Pain is a more terrible lord of mankind than even death himself. – Albert Schweitzer.
I have a Reflex Sympathetic Dystrophy. At least that was the name it was given when I was diagnosed. Now they call it Complex Regional Pain Syndrome. During the Civil War it was known as Causalgia. The level of pain it causes is measured as one of the most severe on the McGill University Pain Scale. I have RSD but it is not who I am.
It is a chronic neuro-inflammatory disorder which occurs when your nervous system and immune system malfunction in a response to tissue damage from trauma. The nerves send constant pain signals to the brain. This happens even when there are no painful stimuli present. Everything is interpreted by the nerves as painful. The touch of fabric on the affected areas is perceived as pain. So is air. Showering can be excruciating as both the feeling of water cascading on the skin and the warmth of the water are deciphered as painful by the brain. This is called allodynia.
There are physical changes that occur as well. Abnormal swelling, nail and/or hair growth, sweating, skin temperature, and skin color changes can all be present. There is limited range of motion, and weakness.
It has been more than 16 years since I had the botched lumbar puncture that led to my RSD and there has not been a single moment in all that time I have had no pain. RSD can wax and wane and some patients even go into remission so there is always hope.
This condition has affected every area of my life. My activities have been drastically altered and some things I’ve had to give up completely. My relationships have changed because of my condition. Everything I do is a balancing act between my desire to do something and the pain it will cause.
I’ve known more than a few people with this horrible condition who have taken their own lives rather than live with the pain one more day. Many marriages have broken up because the healthy spouse tires of caring for the patient or simply gets tired of hearing complaints about pain.
RSD is an insidious thing that can rob you of everything that made your life happy and fulfilling. But it is also possible to have just that kind of life in spite of the pain. Making adjustments is paramount. I adapted the way I do things and I adapted the way I think.
I will never get to ride a horse again but I still love being around horses. I can’t cook or bake some of the things I would like to try making because doing so would be too physically taxing. But I can cook and bake a lot of things. I can’t maintain my flower gardens and my vegetable garden so I choose which I want to devote my strength to and concentrate on that one.
This is not to say I don’t mourn for the life I cannot have. I wish I could run around the yard with my grandchildren. I wish I could take the road trip to visit my older son. I wish I could go for a long walk through the woods or on a beach. But I can’t do those things. So I try to find things that I can enjoy just as much.
RSD is something I have. It is not who I am. Beneath the mottled skin that is cold to the touch and the bones that are deteriorating I’m still the same person with the too-loud laugh and smart ass sense of humor. I’m still madly in love with my husband and I still know my kids and grand kids hang the moon. And I still have a wonderful life. My body hurts but I won’t let RSD make my soul hurt.