Living with Complex Regional Pain Syndrome is like living in a perpetual state of uncertainty and oddity. I laughed reading the prompt for today’s NHBPM challenge because a much more difficult question to answer would be “What’s not weird about my health?”.
CRPS is incredibly hard to to understand, for both regular people and medical professionals alike. No two cases are exactly the same and the colourful array of symptoms that are associated with chronic pain syndromes can be confusing and misleading.
By its very nature, CRPS begins as a weirdo and often remains that way. A giant, overreacting weirdo that swoops in and starts weirding up a person’s life. The pain of CRPS is often defined as out of proportion with the injury (if there even was an injury) and other symptoms can vary so much from day to day that they are impossible to predict.
It’s weird that a body part can hurt that much to begin with, it’s weird that the alarm (pain) system itself can malfunction, it’s weird that the brain and nervous system use their amazing ability of reorganising themselves to actually perpetuate an increase the pain and associated symptoms.
Many people who live with chronic illness struggle to feel understood. It’s hard to be so very far removed from what society understands as normal. Whilst we can relate, in ways, to others living in similar situations, each of our battles are individual. It’s often hard to explain how well we are to other people because the answer is complicated and different for different parts of our body.
For me, the weirdest part of living with CRPS is how very sudden and drastic the changes can be, even from the tiniest changes in stimuli.
I can be walking through my (quite small) home and then all of a sudden need to lie down on the floor because my feet have gone from a dull roar to an agonising, burning level of pain. This usually happens without warning.
I can be cutting up a vegetable and suddenly not be able to tolerate the weight of the knife anymore, let alone accurately wield it.
I can move from inside to outside or outside to inside and have my condition completely change within moments. The most drastic is moving from an air-conditioned room to a humid, Summer’s day. In that instance, you can actually watch my hands and feet swell up and turn red, puffy, slimy and shiny. You can’t see the pain increase, but trust me, it’s phenomenal.
I can be enjoying a social gathering and then become so overwhelmed with the energy of other people that I shake, lose mobility and break out in crazy sweats. Yep, from other people’s energy. Just their existence, their excitement, their very presence can have a physical effect on me.
I can have a normal emotional reaction to something and then have the physical reaction in my body catapult through the skies of intensity, which can be embarrassing. That girl who blushes at anything? That’s me. That girl whose skin drips when she gets nervous? That’s me. Only I might not actually, logically, mentally be nervous. Sometimes my body reacts like I’m in a job interview when I’m actually just talking to a friend and nothing is on the line.
I can also have bizarre reactions to just about anything that a human body can react to, such as: chemicals, foods, weather changes… even clothing.
On the flip side, there are some beneficial aspects to living in such a weird body despite the fact that they come dripping with confusion.
The good emotions are heightened too. I actually have to be wary of becoming too excited, especially when my body is in a flared or weakened condition. Excitement creates as much physical tension as fear and it’s that stiffened, shaking response that can negatively impact my symptoms.
I am more sensitive to other people, to the things that their body says that their mouth doesn’t. I’m still learning when it’s ok to ask about these little flashes of intuition. Nobody wants to think that you can see through them and straight to their secrets and sometimes verbalising a non-verbal communication can make people feel like that. Don’t worry, I can’t read minds or anything, I just feel like I’m now attuned to much more that is going on through the energy of people and things around me.
I can’t always tolerate hugs or the nice kinds of touch, but when I can, they are stronger, fuller, more powerful feelings than they were before CRPS.
It’s nice to note the better sides of the weirdness, however I’d give them back for a chance to live without constant pain. You know, if a genie ever asked.
Until tomorrow, Dear Audy, I leave you with some lovely lyrics from one of my favourite lady singers…
Optimistic but, never quite elegant
Still a weirdo
Still a weirdo
After all these years”
Love & Difference,
This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.