Tzipi started a new blog about her personal battle with RSD.
What It's Like To Live With RSD:People who know of RSD can imagine or understand that living with unimaginable pain is difficult. Sometimes they will even understand that it is difficult beyond belief. People who have done their research will know that 88% of RSD patient are suicidal, or that you are 900 times more likely to be suicidal if you have RSD than any other known condition in medical science. You may think that it's because of the pain, right? Being told that you have to live with what is considered to be the worst pain that a person can experience. Sure, you can get it to go into remission sometimes, but there is always that chance that it will come back; and there is no way to know whether it will come back more severe or less severe. Maybe that is the reason....
Or maybe you think that the reason RSD patients are suicidal is because they have a disgusting looking leg, or arm, or hand, or foot exposed for the world to see. That it is a constant embarrassment. Especially when, for example, you are sitting in a wheelchair and someone asks you what happened; you reply, "RSD," and they just stare at you with a blank face.
Or maybe it's because so many doctors have told you that it's all in your head or that you are making it up.
Maybe it's because your doctors say that you will never be able to have children because the physical trauma of labor will mostly likely bring back your RSD (if it had gone into remission). There are hundreds of reasons that you may think would cause someone with RSD to want to take their own life, but if you actually sit down and ask them, they won't say that it is because of the pain, or the change in their lifestyle. It probably won't be because so many of the things that they had planned on doing in life they can longer do and will probably never be able to do - whether or not remission is achieved. It probably won't be most of the reasons you thought of.
If you ask someone with RSD why they would want to take their own life, it will most likely be because of the effect they have had on others. It will be because no matter how many times people tell you otherwise, you feel as though you are a burden on whoever it is that is taking care of you. No matter how many times your family says they love you and want to help you get through this and that they don't mind, no matter how many times they say they want you living with them and want to go with you to the doctor or hospital, or that they don't mind helping you walk with crutches because there is a risk of falling due to weakness or a black out, no matter what they say, you will always feel like a burden. You will always feel guilty for asking for that extra cup of coffee. You will always feel guilty for all of a sudden making them stop dead in their tracks in the middle of doing something because you are hungry and would like something to eat, but you can't walk so they have to bring it to you. You will always feel guilty making them pause their movie to help you go to the bathroom. No matter how much you try to change your lifestyle so that they don't have to help, you will always feel guilty that you can't take care of yourself 100%. You will feel guilty about the extra money they suddenly spend on food because there is another mouth to feed. Or the extra money on utilities because you are unable to stand up in the shower and need to take a bath which uses more water. You feel embarrassed that they have to set up everything in the bathroom just so that you can take a bath or use the toilet. You feel guilty about taking up the extra space, the extra attention, the extra time.
If you ask someone with RSD why they would want to take their own life they won't say that it is because they can not cope with the RSD. They will tell you that it is because they no longer feel a part of the family, but rather a burden on the family. Every time you hear someone say it's harder to be the caretaker than the patient you die a little inside because you know it's true. Every time you ask for that bit of extra help that you need you feel so sorry that you are in the way. Every time your family cancels their plans because you can't be left alone, but you also can't come because you need to travel by ambulance, you want to cry.
Living with RSD is hard because everything changes; because everyone is ripped away from their comfort zones, their routines. Living with RSD makes you sad because you see how your family is stressed from making phone calls for you because your medications make you forget important things and you can't think clearly or make sense. You feel ashamed when you do try to help but don't do as good of a job at whatever it may be, whether calling to make a doctor appointment or something simple like putting your clothes away.
Living with RSD makes you fragile, not only physically but emotionally as well. When someone gets mad at you for whatever it is that you did or didn't do, it hurts. More than it should.
People mistake this as self pity. It's not. It's sadness, and if you have RSDRSD. I didn't ask to get hit by a car, and I'm definitely not saying it's my fault that I did and that I got sick from it. But it is my fault that everyone is stressed. I am a burden, and I know that for a fact. When you have RSD you are always sad. You use all your strength and energy to fight the RSD, to not lay in bed screaming and going hysterical over the pain. It doesn't leave you with much strength to try and be less in the way and more productive. I use all my energy to fight the side-effects of my medications. It is hard, and it is even harder not to get down when the people around you think you aren't trying hard enough.
Four months ago, I didn't have RSD. I could walk, run, jump. Now it's hard for me to go to the bathroom or take a bath. It is hard for me to focus enough on my hand-eye coordination when I eat to not make a mess and get crumbs everywhere. I don't pity myself at all! Life deals bad hands a lot of the time. What makes me feel bad isn't that I have RSD, it's that everyone else has to learn to cope with it.
RSD, takes your life and your family's life. And that's what it is like to live with RSD - to not be able to live.