It’s strange to realise that you need to take a break from social media, especially when it’s your only little window to the outside world. I’ve been dark for a couple of months, eons in internet time. I needed to take a break. I needed the quiet. I needed things to change. I needed to change. I just needed to…not…for a while.
I couldn’t be here anymore. I couldn’t figure out how to relate to other people. I couldn’t remember how to talk to them, how to listen to them, how to understand anything. Yet, I was trapped in the cycle of being a social media participant, a blogger and a person wanting to spread awareness about life with CRPS.
When I tried to express myself, I felt like I was a person trapped inside a bear, roaring my truth but only emitting “RARARARGARGARARAAAAAAH”…to which the response was a smile, a pat on the head and a “there, there, you silly, noisy bear”.
CRPS gets worse at times and it usually doesn’t make any sense at all. The only thing that I can think of as an appropriate label for what began a few months ago is a progression. More like when CRPS spread from one region to another in my body than a flare up of severe symptoms. I find it so hard to describe how it felt, but now that some time has passed and I’ve had to refer to the situation a few times, I find myself repeating that it “went left”.
This might be hard to understand in light of the fact that I already had symptoms throughout my left side and before it “went left”, my left hand regularly displayed the worst symptoms of all the regions in my body. So, what do I mean by saying it went left? It already was left, right? Yeah, kinda…we’re through the looking glass here guys, don’t go looking for logic.
Unfortunately the “S” in CRPS stands for “Syndrome”, not “Sense”. Syndrome is a word that we use to try to explain a group of symptoms. The problem with groups of symptoms related to a malfunctioning nervous system is that they are like your arsehole neighbours. They will invite new, noisy friends over whenever they damn well please. Syndromes don’t have to make sense. Once they start getting all explainable with things like clear pathologies, we call them diseases. Syndromes feel oppressed by diseases, they don’t want to grow up and be boring like cancer. They are the angst-ridden teenagers of diseases whining: “Don’t try to tell me who I am, man. I won’t be defined by your rules, I do what I want!”
I never expected my sensation of having a body could be split down the middle. It was like being struck by lightning, but just on one side. Slowly, the extreme pain on the left began to creep into over into the right limbs, yet the sensation of having two very distinct halves of my body remained. It got bad, really bad. Struggled to lift food into my mouth, bad. Struggled to go to the toilet alone, bad. Struggled to even see the point in continuing to fight, bad.
Doctors will have patients rate their pain out of 10 so that they can get some sort of idea of what they’re dealing with. A 10 is supposed to be the worst pain that you can imagine. I’ve refused to rate my pain 10/10 for a long time because it always seemed like once I did that, the pain would try to beat its high score. I’d have pain that involved struggling to breathe, tears streaming in the absence of consciously crying, my face pulled back into a grimace so extreme that I felt like a cartoon and a certainty that any second I’d lose consciousness and I’d think “yep, can’t really imagine it getting worse than this” and I’d rate it 10/10 and the next thing I’d know things would get worse. Unimaginably worse. Literally. So, I started rating these episodes 9/10, sometimes a 9.5, I just didn’t want my show-off of a nervous system getting cocky.
When my CRPS “went left”, a 10/10 became more like a 5/10. My nervous system was all “Hey, Caf, you know how you couldn’t imagine pain worse than that awful thing that I was already doing to you? Well, I can double it. Yep. Double. Aren’t I clever?”.
Things could always be worse. People in chronic pain tend to hear this phrase more than most. Some people think that it’s comforting to hear all the ways that you could be suffering that are worse than the ways that you are already suffering. Just for the record, this is not comforting at all.
Telling a person in chronic pain that things could be worse is like telling someone who is burning alive that at least they aren’t drowning and then expecting them to shut up and just burn quietly and gratefully.
If I’m in a mental place where I’m able to be grateful for the parts of my life that don’t suck, then I will do that. If I’m not, I can’t make the grateful happen just because you tell me to. When I’m feeling depressed, telling me that things could be worse actually has the opposite effect to that which you intend. I feel overwhelmed with sadness at the thought that life can be so horrible for so many people. I don’t feel better because I’m not them. Feeling better because others are worse off is not how I understand “grateful”, that’s how I understand “being a jerk with a superiority complex”.
When the pain progressed, it took all my energy to cope badly, let alone trying to find a way to cope well. I was already incapacitated enough by pain to be considered a disabled person and then suddenly it all just amplified. I fell off a metaphorical coping cliff and it was all I could do not to feel like jumping off a real one. I had no strength left to let the comments of others wash off my back and not enough clarity to let go of the idea that I should be better at coping by now, even though the game had changed.
“Hey, Caf, you know how you couldn’t imagine pain worse than that awful thing that I was already doing to you? Well, I can double it. Yep. Double. Aren’t I clever?”
I felt like a raincloud that was hovering over my online world and pouring down on the parade of people that bothered to be a part of that world. I hid from the internet and most people in the real world, too. I figured that if interacting was making me feel worse instead of better then I probably shouldn’t be interacting. I turned off all my social media notifications and deleted the Facebook app from my phone – mainly because I couldn’t trust myself not to check it compulsively, before I remembered that I needed some alone time.
I have to reframe how I see myself and how I want to interact going forward and the truth is that I don’t have all the answers. I’m not entirely sure what I want to share anymore, or who I want to share it with. I don’t really know what I’m capable of, physically or emotionally and I also don’t know when or how that will change again.
I aim to continue trying to cope as best I can with the crap that CRPS throws my way, that is all. I have neither the strength nor stability for plans or promises.
Hope will have to be enough for now.
Love & Blind Hope,