I didn’t want to wake up this morning. The truth is, I don’t want to wake up most mornings. We can even take it a step further and say that I loathe going to sleep at night because I know what the morning holds when I open my eyes. Sometimes it’s worth it not to sleep at all. When the effort it takes to sit up, dangle your legs over the side of your bed, catch your breath and get the cobwebs out of your head results in grunts, snaps, pops, and oftentimes screams from the various body parts that are on fire just by sheer movement, you wonder if it’s even worth it. When you rouse your partner out of their blissful slumber because of the sound effects coming from you, it makes it even more frustrating. And sometimes no amount of “it’s OK, I’m so sorry you’re hurting… how can I help? Can I run you a shower? Do you need help to the bathroom?” will soften the blow of starting your day.
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The truth is, you just want it to stop. All of it. At any cost. It’s relentless and unforgiving. It’s non-discriminatory and it doesn’t care if you have plans for the day. It dictates how you spend it, how you spend your time, and what you do about it. You think if you “baby” it, be nice to it, don’t piss it off, it may just let you go to lunch later on. Or to a movie. Or maybe have that date night you’ve been hoping for. So, you assure your other half you’re fine (you’re really not) and tell them to go back to sleep as you limp yourself down the stairs to the heating pad… and the couch. If you can make it down there without throwing up from the pain, or from one of the other various reasons you throw up, you’re already one step ahead. The goal then becomes to continue in that direction, knowing full well you have no control.
Welcome to a day in the life of a complex regional pain syndrome (CRPS) survivor. I use the term “survivor” because I’m not a victim. I don’t want pity. I don’t want anyone feeling sorry for me. I’m not a charity case… financially or otherwise. I’m not looking for hand outs or special favors. And despite how seemingly impossible it feels at times to just get out of bed in the morning, I do. I’m still waking up on the right side of the pavement. That makes me a survivor. There are people who have battled this disease for a lot longer than I have. They are warriors. They inspire me each and every day.
Do you know who else inspires me? Caregivers. The people who love and support you no matter how sick you are. Admittedly, I struggle mightily with moods, depression, and my own pity parties (which is one reason why I don’t want pity from anyone else). It’s not pleasant. I push away those closest to me. I don’t want them to know how bad things really are. Silly me.
When they’re bringing you bottles of water and hair ties to the bathroom because you’re throwing up from the pain, when they wake you up in the middle of the night with a towel and a new set of sleep clothes because you’re soaked in sweat, when they help you to the shower as you’re screaming into the center of their chest because the agony is too much to bear, and then not leave you until they’re sure you’re not going to fall.
They gently exit the bathroom to give you the time and space needed to cry it out and be angry at your situation, only to be waiting on the other side of the door with a towel and a set of clean clothes in their hands… they know. Trust me. They know more than we think they do. They are there for every doctor’s appointment, every hospitalization, every procedure. They’re there for the good news, and their presence is especially felt during the bad. They are huge warriors in my book.
There is no shortage of blogs and publications discussing the unfortunate scenarios of friends and family walking away from those of us with CRPS. I’ve experienced it myself in my own life. I’ve lost a great deal of friends and it’s extraordinarily painful. Either they can’t stand to see the suffering, they don’t believe you and think you’re faking, or they’re just tired of dealing with something that seems to be so constant and unending. Spending any amount of time with us will show you that you can’t “fix” us. There’s nothing you can do to make the relentless pain go away. That must be a very helpless feeling when you care so deeply. Sometimes all we need is someone to sit next to us. Nothing more. Nothing less. But sometimes, even that small gesture can be hard for those who love us. Especially when so much suffering is involved. I believe that’s why most people leave. For whatever reason, it’s too much for them to bare. Caregiver fatigue is alive and well.
What I’d like to do is say “thank you” to the caregivers out there who stick by us day in and day out. Those who stand tall and battle this disease with us. For those who remain strong when we feel weak. For those who refuse to give up on us, even when we’ve given up on ourselves. You are our rocks, our anchor, our safe port in the storm. If no one has thanked you lately, allow me to do it.
I have full body systemic CRPS along with severe autonomic dysfunction. I’m three years in with the official diagnosis and four years in with the symptoms. I have yet to respond to any treatment rendered, and this disease continues to progress. It’s disheartening at times and emotionally catastrophic other times.
Yet, you’ve stayed. You move mountains to get to me. You move mountains to get me to you. I would not be writing this if it weren’t for the unconditional love, support, guidance, understanding, and generosity of heart from my own caregivers, family, and the friends who’ve stuck by me. I can thank you every day for the rest of my life and it still wouldn’t be enough. You’re important. You matter. You are not invisible. Regardless of how this whole thing goes, I am better for having you in my life. I’m willing to bet that I’m not the only one out here who feels this way.
Take a moment out of your day to thank your “person,” your family, your friends… anyone who’s been there for you. It’s not easy to live with this disease, but we cannot forget that it’s incredibly difficult for those who love us to sit by helplessly and watch us suffer. Thank you for helping to make our terrible, tolerable. It does not go unnoticed.
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Thinkstock photo by Tay Jnr
A paramedic, who was injured on the job and as a result of that injury, now has systemic CRPS and severe autonomic dysfunction.
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