by Suzanne Burnett Stewart
Welcome to Complex Regional Pain Syndrome Awareness Month! It is November, known also as “KNOWvember” and “Nervember” by different pain support persons & groups. It’s that time of the year when chronic pain patients, Ambassadors, Delegates, pain warriors, and many people who live with this illness, try to reach out to friends, family, the rest of the pain community and the non-pain community; to spread information and gain support of this horribly painful disease.
We post about the fire-like pain and debilitating symptoms of this nerve and neuro-autoimmune illness. I think that some of the others who are our “friends” on Social media get really tired of seeing post after post about pain, illness, and unrelenting symptoms that keep us from living life fully, as most of them get to do. We aren’t trying to take over Facebook or Instagram. We are trying to help others to understand what we are going through. Because nobody knows, unless they truly live with this tremendous amount of daily pain. We see your posts about where you are going and what you’re doing. The trips you take and the places you get to visit. We read about you in the car driving here, there and everywhere; or being at your child’s school events. We scroll down to see the many family members who never even speak to us or even know that we live in daily pain, nor do they ever ask about it or us. We notice the friends who seemed close at one time but after awhile they, too got tired of listening about our pain.
This month is for us! This is a time of teaching, preaching, tweeting and posting. Social media is a great avenue to speak about CRPS and this is a special time of year for those of us who live with this on a daily basis. We actually take this time, not to lament about being in chronic daily pain. We are not complaining or posting of our daily struggles with this “monster.” NO…we are CELEBRATING ourselves because we can! November 7th, was “Color the World Orange Day,” and we celebrate the color “ORANGE” as it is the awareness color of our illness. It’s what brings many of us together. If we are not “celebrating”, then we should be. For one reason or another we are affected by chronic pain. Nobody really knows why any of us were allowed to “get” this painful nerve disease. It is OK to be sad about it sometimes. Take some time to be sad if you need to and then push that sadness aside and do something to help yourself and others. Actually, helping others is a great way to feel better about things in your own life.
There are so many things that we can use as distractions from our own chronic pain on a daily basis. The more you sit and do nothing, the more you wither away into the dark abyss of pain, sadness and nothingness. The more you try, the more you do and the more you can be positive; the better life you will have. Honestly, sometimes I admit that I overdo it and then I “pay” for it later, with much higher pain. I’m not saying to do what I do. That’s actually going too much the other way at times and honestly, I don’t want that for anyone one either. But there’s a “happy medium” someplace in between laying on the bed and/or couch all day and going, going and doing too much until you are in tears because you’re exhausted. This month we are a bit more “busy” chatting and posting about CRPS awareness, but then the rest of the year we should try to do some other things to help ourselves to be happier. Of course, I’m not saying STOP advocating, spreading awareness and doing events, fundraisers etc. for CRPS or any other chronic pain illness that you live with. I’m just saying that we need to have a life outside of illness, chronic pain and CRPS.
There are things that we can do to distract ourselves from the gnawing, burning, aching and throbbing of this “thing” called Chronic pain and/or CRPS. It wants to take over our lives and it will if we allow that to happen. The worst thing that you can do for yourself, is to get in with a group of others living with chronic pain, that are negative, competing to be the sickest and who want to bring you down with them. Instead let’s bring them “UP”, cheer them and ourselves at the same time. Find something that you used to enjoy and modify it to a way that you can start doing it again. For example, I used to be an Interpreter for the Deaf at a major University hospital and several school districts. I lost that after the car accident and I went from Interpreter for the Deaf to Hearing Impaired with 2 hearing aids! I was in performance sign language groups and ASL was a huge part of my life! I thought it was over and gone. Now i make Artistic Sign Language videos on You Tube. I try to find uplifting songs with rallying lyrics and I learn the words first and then just sign the song as emotional as possible while taping it. If I choose the right song, it seems to really resonate with people. It makes them feel emotional in a good way. Sure, I have extra pain when I’m finished, but there are things that I can do to help myself.
Distractions are good if you just don’t overdo it! If you like to be artistic with painting or drawing, you can choose one of those awesome coloring books that they have now for adults too! I thought that I was unable to do that also. My hands hurt as the CRPS and the RA/OA has really gone to my hands and they hurt after just a little while of holding a pen or a pencil. The remedy for that? Find the kind of crayons, markers or colored pencils that are very “chubby” and better for holding onto when you’re in pain. You could also get that “molding material” that is at the craft stores and put it around your favorite coloring utensils; this way making them as thick or thin as you need. There are also little rubber stoppers that you can buy at the school supplies section, to put around the markers or colored pencils. If you like to be on the computer, but you have a hard time using your hands, try the “talk and text” option. You may even get a good laugh out of some things that pop up wrongly when you use it. You can that way fix just a few things instead of having to write everything that you wish to write. There are programs for your desktop or laptop, one in particular that I know about, called “Dragon.” It is much better at being precise and it’s not horribly expensive. If it is too much money for you, then ask for that as a gift from several people for Christmas or your Birthday present.
There are so many things that we can do to distract from the chronic nerve pain that we know is there and we feel every day. It will be there waiting for you when you are done, but for a little while it will be a bit more distant in your mind, instead of at the forefront. There are things such as: knitting, crocheting, painting, drawing, writing, speaking, coloring, “playing” games on the computer, social media, reading and even something like photography. You don’t have to be a professional photographer, but if you enjoy photos, like I do, there are so many free apps (pic collage, Rhonna Designs etc.) to download and “play” with your pictures. If you need relaxing, there are applications such as “Pacifica” that help you relax to different time allotments and music choices. There are even photography apps where you get a prompt daily and you get to be creative in taking a picture and posting it to their website (500px, Little Moments). Some other things you can do might be to learn a language or at least a few new words in a language that interests you? You can do as much or as little as you are able to do and try to take a few moments each day to NOT think about your pain, illness and the next Dr. appointment coming up.
Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children. Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth”(suzydukettes.wordpress.com).