Betrayal

Eventually everyone who has rsd/crps feels that they have been betrayed by their body. You feel it has a mind of its own and is on a path that is contrary to whatever plans you might have had or have.  I have felt betrayed by my body several times; the first time when I realized that I could no longer make my hand do what I wanted to do without severe pain and the second time when I realized that I could no longer work because of the pain or the side effects caused by the medications.  

I felt betrayed was when I noticed that my fingernails were no longer growing like they once had and were thinning out, splitting and tearing and finally growing over the ends of my fingers.  I lost the hair on my right arm which wasn’t so bad except that the left arm was still quite hairy; I looked lopsided and there were quite a few people who made mention of it.  I felt betrayed when my hands went numb and I would drop the things I was holding; something that still goes on to this day and which has become an expensive proposition as I have gone through six sets of glasses and five sets of dishes as of this writing. 

I felt betrayed when I found that I could no longer sit on a chair because crps had moved to the site of where the surgeon had placed the neuro-stimulator generator.  I felt betrayed when I could no longer make myself walk up the stairs and eventually walk at all without an assistive aid.  I felt betrayed because one week I was wearing a size 14 petite and the next week I was wearing a size 22.  I felt betrayed when I realized that I was falling down more than I was walking and needed a wheelchair to get around.

Eventually, you feel betrayed by your entire body because as the disease progresses it seems to eat away at the person you once were and leave you with a body that you barely recognize as your own.  Rashes, swelling, hair loss, memory fog, hormonal changes, heart, bowel, bladder, stomach, mouth, eyes; all affected in some way or another either by the disease or the medications that are prescribed for the disease.   You learn to hate they way you look and the way you feel and you learn not to trust your body from one moment to the next; the way it acts, feels or looks.

It is normal to feel like this; everyone with any type of disease that can alter your body does at one time or another.  However, it is the way that you reconcile yourself with these feelings that are important.  Try to pamper your body a bit: manicures, pedicures, bubble baths, a change in hairstyle, a new exercise regime; whatever makes you feel good about yourself and your body.  The key is to remind yourself what still works, looks normal and be grateful.  There can be pain; more likely than not, so take it slow to start off and always check with your doctor before trying anything strenuous or that can alter your chemical make-up. 

 To quote a cliche, “Life is short”; recognizing what makes you feel better about yourself and doing it can go a long way to making life with rsd/crps bearable.