One of the hardest parts about living with CRPS is suffering another illness or injury on top of that basic level of chronic pain. It’s like being kicked when you’re down, except that you’re never really up and so every kick seems to happen in the corner of a dark alley and come from the boots of a psychotic mugger who refuses to accept that they’ve already beaten out every single little crap that you had to give.
The worst part is that living with chronic pain can make it a lot easier to end up injured than living in a healthy body. We’re a weak and wobbly breed. In the past three months, I obtained two separate “repetitive stress” injuries from activities that I had participated in one time. One time. My body is aspiring to be that shepherd kid who cried wolf excessively and got his whole damn flock killed.
One of the most common symptoms of CRPS is developing Central Sensitisation, which is kind of the opposite thing to a whole town of people ignoring that wailing wolf kid. Instead of ignoring my body’s cries, my nervous system gets more and more anxious about what’s happening. It starts freaking out about tiny little changes in stimuli as though that change in wind direction is a battalion leading a charging assault.
A regular nervous system feels a twig scratch an arm and recognises it to not be a problem and maybe it’s even helpful if the arm was itchy. An anxious nervous system feels a twig scratch an arm and thinks that maybe that was a machete and probably we are dying now but just in case let’s send in all of the pain and inflammation to make this stupid human realise how much trouble they’re in.
I hurt myself a couple of weeks ago.
It was totally ridiculous. I was lying in bed, like people with beds do. It was morning and my prince had already left for work, so I was waking up slowly and getting me some fluffy dog cuddles. As I lay there on my left side, I wondered, would I be more comfortable on my back? I thought that it wouldn’t hurt to roll over and find out. I was wrong.
I rolled over and a loud crunching sound was heard vibrating out into the depths of space. Agony seized my neck and tiny bolts of lightning began shooting through my upper back. It might seem like I’m exaggerating, however nobody that I’ve told this story to has really seemed to grasp the enormity of the injury. I rolled over in bed, you guys. It freaking hurt and it was a big deal. I realise that it’s not as glamourous as, say, falling off a pretty palomino pony, or accidentally missing a step during a spectacular series of backflips, or saving an orphanage from being obliterated by dragon fire…but it was dramatic.
My body does this strange thing where it overreacts to physical stress, but not until it’s been about a day since the stress occurred. It’s almost like my body spends twenty four hours pondering “Am I really hurt? I think I might be hurt. A thing that happened might have damaged me”, before it decides to lock up in spasm, inflame for “protection” and scream at me using high pain levels.
The result of this delay between the injury and the agony is that I think that I’m alright, continue about my business with a bit of an extra ache and then find myself waking up the next morning unable to do anything at all.
Fun fun fun.
The only situations in which it’s really, truly fun to lie on the couch all day are when you are getting out of something that you didn’t want to do at somewhere that you didn’t want to be, or you have fulfilled all responsibilities and earned a day of lazy. Otherwise, you’re just there because you have to be and does anybody really like being forced to relax? It just doesn’t seem like that’s how relaxing is supposed to work. I’ve had years of forced couch time and I have never found that being too sore to move creates a cool opportunity to chill out.
When I’m injured, I have to put a lot of mental work into not actually going mental. Days pass as I lie there waiting, minutes seem like months and a shadowy demon whispers in my ear:
“You’ve never really gotten any better, all of that improvement was a waste of time. This is your life now, this couch, these screens. Wallow here. Remember when you thought you’d be stuck at this level of inactivity forever? Well, now you are. Settle in, I want to taste your tears. That’s it, that’s it, let them fall from your eyes like the joy has fallen from your life. Feed me your sorrows as your failing body hardens around your squirming soul. This is your prison now. There is no escape.”
It’s fair to say that this is an extreme reaction to a temporary situation. It’s a conditioned reaction from living with my CRPS affected areas that have never actually recovered from their injuries. Many experiences from my early days with CRPS have left traumatic scars.
A mobility limiting injury can throw me back down into a mental world of not coping. My body reacts with anxiety before my mind invents a reason to be racing. I have to pay attention to be able to recognise that this is happening, that my physical sensations are guiding my thoughts and that I have the power to let those thoughts go. I have to find the strength to deny the extra pain and incapacitation as a reason to give up and cry. I have to be strong enough to recognise that (in all likelihood) the injury will heal and I will be okay again. I have to be brave enough to trust my body, despite its history of letting me down. It’s a lot of thinking and realising and letting go. It’s a lot.
After the darkest night of an injury has passed, I am again faced with the daily challenges of living with CRPS, only I am weakened from the weeks of fighting. It’s hard to flick that switch that takes me from crippled and destitute to hopeful and determined. That switch is fickle and flimsy, kind of like the rest of my CRPS ravaged and poorly wired nervous system.
I start out small. I cook some food. I move more and then need to rest more. I usually flare up the injury a couple of times before it is all the way better. I have to. Leaving parts of my body immobile only helps healing during the acute phase of an injury, once I’ve shifted into recovering then I need to work with the muscles to help them remember how to flex without spasming.
I’d say that the key is pacing, but pacing is not a key. Pacing is a tool, an idea, a collection of guidelines. It’s imperfect, it doesn’t always work and it doesn’t often work the same way that it did the last time.
Pacing to increase strength in spite of chronic pain is like trying to use a remote control from just beyond the receiver threshold. It might click if you fluke just the right angle at just the right time, or you might end up waving your arm in the air and pressing buttons until you have to rest but the channel still hasn’t changed and you don’t feel like you’ve achieved anything. The only way to justify hurting myself when I’m trying to pace my activities through a recovery is to remember that if I hadn’t been using the pacing tool then I’d probably be in even more pain from moving too much or too little.
Balance can be an airy-fairy concept.
By the time that I’m coming back from an injury, I am mentally drained. I feel raw, as though the skin on my body has thinned to opaqueness and my mind is too tired for thought. It gets harder to relate to other people for a while, gets harder to listen to their stories, or properly consider their views and feelings. I tend to retreat a little bit, to shy away from social media and often regular media to boot.
Rebuilding strength after an injury doesn’t take as long as it did to gain the strength the first time, however it’s not a quick process. I am finally through the can’t-hold-my-head-up phase of having a strained neck, however I am still far from functioning at the pre-injury levels.
My mind likes to turn physical weakness into mental weakness and so I’m seeing a lot of “You aren’t worth anything, you’re no good, you’re useless and pointless” crap cycling out of Rawthoughtville. I’m recognising and processing these thoughts. Mostly, I process them right into the trashcan in the bottom corner of my mind’s desktop. Sometimes the trash won’t empty because “those files are in use”, but I keep on with the physical pacing and as my body strengthens, my mind catches up.
The most important thing to remember as I cope with an injury is that, to a certain extent, I know what I’m doing. I’ve been hurt before. I’ve been hurt for a long time. I’ve been so hurt that I could not walk or sit up, for a long time. I’ve participated in several pain rehabilitation programs and read more books and articles on the topic than I can remember. I’ve healed before. It’s possible.
I’ll keep going through the motions and the future will roll in like the weather on the winds.
Love & Crooked Smiles,
P.S. This was written last week, however life got in the way of me publishing. My neck is feeling much better now. I feel like I’ve been wandering backwards through life for weeks, but it was ketamine infusion day yesterday and once the hangover passes, I should be back on track! x