Written by Guest Blogger Sara
We love to post uplifting stories about people living with CRPS/RSD. But, what about the moments where it is nearly impossible to be positive? Do we let that go unnoticed, or should we reach a point of acceptance that RSD comes with a range of emotions. Sara covers her feelings on RSD and how it is like an angry ocean.
Each day, I face the endless ocean, scanning the horizon, tipping my head to the sky searching for signs of storms. Will the currents be calm, allowing me to drift easily under a sunny sky with my aching and ancient bones; or will the storms clouds gather, thunder booming, lightning splitting the horizon with the surf threatening to pull me under? Navigating life with RSD is a lot like diving into the vast ocean. It’s nearly impossible to comprehend the depth, vastness and magnitude of it; and it’s practically alive. One day calm and “background”, other days it’s a Category 5 Hurricane, tearing apart cities and wiping entire towns off maps.
The days I find the hardest are the days I wake up angry. On the surface, all appears calm. There is nothing that screams out “BE ANGRY,” and yet, I am. I’ll try to shake off the feeling, the same way I try to shrug off the buzzy hands, the stiff joints, the swollen limbs and yet, it won’t go away. I open my browser and as I scroll through my various feeds – Facebook, Instagram, blogs; that angry itch grows. So many people doing things that I miss being able to do, writing about accomplishing x, y, and z while having an autoimmune and loving life. I’m left feeling like a failure. I’m struggling to keep up with the basics. I’m frustrated and angry. I’m angry that I’m angry; I’m guilty that I’m angry. I’ve got a list a mile long and for that, yes, I again feel guilty. While others lead off with, “So grateful to my autoimmune- it’s forced me to slow down and now I smell the roses, enjoy time to knit, learn coding and Chinese, and am grateful to watch each sunset as I haven’t let this stop me or take my happy away!” I’m left feeling frustrated and sad as my list goes more like: “Struggling to find a doctor locally to work with my main RSD doctor, depressed by the amount of medications I have to take, angry and depressed from my Spinal Cord Stimulator (SCS) and the pain and discomfort it causes me, the isolation and loneliness I experience, hearing “but you look fine,” trying to make my body listen to me and like a stubborn child it ignores my command, my treatment is less effective every year, the punishment I get from my body when I push too hard and do too much, the length of time to recover when I do push too hard and do too much, feeling like I’m sitting on the sidelines of life rather than being fully engaged as I once was, being bone tired, yet sleep evades me due to the pain, there is no cure, there is no cure, there is no cure.”
As you can see, my list is less than cheery. I’ve struggled with feeling like a failure as a result. Feeling as though I wasn’t dealing with my disease properly. I spent so much extra energy, time, and stress trying to push my feelings of anger down, away, anywhere really, except express it. Finally, on a trip to the beach, with the sun beating blissfully down and warming my sore bones, the answer came to me. As I idly read the beach signs, a thought occurred to me. Anger is much like a rip current. The ocean may look calm but you can still get caught in the undertow. They are powerful and not to be ignored. If you struggle against a rip, you can tire yourself out and drown, which is how I was feeling trying to bury my feelings of anger and frustration. Instead, go with it. Eventually you will get out of the rip and make your way to shore again. Isn’t that what we are all trying to do? Make our way home. On the days that I’m experiencing anger, hurt, frustration, I let those feelings out. This fall will be 19 years since RSD walked into my life and shattered any sense of normalcy. After nearly 20 years you would think that I would be accustom to this beast. After all, I’ve had it for more than half of my life. The answer is a resounding NO!!! I still rail against it, go back to the day and rewind it in my mind as if I could make it stop, think of the years lost as my ortho told me that the surgery went great and all was fine as I fell apart. Some days, I can put those feelings in a box and on a high shelf, other days they spill out and I have to deal with them. My advice: be angry, be mad, let it out. RSD is so difficult to deal with and it’s a wily beast. It takes every ounce I have and nearly all of my spoons to get through my day. Why waste any of those precious spoons or energy pushing away a completely valid feeling? It would be the same as experiencing a very sad event in your life and doing the old “stiff upper lip, buck up buttercup” approach. Hardly helpful and certainly not doing an ounce of good. When you are angry, I say let yourself be angry. If you wake up 1 week in or 40 years in from your diagnosis and you are mad that you have RSD and you have to deal with the pain and problems associated – be mad! Let yourself be angry! My children have a book that talks about their emotions, how they can be happy, sad, mad, excited. “If you are mad or sad, that’s ok, it won’t last forever.” I love that book. It acknowledges that you can have the less than happy emotions, while saying that it’s ok, and that they won’t last forever.
While seeking out the good vibe blogs is a wonderful thing and I do love a silly animal video, I also think that reading raw, real blog accounts is equally important. Life is hard enough, before throwing in something like RSD. Be kind, and let yourself feel the entire range of emotions. If you’re mad, be mad however that is to you, whether that’s screaming, breaking something, writing something, whatever you need to do to channel your anger. Let it out, don’t swallow it down, in my experience that will only create another current to swim against. Go with the flow of your emotion, and when the feelings subside, make your way back to the beach.
Cheers to being angry!
To read more of Sara’s writing, please visit her blog by clicking here!