For myself: If someone else were to say these words to me, I would have very little patience. If you haven’t seen every day that has broken me, and every time I have persevered...? I, however, have been with myself every single one of the 2,033 days of #crps. So babe, trust me that this pain isn’t forever. You don’t know is how to deal with it spiraling out of control lately. Needing so much help to do simple tasks. Not knowing what the hell is going to happen tomorrow, or next week, or literally ever. There has always been a path and there isn’t right now. For you that is the worst. Trying to conceptualize THIS life is the worst. But THIS pain, it’s not forever. It may be for a while. It is going to be hard and scary, and you’re allowed to be furious and terrified and exhausted and unsure. But: One day you will be able to keep down water, and then food. One day you will be okay in a car. One day you will be okay for an hour straight. One day you will have consistency. One day you will be able to dream. Because you’ve found your way before. Losing your own body is an awful betrayal. You have to take the time to process this and grieve it and accept it. In whatever way feels true to your 2,033 days in this reality. But, one day the process will shift from a necessary part of life to a choice. You can choose to be constrained and livid. You can choose to find a path again, as you’ve done so many times before. It won’t be without struggle, but it will have hope. The beautiful thing about choices is you can always make them. Every day, every minute, you are capable of making a new choice. Making a 2 mm shift into something really beautiful. Knowing that nothing is forever.
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The past has been on my mind lately. For me that’s never good. I obsess over old conversations and dig up graves that I was happier leaving alone. Times my best wasn’t what I wanted it to be. But do I have regrets? No. The only reason I know I would do those moments over again is because I learned from them. I have changed a lot just in the last year. But I wouldn’t have changed if things hadn’t happened that made me want to be different. Better.
I could not be who I am now, and clear in who I want to be moving forward, without having made mistakes. Clawing and screaming my way through life long enough to make it here. The greatest tragedy of all would be to have learned nothing. So I’m releasing all of my heartbreak and shame and misunderstandings. I hope I am different from five years ago, and I hope I’m even more different five years from now. I hope in that growth is further expression of me removing who society, or my own worst critic, tells me I should be, and is my genuine core becoming stronger and stronger. ⠀ For every moment I would go back and change, there is some reason I find myself inadequate. But the truth is, eventually SOMETHING would have come up to trigger those feelings. For me to learn those feelings existed. For me to decide what I wanted to do about those feelings. For me to become an even better version of myself. Eventually it would have happened, and it would have hurt just as much. The only way to avoid those feelings completely is by not interacting with the world at all... and that’s taking a very lonely path. One that’s probably filled with less growth, too, since there’s no one around to challenge your perceptions of yourself, or of anything at all. ⠀ I choose to be grateful for every stupid, embarrassing, awkward moment. I choose to let lessons go once I see change through in myself. I choose compassion for myself instead of justifying my life to strangers. I choose to be okay with other people not wanting to understand me. I choose to be happy in my humanity. And I choose to show you love and compassion to. I don’t need to know your story. I don’t even need to know your name. You are doing your best and I see you. God bless coworkers that come take your shift from you when you are in flaming white pain. We can’t always get our shifts covered or take a day off. In those cases my best advice to you is BE GENTLE. Three practical tips below! 🏃♀️Move like you are in a jello bubble. By nature I’m a fast paced person. Keeping that pace on a *really* bad day means there are more opportunities for my hair, my clothes, and the air around me to trigger that hyper-sensitivity and make me burn out sooner. Moving slowly is a must if I want to drag out the ‘okay’ moments. 🗣Talk slowly/ softly. I’m shy, but once you warm me up I talk fast and I talk loud. Quieting up is the most natural adjustment for my body to make on a high pain day, because my vocal cords are so close to my pain zones. I know intuitively that if I increase speed or volume, it will hurt me. 🧘♀️Maintain a stress free environment. This is probably the hardest factor to control for, but also the most important. Situations that cause you stress or anxiety trigger the fight or flight response in your brain. When you have chronic pain, especially severe #crps, your body is already in that mode. Additional stress causes more alpha waves to be produced, and your pain increases faster. Putting the feelings and priorities of your coworkers/ boss/ clients on hold so that you can move at a pace that is reasonable for you is not always easy, but over time you learn to drown out the stress of it all. As an empath and over-achiever, this was the hardest thing for me to learn. A consistent mindfulness practice and listening to my body in pain finally taught me how to keep my own emotions even when external stress is present. If you listen to your body first and your mind second, employing these actions will become second nature. These tips won’t save you from a bad day, but they will get you through an extra hour at work or a trip to the grocery store 🧡 Being in so much pain lately, has me feeling more alone than ever. I am grateful for the true friends that I have and people that care. But when it comes down to it,
there is a 24/7 battle between my conscious and my subconscious and that ... is lonely. is painful. is scary. ⠀ A lot of the last five years has felt impossible. If I could change time and live all over again without this illness, I would do it in a heartbeat. Since that isn't realistic, though, I've had to settle for acceptance. ⠀ I have made many choices in finding out who I am and what my life means, just like everyone on this crazy journey called life. Especially since being sick, there are situations that stand out full of regret and embarrassment, and prayers sent out for a crystal ball to tell my future. ⠀ Frequently people insert themselves, believing that they know my situation better than my medical team and I so. They make it sound so simple. “Do this. Don’t do that. Bam! Everything is better.“. ⠀ ⠀ Take a moment to trust me- if there was a simple solution it would have been utilized long ago. ⠀ ⠀ This doesn’t just apply to me. We each have our stories- at least one awful, complex thing that stands between us and life. We have to find our way through that thing. And then the next one. And the next. Fight the battle. Do what you have to do to win. And don't be ashamed of the boundaries and choices you make if it gets you through a time you never thought would end. My silver lining is that I am stronger in every way, more compassionate, and less judgmental. What's yours? 💜 CRPS is an invisible illness. You would barely be able to tell if I didn’t talk about it. I got it exactly five years ago today... and I see it everywhere on my body. I want to honor this anniversary by sharing some things I derive so much meaning from... when others wouldn’t. This post is not about body shaming or self-depreciation, but rather perspective, and why you should never judge a book by its cover. I try not to look anymore- I have worked very hard to separate myself from my “pain identity.” That doesn’t mean my pain is gone. I wish it meant that my pain was gone. I frequently have to do work surrounding my expectations and emotions because nothing eases the pain, but that doesn’t nullify what I have lived. So how does an invisible illness show on my body?
I see clear marks of the last five years: ⚡️Large scars from one surgery, and then another. ⚡️Stretch marks and fat rolls from medication-induced weight gain. ⚡️Discoloration from vascular trauma. ⚡️Deformed shoulder blade movement. ⚡️Tear -stained cheeks from years of instability and heartache. ⚡️The tattoo I got when I was sure I wouldn’t be alive to see this fifth anniversary. ⚡️The smile I love and the capacity for joy that I have FOUGHT for. ⠀ And the things that don’t show: ✨My drive to continually find new solutions and coping mechanisms. ✨The education and insight I have gained. ✨The number of people I have coached through flares or new diagnoses. ✨The fact that my capacity for joy and playfulness scares people sometimes- like I’m a fragile toy that isn’t allowed to have both good and bad days. ✨The doctors that have given up and told me to stop trying and just live with the pain. ⠀ In the last six months, I have both entered and exited remission. That’s a hard thing to accept. To fight through. To choose to win. But because I fight, I get to help others from my own experience. More info on how that will grow soon 🥰🥳💋 |
AuthorHi! I'm Danielle! If you're on this part of my site you, or someone you know probably has Complex Regional Pain Syndrome. I hope that my years of experience can shed some light on common questions and problems! Archives
February 2021
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