I Can Niko

The purpose of this blog isn’t for me to complain, but to comment on my life with a chronic pain syndrome, which of course includes pain. Even though pain is a part of my everyday life, it isn’t always the thing that most affects my life. Sometimes the emotional struggles are just as difficult as the physical ones.

I realized the other day that I had not used my left arm normally in more than six months. I have not folded my own clothes, zipped a Ziploc bag, or clapped my hands in half of a year. I remember being insisting that people know my correct age, in half-year increments, when I was a child. My half-birthday was a big deal to me each year. That half of a year was important, and now my half-“birthday” of my injury has approached and passed almost without notice.

At first, thinking of the things I’m missing out on were a huge disappointment. After all, there are so many things I can’t do and may never be able to do. I think of the brand new pair of boots in my closet that I can’t tie, the half-finished scarf on my knitting loom, or the new material I can’t quilt. I pondered of all the frustrations I have faced and will face, including toilet paper out of reach, containers I can’t open, and meat I can’t cut.

While I was mourning the things I felt I had lost, my friend asked me if I felt like I had accomplished anything by overcoming my current one-handedness in order to do everyday tasks. At this point I began to think of the things I’ve accomplished. I can put on my clothes without touching my left arm, I can type fairly well one-handed (about 30 wpm, compared to 90 wpm before), and I can open and I can do a little dance while carrying a backpack, a pillow, and a key card while unlocking and opening the door to my dorm and not touching my left arm to anything. Not just anybody can do these things (though I’d like to see them try), in fact I only learned them out of necessity.

Loosing one part of your body requires compensation from the other parts, including your brain. I love being creative and figuring out puzzles, and living with CRPS in one arm makes my whole life a puzzle. Each normal daily activity that could originally be done without second thought requires careful thought and consideration. Do I really need to do it? Can I do it myself? Is it worth the pain it might cause? Is it worth asking someone else to do it for me? Is it something someone else can do for me?

I’ve learned to cope with the life God has handed me, but that isn’t enough. I’m not willing to sit passively and feel sorry for my lack of a working arm, I’m going to fight for all I’m worth to keep my independence and learn to overcome the things life hands me with a positive attitude.

That brand new pair of boots in my closet, the ones I can’t tie? They are the same kind of boot I wore on a leadership survival type week out in Wyoming (the original pair had a stitching defect that resulted in large blisters, this pair is identical, but brand-new and defect-free). During that week, I did things I never thought possible. The week was called Niko, which is Greek for overcome, because of the many things we overcame during the week. I believe God allowed me to get that identical pair of boots as my new “Niko boots” because I’m going to continue to learn to overcome.

I still feel a longing for certain things I can’t do with one hand. The thing I long to do more than anything is curl up on my left side, how I used to sleep and sleep one, long peaceful night. At the same time, I can feel I’ve accomplished something, I’ve learned to overcome, I’ve learned to Niko my one-handed life, and that isn’t something to regret, but something to be proud of!

A Complex Explanation

Two months ago, I had never heard of Complex Regional Pain Syndrome (CRPS), but those four letters have changed my life. It is amazing how a few words from a doctor can make such a significant change in your life. Just as I had not heard of CRPS, I cannot assume you have, though there are more than 1.2 million people in the United States alone who are suffering with this disease formerly known as Reflex Sympathetic Dystrophy (RSD).

I’m writing about my CRPS not because I want to scare you by letting you know a little of the pain I’m in, but because I want to spread awareness. In spite of the fact that CRPS is fairly common, it isn’t well known, even in the medical community. Many doctors have not heard of CRPS before, which can be tragic for those who get it because treating it early can prevent worsening, spreading, and possibly put it into remission.

So, what is it? CRPS is a nerve disorder that causes severe chronic pain. Its name is actually pretty self-explanatory, if you look at each of the words in its name (some of this information is from the RSDSA web site).

Complex
means that physicians do not know why it develops or what causes it and there is no known cure. In spite of the fact that it was first mentioned by a Civil War doctor, it has only been studied recently, so there is very little known about it at all. They do know that it is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, in my case the moving of my nerve in surgery. This syndrome may follow 5% of all nerve injuries, but can also be caused by a seemingly minor injury, such as a sprain.

Regional
means that it is usually contained to one section of nerves, in my case, the left arm. Though it is usually regional, it can spread to other parts of the body, including the opposite arm, legs, trunks, neck, or even head. The pain in my arm is the worst on the medial (inner) side of my elbow, but has spread to my wrist, hand, and a little into my shoulder.

Pain
seems pretty obvious, but CRPS pain is unique, it is said to be the most painful chronic pain syndrome, even more painful than cancer. I am extremely grateful my pain hasn’t gotten this bad, for the measures the doctors are able to take to help me with my pain, and the fact that God blessed me with a very high pain tolerance. Patients with CRPS often describe their pain as burning, throbbing, aching stabbing, sharp, tingling, and/or crushing.

Syndrome
indicates that CRPS doesn’t just cause pain, but other symptoms as well. Not only does it affect my hand, arm, and elbow, but it can cause problems with memory, concentration, attention, and word recollection. The pain often makes it difficult to sleep, and insomnia or lack of deep sleep is also common with CRPS, which complicates concentration further. Imagine trying to concentrate or sit still while someone rubs rough sandpaper on your entire arm. Some days, even wearing a shirt, a gentle breeze, or slight vibrations cause pain in my arm worse than rubbing sandpaper on my arm. Some other symptoms may include swelling, abnormal skin color changes, skin temperature, sweating, limited range of movement, or movement disorders.

What to find out more? Visit one of these web sites:

Reflex Sympathetic Dystrophy Syndrome Association
International Research Foundation for RSD/CRPS
Reflex Sympathetic Dystrophy Hope