosed with RSD. That was horrible.
It all happened late one night at homecoming in the seventh grade. I was running around having a great time watching football, and being with my friends. Then something happened that changed my life forever. At first it felt only like I twisted my ankle, then the pain spread up my leg to my knee. The pain was so bad but I didn’t want to admit defeat so I kept playing and trying to have a good time. I didn’t think anything about the pain until it got worse and worse, so bad I could barely stand. I was stupid. Instead of going home I stayed for the bonfire that was after the game. Then after that I got a ride with one of my friends and went home to see if rest would make my leg feel better. In the morning the pain was worse than it was the night before. I couldn’t go to school and my mom took me to the doctors. I couldn’t put any pressure on my leg so I had to hop everywhere until I got a pair of crutches. The doctor thought it was just a sprain like I had, so he wrapped an ace bandage around my knee. After a few days the pain was still just as bad so I went back to the doctors. Now they thought maybe it was broken so I was sent to the hospital to get X-rays. There was no break anywhere and that is where the RSD ‘theory’ comes in. I had to have a ton of tests and all of them read RSD. That was when I was diagnosed with the worst possible neurological disorder a kid could get. Life was not the same anymore. I blamed everyone for my problems even though they had nothing to do with it. But then I learned that my problems were mine and mine only. I learned that I had to be strong in order to keep my life semi-normal. It was hard but here I am today, I am resilient, a survivor and determined not to quit fighting…
And what I really need is for you to understand me. Remember it is still me inside this body filled with awful pain and I still like laughing, talking, and doing ‘normal’ things. Remember that I’m still me even though I have RSD.
I have learned that every child with RSD has a story almost exactly identical and if his or her name weren’t there, the stories wouldn’t be able to differ much. I have also learned that life should be taken in stride. So, my time on earth, on fate depends. But all that happens in the space we are meant to live depends on me and choices I face. For better or worse they’re mine to make. So my time on earth will be well spent and when I leave this world I’ll leave with no regrets. And I will continue to learn about what RSD teaches me…
No one really understands that just because I’m happy it doesn’t mean that I’m not in pain. Everyone here at school, kid wise, they don’t think that I’m in pain at all. In the past I’ve had problems with being called a slacker and a faker. One of the kids threw a football at my leg. It hit me right in the middle of my calf on the right side. I dropped to the floor and cried as I hugged my leg. That was the first time I cried since my dad died, eight years ago. I have also been accused of faking my doctors note. My school system is so messed up and nothing ever gets done. I still go to school though.
It just feels really good to talk to people who understand. But there is one more thing I have to say…
I feel guilty about all the money my mom has to spend to bring me to doctors, to pay for medicine. Granted the insurance pays some of it but its still a lot. I feel guilty about all the times I had to ask for things because I couldn’t do it myself. And some days I wonder if I’ll ever get better. In the beginning therapy worked great but now I’m kind of stuck. It’s been almost four months. It’s been really hard.
If there was ever a cure for RSD I hope no one would have to suffer anymore.
Well I guess I should go to my next class.
P.S. you can read a ton of my other writings on my homepage on live journal, my username is spirit_wolf13…
Life with RSD is no life at all, but for some reason unknown to me, certain people are allowed to be given suck an agonizing, debilitating, horrible disease. One that can, and will, make or break you. Those who are given RSD, what strength, courage, beauty, wonder they must all possess. Waking up, or not sleeping at all, and the first sensation known in the morning is pain. Yet, we still carry on, still go to school, go to work, attempt to live a life as normal as possible. Although others wont see it that way. The very clothes on our backs hurt us. Oh, and shoes and socks? Impossible to wear any longer… A hug sends fiery, shooting pain throughout the body, and the blowing wind can cause an RSD’er to double over in pain. There should be an award given to everyone who has or has had RSD because, my God… how can one live in such daily pain and agony? Such distress and precaution? Those with RSD, who battle it everyday and fight on and not give in. Who possess the inner strength to persevere, who don’t cry and ask for help when they are noticeably in need… Those who are allotted for this ‘task’ must be angles, hand selected by God to serve a much more fulfilling purpose, a reason one must be… An RSD angle.
RSD is a chronic pain syndrome caused by the sympathetic nervous system going wrong after an injury. Instead of touch and movement your sympathetic nerve system sends messages of pain to your brain. The pain is hard to describe but its like a burning pain that never goes away; as if you’ve got your leg stuck in an oven. Its like all of your senses turned to their very extremes. It feels like someone is stabbing you with a knife even though they are only touching you. It throbs and stings, with a tingling that just wont go away. Even clothing, a gush of wind, or the slightest touch can cause lots of pain. I have RSD but I am resilient, a survivor and determined not to quit fighting.
My dream is there to one day be a cure for RSD. A dream is a wish your heart makes. It means so many things. You may be dreaming but all along you’ve been wishing. Or a dream may come true because you wished for it. There is so many things it means, but I know and you know that it means we both dreamed for someone to listen to, and our hearts wished for someone to listen to us. Or does it mean that when you dream you actually want to wish for whatever you’re dreaming about and hope that it will come true? Or maybe you want something so much you dream about it just to wish for it in the end. You dream and wish for a friend you can trust. In the end each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born.
A cure for RSD is truly a dream, a wish, my heart makes everyday. Right now I can’t do anything to help make my dream come true. I hope to help find a cure in any way possible even if it means starting by just helping the people with RSD know that they aren’t the only ones out there. Let them know someone cares. Ever since I got RSD a cure has been a dream of mine and I don’t think it will ever be replaced by another dream as strong as this one. I can help people with RSD not let themselves be taken by this disease, help them go on living the life they were meant to live. Who knows, maybe a cure is too much to ask and will always be just out of my reach. Then again, years from now a cure might not be just a dream that’s thrown about by people who don’t care. For now it’s still just a dream…
