I have usually talked about my experience of living with chronic pain in passing during the three hundred and fifty posts that I have previously written. However, today I thought I would shed some light on what it is like living with chronic pain from my own personal experience.
Living with chronic pain is like attempting to function through a torrential storm. A mighty and ferocious storm that wreaks havoc and destroys everything in its sight.
The excruciating pain is limited to my upper and lower limbs, although the pain in my legs is often much worse. The pain is unimaginable; a crushing sensation, as if they are leg caught in a vice which is only getting tighter and tighter. Every step hurts, each step bringing stinging tears to the eyes.
At other times, the pain feels like an extremely unpleasant cold sensation radiating throughout my entire legs; the cold that seeps down right into the bone, feeling frozen and if will snap in half.
It is crippling and unrelenting causing a massive red stop sign to appear in my track; unable to do anything else but think about and feel the intense, uncomfortable pain. Distractions, anything to divert the pain away from the thoughts inside the brain, but nothing works.
Pain consumes everything; a storm that is so powerful and savage causing flash floods. Rough waves pulling at the body, dragging you under, consuming you. And living with constant pain feels like that, it drags you under to the depths of despair. It is all-consuming and relentless.
Living with constant pain is exhausting.
If fatigue weren’t already a side-effect of living with a neurological condition, then the pain would be the cause. Dealing with pain every day is draining, each night laying there all alone with nothing but the pain for company is mentally exhausting. The lack of sleep and fatigue accompanies the pain, following you around after the exhaustive, restless nights. In the chronic illness community, we have a word for this – painsomnia.
Often, as the lack of sleep overwhelms everything else, a nap becomes necessary. But no matter how much sleep we, it is never enough. Sleep never eradicates fatigue. A vicious cycle of sleeping during the day and not being able to sleep at night which is seemingly impossible to break.
Each morning promises to be a clean slate, a new beginning of hope and promise but for those like me battling chronic pain, each new morning starts instead with the shock of crippling and debilitating pain.
It is a constant companion, one who dictates how our day will go and what we can do with our day. We speculate when the next ‘storm’ will impact, although very often these waves continuously crash, pulling us under, our bodies being slammed from every side by the violent waters.
The emotional side effects of living with chronic pain can be just as soul-destroying as dealing with the physical aspects of our conditions.
Pain can make us feel incredibly lonely.
Pain is invisible, and as such nobody ever knows just how much pain we are in, we are expected to participate in society even when we are consumed with the pain. We don’t want to say no or cancel plans we have made, but it feels as if we are being held hostage by the pain and as such we are forced to stay at home, clinging to a raft trying not to be sucked under and sink. Chronic pain and chronic illness shrink your world until you spend your days staring at the same four walls, like Rapunzel trapped inside her ivory tower.
Lonely as we struggle with the painsomnia; lying awake in bed, the pain draining our ability to sleep, alone with only the pain and our thoughts (usually about the pain) for company. We can be in the company of others, a roomful of people and still feel alone; the pain louder than any conversations happening in the same room.
There are times when the pain wins; days when we are worn down by the pain. Days when we don’t do anything besides lie and think about the pain, feeling defined merely by the pain. Pain has a way of making you feel stranded in the middle of nowhere with no roadmap or compass in sight to help you find your way.
Many of us are never without pain, but regardless most days we soldier on despite the pain; we push through the intense discomfort. Despite the constant affliction of pain we continue to hope for better tomorrows. We cling hard to a raft during the torrential storms until it passes and sunshine and rainbows appear overheard once again.
The storm of living with chronic pain cannot be stopped, it is a storm that can only be weathered. The only thing to do when the storm hits is to seek shelter, prevent damage, survive and stay as comfortable as possible while the storm is raging. We embrace self-management techniques; tools that we have built up over time into our very own ‘toolbox’ of strategies that help us manage our chronic pain. Techniques which include strategies such as pacing, relaxation skills, and diet and exercise.
And eventually, the storm subsides, and we breathe a big sigh of relief that it’s over, while also waiting with baited breath for the next storm to arrive…