Living with CRPS

Living with CRPS is hard. Hard doesn't seem like a strong enough word.

CRPS pain is medically ranked as being worse than the most painful things people can imagine - amputation, kidney stones, child birth. It's not merely the pain, though. People have a weird relationship with pain... from the time we're kids we're immediately taught to ignore and override, to focus on when it'll be all better again. Naturally, when someone hears we LIVE IN pain, I believe they simply can't process the concept. Why can't we look ahead to the future, push it aside in the moment, and "get over it"?

Hey, I know you're paralyzed, but just get up, walk over there, and climb the stairs. Push through. Get over it. Look to the future, when it's all better.

Hear it now? I would never dream of saying that to someone with paralysis, but it's a sentiment commonly said to people with severe pain conditions, like Complex Regional Pain Syndrome. 

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My life with CRPS has been tumultuous. The pain burned away youthful experiences, friendships, life plans, and bits of me. CRPS isn't just pain, though. It's not knowing what temperature something is, having sporadic muscle spasms or tremors, swelling, skin changing color, memory problems (ranging from I don't know where my keys are to I don't remember the object name of something I use daily 😬), problems regulating & managing adrenaline levels (ya know, that whole fight/flight/freeze switch), shock becomes a NORMAL phenomenon when our bodies reach their limit which happens often, and so much more. It's a lot. I'm exhausted on words to describe this condition and the chaos it creates on your life. ​

CRPS hit me when I was 18. First year of college. New place, new friends, and then CRPS exploded all over it. I lost friends, had trouble making new ones, got labelled as difficult, got denied accommodations because I didn't have a diagnosis, no one believed me, when I talked to people about medication they referenced House, doctors kept saying I was fine or were hopeful they could write me off as depressed or suicidal, family back home didn't believe me. I went from horse trainer to baseball photographer to existing in a chair by a window. 

So we've got pain, associated symptoms, lack of understanding & denial that we could be disabled by it, it re-routes our life plans (and for some completely derails any plans), and then we get one more thing.

We get ostracized by society, medical professionals, our communities, our friends, and our families.

We live with pain that rivals torture. And we've adapted to it. Pain is normal. Fine. That does change us, it has to, and yet, when our change is out and about where people can see it and hear it, it's completely unacceptable. We're "out of line", "unfair", "judgmental", "overreacting."

Researchers have found CRPS slowly re-writes how our entire central nervous systems functions when the condition is full body (like mine is). Even in the people where it stays localized, your brain is changing how it processes information, handles stress, perceives a situation, and how it responds in any given moment. Our brains are different now.

I am constantly evaluating every action or choice in my day to minimize pain, strategize how I'll handle a flare, what flares are possible if I choose to do A over B, and new situations are stressful because I know I'll have to adapt to unknown variables on the fly.

Healthy people would judge me (and they have) with saying that's just me being anxious or hyper-vigilant, casting it immediately as a bad thing.

I'll give them hyper-vigilant, but for someone with CRPS, it's not a bad thing. It's a skill for being practical about my world, my condition, and preventing flares to keep me more functional. It's a skill that's been incredibly helpful in learning how to train service dogs for CRPS, for seeing ahead to how I need to help the dog's learning get from point A to point F, and planning out where a service dog can help or can't.

New places and situations are also stressful because I don't know how they'll mesh with my service dog. Before I go to new locations - events, restaurants, etc, - I try to find photos of the space online to help myself strategize safety for myself & maneuverability for my service dog, or to know ahead of time it isn't a safe zone for my team and to decline. 

Why the long post about CRPS?

1. Awareness for the condition
2. Brand recognition: Hi, I have severe full body CRPS & I teach people how to train service dogs for it, as well as how to train a pet dog to be less of a jerk. My nervous system has a really hard time being around dogs, and I'm extremely aware of their behavior & mistakes because they literally hurt me. This helps me be more aware of all the possible ways a dog could be adding stress to your life without you necessarily being aware THAT'S where that nagging stress feeling is coming from and I want to help you have a better life with your dog. And I want to make the communities out there safer for service dog teams who encounter other dogs.
3. As a reminder to anyone dealing with CRPS right now, it's OKAY to let go of people who aren't supportive of the you who you are with this condition

I have been holding on to the idea of support from the people who raised me, for too long. In my head I have this ideal picture of what love and support should be like from family, and I've been busting my butt for the past 13 years to teach them, explain my condition, explain how it's changed me, and been holding onto this illusion they've been listening & comprehending.

Turns out, they haven't. At the start of all of this for me, they didn't believe me, not fully. They agreed something was wrong but wanted it to be from a bad childhood or depression. When I'd say I couldn't do something because of the pain, they teased me. When I finally got a diagnosis and went to them for support and reassurance, I got told to be better than my condition, to not let it define me, that I didn't have to let it change me.

Have you heard that?

CRPS is life changing. Period. It doesn't have to be life-ending, but it does change your life, your plans, your mobility, your needs, your goals, your perception of the world around you and how you need to interact with it, and how your body & brain work.

Anyone who perpetually denies those facts doesn't hold a spot in your support circle. It took me too long to make that call. It hurts, and it's what's best for me.

CRPS is exhausting enough. You don't need to hold onto relationships that hurt you, just because of the feeling of obligation. People can absolutely change with you and learn to accept your condition - I've seen it. I've also seen and felt when people agree to your condition, agree it's real, and keep telling you that you don't have a right to act like it's changed anything.

It's changed everything.

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Coaching for people new to CRPS or feeling stuck with it is one of the services I offer, because we need more people out there ready to listen and share advice for living with and managing this condition. Overwhelmed in the learning phase? Come talk to me - I've been there. Got questions? I'll do my best to answer them, find an answer, or genuinely say I don't know. Curious about service dogs? Ask away!

I live with CRPS and I am a CRPS resource for you.