A Day in the Life With RSD

{As I prepare to walk for RSD tomorrow in Central Park, I’ve been thinking about why awareness and a cure are so important. This is a piece that I wrote during one of my major RSD flares. Thankfully, I am in remission now, but that is not the case for many RSD Warriors.}

I start each morning with an alarm that wakes me up. No, not from a clock. Instead, the burning pain in my leg greets me. I try to roll over, desperate to forget the pain and drift back into dreamland. Squeezing my eyes shut, I attempt to fall back asleep. Did it work?  Nope. I guess I’m awake for the day.

As I lay on the mattress, wrapped in blankets everywhere except for my leg, I do not want to get up. Just reaching my arm out for my phone takes tremendous effort. I decide to stay in bed for a while. Not reading, not sleeping, not watching TV. Just laying there, staring at the ceiling. It hurts to move. It hurts to breathe. I try not to think too much, knowing that I can easily begin a downward spiral of thoughts. I give myself a pep talk. “You can do this. You can get out of bed. One step at a time. One day at a time. And hey, coffee is waiting downstairs. You can do it.”

After an hour or two of trying to convince myself to get up, I finally sit up straight. “Woah, hold on. I’m dizzy” I think, then lay back down. It takes a few tries, but finally, I am ready for the day. Taking a long sip of water, I put on a new shirt and pair of sweatpants, careful to not let the fabric touch my burning leg hope nobody notices that I’m wearing the same rolled-up pants that I wore yesterday. I just don’t feel like dealing with that today. Grabbing my computer and backpack, I make the journey down the stairs. One crutch at a time. Click, clank, clunk.

Phew, I’ve made it downstairs. I’m glad that I will only have to face those 14 steps one more time today. I head to the kitchen, eager to taste the first sip of my morning coffee. After all, that’s why I got out of bed. Ah, such a lovely aroma and perfect flavor. Now it’s time for breakfast. Am I hungry? Not really, but I should probably try to eat something. I search the kitchen for something bland, some sort of food that won’t increase my nausea or stomach pain. Dry cereal? Nuts? An apple? Sometimes it’s too hard to think about eating, so I put that activity off for a few hours. Coffee cup and water bottle in hand, I make my way to the couch.

I mindlessly reach for the remote. Having the TV on helps add some white noise and distract me from the burning and itching in my body. I gear up for my morning marathon of talk shows, only half paying attention. Ouch, did someone just throw a dart at my foot? Time to change position to try to get comfortable. I try sitting with my leg crossed, then attempt elevation. Nope, not helping. Maybe if I lay down? Sit sideways? Still no relief. I guess I’ll just have to grit my teeth and bear through it, as always.

I open my computer and scan through my Facebook feed. Oh, Martha got engaged. Good for her. Stacy is complaining about her classes again. At least she gets to go to school. Another selfie from Julie. Shocking. Maybe I should post a selfie of the life of someone with chronic pain? I’m sure I’d get lots of likes for the bags under my eyes, evidence of a sleepless night. I read through some blogs, feeling encouraged that I’m not alone in my struggles.

Okay, 3 hours have passed. Maybe I should do something productive with my day. I know…I’ll bake some cookies. That always cheers me up. Oops, here comes the brain fog. Forgot to add the sugar. I guess I can just tell people they’re “healthy” cookies. Who needs sugar anyways, right? Well, baking failed and now I’m feeling more exhausted. But I don’t want to feel so lazy, so I’ll sit at the kitchen table and try to study for next semester’s class.

I open my textbook and am reminded why I’m not in school right now. In the school vs. treatment battle, my health won the spot for most important thing to do. That’s okay, school will always be there. I begin to read. Soon, the words on the page become a jumble of letters. Four pages later, I’m not sure what I’ve just read. Eh, I’ll save that for another day. This pain is too much to fight against right now. I think I’ll head back to the couch.

Snacking on some (gluten free) pretzels and hoping they are kind to my stomach, I flip the TV back on. Oh great, it’s Dr. Oz telling us how to lose more weight. I don’t care about my weight right now. I don’t care about much, just the fact that I feel like I am burning alive. Ugh, when will this end? I contemplate taking some pills to knock myself out. Nah, they don’t work. I get up and pace the room, hoping that the movement of my crutches will make me forget the excruciating pain in my leg. Wishful thinking. I spend the next few hours trying to distract myself. My parents come home and try to talk to me. I can’t even open my mouth because I know that my words would not be laced with kindness. I don’t want to start a fight. I give them a sign to indicate that it’s a bad day, hoping they will leave me alone. They do.

I make myself some dinner. I can’t even think straight, so it becomes a random assortment of food. I see an alert on my phone: TREATMENT. TOMORROW. 3:00. Great. More torture. At least today I didn’t have to go anywhere. I begin to dread having to go to Physical Therapy. Oh yeah, and I forgot to call the doctor yet again. I guess that can wait. I get halfway through my meal when the nausea is too much. Well, at least I tried. I’ll eat another snack later.

Finally, nighttime rolls around. Time to catch up on the lost sleep from the night before. I climb into bed and close my eyes. Minutes pass, then hours. “Really?! I am so tired. Why can’t I just sleep?!” I want to scream. I decide to watch Netflix. Maybe a funny movie will get my mind off things. I just get annoyed by the lights and sounds, then become more awake. I can tell that restful sleep isn’t going to happen tonight. I drift in and out of consciousness, only getting about an hour of shut-eye. Before I know it, the sun is rising and a new day in hell is just beginning.

This is just one day in the life of an RSD/CRPS Warrior. This is what is hidden behind fake smiles and positive words. The pain never ends. We still have things to do, yet too often, the agonizing discomfort prevents us from having a full life. We are often left to simply survive, rather than truly living.  This is why we need a cure for RSD/CRPS. Life should be embraced, not dreaded. Help put out the fire. Spread awareness and donate to research. 

One day, this pain will end. One day, we will all be free.